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How toCare for
Agıng
Parents

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3 RD

EDitionCompletely Revisedand Expandedc

A One-Stop Resource for All Your Medical,
Financial, Housing, and Emotional Issues

V i r g i n i a

M o r r i s

Foreword by Jennie Chin Hansen,
CEO, the American Geriatrics Society and Health in Aging Foundation

W o r k m a n

P u b l i s h i n g

•

n e W

Y o r kLY

Copyright © 1996, 2004, 2014 by Virginia Morris
All rights reserved. No portion of this book may be reproduced
mechanically, electronically, or by any other means, including
photocopying—without written permission of the publisher. Publishedsimultaneously in Canada by Thomas Allen & Son Limited.
Library of Congress Cataloging-in-Publication Data is available.
ISBN 978-0-7611-6676-4
Cover photograph © by Mara Lavitt
Workman books are available at special discounts when purchased inbulk for premiums and sales promotions as well as for fund-raising or
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specification. For details, contact the Special Sales Director at the address
below, or send an email to specialmarkets@workman.com.
Workman Publishing Company, Inc.
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WORKMAN is a registered trademark of Workman Publishing Co., Inc.
Printed in the United States of America
First printing January 2014
10 9 8 7 6 5 4 3 2 1

Chapter 1

First Things First
Ten Survival Tips • Critical Conversations • Gathering Vital
Documents • Exploring the Options • Getting Organized •When You Can’t Be ThereM

ost of us don’t plan to take care of a parent. We don’t

set aside time or money for the task, or factor it in when thinking about retirement. For the most part, a parent’s old age,and the needs and dilemmas that typically accompany it, seem to comeout of nowhere.
The transition can come with a jolt—after a fall, a stroke, or adiagnosis—but more often than not the demands of parentcare slide
slowly into our lives. Dad is a little hunched over, his step wobbly.
Mom left the stove on and burned a pot. Again. The car has a new
dent. Pill bottles line the sink.
Even then, some part of us clings to the hope that our parents willbe all right and our services will not be needed. But with time comehousing issues, money problems, medical complications, and questions, so many questions. How do we stop her from driving? Is he eating
properly? Can she be left alone? Who will take him to his doctor’s appointment? Is that a new symptom? Will insurance cover this?

2

how to care for aging parents

We don’t plan for it, but at some point we are in it, solving eachcrisis only to find another in its wake. We muddle through, day byday, juggling their lives, and ours.
No matter where you are in the process—whether you’re just starting out, deeply enmeshed, or nearing the end—the most important
thing you can do for your parent, and yourself, is this: Be prepared forwhat might come. Complete the paperwork, explore the options, discuss
his wishes, create a plan. When using this book, after reading the sections that apply to your current situation, take a look at some issues thatyou are not yet dealing with—but may very well have to tackle one day.
Staying one day ahead, one question ahead, one chapter ahead
will give you and your parent time to consider the options carefully.
It will help ensure that your parent has choices and receives the bestcare possible. And just as important, planning ahead will mean far lesswork, less stress, and fewer headaches for you. It should even give youa little peace of mind.

Ten Survival Tips

W

hether you are already deep inthe trenches of parentcare orjust beginning your journey, here are a
few key tips for surviving the job. All ofthem are discussed in detail later in thebook, but they are useful to know fromthe get-go.

really must be done and what can bedeleted from your crowded to-do list?
Once you know that, determine what
has to be done by you and what can bedone by someone else. Prioritize, andonce you take an item off the list, let
go of it.

