SUA Resource Library: 

Other Materials 
Foreword 

In 2012, the Administration for Community Living (ACL), an operating division of the US 

Department of Health and Human Services, began a comprehensive evaluation of its National 

Family Caregiver Support Program (NFCSP). This was the first comprehensive federal evaluation 

of the NFCSP, which serves over 800,000 family caregivers annually. The NFCSP evaluation has 

three broad goals to benefit policy and program decision-making: 

1. Collect and analyze information on program processes and site operations; 

2. Evaluate program efficiency and cost issues for approaches best suited to specific 

contexts; and

3. Evaluate effectiveness of the program’s contribution to family caregivers in terms of 

maintaining their health and well-being, improving their caregiving skills, and 

avoiding or delaying institutional care of the care recipient.

As part of the evaluation survey, State Units on Aging (SUAs) were asked to submit relevant 

documents if they answered ‘yes’ to any of the following five questions: 

 Do you have a statewide task force, commission or coalition specifically to examine 

family caregiver issues?

 Have community needs assessments for caregiver support services been conducted?

 Does your state have a standardized caregiver assessment?

 Does your SUA conduct routine programmatic monitoring of the NFCSP program?

 Do you use a uniform caregiver satisfaction survey across all AAAs?

ACL received assessment tools and grouped them into the following categories:

1. Community Assessment Materials

2. General Customer Satisfaction Survey Materials

3. Grandparent Assessment Materials

4. High-Level Administrative Materials

5. Program Monitoring Materials

6. State Caregiver Assessments

7. State Care Recipient Assessments

8. Task Force Materials

9. Uniform Satisfaction Materials

10. Other Materials

While ACL does not specifically endorse these tools, we are sharing them because they may be 

helpful to other programs. For more information on the NFCSP please go to: 

http://www.aoa.acl.gov/. For more information on the evaluation of the NFCSP please go to: 

http://www.aoa.acl.gov/Program_Results/Program_Evaluation.aspx
Other Materials 

Georgia CARE-NET Coalition Overview ......................................................................................................... 3 

Oregon Family Caregiver Handbook ............................................................................................................. 5 

Oregon Family Caregiver Intake Form ........................................................................................................ 85 

Oregon Relative as Parents Program (RAPP) and Family Caregiver Support Program Quarterly Meeting 

Summary – January 6, 2015 ........................................................................................................................ 87

South Carolina Alzheimer’s Disease and Related Disorders Respite Voucher Application ........................ 91

South Carolina Confirmation of Grant Award ............................................................................................. 94

Texas Evaluation of the Systems Integration Efforts of the Department of Aging and Disability Services: 

Texas Lifespan Respite Care Program and Texas Respite Coordination Center – August 2014 ................. 95

2
The Georgia CARE-NET Coalition 

The Rosalynn Carter Institute for Caregiving (RCI) and its partner CARE NETS have established a state-wide 

advocacy group to promote the health of Georgia's caregivers; family and professional. In America today more 

than 50 million family caregivers provide the largest proportion of care for dependent elderly individuals as 

well as adults and children with disabilities and chronic illnesses. The health and well-being of these family 

caregivers is rapidly becoming a major public health concern. Research has found that family caregivers report 

frequent mental distress, have more illness including high rates of clinical depression, and more health problems 

in general than the non-caregiving population. Too often, caregivers are viewed as expendable resources and are 

overlooked and ill-prepared leading to damaged health, high levels of stress and burn-out. 

Our view, in contrast, is that family, professional and para-professional caregivers are the most valuable asset in 

any care system; a resource that can be cultivated, preserved, developed and valued by the community. Our 

approach emphasizes strategic investment of community resources in building caregiver skills and supports and 

protecting caregiver health.

Beginning in the 1990s, RCI developed the CARE-NET (Caregivers Network) program as a unique coalition of 

caregiver support organizations across a broad array of illnesses and disabilities. The coalitions involved leaders 

and advocates from community and state agencies, private corporations and churches together with family 

caregivers in the same planning process.

The 12 community CARE-NETs, one in each Area Agency on Aging district in Georgia, has been supported by 

grants from the Pew Charitable Trusts, the Robert Wood Johnson Foundation, and the Administration on Aging. 

These active and ongoing coalitions are highly suited to address the major needs of all caregivers. The CARENET coalition provides ongoing assessment of community resources, identifies and remedies gaps in services, 

shares information and resources among agencies, develops strategies for complementary professional and 

family caregiver activities, offers caregiver education and, most importantly, advocates for caregivers. Today, 

this caregiver network represents a unique resource in the state of Georgia and one of the most promising 

opportunities for developing comprehensive caregiver supports anywhere in the country. 

Each year the CARE-NET Coalition members sponsor caregiving conferences highlighting the work and lives 

of family caregivers throughout the state. Georgia's CARE-NETs are Leaders in Supporting Family and 

Professional Caregivers in their communities. They are made up of volunteer leaders from a wide range of 

agencies and organizations, as well as family caregivers and care recipients.

CARE-NET has quarterly meetings. In the past year (2015) our speakers and topics have been:

Cindy Holloway, RCI Care Consultation

Leesa Rickman and Mary Whitfield, Middle GA CARE-NET, Taking Caregiver Programs to Rural 

Communities 

Joy Shirley and Mona Browning, Three Rivers CARE-NET and AAA, Be There 4 Seniors Rally

Former First Lady Rosalynn Carter, Updates and Information on Caregiving from a National Perspective

LaToysa Rooks, Lewy Body Dementia Association, Inc., The Different Dementias

Maureen Kelly, ADRC, Advocacy – Engagement for the Greater Good

Cameron Bishop, Methodist Children’s Home, Creating a Sanctuary at the Home. 

Laura George, Emergency Management Disability Liaison, Preparing for an Emergency or Disaster 

The next speaker will be Amy Boney, Lighthouse Children’s Advocacy Center and Karen Cooper with Myrtle 

Habersham AARP, they will speak on RCI’s/AARP’s Training: Caring for You, Caring for Me Implementation 

in GA 

Georgia CARE-NET Coalition Overview 3
Dr. Leisa and Elaine Larkin share an update on RCI activities at every quarterly meeting and discuss 

opportunities for CARE-NET involvement. 

• CARE-NET Electronic Newsletter Publication

The Caregiver’s Advocate newsletter was released on March 31, 2014 and June 30, 2014 with excellent 

feedback. The next edition is planned for September 30, 2014. This publication is distributed to multiple 

subscribers via the RCI LIST Serv. We strive to keep the database up to date and add names continuously. 

Leisa Easom, PhD, RN

Executive Director

Pope Eminent Scholar

Rosalynn Carter Institute for Caregiving

Georgia Southwestern State University

800 GSW University Drive

Americus, GA 31709

229-931-2062

Leisa.easom@gsw.edu

Georgia CARE-NET Coalition Overview 4
Family Caregiver Handbook

A guide for family and other unpaid caregivers who care for older adults 

or persons with disabilities

OREGON DEPARTMENT OF HUMAN SERVICES

Oregon Family Caregiver Handbook 5
The Oregon Department of Human Services (DHS) wishes 

to thank the Washington State Department of Social and 

Health Services Aging and Disability Services Administration 

for allowing DHS to adapt its well-respected Family 

Caregiver Handbook. Many Oregon family caregivers will 

benefit from the information presented in it. Many thanks to 

our neighbors to the north!

The Family Caregiver Handbook can be accessed and 

downloaded at www.ADRCofOregon.org.

Oregon Department of Human Services

Aging and People with Disabilities Program, State Unit on Aging

Oregon Family Caregiver Handbook 6
Oregon Family Caregiver Handbook 7
I have the right:

To take care of myself. This is not an act of selfishness. It will enable me to take better care of my loved one.

I have the right:

To seek help from others even though my loved one may object. I recognize the limits of my own endurance 

and strength.

I have the right:

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were 

healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some 

things for myself.

I have the right:

To get angry, be depressed and express other difficult emotions occasionally.

I have the right:

To reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt, 

anger or depression.

I have the right:

To receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these 

qualities in return.

I have the right:

To take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs 

of my loved one.

I have the right:

To protect my individuality and my right to make a life for myself that will sustain me when my loved one no 

longer needs my full-time help.

I have the right:

To expect and demand that as new strides are made in finding resources to aid physically and mentally 

impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

First appeared in Jo Horne’s book Caregiving: Helping an Aging Loved One

(AARP Books, 1985)

Caregiver’s Bill of Rights

Oregon Family Caregiver Handbook 8
Introduction..........................................................................................1

The Family Caregiver 

Support Program.......................................................................................................1

Internet resources .....................................................................................................1

Changing roles and relationships .......................................................2

Safeguarding the care receiver’s dignity and choice..............................................2

Caregiving and family relationships...................................................................2

Getting the information you need to provide quality care ...................................3

Working with doctors..........................................................................................3

Providing day-to-day care...................................................................5

Bathing .................................................................................................................5

Shaving.................................................................................................................6

Mouth care ...........................................................................................................6

Denture care.........................................................................................................6

Dressing................................................................................................................7

Hair care................................................................................................................7

Refusing to eat.....................................................................................................8

Incontinence and toileting ..................................................................................9

Skin care...................................................................................................................12

Lifting or moving a person.....................................................................................14

Managing medications ...........................................................................................16

Working with the doctor and pharmacist........................................................16

Tips for safely managing medications..............................................................19

Finding less expensive medications .................................................................20

Dealing with challenging personalities and behaviors 

while providing care..........................................................................21

Tips and suggestions on dealing 

with difficult behaviors .....................................................................................21

Challenging behaviors and dementia ..............................................................25

Safety in the home ............................................................................27

Controlling the spread 

of infection ..............................................................................................................27

Immunizations....................................................................................................28

Table of contents

Oregon Family Caregiver Handbook 9
Home safety ............................................................................................................29

Falls .....................................................................................................................29

General home safety tips ..................................................................................31

Home safety tips for people with dementia....................................................31

Going to the hospital and transitioning to home ...........................33

Hospital admission.............................................................................................33

Hospital admission or observation status?......................................................34

Hospital discharge — going home ...................................................................34

Enhancing daily life ...........................................................................36

The importance of social connections ..............................................................36

Senior centers.....................................................................................................37

Adult day service programs ..............................................................................37

Keeping your mind active .................................................................................37

The importance of good nutrition....................................................................38

The emotional challenges of caregiving ..........................................41

The importance of emotional support ..................................................................41

What is good self-care?.....................................................................................42

Managing stress.................................................................................................43

Tips for reducing stress......................................................................................43

Depression...............................................................................................................44

Signs of depression............................................................................................44

Grief and loss .....................................................................................................45

Hospice care .......................................................................................................49

When you may need professional help ...........................................................49

Adult abuse ........................................................................................................49

Financial exploitation ........................................................................................50

Where to turn when you need help.................................................51

Asking for help from family and friends...............................................................51

How to ask for help...........................................................................................51

Family Caregiver Support Program (FCSP) ............................................................52

Family caregiver counseling..............................................................................52

Caregiver training..............................................................................................52

Caregiver support groups .................................................................................53

Respite care ........................................................................................................53

Information about services ...............................................................................53

Table of contents

Oregon Family Caregiver Handbook 10
Working with your employer.................................................................................54

Help from community services and programs for the care receiver...................55

Finding local services .........................................................................................55

ADRC Information and Assistance (I & A) ........................................................55

Benefits Checkup ...............................................................................................56

Options when care at home is no longer possible..........................57

Be prepared........................................................................................................57

Nursing homes ..................................................................................................59

Retirement communities/ independent living facilities ..................................60

Continuing care retirement communities (CCRC)............................................60

Paying for services in a care facility .................................................61

Medicare.............................................................................................................61

Medicaid .............................................................................................................61

Other insurance programs......................................................................................62

Long-term care insurance..................................................................................62

Veteran’s benefits ..............................................................................................62

Planning for tomorrow......................................................................63

Financial planning..............................................................................................63

More planning information ..............................................................................63

Legal planning....................................................................................................63

Wills ....................................................................................................................64

Power of Attorney.............................................................................................64

Advance Directive..............................................................................................64

Physician Orders for Life-Sustaining Treatment (POLST) or 

Do Not Resuscitate (DNR)..................................................................................65

Guardians ...........................................................................................................65

Consult an attorney...........................................................................................65

Have and keep an inventory.............................................................................66

Aging and Disability Resource Connection (ADRC).........................67

Table of contents

Oregon Family Caregiver Handbook 11
Oregon Family Caregiver Handbook 12
1

Family Caregiver Handbook

Introduction

This booklet is full of ideas and suggestions, 

information and additional resources on a variety 

of topics that can help you with caregiving now 

and in the days ahead.

With careful planning, good self-care and a 

knowledge of what help is available, you will 

be a better caregiver for as long as it is needed 

and help the care receiver remain at home as 

long as possible.

Please note: When referring to the person you are caring 

for, we often use the term “care receiver.”

The Family Caregiver 

Support Program

You will see the Family Caregiver Support 

Program referenced throughout this booklet. 

The Family Caregiver Support Program, available 

through the Aging and Disability Resource 

Connection, offers invaluable support, services 

and resources for family and other unpaid 

caregivers. Services are free or low-cost 

and including:

• Information and help getting services for 

caregivers and care receivers including

» Caregiver support groups and 

counseling;

» Caregiver training and education; 

and

» Respite care.

See page 52 for more information about 

these services.

Internet resources

There are many internet resources referenced 

throughout the booklet. Many links referenced 

in this booklet can also be found through the 

Aging and Disability Resource Connection 

(ADRC) website at www.ADRCofOregon.org.

Since website links can change, the ADRC 

website will always have current information.

To find the number for your 

local Family Caregiver Support 

Program, call toll-free 

1-855-673-2372 or

1-855-ORE-ADRC

or find them online at

www.ADRCofOregon.org

Oregon Family Caregiver Handbook 13
2

Caregiving can bring changes to your 

relationships with the care receiver, family, 

friends and work life. This is a time when 

respectful, open and honest communication 

will be very necessary to navigate all of the 

life changes that come with caregiving.

Safeguarding the care receiver’s 

dignity and choice

Every person has a basic human need and right 

to be treated with respect and dignity. This 

need doesn’t change when a person becomes 

ill or disabled; it often gets stronger. You know 

the person you care for, their likes and dislikes, 

strengths and weaknesses, and wants and 

needs. 

It’s easy to slip into a “protective” role when 

people care for others, especially family 

members. Here are some guidelines:

• Guard against overprotecting or taking 

over for them.

• Allow them the freedom to make decisions 

about their own life and choose what and 

how they want things done.

Treat the care receivers with dignity.

• Listen to their concerns.

• Ask for their opinions and let them 

know they are important to you.

• Involve them in as many decisions 

as possible.

• Include them in the conversation. Don’t talk 

about them as though they are not there.

• Talk with them as adults, even if they need 

a great deal of care. No adult wants to be 

treated like a child.

Respect their right to make choices.

• Making choices gives us a sense of control 

over our lives. For example, let them decide 

what and when to eat, if they are able.

• If they have dementia, offer simple choices. 

If they want to wear the same shirt every 

day, use a towel over their clothes and 

wash the shirt each evening.

• If a choice seems silly or unimportant to 

you, try to see why it is important to them.

• If they are making a choice that may 

be dangerous to them, try to negotiate 

possible safer solutions.

Caregiving and family relationships

The caregiving role can affect other relationships 

within the family. You are not alone! Many of 

the issues and challenges you may be facing are 

common to many families.

Call your local Family Caregiver Support Program 

and talk with experienced, caregiving experts for 

practical, supportive advice, tips and additional 

resources to help work through any issues you 

are facing.

Additional resources:

Visit the website http://extension.oregonstate.

Changing roles and relationships

Oregon Family Caregiver Handbook 14
3

Family Caregiver Handbook

edu/fch/healthy-aging (click on OSU 

Publications) to find the following articles by 

Vicki Schmall:

• Coping with Caregiving, How to Manage 

Stress when Caring for Elderly Relatives

• Aging Parents: Helping When Health Fails

• Sharing the Responsibilities of Parent Care: 

Sibling Relationships in Later Life

Getting the information you 

need to provide quality care

Learn as much as you can about the care 

receiver’s condition. This will give you a better 

idea of what care is needed now and what to 

prepare for in the future. The care receiver’s 

doctor is an important source of information. 

You can also do some research at the library 

or on the internet to learn as much as you can 

about the person’s condition and what to expect. 

National organizations with websites represent 

most chronic diseases or conditions. These sites 

are a good place to start your research.

Use your favorite search engine to find them. 

Fill in the disease name with the words 

“national organization” for your search.

Working with doctors

Be prepared for a visit to the doctor. Planning 

ahead helps you and the care receiver get the 

most out of the appointment and the information 

you need. To make the most of your visit:

• Be a strong advocate for the care receiver. 

Encourage independence

Self-esteem often suffers when people 

lose some level of independence because 

of illness or disability. Care receivers 

may feel worthless or like a burden. 

Your attitude can have a positive effect 

on the care receiver’s sense of worth 

and independence. 

• View your role as a care partner 

instead of a doer. Even if you can do 

things faster or better, encourage 

them to use the skills they still have. 

Skills that aren’t used will be lost.

• Encourage them to do as much as 

they can for themselves.

• Be flexible.

• Divide tasks into smaller steps. 

Big steps can lead to getting easily 

discouraged.

• Provide plenty of encouragement 

and positive feedback. Give praise 

for trying. A sincere “well-done” is 

often appreciated, especially when 

a person’s abilities are limited.

• Provide ways for them to feel needed.

• Look for gadgets or assistive 

devices that can help them stay 

as independent as possible.

Oregon Family Caregiver Handbook 15
4

Bring a prioritized list of concerns and 

questions. Time with a doctor these 

days is usually short. Start with what is 

most important.

• Take a notepad or tape recorder with you. 

It is easy to forget things when time is 

limited or you are anxious.

• Speak up. Ask questions. If you don’t, 

your doctor may think you understand 

everything that was said. Ask for written 

directions if you need them or have the 

doctor draw a picture if it is something 

you don’t understand. Don’t leave until 

you understand what to do next.

• If you have doubts about a diagnosis 

or recommended treatment, get a 

second opinion.

Questions to ask the doctor(s) 

❑ What can we expect as the normal 

progression of the disease?

❑ What type of physical and emotional 

care will the care receiver need now 

and as the disease progresses?

❑ Are there any serious signs or symptoms 

to look for and what needs to be 

reported to the doctor?

❑ Will you need any special training in 

order to help with care? If so, what is 

the best way to get it?

❑ What are the best strategies for 

managing pain or other uncomfortable 

symptoms?

❑ What is and is not treatable?

❑ Are there any assistive gadgets or 

devices that could help the care receiver 

remain as independent as possible?

❑ Are there any additional helpful services 

or resources? 

Additional resources

• “After Your Diagnosis – Finding 

Information and Support” from 

the Agency for Healthcare Research 

and Quality. Available on-line at 

www.ahrq.gov/consumer/diaginfo.

htm or call 1-800-358- 9295.

• “Talking with Your Doctor: A 

Guide for Older People” from 

the National Institute on Aging. 

Available at www.nia.nih.gov 

(click on Publications, then DoctorPatient Communication) or by 

calling 1-800-222-2225.

Oregon Family Caregiver Handbook 16
5

Family Caregiver Handbook

Personal care is personal.

Everybody does these activities differently. Try to 

follow the same routines they are used to doing.

Encourage independence.

Be a care partner instead of a doer. Encourage 

them to use the skills they still have. Divide tasks 

into smaller steps and look for gadgets that 

increase independence.

Give praise for trying. 

Especially when their abilities are limited, a 

sincere “well-done” is appreciated. Does the 

care receiver have Alzheimer’s or another form 

of dementia? There are many additional tips 

and suggestions specific to providing care to a 

person with dementia. Help is available! 

See pages 25 & 26 for several resources 

to get you started.

Bathing

A bath serves many purposes. It cleans the care 

receiver’s skin, stimulates circulation, provides 

movement and exercise, and gives you an 

opportunity to keep an eye out for any problems 

with a person’s skin.

Most people don’t need a daily bath. If bathing 

is difficult, do it only as often as necessary. Do 

make sure that the hands, face and genital area 

are washed every day.

Bathing tips

• Keep things as pleasant and relaxed as 

possible. You’ll both feel a lot better.

• Use less soap. Too much soap increases 

skin dryness.

• Keep the room comfortably warm.

• Keep the person covered, when possible, 

to respect the person’s privacy. 

Providing day-to-day care

Consider getting professional 

help to learn easier ways to 

provide care.

Nurses and home health aides as well 

as physical, occupational and speech 

therapists are trained to teach family 

members how to provide care in the 

home. Ask the care receiver’s doctor 

for a referral.

Bathing assistive devices

Many assistive devices make bathing 

safer and help the care receiver stay as 

independent as possible. These include 

grab bars, long-handled sponges, 

wash mitts, a non-slip mat, a bath 

thermometer to make sure the water 

is not too hot, an inflatable bathtub 

and rinse-free bath products.

Oregon Family Caregiver Handbook 17
6

If care receivers are able to get into a tub 

or shower:

• Ask them to sit on the edge of the tub. 

Then put both their legs into the tub 

before they stand up. Reverse the 

process when they are getting out.

• Make sure the floor is dry when 

helping them in or out of a tub.

• Lower the water temperature in 

the house to 120 degrees.

If the person can’t get into the tub or is concerned 

about getting out of the tub, buy or rent a bath 

bench and install a hand-held shower attachment.

Shaving

• Use an electric shaver when shaving 

another person; it’s safer and easier. A 

person taking blood thinning medication 

should be encouraged to use an electric 

razor.

• If the person wears dentures, put them in 

his mouth before shaving.

• Have the care receiver in a sitting position, 

if possible.

• Do not press down hard or move the shaver 

too fast over the face.

• Shave the most tender areas of the face 

(the neck area below the jawbone) first and 

then move up to the tougher areas of the 

face between the ears, nose and mouth.

Mouth care

Proper care of the mouth and teeth supports the 

care receiver’s overall health and helps prevent 

mouth pain, eating difficulties, speech problems, 

digestive problems, tooth decay and gum disease.

To help prevent decay and gum disease, teeth 

should be brushed twice a day. Teeth should 

be flossed at least once a day to clean between 

them where the brush misses.

If it is hard for the care receiver to grasp a 

toothbrush, make the handle bigger with a 

sponge, rubber ball or adhesive tape. An electric 

toothbrush may be easier to manage than a 

manual brush in this case.

Denture care

• Regularly inspect dentures for cracks, chips 

or broken teeth.

• Avoid hard-bristled toothbrushes. They can 

damage dentures.

• Do not put dentures in hot water. It can 

warp them.

• Do not soak dentures in bleach water. 

Bleach can remove the pink coloring, 

discolor the metal on a partial denture, or 

create a metallic taste in the mouth.

• Don’t let dentures dry out. They lose their 

shape.

• Never soak a dirty denture. Always brush 

first to remove food debris.

• Clean dentures twice a day with a denture 

brush and non-abrasive denture cleaner.

• After a meal, rinse the mouth with clean 

water to help remove food particles caught 

in the teeth or gum lines.

Oregon Family Caregiver Handbook 18
7

Family Caregiver Handbook

Dressing

• Let the care receiver choose what to wear. 

Lay out two choices to simplify this for 

someone who has some level of confusion 

or dementia.

• Be flexible. Wearing a bra or pantyhose 

may not be important to a female care 

receiver, especially if it’s an added hassle.

• Consider easy-to-wear clothes with large 

front fasteners (zippers or Velcro), elastic 

waistbands and slip-on shoes.

• If the person has a weak side, put the 

painful or weak arm into the shirt first. 

When taking it off, remove the strong arm 

first from the garment.

There are several assistive devices to help 

someone dress. These include Velcro in place of 

buttons or shoelaces, zipper pulls attached to a 

zipper’s metal tab to give the care receiver added 

leverage in closing and opening the zipper (a 

large paper clip can also be used) and extended 

shoehorns that allow the person to put on shoes 

without bending over.

Hair care

Many people who are ill or disabled enjoy going 

to a barber shop or hair salon. It’s often worth 

the extra effort to take the person out for a 

haircut or shampoo.

Many shops will make a special effort to meet 

care receivers’ needs, especially if they know 

them or the family. If money is an issue, beauty 

schools may do hair care no- or low-cost as a 

way for students to get experience.

Many people who are ill or 

disabled enjoy getting out 

to a barber shop or hair salon.

Oregon Family Caregiver Handbook 19
8

You may also be able to find someone to come 

into your home. Try calling a local nursing home 

for the name of someone who makes home visits 

or put an ad in a community bulletin board for 

what you need.

• Keep hair short and in an easy-care style.

• Wash hair in the kitchen sink if the tub or 

shower is too difficult.

• Consider using one of the dry shampoo 

products found in drug stores if hair 

washing is impossible.

Refusing to eat

A reduced ability to taste and smell, medications, 

depression or constipation are common reasons 

people refuse to eat or have a poor appetite. 

All of these areas should be checked out with a 

doctor or other professional.

• Check for tooth, mouth pain or denture 

problems if they suddenly lose interest in 

eating. Encourage them to visit a dentist; 

many problems are treatable.

• Don’t scold if they refuse to eat. Instead, 

find out why. See if you can work together 

toward a solution that works for both of you.

• Appetite often improves when mealtime is 

relaxed and enjoyable.

See the Nutrition section on pages 38 and 39 for 

more information and resources.

The following are assistive devices that can help 

with eating:

• Bendable straws are a help when someone 

drinks in bed.

Help with eating

When helping adults eat, show respect 

and help them be as independent as 

possible by doing these things:

• Always treat them as adults.

• Encourage the care receivers to help 

you plan meals.

• Let them choose what they want to 

eat and when to eat.

• Help them only when they ask for it.

• Offer finger foods if it is difficult for them 

to use a fork and spoon. For instance, 

scrambled eggs and toast can be made 

into an egg sandwich.

• Have them in a sitting position whenever 

possible and keep their head slightly 

tilted forward.

• Make sure they can see the food on 

the plate. The color of the plate should 

contrast with the food.

• Tell them what you’re doing: “I’m giving 

you peas now.”

• They should remain upright for at least 

20 to 30 minutes after finishing a meal.

• Have a doctor check if there are sudden 

changes in eating or swallowing. 

Oregon Family Caregiver Handbook 20
9

Family Caregiver Handbook

• Thin, flat sponges will keep a plate from 

sliding on the table.

• Divided plates or plates with rims make 

it easier to scoop food onto a utensil.

• Larger-handled utensils help weak or 

arthritic hands. You can improvise these 

by using foam-rubber hair curlers, 

sponge rubber or a washcloth.

• A two-handled cup is often helpful.

• A small blender or baby-food grinder 

can be used right at the table and is 

easier to clean than a large blender.

Incontinence and toileting

The care receiver may need help using the toilet 

or may have lost control over the bladder or 

bowel (incontinence). You may be uncomfortable 

providing this type of care. This section will 

give you suggestions to help the care receiver 

maintain independence and make your job 

easier.

Incontinence 

Incontinence is not a normal part of aging. 

Incontinence affects people of all ages. It is not 

easy to talk about and can lead to the care receiver 

feeling isolated and even helpless.

If incontinence develops, it’s very important to 

ask the doctor for a complete evaluation. Many 

causes of incontinence are treatable.

Sometimes simple changes in diet or changing 

certain medications can cure incontinence. More 

frequently, treatment involves a combination of 

medicine, bladder training, pelvic floor exercises 

or absorbent products.

Additional resources

National Association for Continence

P.O. Box 1019

Charleston, South Carolina 29402-1019

Simon Foundation

P.O. Box 815

Wilmette, IL 60091

1-800-23-SIMON (1-800-237-4666)

www.simonfoundation.org

International Foundation for 

Functional Gastrointestinal Disorders

700 W. Virginia St., #201

Milwaukie, WI 53204

1-888-964-2001

www.iffgd.org

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If the person occasionally has accidents:

• Suggest going to the bathroom on a frequent, 

scheduled basis. Rushing after the urge strikes 

can increase the chance of accidents.

• Make sure the hallways and bathroom 

are well lit and clutter-free.

• Remember that accidents are very 

embarrassing for the care receiver.

• Stay calm and reassure the person that it’s 

OK. Keep a matter-of-fact approach. “Let 

me help you get out of these wet things.”

• Stay alert for signs of a urinary tract 

infection. Any fever lasting longer than 

24 hours should be evaluated by a 

licensed health care provider.

• Be aware that incontinence can be a 

trigger for skin problems.

If accidents happen frequently:

• Definitely make an appointment with 

the doctor for a thorough evaluation 

and treatment recommendations.

• Make sure the person is getting enough 

fluid every day to prevent strong urine 

that can irritate the bladder.

• Find out if the care receiver is taking 

any medications that affect the bladder. 

Common over-the counter products like 

aspirin or Excedrin contain caffeine, 

which stimulates the bladder. A few 

high blood pressure medications can 

also irritate the bladder.

Toileting is a very private 

matter. Your reassurance 

can help lessen feelings of 

embarrassment and discomfort.

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Family Caregiver Handbook

Controlling stains and odor

• Include cranberry juice in the diet to help 

control urine odor.

• Protect the mattress with rubber or plastic 

sheets. Consider a breathable, washable 

layer like sheepskin between the sheet and 

the waterproof materials to avoid excess 

sweating or a “sticky” feeling.

• Quickly remove soiled bed linens and 

clothing. If it’s impossible to wash them 

immediately, rinse them in cold water. 

Soak stained items in dishwashing 

detergent to loosen stains.

• Clean bedpans, urinals and commodes 

with household cleaners.

• Avoid odors on furniture or other household 

items by cleaning soiled areas with a mild 

dilution of cold water and white vinegar.

• Protect furniture with disposable or other 

waterproof pads.

Helping with toileting

Toileting is a very private matter. It is a very 

vulnerable and defenseless time for another 

person. Your reassurance can help lessen 

feelings of embarrassment and discomfort.

Giving privacy

• Look the other way for a few moments.

• Leave the room (if it is safe to do so).

• Allow the care receiver extra time.

• Be patient when the person asks for your 

time when you are busy with other things.

Making sure the environment supports 

getting to the bathroom

• Make sure the hallway and bathroom 

are well-lit.

• Keep the path to the bathroom clear 

and free of clutter.

• Keep needed items such as a walker or 

cane nearby.

• Place a night light in the bathroom or 

leave a light on.

The following assistive devices can help 

with toileting:

• Commodes are available to buy or rent 

if it’s too hard to get to the bathroom. 

Commodes are especially helpful during 

the night.

• Bedpans and urinals may be needed if the 

person can’t get out of bed. They can be 

purchased at medical supply stores and 

larger drugstores.

• Raised toilet seats and toilet risers raise 

the height of the toilet seat, making it 

easier to get on and off of the toilet.

• Disposable pads, briefs and undergarments 

protect clothing and bedding.

Constipation

Constipation is a common concern for many 

people. Common causes of constipation are 

some medications; not enough fluid and/or fiber 

in the diet; overuse of laxatives; lack of physical 

activity or immobility; depression or grief; 

changes in routine; diseases such as diabetes, 

Oregon Family Caregiver Handbook 23
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Parkinson’s disease or multiple sclerosis; spinal 

cord injuries or hemorrhoids; or ignoring the 

urge to have a bowel movement.

It is important to find out what is causing the 

constipation. Call your doctor to help evaluate 

and identify the right treatment. In many cases, 

diet and lifestyle changes help relieve symptoms 

and prevent constipation.

Encourage the person to:

• Get plenty of fluids. Drink at least (8) eight 

cups of fluid per day. Drink more when the 

weather is hot or when exercising.

• Cut down on alcohol and beverages 

containing caffeine (tea, coffee, soda).

• Make healthy food choices. Fiber is 

especially important for good bowel 

function.

• Stay as active as possible.

• Relax. Don’t strain to empty the bladder 

or bowel or sit on the toilet too long.

Skin care

Skin is the first line of defense a person has to 

heat, cold and infection. It is important to help 

keep the skin healthy. Help the care receiver:

• Stay as mobile as possible;

• Keep skin clean, dry and moisturized;

• Eat a healthy, well-balanced diet and 

drink plenty of fluids.

Bed sores

Immobility is the number-one cause of bed sores 

(also called pressure ulcers). People who stay in 

bed for long periods or are in a wheelchair are 

at the greatest risk.

Bed sores can also be caused when the skin is 

weakened by:

• Friction, which is caused when skin is 

rubbed against or dragged over a surface 

(even slight rubbing or friction on the skin 

may cause a bed sore — especially for 

people with weak skin);

• Dryness and cracking;

• Age;

• Irritation by urine or feces;

• Lack of good nutrition or not drinking 

enough fluids;

• Certain chronic conditions or diseases — 

especially those that limit circulation.

A healthy diet can help 

prevent constipation and 

keep skin healthy.

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Family Caregiver Handbook

Bed sores are a serious problem and, in most 

cases, can be prevented by following the steps 

listed below:

• A bed-bound person should change 

position every two hours.

• A wheelchair-bound person should 

shift weight (or be helped to) in 

the chair every 15 minutes for 15 

seconds and change position 

every hour.

• Use mild soap and warm (not hot) 

water. Rinse and dry well; pat but 

don’t rub.

• Gently clean off urine or feces 

immediately with mild soap and 

warm (not hot) water.

• If incontinence is an issue, avoid 

using “blue pads” or disposable 

waterproof underpads that hold 

moisture on the skin. A waterproof 

cloth pad that can be laundered and 

reused is a good alternative.

What to look for

What a bed sore looks like depends on how 

severe it is. The first signs of a bed sore include:

• Redness on unbroken skin lasting 15 to 

30 minutes or more in people with light 

skin tones (for people with darker skin 

tones, the ulcer may appear red, blue or 

purple. If in doubt, compare the area to 

the other side of the person’s body);

• Any open area — it may be as thin 

as a dime and no wider than a Q-tip;

Potential pressure points

Look at the care receiver’s skin at least once 

a day. Pay special attention to pressure 

points. Pressure points are indicated with 

circles in the illustrations below.

Back of head, shoulder blade

Elbows

Hip bones 

(or iliac crest)

Spine Medial knee

(between the knee)

Heel or

ankle

Rim of ears Toes

Back Elbow Lateral knee Heels

of head Sacrum

and coccyx

Dorsal

thoractic 

areas

Ankles

Elbow Hips Anterior knee

Shoulder Perineum

Side of head 

and ears

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• An abrasion/scrape, blister or 

shallow crater;

• Texture changes when the skin feels 

“mushy” rather than firm to the touch;

• A gray or black scab. Beneath the scab 

may be a bed sore. Do not remove the 

scab. If a bed sore is beneath it, this 

could cause damage or lead to infection.