1. Assess. If you are racing frantically,

2. Organize. Locate important doc-stop. Sit with yourself for a moment,
be still, breathe deeply, unclench yourjaw, and clear your mind. Now, using
the most rational (and least emotional)
corner of your brain, ask yourself: Whatuments. Keep a record of key contacts(doctors, aides, lawyers, pharmacist, andso on), passwords, and your parent’s medical history in a document that you canaccess from your phone or other devices.

first things first3

Signs That Your Parent Needs HelpI

f you aren’t yet in the throes of caring
for your parent, how do you know whento get involved? As this chapter makes
clear, “sometime in the future” can become“today” quite suddenly, so don’t delay.
Have the conversations outlined here, andbe sure your parent’s legal and financial
affairs are in order.
If that’s all been done and your parent
is living on her own quite well, be aware ofsigns of trouble, particularly any changes
in her behavior, appearance, or habits. If
you suspect something is off, get involved
right away. It could be a sign of illness
or depression, or a signal that a problem
is imminent, such as a fall, car accident,
or nutritional deficiencies. Talk with yourparent and/or her doctor. Some clues thatyour parent needs help:• She’s unsteady. Is she wobbly on thestairs? Is her gait uneven? Does she get
dizzy getting up from a chair? Or has
she already fallen?

• His personal hygiene has fallen to thewayside. Is your parent skipping showers,
forgetting to shave, looking unkempt?

• Your parent has gained or lost weight,• The house and yard are no longer

maintained. Is your mother’s beloved
flower garden weedy, her usually clean
house dusty, or the dishes piled up in
the sink?

• Her personality has changed. Is yoursweet mother suddenly critical or
irritable? Your vocal father suddenly
quiet and compliant?

• There’s nothing to eat. Is there food in

the refrigerator? Is it spoiled and moldy?

• The mail is unopened or bills are unpaid.
• She misses appointments, gets lost,forgets important information, or loses
things.

• The car has dents, your parent has a

traffic violation, or you simply don’t feelsafe letting your children in the car withGrandpa driving.

• Your parent no longer does things she

used to enjoy. Has she stopped goingto her bridge club, doing the crossword
puzzle, or seeing her friends?

• The mail is suddenly full of newwhich could be a sign of illness ordepression, or an indication that she’s
having difficulty shopping and cooking.

subscriptions, sweepstakes entries, andrequests for donations. Or your parent
has a new best friend. This could be asign of fraud.

3. Plan. Don’t wait for a crisis. Get

4. Take care of yourself. Be sure to

critical documents (power of attorney,
health care proxy) signed. Talk with yourparent and family about your parent’s
future care, housing, and finances. Holda family meeting. Be a step ahead.

get away from it all from time to time—physically, mentally, and emotionally.
Make an effort to eat well, exercise, seefriends, and rest. Caring for yourself will
mean better care for your parent.

4

how to care for aging parents

5. Get help. You do not have to—andshould not try to—do it all. Get others
involved, tap into community services,
hire aides, and look into other housing
options. Get help long before you thinkyou’ll need it.
6. Communicate. Keep lines of com-munication open—with your parent,
doctors, aides, and especially your siblings. Talk with them about who will
do what and how you can support eachother. Consider ways to compensate asibling who is doing the bulk of the work.
7. Show respect. Despite the toll of

aging and illness, your parent is still an
adult and still your parent. As difficult
as it might be sometimes, treat her withrespect. Hear her views.

8. Dump the guilt. Out. Gone. Finito.

Finished. Enough of that. You are doinga good job.
9. Prepare for the end. Everyone

will be focused on keeping your parent
alive, which is natural, but this singleminded quest often makes people miserable. Question it. What does yourparent want most (time, mobility, comfort, lucidity)? Be sure her goals are at
the center of all decisions.
10. Be spontaneous. Do somethingwith your parent that’s fun and unexpected, something that has nothing to
do with doctors, medications, or aides.
In all your time of caregiving, this will
be one of the moments you’ll remember most fondly.