Lifting or moving a person

The care receiver may need physical help to get 

around the house. This may include help to get 

up from a chair or toilet, get out of bed or into 

a wheelchair. As always, encourage the person 

to do as much as possible without help!

How to transfer a person

Properly moving a person from one location to 

another is referred to as transferring a person or 

just a transfer. In this case, the person is being 

transferred from a bed to a wheelchair. Follow 

these steps:

• Help the person roll toward the side 

of the bed.

• Support the back and hips, and help the 

care receiver to a sitting position with 

feet flat on the floor.

• If you are using a transfer belt, stand in 

front of the person and grasp the belt.

• If you are not using a transfer belt, stand 

in front of the person and place your arms 

around the torso.

• Brace the care receiver’s lower extremities 

with your knees to prevent slipping.

• Tell the person you will begin the 

transfer on the count of (3) three.

• On (3) three, help him or her stand.

• Tell the person to pivot to the front 

of the wheelchair with the back of 

the legs against the wheelchair.

• Flex your knees and hips and lower 

the care receiver into the wheelchair.

• Have the person hold the armrests 

for support.

If you need more information or individualized 

training on helping with transfers, call the care 

receiver’s doctor. The physician can refer you to a 

physical or occupational therapist for assessment 

and training related to transfers. This assessment 

and training is often covered by insurance.

If you think a bed sore may 

be developing or the person 

has a bed sore:

• Remove pressure from the area 

immediately.

• Recheck the skin in 15 minutes. 

If the redness is gone, no other 

action is needed.

• If the redness is not gone or an 

open area develops, immediately 

call the care receiver’s doctor.

• Do not massage the area or the 

skin around it.

• Do not use a heat lamp, hair dryer 

or “potions” that could dry out the 

skin more.

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Family Caregiver Handbook

Safety with transfers

• If the person cannot help with the transfer 

at all, you need special training and/or 

adaptive equipment (e.g., a Hoyer Lift) for 

lifting and moving.

• Don’t ever try to lift someone heavier than 

yourself unless you’ve had proper training.

• The person should never put his or her 

arms around your neck during a transfer. 

It can pull you forward, make you lose your 

balance or hurt your back.

• If you feel a strain in your lower back, stop 

the transfer and get help.

Helping to stand up

• Clarify where the person wants to go and 

make sure you think he or she can get 

there before helping the care receiver walk.

• Before helping the person stand, encourage 

him or her to:

» Lean forward;

» Use a rocking motion as momentum 

(if able);

» Move the legs off the bed or chair 

and put the feet firmly on the floor.

• Place your arms around the person’s waist. 

Avoid being pulled on your neck.

» Make sure the person is wearing 

glasses and hearing aids, so the 

direction of movement instructions 

are clear.

It’s much easier to stand up from a high, 

firm chair with arms than from a sofa or 

overstuffed chair.

Proper body mechanics 

when lifting

If you will be helping someone get up 

or into a chair, bed or bath, be kind to 

your back! Remember ... it’s the only 

one you’ve got!

Any time you lift or move a person, use 

proper body mechanics to prevent stress 

or injury to your back. Think of yourself 

as an athlete. If you’re on the injured list, 

you’re out of the game.

• Before lifting a person or moving 

anything, make sure you can lift or 

move it safely. Do not lift a person or 

a load alone if it seems too heavy.

• Spread your feet about shoulder width 

apart with one foot slightly in front 

of the other to provide a good base 

of support.

• Bend at the knees instead of the waist.

• Keep your back as straight as possible.

• Bring the person/load as close to your 

body as you can.

• Lift with your legs, using your stronger 

set of buttock and leg muscles.

• Keep your back, feet and trunk together 

and do not twist at the waist. If it is 

necessary to change your direction 

when upright, shift your feet and take 

small steps. Keep your back and neck 

in a straight line.

• When possible, pull, push or slide 

objects instead of lifting them.

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The following assistive devices can help 

with transfers:

• A transfer belt is a belt made of sturdy 

webbing or twill with a buckle or clasp 

on it. The transfer belt is placed around 

the care receiver’s waist to help with 

transferring or walking. A transfer belt is 

a good tool to have for any person who 

needs help to transfer. If you do not have 

a store-purchased transfer belt, you can 

use a regular wide belt with a clasp.

• Transfer boards provide a secure and 

safe surface for a person to slide from 

one place to another. Transfer boards 

work well for people who can use their 

arms to scoot from one side to the other.

• Lift cushions help people with decreased 

upper and lower body strength to gently 

lower themselves into a chair or sofa 

and give them a boost when standing. 

These portable devices are placed onto 

the seat of a chair and are powered by 

a number of methods such as electric 

power or air compressors.

• Lift chairs are powered recliners that lift 

and tilt forward, helping people stand 

more easily and lower themselves into 

a seated position.

Managing medications

Careful medication management helps prevent 

medication problems and makes sure that 

medications do the job they’re supposed to 

do. This section will help you manage 

medications safely.

Working with the doctor and 

pharmacist

Many care receivers take several medications 

and often see more than one doctor. Keep a 

record (see pages 68–71) of all the drugs they 

are using including prescription drugs, overthe-counter (OTC) medications, vitamins, food 

supplements and herbal remedies.

Give the care receiver’s doctor and pharmacist 

this list. It is also a good idea to list any drug 

allergies or problems taking medications.

Keep a record of all 

medications the care 

receiver is taking and 

bring it to all doctor 

appointments.

Use the record on pages 

68–71 as a guide.

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Family Caregiver Handbook

Keep the list current and take it with you to all 

doctor appointments. This helps avoid the care 

receiver being given a new drug that does the 

same thing as an existing medication and helps 

prevent potential drug interactions.

Drug interactions can:

• Make people sick;

• Cause symptoms that are mistaken for a 

new illness;

• Increase or decrease the effectiveness of 

medicines being taken.

The likelihood of drug interactions happening 

increases with the number of medications 

being taken.

Ask the doctor to review prescription dosages at 

least once a year. Over time, the care receiver’s 

need for a medication can change. A chronic 

illness can improve or get worse. Older people 

often need a smaller dose of a drug because 

drugs stay in their system longer. People who 

are small-sized or who lose weight may also 

need smaller doses.

Getting the medication

• Get all prescribed and OTC medications at 

the same pharmacy or drug store so the 

pharmacist can maintain an up-to-date list 

of all medications the care receiver is taking 

and check for potential problems.

• Carefully read the label and insert that 

comes with a medication and stay alert to 

special instructions, anything that should 

be avoided or possible side effects.

What to ask when a new 

medication is prescribed

When the care receiver is prescribed a 

new medication, ask the doctor the 

following questions.

❑ What can we expect as the normal 

progression of the disease?

❑ What is the medicine for?

❑ Are there any risks or side effects to 

taking this medication?

❑ What should we do if side effects occur?

❑ Will this new medicine work safely with 

prescription and OTC medicines the 

person is already taking?

❑ What are the possible drug interaction 

signs to look for?

❑ Will the medicine affect sleep or 

activity level?

❑ How often should the medicine be 

taken?

❑ How much should be taken?

❑ How long should it be taken?

❑ How do I know if the medicine 

is working?

❑ Should the medicine be taken with 

food or on an empty stomach?

❑ Are there other special instructions? 

Should alcohol, sunlight or certain 

foods be avoided?

❑ What should we do if the person 

misses a dose?

❑ Is there a generic (not a brand name) 

form available?

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Signs of side effects can include:

• Confusion and other memory problems;

• Dizziness, difficulty walking, increased falls;

• Anxiety;

• Upset stomach or vomiting;

• Changes in eating, sleeping patterns;

• Chills;

• Rash, hives, itching;

• Diarrhea, constipation;

• Fluid retention;

• Loss of energy; and

• Dry mouth.

Medication Schedule

An important part of managing medications is helping the care receiver remember what to 

take and when to take it. Make a chart. Write down the day and time that each medicine 

should be given.

Monday Tuesday Wednesday Thursday Friday Saturday Sunday

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

Carefully read all 

medication labels.

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Family Caregiver Handbook

Over-the-counter (OTC) medicines

Common OTC medications include pain relievers 

(such as Tylenol and aspirin), anti-inflammatory 

drugs (such as ibuprofen and Advil), cough 

syrups, antacids (such as Tums and PeptoBismol), allergy relief medicines, and laxatives. 

You can buy these drugs without a prescription.

Although these medicines are considered safe, 

they can cause reactions with other medications. 

It’s also possible that an excess of an OTC 

medication can be toxic.

Tips for safely managing medications

• Never increase or decrease a medication’s 

dosage without checking with the care 

receiver’s doctor.

• Only give medications that were prescribed 

for the person.

• Give the entire prescription even if 

symptoms are gone unless your doctor 

tells you otherwise.

• Give medications with a full glass of water 

unless instructions say to do otherwise.

• Don’t crush pills or capsules unless 

you check with your pharmacist. Many 

medications have a coating to protect 

the throat or stomach lining. A crushed 

pill could release all the medicine at once 

instead of the way it’s intended. For this 

same reason, don’t allow someone to 

chew pills or capsules unless the 

pharmacist has said this is okay.

• Don’t cut pills in half unless they have a 

line across the middle to show they can 

be broken and you have checked first 

with the pharmacist. Ask the pharmacist if 

the pills come in smaller doses or ask the 

pharmacist to break them for you.

• Throw away all medications that are 

past the expiration date.

• Store all drugs in a cool, dry area. Don’t 

store medications in the bathroom. The 

warm and damp conditions can cause 

medications to deteriorate.

Additional resources

Caregivers’ Guide to Medications 

and Aging from the Family Caregiver 

Alliance. Visit www.caregiver.org/

caregivers-guide-medications-and-aging or 

call 1-800-445-8106.

Medicines and You: A Guide for 

Older Adults from the Food and Drug 

Administration. Visit www.fda.gov/drugs/

resourcesforyou/ucm163959.htm.

Medicine Safety: A Toolkit for 

Families from The Center for Improving 

Medication Management & the National 

Council on Patient Information and 

Education at www.learnaboutrxsafety.org/

Safe Medication Administration

Oregon Department of Human Services 

Office of Licensing and Regulatory 

Oversight. Go to www.oregon.gov/dhs/

licensing/Pages/safe-med-administration.

aspx (go to “Topic” and then scroll to 

“Family Care”).

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The following assistive devices can help with 

managing medications:

• A pill container can be used to organize 

pills to match your chart.

• Multi-alarm pill boxes store medication and 

provide reminder alerts to take medications 

at prescribed times. Most alerts come in the 

form of an audible tone at specific times of 

the day or predetermined hourly intervals. 

These pill boxes also offer compartments 

to help organize medications by day of the 

week and time of day.

• Talking medication bottles have a recording 

mechanism that lets you or a pharmacist 

record a message that can be played back 

anytime. The recorded message identifies 

bottle contents and provides reminders 

about when to take the medication.

• Medication applicators help to apply 

lotions and ointments on hard-to-reach 

areas such as the back and feet.

• Pill crushers and splitters split or crush pills 

and tablets into a smaller size or a powder.

Finding less expensive medications

The high cost of prescription drugs continues to 

be a concern for many people. Below are some 

valuable internet resources for saving money on 

prescription drugs in Oregon.

• Visit www.oregon.gov/oha/pharmacy/

OPDP/Pages/Index.aspx to find out how 

you can enroll in the Oregon Prescription 

Drug Program. You can also compare the 

prices of the most commonly prescribed 

drugs.

• Benefits Checkup (BCU) is a comprehensive 

online service to screen for federal, 

state and some local public and private 

benefits for adults ages 55 and over. BCU 

connects you to programs that help pay 

for prescription drugs, health care, utilities 

and other needs. BCU provides a detailed 

description of the programs, contacts for 

additional information and materials to 

help successfully apply for each. Visit the 

BCU website at www.benefitscheckup.org .

• Visit http://healthtools.aarp.org/drugcompare and find an online consumer 

guide from AARP where you can learn more 

about a variety of different drugs and their 

effectiveness. You can also compare prices.

The high cost of prescription 

drugs continues to be a 

concern for many people.

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Family Caregiver Handbook

The stress of an illness or disability can lead 

to a care receiver’s behavior becoming difficult. 

His or her personality and behavior may change 

because of the emotional and physical changes 

he is experiencing. A person who has always 

had a difficult personality may become even 

more difficult.

First, make an appointment with the care 

receiver’s doctor to rule out any medical reason 

for difficult behaviors. This is especially important 

if an unusual behavior comes on suddenly for the 

care receiver. Medication side effects, a urinary 

tract infection, depression and dehydration are 

some common culprits of physical problems 

leading to difficult behavior.

Tips and suggestions on dealing 

with difficult behaviors

Although you can’t always control the other 

person’s behavior, you can control your response 

to it. An important goal when dealing with 

any type of difficult behavior is to remain calm 

and balanced.

• Be patient with yourself. You’re doing 

the best that you can do in a difficult 

situation; blaming yourself won’t help 

solve the problem.

• Focus on the behaviors that are difficult, 

not the person.

• Remember you have options, such as 

asking for politeness or leaving the 

room/area.

• Practice a gentle assertiveness on your 

own behalf. Standing up for yourself 

avoids a buildup of resentment, hurt or 

angry feelings.

The following are some common difficult 

behaviors caregivers face and some tips and 

suggestions for handling a rough patch or 

bad day. 

It is important to note that at some point difficult 

behavior can cross the line to the care receiver 

emotionally, verbally or physically abusing you. 

There is no reason or justification for putting up 

with abuse. If you feel you are being abused, 

get help immediately. Mental health agencies, 

hospitals or your doctor’s office can give 

Dealing with challenging personalities 

and behaviors while providing care

Remember these five Rs when 

handling difficult behavior:

Remain calm.

Respond to the 

person’s feelings.

Reassure the person.

Remove yourself.

Return when 

you are calm.

Oregon Family Caregiver Handbook 33
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you names of counselors and mental health 

professionals. You can also look in the yellow 

pages of the telephone directory. You don’t have 

to wait until things get intolerable to benefit 

from some knowledgeable advice and support 

to handle difficult behaviors. 

If the care receiver has dementia, see page 26 

for more resources.

When a person who needs help refuses 

to accept it

Most people don’t like to admit they need 

help. In the care receiver’s mind, admitting the 

need for help can signal loss of independence 

and abilities. Remember, change is difficult for 

everyone. If the person resists your help, be 

patient and keep the following suggestions 

in mind:

• Involve the care receiver as much as 

possible in establishing a personal 

care plan. Do everything you can to 

understand how and when the person 

wants things done.

• Assure the person that he or she has the 

final say in decisions about care. This may 

help him or her accept help. Reinforce that 

your aim is to work together to keep the 

care receiver at home as long as possible.

• If at first you don’t succeed, try again. 

Often if you wait 15 minutes and try 

again, your help will be accepted.

• Remind the person that giving up a bit of 

control in one area of life can often lead 

to more independence in the long run.

• Be patient. You may think you know 

what has to be done and when. However, 

your timetable may not be the right pace 

for the care receiver.

Call your local Family 

Caregiver Support Program 

at 1-855-673-2372 

for support or referrals.

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Family Caregiver Handbook

Excessive complaints and angry behavior

Illness and disability affect everyone differently. 

Some people become easily irritated. They may 

seem petty and demanding at times. The person 

may fly into a rage because you put too much 

cream in his coffee. When they are losing control 

over parts of their life, they may be desperately 

looking for something they can still control.

• Don’t downplay their feelings.

• Don’t take the anger personally.

• Saying “It’s no big deal” won’t help; it 

may even make them angrier. Instead, try 

something like, “You seem really frustrated. 

What can we do next time to make it better?”

• Let them talk about their anger. “What’s 

making you feel so bad?” “You seem 

upset. Can I help?”

• Make an effort to respect demands that 

may seem petty to you but are very 

important to them. Remember, if they 

could they would change the volume on 

the radio themselves or shave themselves 

exactly how and when they want.

• Find something to agree about. “Yes, the 

mail carrier hasn’t been coming as early 

as he used to.” “You’re right. These sheets 

are all wrinkled up.”

• Choose your battles.

• If either of you loses control of the 

situation, walk away. Take several deep 

breaths, count to 10 or give a silent 

scream while both of you cool off.

• Look for patterns to the angry behavior. 

Maybe the outbursts always come in the 

Helping a person accept a 

home care aide

• Introduce the idea slowly. Give time to 

accept the idea.

• Offer a trial period. It may help if the 

person knows there is an option to 

make changes.

• Sometimes people are more willing to 

accept in-home help if it is presented 

as being for the caregiver’s benefit, e.g., 

someone to help keep the house clean 

or do the heavy work.

• Encourage family and friends to let the 

care receiver know they think an aide is 

a good solution.

• Often people will listen to their doctor. 

Ask their doctor to suggest a plan that 

includes an aide.

• People may be concerned about the cost 

of services. Addressing this issue may 

help them accept a home care aide.

Oregon Family Caregiver Handbook 35
24

late afternoon or on days when you’re in 

a hurry or stressed. Try to break the 

pattern. If you can avoid the triggers that 

lead to an angry outburst, you can reduce 

frustration for both of you.

Anxious behavior

Chronic illness or disability may make care 

receivers more anxious than usual. They may 

worry about small details regarding their 

medications, blood pressure or blood sugar 

levels. They may make constant or unreasonable 

demands or 

refuse to allow anyone but you to do something. 

Anxiety may make them feel restless or 

dizzy. They may be hot or chilled, or may feel 

like their heart is pounding. Anxiety can also 

cause irritability, depression, insomnia and 

poor concentration.

• Identify if there is anything contributing 

to anxiety such as too much caffeine, 

smoking, watching crime shows on 

television or alcohol. Decrease those 

triggers.

• Look for the feelings behind anxious 

demands. People with breathing problems 

may demand that windows are open on 

a cold day because of feeling they can’t 

get enough air.

• Use gentle touch to calm them. Reassuring 

them that things are under control while 

stroking their hand or the back of their 

neck may help ease the anxious feelings.

• Encourage them to:

» Breathe deeply;

» Spend 20 to 30 minutes doing some 

kind of deep relaxation per day such 

as meditation, prayer, deep breathing 

exercises or visualization;

» Choose some positive statements they 

can repeat again and again that will 

help calm down an anxious person;

» Get regular exercise;

» Stay well hydrated. Dehydration 

contributes to anxiety.

• You can also try to distract them so their 

attention becomes focused on something 

else. Sometimes disrupting the thought 

pattern is enough to stop the repetitive 

thoughts that are causing anxiety.

Disrespectful behavior

• Calm yourself. The natural response to 

being treated disrespectfully is anger. Take 

several deep, relaxing breaths. Wait to 

respond until you can do so more calmly.

• Give clear feedback. Tell the person what 

he or she has done that was disrespectful 

Additional resources

Counting on Kindness: The Dilemmas 

of Dependency (1991). Wendy 

Lustbader. The Free Press, New York. 

1-888-866-6631 (publisher’s toll-free 

order number) or visit www.lustbader.com.

Oregon Family Caregiver Handbook 36
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Family Caregiver Handbook

and how it made you feel.

• Be specific. Use “I” statements, and keep 

your comments brief and factual. “When 

you use that tone of voice with me, it 

upsets me and I feel unappreciated.”

• Set clear boundaries and communicate 

politely how you wish to be treated.

• Respond in a positive rather than a 

negative way.

• Listen to what the person might actually 

be saying behind the disrespectful words.

• Ask the person “What’s wrong? Did I 

do something to offend you? If I did, I’m 

sorry.” This can set the stage to resolve 

rather than fuel the situation.

Challenging behaviors and dementia

Does the care receiver have Alzheimer’s or 

another type of dementia? It is not uncommon 

for a person with dementia to become anxious 

or agitated, to repeat questions over and over, 

to pace or wander, to be suspicious, or to have 

hallucinations or delusions. Such behaviors are 

upsetting to the person with the dementia and 

frustrating for the caregiver. Now is the time to 

get more information and support.

Reach out to organizations that specialize 

in working with people with dementia for 

more specific and detailed information about 

understanding and responding to challenging 

behaviors. These organizations offer information 

over the phone and in written materials. They 

can connect you to local education and support 

groups that can help you.

Alzheimer’s organizations

are a great resource 

for information and 

emotional support 

when dealing with 

challenging behaviors.

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Organizations

Alzheimer’s Association, Oregon Chapter. Call 

the organization’s 24-hour helpline to talk with 

someone who can help you get services and 

support at 1-800-272-3900. You can also go 

to the internet at www.alz.org/oregon.

Alzheimer’s Network of Oregon (serving Marion, 

Linn/Benton and Polk counties). Call 503-364-

8100 or go to www.AlzNet.org. 

Additional resources

“Helping Memory-impaired Elders: a 

Guide for Caregivers” by V.I. Schmall 

and M. Cleland can be found at: http://

ir.library.oregonstate.edu/xmlui/bitstream/

handle/1957/20715/pnw314.pdf.

Alzheimer’s Disease Education and 

Referral (ADEAR) Center, P.O. Box 8250, 

Silver Spring, MD 20907-8250 has a 

multitude of books, pamphlets, videotapes 

on caregiving and dementia on its website 

at www.nia.nih.gov (click on “Alzheimer’s 

Information” under “Health and Aging”).

“The 36-Hour Day: A Family Guide to 

Caring for Persons with Alzheimer 

Disease, Related Dementing Illnesses, 

and Memory Loss in Later Life.” Nancy L. 

Mace, and Peter V. Rabins. Mass Market 

Paperback (2001) (book).

“Caregiver’s Guide to Understanding 

Dementia Behaviors” from the Family 

Caregiver Alliance. Read online at www.

caregiver.org/health-issues/dementia.

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Family Caregiver Handbook

Controlling the spread 

of infection

Caregivers must be constantly alert to the need 

for cleanliness. It is vitally important to prevent 

infections, both for you and the care receiver. A 

care receiver whose immune system is weakened 

by a disease or condition can be at greater risk 

of infection.

Simple infection control practices can help you 

control the spread of germs. Most infections 

are spread through direct contact from one 

person to another or coming into contact 

with something an infected person has used 

or touched.

Basic infection control focuses on killing or 

blocking direct or indirect contact with germs 

so they can’t cause harm.

Hand washing

It is impossible for the human eye to see germs. 

Just looking at your hands will not tell you 

whether they are contaminated with germs. 

Wash your hands frequently throughout the 

day. For example, wash your hands after 

caring for the care receiver’s body or going 

to the bathroom.

Wearing disposable gloves

Wearing disposable gloves is another way to 

control the spread of germs. You will want to 

use disposable gloves made of latex or vinyl. 

Don’t use gloves if they are peeling, cracked or 

discolored, or if they have holes or tears in them. 

Throw them away after each use. Change gloves 

between tasks. Wash your hands or use hand 

sanitizer each time after gloves are removed.

Safety in the home

How to remove soiled gloves

Change gloves between tasks.

2

1

3

4

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Cleaning and disinfecting

There are two steps to clean and disinfect 

any surface. Clean and scrub the surface with 

soap and water. Then disinfect the area with 

a bleach solution or a commercial, household 

cleaning solution.

One teaspoon bleach to one gallon of water 

makes a good disinfectant bleach solution. Use 

the solution within 24 hours. Wear gloves if 

your hands will have frequent contact with the 

bleach solution. Also check the bleach label for 

directions and warning statements.

Areas you will want to clean and disinfect 

include laundry contaminated with body fluids, 

kitchen and bathroom surfaces, bedpans or 

commodes.

Immunizations

Immunizations are another way to protect 

yourself and the care receiver against diseases. 

Make sure you and the care receiver get all your 

recommended immunizations.

Talk with your health care provider or check out 

the additional resources listed below to know 

what immunizations you may need. The Centers 

for Disease Control and Prevention (CDC) 

recommends the following vaccines for adults:

• Tetanus-diphtheria vaccine (every 10 years 

for all adults);

• Influenza (flu) vaccine (every year for 

adults 50 and older);

• Pneumococcal vaccine (once after age 65);

• Herpes zoster (shingles) vaccine (once for 

adults 60 and older);

• Hepatitis B vaccine (adults at risk);

• Measles-mumps-rubella (MMR) 

vaccine (susceptible adults);

• Varicella (chickenpox) vaccine 

(susceptible adults).

One teaspoon bleach to 

one gallon of water makes 

a good disinfectant bleach 

solution. Use the solution 

within 24 hours.

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Family Caregiver Handbook

Home safety

Illness and disability increase the risk of accidents 

in the home. Unfortunately, people often wait 

until an accident happens before they make 

changes. Act now to provide a safer home.

Falls

Falls are a major health problem for older adults 

and can be of concern for people with certain 

developmental disabilities or chronic conditions.

Many things can lead to falls, including:

• Vision and hearing problems;

• Impaired balance or awareness;

• Certain medications;

• Reduced strength;

• Alcohol or drug abuse;

• Hazards in the home such as clutter or 

throw rugs.

Many adults develop a fear of falling 

(especially if they have fallen before) or lose 

confidence in their ability to move around 

safely. Unfortunately, this fear can limit daily 

activities and mobility and increase feelings of 

dependence, isolation and depression.

Preventing falls

You can do many simple and practical 

things to reduce the risk and fear of falling. 

Encourage the care receiver to:

• Do strengthening or 

balance exercises*;

• Have routine eye exams 

and wear glasses;

• Have routine hearing exams 

and wear hearing aids;

• Use a walker or other 

needed assistive devices;

• Exercise*;

• Get up slowly after sitting 

or lying down;

• Reduce fall hazards in 

the home;

• Have medications reviewed 

by a doctor.

* Talk with your doctor before beginning 

an exercise program.

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Footwear

All adults should have sturdy walking shoes that 

support their feet. The best type of shoes to wear 

are those that tie or supportive sneakers with 

thin, non-slip soles and Velcro fasteners to adjust 

for swelling. Avoid wearing slippers, high heels 

and jogging shoes with thick soles.

Reducing fall hazards in the home

• Remove clutter from halls and stairs.

• Remove throw rugs that aren’t securely 

held down.

• Keep floors dry and in good repair.

• Use night lights in bedrooms, bathrooms 

and hallways.

• All rooms, especially hallways and stairs, 

should have good lighting.

• Stairs should have a strong hand rail.

• Vary the colors at floor level so you 

can see steps and edges.

• Keep things used most often on lower 

kitchen cabinet shelves.

• Use hand rails in tubs and next to toilets.

• Use safety toilet seats to make standing 

and sitting easier.

• Use mats in showers and tubs.

What to do if a person is falling

• Don’t try to stop the fall. You could 

both be injured.

• Try to support the care receiver’s head and 

gradually ease him or her onto the floor.

• If you are behind, let the person gently 

slide down your body.

What to do if the person falls and is on 

the floor

• Ask if he or she is OK. Check for bleeding.

• If the care receiver seems injured, is in 

pain or can’t move any part of the body, 

immediately call 911. Many people are 

embarrassed and may want to get up or 

tell you everything is fine even if hurt. 

Observe them carefully.

• If there is no injury, ask if the person if he 

or she can get up safely.

• To help the person stand up from the floor, 

bring a chair close. Ask the care receiver 

to roll onto the side, get on the knees and 

support himself or herself with the chair 

seat while standing up.

• If more than a minimal amount of help is 

needed to get up, do not attempt to 

lift the person by yourself. No one 

can safely lift an average-sized person 

from the floor without help.

The following assistive devices are helpful for 

fall prevention:

• Socks and slippers with anti-slip material 

on the bottom;

• Anti-slip matting for tubs and bathroom 

floors;

• Grab bars to provide stability and support 

in bathrooms and other areas;

• Wheelchair anti-rollback devices to stop 

a wheelchair from rolling away when the 

person stands or lowers into a chair;

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Family Caregiver Handbook

• Chair, bed and toilet alarms to signal when 

the person leaves a bed, chair, wheelchair 

or toilet unattended;

• Hip protectors to protect hips from injury 

in the event of a fall;

• Bedside cushions to help reduce the 

impact of a fall if the person rolls out 

of bed.

General home safety tips

• Keep emergency phone numbers and your 

home address and phone number posted 

by the phone. People often forget this 

information in an emergency.

• Know where any advance directives (see 

page 64) are located and have them 

readily available in case of emergency.

• Consider enrolling in a CPR class. Call 

the American Heart Association’s 

toll-free number (1-800-242-8721) or 

visit www.heart.org/HEARTORG/ and click 

on “CPR &ECC” for a list of local classes. 

Your local fire department or Red Cross 

chapter may also offer classes.

If the person lives alone

You can purchase an electronic device that 

enables someone to call for help in an 

emergency. The system is connected to the 

phone or the person may wear a portable 

“help” button. When the system is activated, 

staff at a response center will respond.

There are many different products on the market 

such as Phillips Lifeline (1-800-380-3111 or 

www.lifelinesys.com/content) or LifeStation 

(1-877-288-4962 or www.lifestation.com) or 

other, more local services. You can also call 

your local Family Caregiver Support Program for 

information about cost and availability.

Home safety tips for people 

with dementia

If the care receiver has poor judgment, memory 

problems or a dementia such as Alzheimer’s 

disease, special safety precautions will help you 

reduce the risk of accidents. Contact any of the 

organizations listed on page 26 specializing in 

dementia for more information.

Additional resource

Home Safety for People with Alzheimer’s 

Disease from the Alzheimer’s Disease Education 

and Referral (ADEAR) Center. Call 1-800-

438-4380 or read online at www.nia.nih.gov/

alzheimers/publication/home-safety-peoplealzheimers-disease.

There are many assistive devices on the market 

today that can help with home safety issues for 

people living with Alzheimer’s and other types 

of dementia or confusion. For example,

• Symbols or warning signs on doors, 

cabinets and dangerous appliances 

can remind a person with dementia 

of unsafe areas around the house;

• Wandering detection systems that alert 

you if the care receiver leaves the room 

or home (all usually require that the 

care receiver wear a small ankle or 

wrist transmitter);

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• Lights that come on automatically when 

a person gets out of bed or a chair or 

opens a door during the night (motion 

sensor lights can typically be purchased at 

hardware stores such as Home Depot or 

Lowes or from Radio Shack, or they can be 

ordered from Amazon);

• A No Start Car Disconnect Switch disables 

the car so it will not start (go to www.

alzstore.com/ to purchase or for more 

information about dementia and driving, 

go to www.alz.org/care/alzheimersdementia-and-driving.asp).

On the national level, the Alzheimer’s 

Association’s Safe Return®

 is a nationwide 

identification, support and enrollment program 

that provides assistance when a person with 

dementia wanders and becomes lost. Assistance 

is available 24 hours a day, 365 days a year. 

If an enrollee is missing, one call immediately 

activates a community support network to help 

reunite the lost person with his or her caregiver. 

Call 1-888-572-8566 or go to medicalert.org/

safereturn for more information.

Another program called Project LifeSaver is 

available in some Oregon communities. Project 

LifeSaver relies on proven radio technology and a 

specially trained search and rescue team. Clients 

enrolled in the Project LifeSaver program wear 

a personalized wristband that emits a tracking 

signal. When the local Project LifeSaver agency 

is notified that the person is missing, a search 

and rescue team quickly finds the individual with 

a mobile tracking system. To find out if Project 

LifeSaver is available where you live, call your 

local police or county sheriff’s office or Project 

Lifesaver International at 1-877-580-LIFE (5433) 

or visit www.projectlifesaver.org.

National and local programs 

can help find people with 

dementia when they are lost.

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Family Caregiver Handbook

Whether it starts as an emergency or as a 

planned admission, a hospital stay is an added 

challenge in caregiving and often results in a 

series of transitions to different health care 

settings. Knowing what to expect can help 

you and the care receiver.

Hospital admission

If a hospital admission is planned (rather than 

the situation being an emergency), you can ask 

questions in advance. Be sure you ask what 

exactly the admission is for, how long the 

person will be hospitalized, whether 

rehabilitation (rehab) will be needed after 

the hospital stay or the care receiver will be 

able to go home, and what kind of care will 

be needed when the person gets home.

Take the following items with you to the 

hospital:

• The care receiver’s insurance information 

and identification card; 

• A list of his or her doctors with their 

phone numbers; 

• A list of recent test reports, lab results and 

x-rays (or actual copies if you have these);

• Names and doses of all medications; a list 

of any allergies to medicine or food;

• Health care proxy and advance directives; 

and 

• Any personal items that may make the 

hospital stay more comfortable (e.g., 

newspapers, books, cell phone, slippers, 

a favorite pillow).

During the hospital stay, remember you are a 

critical part of the care team. Ask questions, 

write down all instructions and plans for 

discharge, let the doctors or nurses know if you 

don’t fully understand what’s happening, and let 

a doctor or nurse know if you do not feel ready 

to care for the care receiver after discharge.

Going to the hospital and 

transitioning to home

Knowing what to expect from a 

hospital stay can help you and 

the care receiver.

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Hospital admission or 

observation status?

Sometimes doctors and hospitals keep a patient 

for a few hours or a day to see whether there is 

really a need to be admitted to the hospital. This 

is called “observation.” Medicare pays differently 

for hospital admissions than for observation. 

Your bill is likely to be higher if the patient is 

only being observed than if he or she were 

actually admitted. To be eligible for Medicarecovered skilled nursing facility services, one must 

have been a hospital inpatient for at least three 

days. The observation days do not count.

• Ask (repeatedly if you don’t get a clear 

answer!) whether your family member has 

been officially admitted to the hospital or 

is under observation status. Note the name 

of the hospital staff person and date of the 

response. 

• To appeal a decision the hospital makes 

regarding observation status, you can 

contact Livanta, LLC, which is Oregon’s 

quality improvement organization for 

Medicare beneficiaries, at 1-877-588-1123 

or at http://bfccqioarea5.com/.

Hospital discharge — going home

Planning for care after a hospital discharge 

can be stressful. Be sure to ask to speak to a 

discharge planner or case manager well before 

your family member is discharged — several 

days before discharge if possible. This hospital 

staff person should explain discharge options 

and help you consider how to get any needed 

Before you leave the hospital:

❑ Be sure you have clear instructions on 

what medications the care receiver 

should take, including any new 

medications and any changes to 

previous medications.

❑ Do you have information on what 

recovery to expect in the first few days 

after leaving the hospital? Ask what 

“red flags” of need for immediate 

care you should watch for, and who 

you should call if you have concerns or 

questions once you leave the hospital.

❑ Make sure a follow-up appointment is 

scheduled for within seven days with 

the care receiver’s regular doctor. This 

follow-up appointment is critical to 

avoiding a follow-up hospitalization. If 

possible, make this appointment before 

you leave the hospital. When you call, 

be sure to say that the patient is being 

discharged from the hospital and you 

will need an appointment right away. If 

you have trouble getting an appointment 

within seven days, ask to speak with a 

nurse, or ask the doctor at the hospital 

to contact your regular doctor.