Critical Conversations

Although it can become too latequite suddenly, it is never too soon
to talk to your parent and siblings about
the future—her medical care, housing,finances, and personal needs. Obviously,
if your mother is extremely sick and frail,
these talks are urgent. But even if she
is relatively healthy and independent,
planning for the future is vital.
No one wants to deal with this. No
one wants to imagine, much less discuss, a time when nursing homes or,
God forbid, end-of-life decisions arenecessary. It can be awkward and difficult to bring up, and also feel morbid or

depressing, or as if you’re rushing yourparent to a place no one wants to go.
And if you’re already in the thick ofit, who has the time? Your mother needs
help getting meals, she’s convinced theaide is a thief, and your siblings aren’t
helping out. How are you supposed tomake plans for the future when the here
and now is so pressing?
Or maybe you think the planning’s
been done. She has a will. She’s signed
all the legal documents. She plans on
staying in her house. And you know
very well that she doesn’t want things“dragged out.”first things firstIf only it were that simple. What happens when your mom is in the hospitaland your dad is left on his own? What
happens when your mother needs someone to bathe her, dress her, and feed her?
What happens when the doctor turns toyou and says, “Should we put her on a
respirator?” Are you ready? Really?
Go ahead. Have the conversations.
Don’t put this off. Talk with your parent
and, depending upon the situation, holda family meeting to discuss your parent’s
current care and future needs. Assign
jobs, sort out finances, and make plans
for what sort of care he will need as hegrows more frail.
For your parent, planning ahead
ensures that he has a say in his future,
it affords him more choices, and it gives
him time to prepare for change. If yourfather is encouraged to think about thepossibility of moving out of his house
long before such a move is an issue, itwill be easier for him to make the move
if it does, one day, become necessary.
For you, planning means less workwhen your parent needs help (because
plans are in place), it means you aren’t
always reacting to a crisis, and it means
peace of mind.
Do it now because it is much, mucheasier to have these discussions when
there is no dire problem at hand, when
you are talking about some distantpossibility, when it’s a matter of “Whatif . . .” Mom, what if one day you couldn’t
handle your own finances?
Talk now; you’ll be glad you did.

Your Reluctance

Admittedly, asking your father about
his finances or anticipating a time when
he can no longer take care of himself is5

not easy. You might have a relationshipin which personal issues, particularly
his personal issues, are not discussed.
Raising them might upset a relatively
comfortable balance.
If your parent is a domineering orprotective force in your life, you risk
losing—at least for a moment—the roleof the child. And you could find yourself
taking on a strange, and not particularly
welcome, new role.
More difficult than anything else,such conversations force you and yourparent to acknowledge openly that hevery likely will decline, will need help,
and is indeed mortal.
Certain subjects—money, death—might make you particularly uneasy. But
the truth is that your parent probably
shares your concerns, and your reluctance. In fact, your mother might bekeeping quiet because she is worried
about upsetting you. Breaking the silence
might be awkward, but once everyone’s
gotten over the initial discomfort, it
should be a welcome relief for all.
Keep in mind that talking about
the worst-case scenarios won’t makethem come true, and refusing to talkabout them won’t make them go away.
Ignoring the inevitable will only leave
you unprepared for a crisis that willalmost surely one day come.

Breaking the Silence

So how does one start such conversations? That will depend on the situationand your relationship.
If you are caring for a parent who
is already quite frail or has a serious
diagnosis, and questions are already hovering, you might just tackle this head-on.
Mom, given your health and what thehow to care for aging parents

6

doctor’s told us, I think we need to talk aboutsome things.
If matters aren’t pressing and you’drather use a less direct approach, asking
for advice is a good opener. Parents love
to give advice. Dad, Fred and I are savingfor our retirement and I’m just wondering how you approached this. How much isenough? Do you worry about the cost of longterm care? Do you feel you saved enough?
Or simply start by asking generalquestions about your parent’s life—what
she most enjoyed, what she wishes she’ddone differently. Then, gradually movethe conversation forward. What does shewant out of the future? What does she
worry about?
You can also start by talking about
someone else’s situation, such as a friendor family member who is elderly. How
did the family handle it? What might
have been done differently? What would
your parent want to happen if she werein a similar situation?