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Family Caregiver Handbook

follow-up care. 

As a caregiver, you have the right to be involved 

in choosing where the care receiver will go 

after discharge and when the person will be 

discharged. You also have a right to clear care 

recommendations. 

Ask about any follow-up instructions: Will the 

person need special foods or diet? Will there be 

any follow-up medical tests or appointments? 

Will medications change? 

• If the care receiver will need rehab, ask 

about options for where rehab can be 

provided: at home through home health, 

at an outpatient rehab facility, or at a 

skilled nursing facility.

• If the care receiver is being referred for 

home care services, ask what services he or 

she will need (i.e., nursing or occupational, 

physical or speech therapy). Find out if 

the hospital will arrange this or if you will 

set this up, and ask how much Medicare 

or other insurance will pay.

• If the care receiver will need additional 

care that is not covered by Medicare, 

contact your local ADRC to find out about 

other support and in-home care options in 

your community.

Additional resources

• Next Step in Care from United 

Hospital Fund has very helpful 

checklists and guides for family 

caregivers on hospital admission, 

planning for surgery, transitioning 

home, and hospice and palliative 

care. These resources are available 

free online at www.nextstepincare.

org. 

• Your local ADRC can explain options 

for long-term care services in your 

community. Some ADRCs also offer a 

Care Transitions program specifically 

designed to help individuals move 

back home after a hospitalization 

and avoid having to be readmitted 

to the hospital. Call 1-855-673-

2372, 1-855-ORE-ADRC. 

• You can contact Livanta, LLC, which 

is Oregon’s quality improvement 

organization, to appeal a hospital 

decision relating to observation 

status or a hospital discharge that 

you feel occurred before the patient 

was ready. 

Contact Livanta, LLC at 1-877-588-

1123 or at http://bfccqiorea5.com.

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We all need to find pleasure in our daily lives. 

Some of the most important care you give 

doesn’t have anything to do with medicine, 

baths or helping the care receiver eat. A laugh 

or a shared cup of tea is as important for the 

care receiver’s well-being as any physical care 

you provide.

Enjoying life’s pleasures doesn’t have to end 

when illness or disability strikes. As you continue 

your time as a caregiver, stop and smell the 

roses along the way. Don’t forget to share their 

wonderful aroma with the care receiver.

Good health is more than a healthy body. You 

both will live better and enjoy life more if you 

care for your emotional and spiritual needs.

The importance of social connections

Caring for another person can dramatically 

change your social life. It may be hard for you 

to get out and socialize. Friends may no longer 

come to visit or include you in their activities. 

You and the care receiver may begin to feel 

lonely and isolated. The following ideas will help 

you both keep up social connections with others.

Encourage people to visit

• Getting out to visit friends and family 

may be difficult for you. Encourage others 

to visit.

• Be honest about your limitations. “I’m just 

not able to invite you for dinner, but we’d 

love to have you stop by for some ice 

cream later.”

• If it’s hard for others to visit, suggest 

they send cards or letters or make short 

phone calls.

• Help put visitors at ease. If friends seem 

uncomfortable around the person, it may 

be helpful to explain the illness. “Jill’s 

illness isn’t contagious. It does make her 

short of breath, so talking tires her out.”

• A successful visit doesn’t have to only 

revolve around conversation. Read aloud, 

take a walk outside, play cards or watch 

a ball game together. These activities are 

often more enjoyable for both people.

Enhancing daily life

Good health is more than a 

healthy body. You and the care 

receiver will both live better 

and enjoy life more if you 

care for your emotional and 

spiritual needs.

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Family Caregiver Handbook

Senior centers

If you care for a person aged 60 or older, he 

or she may enjoy organized activities at a 

senior center. Senior centers are facilities in 

a community where older people can meet, 

share a meal, get care services and take part in 

recreational activities. Just as important, these 

programs give you regularly scheduled breaks.

Look in the yellow pages under “Seniors or 

Senior Services” to find your local senior center 

or visit www.ADRCofOregon.org. You can also 

call Information and Assistance staff at 1-855-

673-2372 for a list in your area.

Adult day service programs

Adult day service programs offer recreational and 

health services for adults who need more support 

and care assistance than senior centers can 

provide. This program lets the person continue to 

live in his or her own home, yet allows the family 

member to work or have respite from day-to-day 

caregiving responsibilities. For a listing of adult 

day service programs in your area go to www.

ADRCofOregon.org. Information and Assistance 

staff can also provide information on adult day 

service programs; call 1-855-673-2372. 

Keeping your mind active

The brain is like a muscle — it needs regular 

workouts. Even if the body is failing, most people 

can keep a healthy, active mind throughout life. 

Here are a few suggestions.

• Keep up your social life.

• Engage in plenty of stimulating 

conversations.

• Read a variety of newspapers, magazines 

and books.

• Play games like Scrabble, cards and chess.

• Take a class on a subject that interests you.

Maintain spiritual practices

The search for meaning and spiritual 

connection provides a great deal of support 

and comfort for many people experiencing a 

health crisis or long-term illness. If religion 

has been an important part of your lives, it is 

important to continue to create opportunities 

for spiritual connection.

The ritual of physically going to church or 

temple or attending any other form of 

spiritual activity makes it possible to get out 

into the community and connect with others. 

If it is difficult for the care receiver to leave 

home, you can:

• Read passages from religious books;

• Arrange for a member of the clergy, 

lay minister or parish nurse to visit;

• Play sacred music on the radio;

• Watch church services on television;

• Continue meaningful rituals like 

prayers before meals;

• Pray together;

• Sing or listen to spiritual music;

• Use services and liturgies that the 

person remembers.

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• Begin a new hobby.

• Learn a new language.

• Do crossword puzzles and word games.

• Write letters.

• Listen to books on tape. Borrow them 

from the library, rent them at video 

stores or trade with friends.

If the care receiver has dementia, some of 

these activities may be frustrating. If they are 

too difficult or stressful, change activities or 

modify them to make them easier. Find activities 

you enjoy and invite the person to participate 

in some way.

For more information on planning activities 

for a person with dementia, visit www.alz.org 

(click on “Living with Alzheimer’s”).

The importance of good nutrition

Good eating habits keep your body healthier 

and improve how you feel. Making even one 

improvement in your diet will be a step toward 

healthier eating for you and for the care receiver.

To avoid disease, the Dietary Guidelines for 

Americans recommend:

• Balance calories with physical activity to 

manage weight.

• Consume more foods that are high in 

nutrients such as fruits, vegetables, whole 

grains, fat-free and low-fat dairy products 

and seafood.

• Consume fewer foods with salt, saturated 

fats, trans fat, cholesterol, added sugars 

and refined grains.

The importance of water

Getting enough fluids each day is one of the 

most important dietary additions for most 

people. Dehydration is a real danger for people 

who are ill or disabled, and it can easily be 

avoided. Dehydration is the leading cause of 

afternoon fatigue.

Most adults need at least eight 

glasses of liquid each day.

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Family Caregiver Handbook

Adults need at least (8) eight glasses of fluid 

each day (unless otherwise instructed by a 

health care provider). Fluids can be taken 

in many forms such as water, fruits and 

vegetables, 100 percent fruit juice, low-fat 

milk, decaffeinated tea or coffee, broth 

or soups.

• Offer drinks frequently throughout the 

day. It is also a good idea to keep a glass 

of water by the person’s chair or bed.

• Be aware that some medications can 

dehydrate a person and an older 

person’s kidneys may need more fluid 

to function properly.

• Some caregivers believe that cutting 

back on liquids will reduce incontinence 

(accidents). In fact, too little liquid causes 

strong urine which can irritate the bladder 

and cause a urinary infection.

• If it is difficult for the person to swallow 

water or clear liquids, slightly thicker 

liquids like nectars, cream soups or 

milkshakes may be easier. Commercial 

thickening agents like Thickit are available.

• Watch for symptoms of dehydration 

such as dry, sticky mouth or tiredness/

decreased activity, thirst, decreased urine 

output, headache, dry skin, constipation 

and dizziness. 

Your local ADRC can talk to you about the 

variety of nutrition services and information 

offered. Contact the ADRC at 1-855-673-2372 

(1-855-ORE-ADRC). Also about the Senior 

Farmer’s Market Program. This program provides 

vouchers for fresh local fruits and vegetables in 

counties throughout Oregon.

Additional resources

For more nutrition information, visit 

the Academy of Nutrition and Dietetics 

websites at www.eatright.org and www.

nutrition.gov.

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The importance of physical activity

Many people with some level of disability or 

chronic illness assume it is too late to make 

changes. By age 75, one in two women and 

one in three men get no physical activity at all!

However, there is strong, scientific evidence that 

it is rarely too late for healthy lifestyle choices 

to positively, and often greatly, affect a person’s 

physical, emotional and mental health.

As a caregiver, help the care receiver remain as 

physically active as possible. This can mean:

• Having a good understanding yourself 

about the key benefits of remaining active;

• Serving as a role model by making healthy 

choices and being physically active;

• Encouraging the caregiver to talk with 

a doctor about this issue and steps that 

can be taken to stay or become more 

physically active.

The importance of physical activity 

for you

Many people think being physically active means 

playing sports or going to a gym and getting 

hot and sweaty. In reality, there is now strong 

scientific evidence that moderate physical activity 

— like taking a brisk walk for 30 minutes each 

day most days of the week — is enough to see 

real health benefits and prevent certain diseases.

Staying physically active

Staying active works best when you do 

the following:

• Match your interests and needs to the 

activity. Choose an activity you are 

enthusiastic about doing.

• Alternate new activities with old 

favorites to keep things fresh.

• Get a family member or friend to 

do the activity with you.

• Put physical activity on your calendar 

along with other important activities.

• Remember that something is better 

than nothing. Shoot for shorter, more 

frequent sessions rather than the 

occasional prolonged session.

• Make use of everyday routines. Take the 

stairs instead of the elevator, use a rake 

rather than a leaf blower, walk or bike to 

the corner store instead of driving, or do 

stretching exercises while watching TV.

Additional resources

“Exercise & Physical Activity: Your Everyday 

Guide from the National Institute on Aging” 

is a free booklet that gives examples and 

illustrations on strengthening, endurance, 

balance and flexibility exercises. Read it online 

at www.nia.nih.gov/health/publication/healthyaging-longevity or request a copy by calling 

1-800-222-2225.

Visit www.ADRCofOregon.org (click on 

“Healthy Living”) for more information and 

internet links on this subject.

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Family Caregiver Handbook

Caring for others is filled with many mixed and 

varied emotions such as feelings of love, loss, 

anger, affection, sadness, frustration and guilt.

It’s not uncommon for family caregivers to feel 

lonely and isolated. It takes a lot of physical, 

mental, spiritual and emotional energy to care 

for someone else.

You’ve probably heard it before — you 

need to take care of yourself! That can seem 

overwhelming and often requires energy and 

support to help make some changes.

The importance of 

emotional support

It’s important for you to feel emotionally 

supported. Current research is clear that those 

who get emotional support while caregiving 

fare far better and provide care longer than 

those who don’t.

Family and friends, while a valuable emotional 

support system for some, may not always be 

available or particularly helpful now. This is not 

unusual. Changing family roles, unresolved past 

The emotional challenges of caregiving

How well are you taking care of yourself?

Take a few moments and honestly assess how you are doing in the following areas of self-care. 

If you answer “sometimes” or “no” to several of the questions, you may need to look at how 

well you are taking care of yourself.

Have you created a circle of support by maintaining 

family relationships and friendships?

Yes  Sometimes  No 

Do you say “no” to requests for your help if you 

can’t realistically accomplish them?

Yes  Sometimes  No 

Do you ask for help from family or friends when 

you need it?

Yes  Sometimes  No 

Are you open to using community resources or 

services for yourself and/or the care receiver?

Yes  Sometimes  No 

Are you taking breaks from your caregiving 

duties?

Yes  Sometimes  No 

Are you eating well? Yes  Sometimes  No 

Are you getting enough sleep? Yes  Sometimes  No 

Do you relax each day? Yes  Sometimes  No 

Have you laughed today? Yes  Sometimes  No 

*excerpted from Minnesota Board on Aging

Oregon Family Caregiver Handbook 53
42

family dynamics and stress brought on by the 

care receiver’s health, can strain even the best 

of support systems and relationships.

It’s important to pace yourself. It’s often 

difficult to know how long you’ll need to 

provide care or if your caregiving will become 

more demanding over time. This job doesn’t 

come with a job description!

Taking care of yourself is about meeting your 

needs so that you are physically, emotionally 

and spiritually ready to meet the needs of the 

care receiver. Caring for your own needs is as 

important as taking care of the other person. 

If you are sick or become physically or mentally 

exhausted, you can’t care for someone else.

What is good self-care?

There are no rules about good self-care except 

it should help you to feel replenished, comforted 

and relaxed. There are a variety of positive ways 

people use to relax, de-stress and refuel their 

mind/body/spirit.

• Schedule time away on a regular basis. It 

is absolutely necessary to get relief from 

your caregiving role in order to maintain 

your own emotional and physical health.

• Stay socially connected and involved 

with activities and people that bring 

you pleasure.

• Keep yourself physically and mentally 

healthy.

• Make sure you eat a healthy diet and get 

some form of exercise as often as possible.

Tips for finding or making time 

for good self-care

• Change when you do favorite things. 

Caregiving needs often change your 

former daily routines. You may need 

to pick a new time or day to do your 

favorite activity.

• Change where you do favorite things. 

Before you give up your lunch with 

friends, think about having your friends 

bring lunch to your home. If possible, 

arrange to have someone sit with the 

care receiver.

• Change the length of your favorite thing. 

A quick walk around the block will never 

replace the long walks you once enjoyed. 

However, that quick walk can help give 

you enough of a break to come back 

feeling recharged.

Powerful Tools for 

Caregivers is a six-week 

workshop offered in many 

Oregon communities. 

It provides information 

and tools for good 

self-care. Call your ADRC 

at 1-855-673-2372 to find 

out about Powerful Tools 

workshops in your area. 

Oregon Family Caregiver Handbook 54
43

Family Caregiver Handbook

• Protect your health. Make sure to make 

and keep medical and dental appointments 

for yourself.

• Be kind to yourself. Give yourself credit for 

the things you do well. Treat yourself to a 

small reward when you’re feeling low. This 

can be as simple as taking the time for a 

long, hot bath.

• Be honest with friends and family about 

your needs.

Managing stress

Stress is a normal part of everyday life. Although 

small amounts of stress can keep you alert, too 

much stress for long periods of time is hard on 

your body, mind and spirit.

Under stress, your body goes on high alert. 

Essential body functions, like respiration and 

heart rate, speed up. Less essential functions, 

such as the immune system, shut down. This 

puts you at greater risk for infections, certain 

diseases, depression or anxiety.

Caregivers often experience a higher rate of 

stress, anxiety and depression than those who 

aren’t caregivers.

Tips for reducing stress

• Ask for and accept help. (See “Asking for 

help from family and friends,” page 51.)

• Set limits and let others know what 

they are.

• Make sure you have realistic goals and 

expectations of yourself and others.

• Don’t expect to keep a perfect house or 

Symptoms to watch for

You may be experiencing too much caregiver 

stress if you notice any of the following 

symptoms listed below.

• Sleeping problems — sleeping too much 

or too little;

• Change in eating habits — resulting in 

weight gain or loss;

• Feeling tired or without energy most of 

the time;

• Loss of interest in activities you used to 

enjoy such as going out with friends, 

walking or reading;

• Being easily irritated, angered or 

saddened;

• Frequent headaches, stomach aches or 

other physical problems.

Source: National Women’s Health Information Center, 

www.WomensHealth.gov

Oregon Family Caregiver Handbook 55
44

entertain the way you did before you 

took on a caregiving role. Holidays 

may need to be simplified and you 

can divide up responsibilities between 

other family members.

• Humor is often the best medicine. Rent a 

movie or watch a TV program that makes 

you laugh. Read a funny book. Humor can 

work wonders for relieving stress.

• Find support through understanding 

friends, support groups or a professional 

counselor.

• Avoid difficult people such as overly 

critical friends.

• Practice deep breathing exercises, yoga 

or meditation.

• Write in a journal.

• Try closing your eyes and imagining 

yourself in a beautiful place surrounded 

by your favorite things.

• Make a list of your own stress relievers. 

Keep it in a handy place and use it!

Depression

If you suspect you or the care receiver may be 

depressed, look at the checklist below. Check 

the signs that apply to you or the care receiver.

Signs of depression

Physical signs

• Aches, pains or other physical complaints 

that seem to have no physical basis;

• Marked change in appetite (or weight loss 

or gain);

• Change in sleep patterns (insomnia, early 

morning waking, sleeping more than 

usual);

• Fatigue, lack of energy, being “slowed 

down.”

Emotional signs

• Pervasive sadness, anxiety or an 

“empty” mood;

• Apathy (lack of feeling anything at all);

• Decreased pleasure or enjoyment;

• Crying for no apparent reason, with 

no relief;

• Indifference to others.

Changes in thoughts

• Feelings of hopelessness, pessimism;

• Feelings of worthlessness, inadequacy, 

helplessness;

• Inappropriate or excessive guilt;

• Inability to concentrate or slowed or 

disorganized thinking;

• Forgetfulness or problems with memory;

• Indecision or inability to take action;

• Recurring thoughts of death or suicide.

Changes in behavior

• Loss of interest or pleasure in activities 

previously enjoyed, including sex;

• Neglect of personal appearance, hygiene, 

home or responsibilities;

• Difficulty performing ordinary daily tasks 

that seem overwhelming;

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Family Caregiver Handbook

• Withdrawal from people and usual 

activities and wanting to be alone;

• Increased use of alcohol and drugs;

• Increased irritability, arguing or hostility;

• Greater agitation, pacing, restlessness, 

hand wringing;

• Suicide attempts or talking about suicide.

If you or the care receiver shows several of these 

signs of depression for more than two weeks, 

see a doctor. The first step is a complete physical 

examination to rule out any medical problems. 

A doctor may also prescribe medication that can 

help. Sometimes counseling with a therapist is 

useful by itself, or in combination with medication.

If the care receiver is depressed and refuses to 

get help, you can visit a therapist yourself. This 

can help you better understand depression and 

help in the recovery process.

Suicide

Factors that put a depressed person at high 

risk for suicide are:

• Severe personal loss of their own health 

or of someone or something significant 

in their lives;

• Feelings of hopelessness and helplessness;

• Living in social isolation;

• A prior suicide attempt;

• Alcohol or drug abuse;

• Expressions of worthlessness such as 

“Everyone would be better off if 

I’m gone”;

• A detailed suicide plan;

• A readily available lethal weapon, 

especially a gun.

Grief and loss

It is common for caregivers to experience loss 

— not only for yourself but the care receiver. 

Losses can include things like the loss of 

physical abilities, relationships, social social 

activities, income, financial security, feelings 

of purpose and meaning, privacy, control and 

independence.

Grief is a normal reaction to loss. Grief is a 

process. Grief does not proceed in a fixed order 

any more than life itself does. Many and varying 

degrees of emotions and reactions appear and 

disappear, only to reappear again.

Continued on page 49

If you or the care receiver 

is at serious risk of suicide, 

get immediate professional 

help through a local crisis 

line, a mental health clinic, 

a hospital emergency 

room, the police or other 

emergency service. Lines for 

Life is a 24/7 crisis line at 

1-800-273-TALK (1-800-273- 

8255). The Military Helpline 

can be reached at 1-888-

457-4838. 

Oregon Family Caregiver Handbook 57
46

Common grief responses

What you hear What you feel What may help 

Shock/numbness

This is nature’s way 

of protecting you, or 

helping you to cushion 

your mind and heart 

until you are ready to 

face the emotions of 

grief.

I’m on automatic pilot.

It seems like a bad 

dream.

I feel as if I’m walking 

in a fog.

It can’t really be true.

Like a robot

Bewildered with 

no destination

Numb, with frozen 

emotions

Approach shock by:

• Taking care of 

yourself;

• Eating nutritious 

meals, even if only 

a small portion;

• Walking, 

gardening and 

exercising.

Anger

This natural reaction 

may be directed at 

ourselves, others, the 

person you lost or God.

Why me?

Why her?

Why now?

How dare they do that?

Irritable

Over-reactive to small 

things

Blaming others

Out of control

Release anger by:

• Walking, 

swimming, 

exercising;

• Cleaning, washing 

the car;

• Screaming into a 

pillow.

Guilt

These feelings are 

natural, although not 

always realistic.

If only...

Did I do the right thing? 

I wish I had ...

Responsible for something that you didn’t do

Remorseful

Ashamed

Work with guilt by:

• Talking over 

feelings with 

someone who will 

listen.

Relief

A sense of natural relief 

can follow the death of 

someone you cared for.

At last it is over.

I’m glad he is no 

longer suffering.

I don’t have to worry 

now.

Lighter

More free

Like a weight is lifted 

from your shoulders

Respond to relief: 

• With 

acceptance — 

not guilt.

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Family Caregiver Handbook

Common grief responses (continued)

What you hear What you feel What may help 

Anxiety/panic

Some anxiety is normal. 

However, if anxiety 

persists and affects your 

functioning, seek care 

from a professional.

Am I going crazy?

Will I ever feel better?

How can I function?

Afraid to be alone

Worry about the future 

Fear something else will 

happen 

Immobilized

Losing control

Address anxiety by:

• Talking about 

feelings;

• Engaging in 

physical activity.

Depression

Some depression is a 

very normal part of grief 

and should lessen over 

time.

If depression continues 

and interferes with 

daily living, or if you are 

seriously considering 

ending your life, seek 

professional care at 

once.

What’s the use?

How can I go on?

Life is the pits.

It’s all hopeless.

I’m exhausted.

Hurt, sad, empty, 

helpless

No desire to eat

Unable to sleep or sleep 

more than usual

Headache, backache, 

upset stomach 

Unable to concentrate

Unable to enjoy others/

no interest in past 

pleasures

Respond to depression 

by:

• Talking it over 

with others;

• Doing something 

special for yourself 

or another;

• Walking, 

swimming, 

gardening.

Sadness/loneliness

The initial visitors have 

gone and returned 

to their daily lives. 

Naturally, the feelings 

of facing grief alone 

arise.

The house seems so 

empty.

Nights are the hardest.

Overwhelming sadness 

and emptiness

Isolated

Attend to loneliness by: 

• Going to a support 

group to share 

the pain and learn 

new ways to cope.

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48

Common grief responses (continued)

What you hear What you feel What may help 

Confusion/difficulty 

concentrating

Your energy is focused 

on your heart, not your 

head. This stage will 

pass.

I feel like I am losing my 

mind.

I just can’t remember 

things.

People say things to 

me and I don’t 

understand them.

I keep losing my keys.

Disorganized

Absent-minded

Frustrated

Inability to follow 

a conversation

Treat your confusion by: 

• Being gentle with 

yourself;

• Making lists;

• Asking others to 

remind you of 

important dates 

and times.

Grieving behaviors

All of this is a natural 

part of the grief 

process. You are not 

going crazy.

Behaviors can include:

• Talking to your 

loved one as you 

go about your day;

• Finding yourself 

repeatedly 

reviewing the 

events leading up 

to the death;

• Hearing your loved 

one’s voice.

Behaviors can include:

• Visiting the 

cemetery often or 

refusing to go at 

all;

• Dreaming about 

your loved one or 

becoming upset 

that you don’t 

dream of her/him.

Respond by:

• Accepting yourself 

and where you 

are today — but 

if you continue 

to experience 

difficulties with 

eating or sleeping 

or are seriously 

considering 

ending your life, 

seek professional 

care at once.

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Family Caregiver Handbook

Grief is not limited to just your emotions. Grief 

can also affect your thoughts, physical body and 

relationships. It can create spiritual turmoil.

When moving through the grieving process, 

acknowledge, feel and express all of the 

emotions and reactions brought on by the 

loss(es) you have had or are experiencing.

Be a good listener to yourself. Let yourself feel 

your emotions. This is valuable information. Try to 

understand what your feelings are telling you. Be 

patient. Everyone grieves in his or her own way and 

time. Good self-care is essential during this time.

The following chart from the American Society 

on Aging provides some helpful information.

Hospice care

Hospice care involves a team of professionals 

and volunteers who provide medical, 

psychological and spiritual care for people 

near the end of life and their families.

The goal of hospice care is to help make sure 

people’s last days are spent with dignity and 

quality, surrounded by the people they love.

Hospice care can be given in a person’s home, 

a hospital, nursing home, adult foster care 

home, residential care, assisted living, memory 

care community or a private hospice facility. 

A doctor’s referral is needed. Hospice care 

providers are listed in the yellow pages or check 

with your local senior information and assistance 

office (see page 55).

When you may need 

professional help

There are some occasions where the stress of 

caregiving puts you at risk of harming yourself 

or your loved one. Danger signals may be:

• Using excessive amounts of alcohol or 

medications like sleeping pills;

• Loss of appetite or eating too much;

• Depression, loss of hope, feelings of 

alienation;

• Thoughts of suicide;

• Losing control physically or emotionally;

• Neglecting or treating the care receiver 

roughly.

If you experience any of these symptoms, you 

are carrying too great a burden. Consider 

professional counseling or talk to your doctor 

about your feelings. Your doctor may recommend 

a counselor, or you can contact your local 

hospital, ask trusted friends if they know of 

someone, or look in or the yellow pages to find 

a psychologist, social worker, counselor or other 

mental health professional.

Your local Family Caregiver Support Program 

staff can be a good resource for information 

or referrals.

Additional resources

Visit Oregon Hospice Association’s website 

at www.oregonhospice.org to learn more 

about hospice or find a listing of local 

hospice organizations.

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50

Adult abuse

If you have any concern that you may hurt the 

person you are caring for, get help immediately. 

There are many resources already discussed in 

this booklet that can help.

If you suspect abuse and are unsure what to 

do then call the Adult Protective Services office 

in your area or your local law enforcement. If 

the person is in immediate danger, call 911. 

If you are unsure who to talk to, you can call 

the DHS Office of Adult Abuse Prevention and 

Investigation at 1-855-503-7233 (or 1-855-503-

SAFE). You can get more information at www.

oregon.gov/dhs/abuse/Pages/report.aspx. 

Financial exploitation

It is estimated that older Americans lose an 

estimated $2.9 billion annually to financial 

exploitation. Many older adults may need 

help in making sound financial decisions 

such as whether they should apply for a 

reverse mortgage, information on long-term 

care insurance or how not to fall victim to 

clever scams. A Federal Deposit Insurance 

Corporation website, www.consumerfinance.

gov/older-americans, gives information and links 

to other agencies to help the older adult and 

family members make better financial decisions.

If you suspect abuse and are 

unsure what to do, call the 

DHS Office of Adult Abuse 

Prevention and Investigation 

at 1-855-503-7233 

(1-855-503-SAFE).

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Family Caregiver Handbook

Asking for help from family 

and friends

Although it is hard to ask for help, it’s even 

harder to provide care alone! It’s not a sign 

of weakness to ask for help. Instead, it’s an 

important step in making sure the care 

receiver gets the help he or she needs.

Sometimes caregivers feel like they’re carrying 

the whole load and others aren’t doing their 

share. If you feel this way, it’s possible that 

you may have refused help at an earlier point 

when the job was less demanding. It is also 

possible that:

• Other people in your life think you have 

the job under control.

• They don’t know what to do. People 

aren’t mind readers, but most say “yes” 

when asked.

They are afraid or uncomfortable around 

illness or disability. Offer information about 

the condition to make it less frightening. 

“It’s not contagious,” or “Bill can’t carry 

on a conversation anymore, but he loves to 

have someone read or sing to him” for people 

who are afraid or uncomfortable around illness 

or disability.

How to ask for help

Like anything new, it may feel uncomfortable 

to ask for help. The following ideas will help 

you get started.

Make a list

• Figure out what help is needed. Make sure 

you think about everything you could use help 

with, not just direct caregiving jobs. Other 

people may find it easier to do yard work, 

home repairs, laundry or meal preparation 

than to provide direct care. Anything that will 

lighten your load is important.

• Make a list of what needs to be done.

• Check off what you can reasonably do.

• Decide what’s realistic for family and 

friends to do.

• Find out if there are any services, programs 

and resources available in the community 

to help (see page 52).

Ask for help

Keep your list handy so that you’re prepared to 

suggest tasks if people call or ask if they can 

help. If you don’t need their help right away, 

thank them and ask if you can get back 

to them when you need help in the future.

• Be specific. “I need someone to take 

Sarah to her doctor’s appointments 

every Wednesday.”

• Be positive. “It’s a big help when someone 

else does the grocery shopping.”

• Offer choices. “Could you pick up the 

prescriptions at the pharmacy tomorrow 

or stay here with Armando while I go?” 

Remember. It may take awhile to feel 

comfortable asking for help. But take the 

first step. Come up with a plan and try it out. 

Chances are you’ll find that it gets easier with 

Where to turn when you need help

Oregon Family Caregiver Handbook 63
52

time.

Hold a family conference

Caregiving can bring families together, especially 

when everyone feels they have an important 

role to play. Even out-of-town family members 

can help by managing the bills or helping with 

household repairs when they visit.

Holding a family conference is a good way to 

get everyone in the same room and come up 

with a plan.

It may take more than one conversation to figure 

out what to do. Many small steps are better than 

one huge leap that leaves everyone upset and 

more confused.

Some family members may want to do something 

nice for you because of all you do for the care 

receiver. Don’t feel offended or patronized. 

Accept it for what it is — a thank you for all 

you do.

Family Caregiver Support 

Program (FCSP)

In the Family Caregiver Support Program, 

experienced caregiver specialists or advocates 

offer you practical advice and emotional support. 

Either in person or by phone, these professionals 

listen to your questions and concerns and 

understand the challenges you face. The Family 

Caregiver Support Program is a resource of the 

ADRC; call 1-855-673-2372 (1-855-ORE-ADRC).

The following are some of the many ways the 

Family Caregiver Support Program may be of 

help to you. It only takes a phone call!

Family caregiver counseling

A counselor can help you learn to cope more 

effectively with the emotional demands, or even 

depression, that can result from caregiving. 

The counselor can help you work through 

feelings of grief and loss, problem-solve difficult 

relationships or situations, and work through any 

stress, anger and guilt related to caregiving.

Caregiver training

Powerful Tools for Caregiving is an example of 

one educational series developed specifically 

for family members caring for someone with a 

Help is a phone call away!

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Family Caregiver Handbook

chronic illness. You will learn a variety of selfcare tools and strategies to reduce your stress, 

communicate more effectively with family and 

health care providers, deal with difficult feelings, 

and make tough caregiving decisions.

Caregiver support groups

A caregiver support group is a tremendous 

source of information and support. Learning 

from others who have been in similar situations 

to yours will give you new ideas to cope with 

trying times. Knowledge that you’re not alone 

and that others have gone through what you’re 

going through brings comfort to many people.

For many caregivers, support groups offer a 

chance to share feelings honestly, without 

having to be strong or put up a brave front 

for the family. No one understands as well as 

a fellow caregiver.

Even if you’ve never belonged to a support 

group before, consider finding one for 

caregivers or one that is specific to your 

situation. For instance, there are groups for 

people who are caring for someone who has 

had a stroke or has Alzheimer’s disease, cancer, 

AIDS or other disease.

Respite care

Respite care is a service where another trained 

person or staff at a facility provides short-term 

care for a few hours to a few days for your loved 

one, giving you some time away from caregiving. 

Respite care can be in your home, through an 

adult day service program, or at a residential 

care facility, assisted living facility or adult 

foster home.

Information about services

There are so many services, programs and 

resources available that it can be hard to know 

where to start or how to get them. Staff at your 

local Family Caregiver Support Program are well 

acquainted with what services are available 

where you live.

Contact your local Family Caregiver 

Support Program

If any of the caregiver support services sound 

interesting to you, call your local Family 

To contact your local Family 

Caregiver Support Program, 

call toll-free 1- 855-673-

2372 (1-855-ORE-ADRC) 

or find it online at

www.ADRCofOregon.org.

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Caregiver Support Program.

Working with your employer

It is estimated that half of all caregivers are 

employed full-time. If you are an employed 

caregiver, you may be struggling to balance 

your time and energy between work and home.

In addition to all of the other suggestions 

found in this section for important self-care, 

the following are some suggestions on how 

to work with your employer.

Take advantage of workplace policies 

and benefits such as:

• Flexible and reduced hours, work at 

home or telecommuting;

• Employee assistance programs (referral 

to counseling, community services);

• Family and Medical Leave Act (allows 

time off for caregiving responsibilities);

• Dependent care assistance programs 

that allow employees to set aside 

before-tax dollars to pay for eldercare/

caregiving services.

Talk with your supervisor about your caregiving 

issues. Openly and honestly describe the 

situation before it becomes a problem. It’s 

better for your employer to understand what is 

happening than draw an inaccurate conclusion.

Keep as clear of boundaries as you can between 

work and home. For example, set limits on nonemergency phone calls from home. Schedule 

regular times when you will call and check in 

during breaks or lunch.

If you think you will need to leave work 

temporarily to provide full-time care, learn about 

the Family Medical Leave Act (FMLA). FMLA 

provides job protection for employees who must 

leave their jobs for family medical concerns, 

such as providing care for a critically ill family 

member.

Additional resources

More information about the Family and Medical 

Leave Act (FMLA) is available online at www.dol.

gov/dol/topic/benefits-leave/fmla.htm.

Talk with your supervisor 

about family caregiving issues. 

Openly and honestly describe 

the situation before it 

becomes a problem.

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Family Caregiver Handbook

Both FMLA and Oregon’s Family Leave Act 

(OLFA) generally allow up to 12 weeks of unpaid 

leave under certain conditions when a covered 

family member has a serious health condition. 

For more information talk to your supervisor 

or go to www.oregon.gov/boli/TA/docs/OFLA_

Poster_2014.pdf.

Long-term care insurance may be available 

through your employer that could cover some 

care for your parents; ask your personnel 

representative. For more information about 

long-term care insurance see page 62.

Help from community 

services and programs 

for the care receiver

There are many community programs and 

services available that can help the care 

receiver with things like:

• Physical care such as getting dressed, 

preparing meals, help with medications, 

personal hygiene as well as getting in or 

out of the bed, tub, toilet or house;

• Taking care of the house or apartment 

such as light housekeeping, shopping 

or laundry;

• Transportation.

Finding local services

Getting started finding local services can 

feel overwhelming. The solution is to find 

knowledgeable people who know what 

is available where you live. The following 

organizations can help.

You can also contact your local Family 

Caregiver Support Program staff, who are 

valuable resources in gaining access to 

services for both you and the care receiver.

ADRC Information and 

Assistance (I & A)

Information and Assistance (I & A) offered by 

the ADRC of Oregon is a free information and 

referral service for adults age 60 and older, 

people with disabilities, and for family and 

friends helping provide care);

Information and Assistance is part of your local 

ADRC and is available in every county in Oregon.

Local ADRCs throughout Oregon can help 

you with:

• Planning, finding and getting more care, 

services or programs (e.g., transportation, 

meals, housekeeping, personal care)’

• Exploring options for paying for long-term 

care and reviewing eligibility for benefits;

• Figuring out health care insurance and 

prescription drug options;

• Providing listings of local adult foster 

homes, assisted living, residential care 

facilities and memory care communities;

• Sorting through legal issues (e.g. setting 

up advance directives) or making referrals 

for legal advice.

Visit www.ADRCofOregon.org or call 

Oregon Family Caregiver Handbook 67
56

1-855-673-2372 (1-855-ORE-ADRC).

Benefits Checkup

Benefits Checkup (BCU) is a comprehensive 

online service to screen for federal, state and 

some local public and private benefits for adults 

ages 55 and over. BCU can help you connect to 

programs that help pay for prescription drugs, 

health care, utilities and other needs. BCU also 

provides a detailed description of the programs, 

contacts for additional information and materials 

to help you successfully apply for them. Visit 

www.benefitscheckup.org.

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57

Family Caregiver Handbook

Residential care is a term used to describe a 

home or facility where an adult can live and 

get help with care in a community setting. 

Residential care may be the right decision if:

• The care receiver has care needs that 

can no longer be safely met at home;

• The caregiver is emotionally and physically 

exhausted and family and community 

resources are not enough.

Be prepared

Although the person you care for may not need 

residential care now, it’s wise to prepare for 

that possibility. Plan ahead and know what your 

options are before a crisis. Many residential care 

facilities have waiting lists. Visiting a facility 

doesn’t mean you have to choose or decide 

now. Putting your name on a waiting list isn’t 

an obligation.

Adult foster homes

Adult foster homes are licensed single-family 

residences that offer 24-hour care in a homelike setting for up to five people. An adult foster 

home’s goal is to provide care and services to 

residents while supporting their independence, 

choice and right to make decisions. 

Adult foster homes provide meals (including 

special medical-related diets), provide or arrange 

transportation to appointments and other 

activities, do laundry, administer medications, 

and assist with eating, dressing, toileting, 

personal care, walking and/or getting out of 

a bed or a chair, and dealing with behavioral 

symptoms, as needed. They also provide 

friendship and the opportunity for residents to 

reside in a safe and caring environment. 

A wide variety of residents are served in adult 

foster homes, from those needing only room, 

board and minimal personal assistance to those 

residents needing full personal care, or skilled 

nursing care with the help of registered nurses. 

Some adult foster homes allow pets. In some 

homes multiple languages may be spoken. 

The consumer guide “A Guide to Oregon Adult 

Foster Homes” is helpful if you want to explore 

Options when care at home 

is no longer possible

Although the person you care 

for may not need residential 

care now, it’s wise to prepare 

for that possibility.

Oregon Family Caregiver Handbook 69
58

adult foster homes. You can read and download 

the guide at www.ADRCofOregon.org. You 

can also get a list of adult foster homes in 

your area by visiting ADRC of Oregon at 

www.ADRCofOregon.org, or contact ADRC 

staff at 1-855-673-2372.

Residential care and assisted living

Residential care and assisted living facilities 

are licensed facilities that provide housing 

and supportive services to six or more people. 

Residential care and assisted living facilities 

are two separate licensing categories. However 

they are similar in the services they provide such 

as meals, laundry, housekeeping, medication 

administration, as well as personal care 

assistance.

Assisted living facilities are required to have 

private apartments, ranging from a studio to 

one or two bedrooms. Each apartment unit 

has a kitchenette and private bathroom with 

a wheelchair-accessible shower. Residential 

care facilities offer shared and private rooms. 

These facilities are not required to provide 

private bathrooms or kitchenettes. 

Assisted living and residential facilities are 

required to have a registered nurse on staff or 

contract, but the nurse is not required to be 

onsite 24 hours a day. Duties and qualifications 

of direct caregivers vary among facilities. 

Caregivers are not required to be certified 

nursing assistants, although training prior to 

providing services to residents is mandatory. 

Assisted living or residential care facilities are 

best suited for individuals who want to remain as 

independent as possible and who are able 

to direct their own care. 

Read and download the “Oregon Consumer 

Guide to Assisted Living and Residential Care 

Facilities” by visiting ADRC of Oregon at www.

ADRCofOregon.org. 

Residential care and assisted living facilities 

are required to provide a copy of their Uniform 

Disclosure Statement to all inquiring consumers. 

This statement outlines what services the facility 

provides and if there would be any additional 

charges. It also provides information on staffing 

and the facility’s requirements regarding 

medication packaging. 

For a listing of residential care or assisted living 

facilities in your area, visit ADRC of Oregon at 

www.ADRCofOregon.org or contact ADRC staff 

at 1-855-673-2372. 

Memory care communities

Memory care communities provide a secured 

environment for persons with Alzheimer’s or 

other types of dementia. They provide persondirected care that focuses on their daily routines 

and their preferences for how care is provided 

and what activities they do. 

All memory care communities have an 

underlying license as a residential care, 

assisted living or nursing facility. In addition 

to meeting licensing requirements, they must 

also meet the requirements for memory care 

community endorsement. Endorsement 

requirements include dementia-specific training 

for all staff, services to support people with 

behavioral symptoms, structured and nonstructured activities, family support and 

Oregon Family Caregiver Handbook 70
59

Family Caregiver Handbook

enhanced environmental requirements.

A memory care community endorsement does 

not constitute the Oregon Department of Human 

Services’ recommendation of that community.

Memory care communities are required to 

provide an inquiring consumer a copy of their 

Uniform Disclosure Statement. This statement 

outlines what services the facility provides and 

if there would be any additional charges. It also 

provides information on staffing, staff training 

and the community’s requirements regarding 

medication packaging. 

For a listing of memory care communities in 

your area, go to www.ADRCofOregon.org. You 

can also call ADRC staff at 1-885-673-2372 to 

obtain a listing.

Nursing homes 

Nursing homes provide 24-hour supervised 

nursing care, personal care, therapy, nutrition 

management, organized activities, social 

services, room, board and laundry. 

Entering a nursing home no longer means 

every person stays forever. People also go to a 

nursing home for rehabilitation or for short-term, 

intensive nursing care. Often people get better 

or decide they want to return home and get 

services there.

If your loved one needs short-term nursing 

home care, plan ahead for what types of services 

and support are needed after leaving the facility 

in order to return home or to another residential 

care setting.

Entering a nursing home no 

longer means every person 

stays forever. People also 

go to a nursing home for 

rehabilitation or for short-term, 

intensive nursing care.

Oregon Family Caregiver Handbook 71
60

Depending on your situation, talk to a hospital 

discharge planner, nursing home discharge 

planner or staff at your local ADRC; call the 

ADRC at 1-855-673-2372.

Retirement communities/ 

independent living facilities

Retirement communities and independent living 

facilities exclusively house adults (normally 

55 or older). Residents are generally healthy 

and receive any medical or personal care from 

visiting nurses or a home health aide. Staff at 

the retirement community do not take on the 

general responsibility for the safety and wellbeing of the adult.

There are all kinds of planned retirement 

communities from large-scale, single-family 

home developments to smaller-scale, senior 

houses or apartments.

Continuing care retirement 

communities (CCRC)

Continuing care retirement communities (CCRC) 

typically have a range of housing options that 

include independent living along with at least 

one licensed facility (assisted living facility, 

residential care facility or a nursing facility). In 

addition, a CCRC may also have an in-home 

agency. A CCRC is designed to meet residents’ 

needs in a familiar setting as they grow older. 

A CCRC resident usually has to sign a longterm contract that provides housing, personal 

care, housekeeping, yard care and nursing care. 

This contract typically involves either an entry 

fee or buy-in fee in addition to monthly service 

charges. Those considering moving into a CCRC 

are advised to get legal and financial advice 

before signing a contract. CCRCs are required 

to register with the state and disclose specific 

information about the services they provide and 

their finances. 

Independent living residences that are part of a 

CCRC are not licensed by DHS. However, nursing 

facilities, residential care or assisted living 

facilities located on the campus are required 

to be licensed due to their requirements to 

provide care. 

For a listing of CCRCs in your area, go to www.

ADRCofOregon.org. You can also contact ADRC 

staff at 1-855-673-2372 to obtain a listing.

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Family Caregiver Handbook

Paying for services in a care facility

Long-term care is often paid for privately 

out-of-pocket (funded through savings plan 

annuities, certain life insurance policies or 

reverse mortgages) or with health or longterm care insurance. Funding is usually a 

combination of any of these.

Medicare

Medicare is a government health insurance 

program for people 65 and over, some people 

under the age of 65 with disabilities, and people 

of any age living with permanent kidney failure. 

It pays for many health care expenses but does 

not cover them all.

Medicare has limits on the type and length 

of care it will fund. Medicare will pay for 

certain services when conditions are met 

for a limited time in a nursing home or for 

services provided by a home health agency in 

the person’s home. Medicare and Medicare 

supplemental policies will not pay for long-term 

stays in a nursing home, adult foster home, 

residential care or assisted living facility or for 

in-home care services.

Contact a Social Security Administration office 

for a Medicare application and more information 

about the program. Look in the Federal 

Government section of the phone book under 

“Social Security Administration” or visit www.

ssa.gov/pgm/medicare.htm.

Additional resource

The Senior Health Insurance Benefits Assistance 

(SHIBA) HelpLine provides free help to people of 

all ages with questions about health insurance. 

Call 1-800-722-4134 or go to www.oregon.gov/

DCBS/SHIBA/Pages/index.aspx.

You can find more information about Medicare 

at www.MedicareStartsat65.org.

Medicaid

Medicaid is a government health insurance 

program available to people with very limited 

income and resources. Medicaid can pay for 

services in your own home, adult day service 

program, adult foster home, residential care, 

or assisted living facility that accepts Medicaid 

clients. In addition, you must meet financial 

requirements and have significant limitations in 

Long-term care is often paid 

for privately out-of-pocket 

or with health or long-term 

care insurance.

Oregon Family Caregiver Handbook 73
62

your ability to do daily activities such as bathing, 

walking or going to the bathroom.

For more information about applying for 

Medicaid, contact the ADRC of Oregon 

at www.ADRCoforegon.org. or call 

1-855-673-2372.

Other insurance programs

Long-term care insurance

Long-term care insurance is the primary 

insurance that pays for long-term care. It is a 

private self-paid health insurance plan. Longterm care insurance covers the costs of long-term 

care not covered by other health insurance. 

Premiums are usually based on age, health, 

length of deductible period, amount paid and 

duration of benefits.

There are many plans and they all vary in 

eligibility, costs and services covered. It is 

therefore important to understand what you 

are buying and whether it will meet your needs.

A Senior Health Insurance Benefits volunteer may 

be able to answer your questions about longterm care insurance.

Veteran’s benefits

If you are a wartime veteran or surviving spouse 

(married at the time of the veteran’s death), 

you may be eligible for a pension, health 

insurance or long-term care through the Oregon 

Department of Veterans’ Affairs (VA). Also, the 

dependent parent of a veteran killed in service 

or who dies of a service-connected disability 

may be eligible for VA Dependency and 

Indemnity Compensation.

You can contact Oregon Department of Veterans’ 

Affairs at 1-800-828-8801, 503-373-2000 or 

www.oregon.gov/ODVA/Pages/index.aspx.

Additional resources

The Oregon Insurance Division website has 

helpful information about long-term care 

insurance. Visit www.oregon.gov/DCBS/

INSURANCE/Pages/index.aspx (click on 

“Get Help,” and then Long-term care”). 

The Senior Health Insurance Benefits 

Assistance (SHIBA) HelpLine provides free 

help to people of all ages with questions 

about insurance. Call 1-888-877-4894.

Oregon Family Caregiver Handbook 74
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Family Caregiver Handbook

Adults who plan in advance for their future have 

the best chance of ensuring their continued 

independence and well-being. Planning ahead 

for your future gives you more:

• Time to think through, clarify and 

communicate your goals and needs;

• Control of your choices and options;

• Chance of protecting your financial security;

• Peace of mind.

For information on legal and financial planning 

for a loved one, go to www.oregonlawhelp.org 

and click on “Seniors 60+.”

Financial planning

Putting together a financial plan today will help 

you safeguard your savings and peace of mind.

More planning information

• The U.S Department of Health and Human 

Services has a Long-Term Care Planning 

website that guides you through some 

questions about a person’s situation. It 

then offers personalized information to 

help learn more about available long-term 

care services, how much one can expect 

to pay for long-term care, and what 

financing options are available to support 

your long-term care costs. Visit www.

LongTermCare.gov. 

• AARP has an extensive section on investing 

and retirement planning. Visit www.aarp.

org/work/retirement-planning.

• The Women’s Institute for a Secure 

Retirement (WISER) has several simple, 

easy-to-read publications on this topic. 

Visit www.wiserwomen.org (click on 

“Publications”).

Legal planning

It is important for all adults to think through 

and communicate to loved ones and health 

care providers what they want to happen if 

medical decisions have to be made and they 

can no longer communicate their wishes.

It is often uncomfortable to talk about things 

like money, wills, sickness and death. By 

overcoming your uneasiness now, you can 

avoid sometimes insurmountable problems if 

a crisis arises and the person is no longer able 

to communicate his or her wishes.

You can put your mind at ease knowing 

you have a plan for the what ifs and a good 

understanding of what the care receiver wants 

if no longer able to make or communicate 

decisions.

Planning for tomorrow

Additional resources

“Consumer’s Toolkit for Health Care 

Advance Planning” from the American 

Bar Association is a tool kit with a 

variety of self-help worksheets, 

suggestions and resources.

The tool kit can help you or your loved 

one discover, clarify and communicate 

what is important in the face of serious 

illness. Visit www.abanet.org/aging/

toolkit/home.html.

Oregon Family Caregiver Handbook 75
64

Have an open discussion with everyone involved. 

Acknowledge that while these are difficult 

topics to discuss, it is important to know what 

the care receiver expects and wants regarding 

health care, living arrangements and end-of-life 

decisions.

Good advance planning for health care decisions 

is a continuing conversation about values, 

priorities and the meaning and quality of 

one’s life.

Wills

A will is a legal document that outlines what 

happens to your property after you die. A will 

defines who is to get the property and in what 

amounts. A will can also, if necessary:

• Name a guardian for any minor children 

(or pets);

• Identify someone else to handle the 

property left after death on behalf of 

children or others;

• Identify an “executor” to handle property 

and affairs from the time of death until 

an estate is settled.

Power of Attorney

This legal document, signed by a competent 

person, gives another person the authority 

to handle some or all of the person’s affairs. 

Depending on how it is written, it can 

continue to operate even if the person 

becomes incapacitated.

Advance Directive

An Advance Directive for Health Care in 

Oregon allows an individual to:

1) Name another person, called a health care 

representative, to make health care-related 

decisions once the individual is no longer 

able to make his or her own decisions; and

2) Put into writing the type of medical care or 

decisions, an individual wants made if he 

or she is no longer able to communicate 

this in the future.

All adults should have advance directives. An 

accident or serious illness can happen suddenly.

Few people like to talk about or think about 

these things. Not having this discussion or 

Learn more about wills and 

other legal decision-making 

tools at the Oregon State 

Bar’s website, www.osbar.org/

public/legalinfo/wills.html.

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65

Family Caregiver Handbook

not having advance directives can place an 

even heavier burden on those you love if the 

unthinkable happens.

The Advance Directive form was placed into 

Oregon law in 1993. It replaced health care 

planning forms previously used in Oregon — the 

Directive to Physicians, also known as the Living 

Will, and the Power of Attorney for Health Care. 

The Advance Directive form can be found at 

www.oregon.gov/DCBS/insurance/shiba/topics/

Pages/advancedirectives.aspx.

It is possible to complete an Advance Directive 

without the help of an attorney. Unless the 

person clearly understands all the options and 

facts, it may be best to consult with an attorney 

before drawing up legal documents, including an 

Advance Directive.

Physician Orders for Life-Sustaining 

Treatment (POLST) or Do Not 

Resuscitate (DNR)

A POLST is a doctor’s orders as discussed 

and agreed upon between the patient and the 

doctor. The POLST form is used when end of 

life is near for someone with a serious illness. 

The signed doctor’s orders on a POLST form 

more clearly direct the type of treatment an 

individual does or does not want to receive 

in an emergency situation.

A doctor has an end-of-life discussion with the 

patient and translates the patient’s wishes into 

actual physician’s orders on the POLST form. 

Having a completed POLST form helps make 

sure other medical professionals follow the 

patient’s wishes without delay. A POLST may 

contain a Do Not Resuscitate (DNR) order, but 

a DNR is only one of a variety of end-of-life 

care planning options that may be contained in 

a POLST. Visit www.oregonpolst.org for more 

information.

Guardians

If a person is or becomes incapacitated, the 

court may be petitioned to appoint a legal 

guardian and/or conservator for the person. 

After a detailed process and review, the judge 

signs papers appointing a guardian/conservator. 

Guardians are charged to act on the person’s 

behalf and make decisions that reflect the values 

and needs of the person. 

A conservator is appointed to specifically 

oversee a person’s property, income and 

finances. A guardian oversees the non-financial 

duties as assigned by the court, with the duties 

limited 

to those approved by the court.

A guardianship or conservatorship can be 

expensive and time-consuming and is rarely 

necessary if other directives like a durable 

power of attorney for health care are in place.

An attorney should be consulted if you are 

considering a guardianship or conservatorship 

for a loved one.

Consult an attorney

Many people have never hired an attorney or 

thought they needed one. A long-term illness 

or disability can dramatically change lives. It is 

helpful to have expert advice to avoid possible 

devastating effects on you or your family.

Oregon Family Caregiver Handbook 77
66

A lawyer that practices general law may be able 

to do everything that’s needed. If the financial 

situation is more complicated, a lawyer with 

experience in estate planning and/or elder law 

may be needed to sort through income, property, 

bank accounts and other assets. Lawyers who 

specialize in estate planning or elder law are 

also often familiar with disability laws and with 

Medicare and Medicaid eligibility and benefits.

Finding a lawyer

It is up to individuals to determine what kind of 

lawyer, and which lawyer, will be best for them. 

Trusted friends and acquaintances may be asked 

for recommendations. Other professionals like 

bankers, accountants and insurance agents may 

also have suggestions. Or contact:

• The Oregon State Bar’s Lawyer Referral 

Service at 503-684-3763 or www.osbar.

org/public/ris/ris.html#referral.

Additional resources

• The National Academy of Elder Law 

Attorneys website has a listing of 

lawyers who specialize in elder law 

at at www.naela.org/; then click on 

“Find an Attorney.”

Have and keep an inventory

A list of a person’s assets and where they can 

be found is an important part of responsible 

planning for an unexpected crisis or death. 

Make a list and update it regularly. Make sure 

a trusted person knows where the list is kept. 

Encourage your parent(s) or other loved ones 

to do the same.

Additional resources

AARP has designed a form to help document 

where to locate important documents before a 

crisis occurs. Check it out on the AARP website 

at www.aarp.org (click “caregiving-parent”).

Oregon Family Caregiver Handbook 78
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Family Caregiver Handbook

The Aging and Disability Resource Connection, 

or ADRC, is a free service that offers the public 

a single source for information and assistance 

on issues affecting older adults and people 

with disabilities regardless of their income. It is 

easy to access the ADRC. Simply call, visit the 

website, or walk into a local office.

Visit the ADRC of Oregon website to learn more 

about topics covered in this booklet. 

In addition, learn more about:

• The types of care services, programs and 

resources available and how to find them;

• Residential housing options for a person 

who can no longer live at home (listings by 

city or county are available);

• State, federal andand local resources that 

can help pay for care and prescription 

drugs;

• Long-term care planning including:

» The legal and financial steps 

necessary to help plan wisely for 

the future;

» Tips on healthy aging, nutrition, 

physical activity and keeping your 

mind active.

Aging and Disability Resource 

Connection (ADRC)

For more information, go to

www.ADRCofOregon.org

or call

1-855-ORE-ADRC or 

1-855-673-2372

Oregon Family Caregiver Handbook 79
68

Keep a record

Keep a record of all medications the care receiver is taking. Always bring it with you to doctor 

appointments.

Medication Dosage Prescribing

physician

Date

prescribed

Color

size and 

shape

What it’s for Special

instructions

1.

2. 

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

15.

Medication Record

Oregon Family Caregiver Handbook 80
69

Family Caregiver Handbook

Keep a record

Keep a record of all medications the care receiver is taking. Always bring it with you to doctor 

appointments.

Medication Dosage Prescribing

physician

Date

prescribed

Color

size and 

shape

What it’s for Special

instructions

1.

2. 

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

15.

Oregon Family Caregiver Handbook 81
70

Setting up a schedule

An important part of managing medications is helping the care receiver remember what to 

take and when to take it. Make a chart. Write down the day and time that each medicine 

should be given.

Monday Tuesday Wednesday Thursday Friday Saturday Sunday

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

Medication Schedule

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71

Family Caregiver Handbook

Setting up a schedule

An important part of managing medications is helping the care receiver remember what to 

take and when to take it. Make a chart. Write down the day and time that each medicine 

should be given.

Monday Tuesday Wednesday Thursday Friday Saturday Sunday

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

8 a.m.

Noon

6 p.m.

Before bed

During the 

night

Oregon Family Caregiver Handbook 83
This document can be provided upon request in an alternate format for individuals with disabilities or in a language 

other than English for people with limited English skills. To request this publication in another format or language, 

contact the Publications and Design Section at 503-378-3486, 711 for TTY, or email dhs-oha.publicationrequest@

state.or.us.

DHS 9398 (9/2014)

Klamath

Lake

Harney Malheur

Grant

Baker

Josephine Jackson

Curry

Coos

Lane Deschutes

Crook

Wheeler

Jefferson

Linn

Marion

Wallowa

Union

Umatilla

Morrow

Gilliam Sherman

Wasco

Hood

River

Clackamas

Multnomah

Columbia Clatsop

Benton

Polk

Yamhill

Tillamook Washington

Lincoln

Douglas

1-855-673-2372 or

1-855-ORE-ADRC 

www.ADRCofOregon.org

Oregon Family Caregiver Handbook 84
FAMILY CAREGIVER INTAKE FORM DATE:

Caregiver Name: SSN: Male Female

DOB:

Address: Home Mailing

City/St./ZIP City/St./ZIP

Phone: Home Work E-Mail

Race White Native Hawaiian/Pacific Islander Ethnicity

Check all Asian American Indian/Alaskan Native Client is Hispanic or Latino?

that apply Black Unknown Yes No Unknown

 Hispanic

Relationship to Care Recipient <<Relationship Not Reported>>

Caregiver of any age: Husband Wife Son-in-Law

 Daughter-inLaw Other Fam. Member Non-Relative

When Caregiver is Grandparent Other Elderly Relative

Grandparent Status 55+: How many children under age 18 does caregiver care for? _______

Emergency Contact

Name: Home Phone:

Address:

City/St/ZIP Cell Phone:

E-Mail:

Relationship: Child Friend Grandchild Neighbor

 Parent Sibling Spouse Other Fam. Member

 Not Related

Care Receiver Information:

Name: DOB: SSN:

Address: Gender: Male Female

City/St/ZIP: Phone:

Physician: Phone: Ext.

Health Status/Diagnosis:

Daughter

Work Phone:

Son

Oregon Family Caregiver Intake Form 85
Caregiver Support Services Care Recipient Information

F=Full Assist, S=Substantial Assist M=Minimal Assist I=Independent

Access to CG Services (#16)

Caregiver Respite (#30-5) IADL No IADL Needs ADL No ADL Needs

CG Supplemental Svcs. (#30-7) F S M I F S M I

Caregiver Training (#70-9) Food Preparation Bathing

Support Groups for CG's (#30-6) Heavy Housework Behavior

Info for CG (#15) Housekeeping Dressing

Managing Finances Eating

Med. Management Eliminating

Shopping Mobility/Walking

Taking Medication Pers. Hygiene/Groom

Using Telephones Transferring

Using Transportation

Benefits/Income

Below $867 $1734-2600 Below $1167 $2344-3500

$868-1083 over $2601 $1168-1458 over $3501

$1084-1733 $1459-2333

Living Situation: Alone With Spouse With Others (Specify)

1. Who is the primary caregiver? Relation:

2. Is there a back-up/secondary caregiver? Who?

3. Are there cultural or ethnic preferences?

4. What does the CG need help with the most?

5. Quality of relationships?

6. Length of caregiving? ___Years ___Months

7. Is the CG employed? 

8. Is quality and amount of care satisfactory? 

9. How is the health of the CG?

10.Other support received by CG or care receiver?

11. Impact of caregiving (indicate + or -) ___ Social ___Financial ___Work strain ___Health

___Family Relationship

Action Plan

Assist to access resources Respite Consultation Ed/Training

Case management Transportation Support Groups Other (see below)

Counseling Referred to:_________________________________________________________

Follow-up needed:

1 in Household 2 in Household

Oregon Family Caregiver Intake Form 86
Relative as Parents Program (RAPP) &

Family Caregiver Support Program

Quarterly Meeting Summary

January 6, 2015

Attendees:

Tami Martin Jennifer Jungenberg Joan Callendar

Suzy Deeds Toni Ferguson Angela Livas

Julie Mendez Loriann McNeill Julie Ann Davis

Deb Scobie Janice Wolcott Amanda Reeves

Deborah Letourneau Carol Terry Kathy Gaunung

Julie Luedtke Jeanne Wright Megan Pak

Tami Martin, who is new to the RAPP group presented on Family to Family which is an 

organization that focuses on helping families with special needs children with the following:

• Navigating health systems and resources;

• Serving Oregon’s rural, suburban and urban communities

• Directing families to programs, services and supports specific to each child’s unique 

needs. 

• Through a comprehensive website (www.oregonfamilytofamily.org) there is information 

and links to key special-needs services;

• Provide newsletters and tip sheets that has practical information written by families;

• Regional family gatherings and trainings in communities around the state. 

Tami mentioned they that on the website there is a listing of Family Liaisons in each area of the 

state. Family to Family also has a partnership with 211, so if families who are needing 

information about their special needs child, they are put in touch with Oregon Family to Family. 

Tami provided brochures and tip sheets at the meeting. All of these can be accessed on the 

Family to Family website. 

Other resources mentioned: 

 Creating Opportunities (www.creatingops.org) is an organization within Marion, Polk 

and Yamhill Counties that is a support network of families who have children with 

special needs. They too provide opportunities for families to connect and be educated 

about resources and services available to them.

 Oregon Family Support Network – (http://ofsn.org) which works to promote mental, 

behavioral and emotional wellness for families and youth.

 FACT Oregon – http://factoregon.org is an organization that provides trainings (both in 

person and online) for parents of children who have disabilities. 

Shoulder to Shoulder Conference: 

Toni gave a report on the Shoulder to Shoulder conference which was held October 27 & 28th in 

Portland. This conference brings together all types of professionals (attorneys, physicians, DHS, 

educational staff) and anyone who serves children. Deb Shopshire, MD presented on how 

Oregon Relative as Parents Program (RAPP) and Family Caregiver Support Program Quarterly Meeting Summary 87
safety of children is a shared responsibility of the community. Jeff Gianola with KOIN 6 news 

was honored for the work he has done with Wednesday’s Child. The next Shoulder to Shoulder 

Conference will be held Tuesday, October 27 with a pre-event gathering on Monday, October 

27. It is held at the Red Lion Jantzen Beach in Portland. More info to come. 

RAPP Resource Guide – This is an ongoing project. Jan is in the process of converting the PDF 

wording to Word, but will check with Ladonna or Kelsey (who worked on this previously) as to 

whether or not they have it in a word format so changes can be made. 

Resources – Suzy Deeds provided information on the following:

 Suzy also mentioned the Oregon Family Support Network;

 For children who have victims of crime, they may be able to get financial help for related 

services/needs from a victim’s compensation program, from the county where ever the 

crime took place, even if it is out of state. 

 STEPS – is a program for families who are in transition (e.g. homeless, foster care). The 

goal of this program is to ensure that kids stay in school. 

 Free lunches are available to children are on OHP.

 Shared a fact sheet on TANF which was provided by Generations United. (see attached 

document) the Fact Sheet mentions the AARP Foundation’s link 

to www.aarp.org/quicklink that can help folks see what benefits they may be able to 

access. 

 Developing Our Children’s Skills, which is a six week parenting class for caregivers of 

children with special needs. It will be provided by the Swindells Resource Center and will 

be held at Providence Newberg Medical Center Jan. 12 through Feb. 16. For more 

information go 

to http://health.usf.edu/medicine/pediatrics/child_dev_neuro/HOTDOCS.htm 

 Brochure on Suicide Prevention for Teens. 

Suzy mentioned she will be starting a grandparent support group and is looking for suggestions 

on recruiting participants; following is a list of suggestions that were provided:

 Build in child care and food (can be a potluck)

 Partner with Parent and Teacher Organizations (PTO’s)

 Ask schools if they could help with sending out an email

 Approach a school to see if she could do a support group onsite

 One coordinator mentioned that one of her grandparents who lives in low cost housing 

wanted to start a group in her complex, so this may be a good option as well. Also 

suggested putting flyers up in some of these complexes.

 One obstacle is transportation, so holding it in a library may be a good venue, since they 

are usually on a bus line.

Other Information that was shared:

 Jen Jungenberg mentioned that Oregon Zoo is providing free passes for a group of 

relatives as parents that she is organizing. All she needed to provide was a Tax ID #. 

Oregon Relative as Parents Program (RAPP) and Family Caregiver Support Program Quarterly Meeting Summary 88
 FreeGeek.org is a non-profit organization that takes used computers, rehabs them, then 

sell them at a discount for volunteers who log at least 3 hours of volunteer time. For 

families who log at least 24 hours of volunteer time, the computers are free. 

 Regal theaters will provide free passes to caregivers and their care partners. 

Family Caregiver Program:

Julie Ann Davis with the Community Action Team (CAT) in Columbia County provided an 

overview of the RCI REACH (Rosalyn Carter Institute Resources for Enhancing Caregivers Health) 

program that they will soon be working with. This is a free training (materials included) for 

coaches and a free service to caregivers for the first year. The training is being funded through 

the Administration on Community Living to help initiate more RCI REACH programs. After the 

first year the program will cost $1500. Suggestions were give on how to sustain the program, 

such as asking for private donations or contracting with the local CCO’s. 

Training for the coaches of this program is scheduled to take place on February 3 & 4, 2015. A 

location has not yet been decided. Services provided to caregivers consist of a total of 12 visits. 

Six of the visits will be face to face and the others will be telephone visits. The first visit consists 

of conducting an assessment of the caregiver in the home with the goal of understanding what

they are experiencing and identify any risk factors that may be occurring. It is a client driven 

program, but it is meant to help get the caregiver the needed services or resources they can 

benefit from. 

Savvy Caregiver:

Jeanne Wright with Douglas County Senior Services and Veterans Services Division presented 

on the Savvy Caregiver training that will be coming to Roseburg on Friday, February 20, 2015. 

Jeanne contacted the founder/designer of Savvy Caregiver, Dr. Kenneth Hepburn, who is willing 

to provide the training himself for free, however he will need help with travel expenses such as 

air travel, lodging, meals. 

They are planning to have the training at Seven Feathers Resort and Casino located in 

Canyonville, OR. Folks from other areas are invited to attend. Cost of attending will be 

“around” $25 per person, plus their travel expenses. Training materials are included. Lunch will 

be provided. Jeanne will send a flyer with the information, once things have been confirmed 

with Seven Feathers. If you have any questions 

Savvy Caregiver is designed to help caregivers master their role in dealing with the effects of 

dementia, by providing them with skills, knowledge as well as confidence to be effective in their 

caregiving role. An email with the training manual will be sent out for review. If you are 

interested in attending or have questions regarding this training, you can contact Jeanne at 

541-440-3608 or email her at jlwright@co.douglas.or.us. 

ACL Dementia Grant:

Early Memory Loss programs, Staying Connected and Staying in Motion are being provided in 

the Metro area mostly in independent living communities, however the Hollywood Sr. Center 

has had a couple of sessions. The Alzheimer’s Association will be doing more train the trainer 

Oregon Relative as Parents Program (RAPP) and Family Caregiver Support Program Quarterly Meeting Summary 89
sessions so it can be provided in more areas of the state. So stay tuned, more information to 

come. 

Dementia web training for ADRC staff - there is one training module on the SUA/Training 

webpage (http://www.oregon.gov/dhs/spwpd/Pages/sua/AvailableOnlineTraining.aspx), more 

are coming, it has been slow, but hopefully more will be placed on there soon. 

Announcements:

 Oregon Care Partners (OCP) – a reminder about the free training offered through OCP. 

Trainings on dementia are provided online, plus there are classes for geriatric 

medication practices for non-licensed caregivers also available. There was a report that 

this training was excellent. There was a question if the class room trainings would be 

available online, after checking with OCP they are not videotaping classes at this time. 

 Native Caring Conference will be held April 15 & 16, 2015 at Three Rivers Casino and 

Resort in Florence, OR. Once the registration forms are released, they will be 

distributed.

 11th Annual Gift of Time will be May 8 – 10, 2015 at the Macleay Christian Retreat in 

Salem, OR. Janice reported that they have received a $2500.00 grant from Wells Fargo 

Have received a total of $750 from two Walmart stores and are waiting to hear from the 

Henry Hillman Foundation for a $1500.00 grant. Janice is hoping that if they are 

successful with getting these grants they can apply for a larger grant from the Oregon 

Community Foundation so these retreats can be held in regions around the state. 

 Family Caregiver Handbooks – There are plenty, please feel free to contact Jan for more 

handbooks.

 Families & Aging – Dilemmas & Decisions Game, we have about 20 of these in the office, 

if you would like to have one sent to you, please email Jan. This game was developed by 

Dr. Vickie Schmall and provides situations for discussion for caregivers who support both 

children and seniors. 

 Help is Here – When someone you love has dementia, just a reminder about this book. 

 

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South Carolina Alzheimer’s Disease and Related Disorders Respite Voucher Application 93
South Carolina Confirmation of Grant Award 94
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