If your parent cared for an elderly
parent, ask how she handled certain matters, what was frustrating about it, andwhat was rewarding.
Or, use a magazine article or television show as a springboard. I was reading
an interesting article on new aging-in-placetechnologies. Have you heard anything about
that, Mom?
If launching this discussion face-toface is too difficult, write down somequestions for your parent. Tell her thatthese are some issues you are concerned
about and ask her if she would think
about them. Then plan a time to sit
down with her and discuss them.

ListenHowever you launch this conversation,
start by listening, even when you havespecific issues you want to discuss or firm
convictions about what should be done.
You might be sure that your father
needs to move into an assisted living

When You Talk
• Pick a time when you and your parent
are calm and rested, and when you
won’t be interrupted.

• Be careful not to dismiss your parent’s
concerns by suggesting that they are
silly or by offering quick “solutions.”• Be open with the facts—a poor medical
prognosis, a major financial hurdle, a
less-than-optimal selection of housing
options. Be gentle, but don’t lie or hideinformation to protect your parent, as
this will only hurt him in the long run.

• End each discussion before you or yourparent becomes tired or overwhelmed.

• Leave the conversation open. One

discussion breaks the ice, but these
topics need to be revisited.

• If your parent changes the subject ormakes it clear that she doesn’t want totalk about something, be gentle. Let her
know you are concerned and then, if thematter isn’t dire, back off and try again
another time.

first things first
facility, but for now, just ask questions.
What does he worry about? What wouldease his worries? How does he see thisplaying out? What does he still enjoy?
What does he need from you?
And then listen. Really listen. Be
open-minded to his views. You mightassume that he’s worried about his dailycare but discover that he is most frightened about becoming a burden, losing
people’s respect, or being forgotten.
This is a whole new stage of life. Your
parent is likely to have fears and hopesthat he has never voiced before, ones
that you haven’t considered.
For example, you may want to talkabout finances, but your parent may
be so afraid of falling or he may be so
mired in grief that he can’t even think
about money.
Once he’s had a chance to talk (without interruption), let him know that you
hear him. Repeating what he’s said, usingslightly different words, assures him thatyou get it. I understand that seeing yourgrandchildren is the most important thingfor you now.
If you listen first, you will probably
learn something, and your parent will
be more likely to listen to your views,
in turn.

What Not to Do

When you raise difficult subjects, avoid
these common mistakes. Don’t:
Make decisions for him. Often,

with all the best intentions, siblings
have discussions and make decisions andthen present a master plan to a parent.
Ben and I found an assisted living homenear us. It’s perfect. We’ve talked to a realestate agent about getting your house on the7market, and he says we can make this happen
before November.
There are few more effective ways ofblocking any further conversation.
Arrive armed with paperwork.

Pages of legal documents and brochures about retirement homes will
only overwhelm your parent. This first
conversation is just an opener, not a
homework session.
Treat your parent like a child(or imbecile). No matter how sick or
confused your parent might be, he is an
adult. Don’t talk down to him. Avoid theurge to nag or lecture.
Talk over turkey. Or birthday
candles, or Christmas or Hanukkahpresents. The holidays might be the only
time you’re all together, but you probably won’t get a great response if you pullout a living will and pen while the pumpkin pie is making the rounds. If this is the
only time you can talk, then give yourparent a little notice and talk when thefestivities are over.

What to Talk About

Here are a few major topics to get you
started. All of these issues are discussed
in detail in later chapters, including suggestions on how to talk about them. You
won’t be able to cover all of this in one
sitting, most certainly. Discuss what you
can, and come back to other topics later.
needs and goals. What does yourparent most want out of her life now?
What matters to her? What does she
enjoy? What does she still hope to do?
It might be something grand—takea trip, finish a project, see a monument—or it might be something simple.

8

how to care for aging parents

Avoid Making PromisesE

ven though you might believe fervently thatyou will never ever put your parent in anursing home, you simply don’t know what the
future holds, either for your parent or for you.
Your parent may become so ill that you cannot
continue to manage her care. Your own life may
change in such a way that you cannot give yourparent the attention that you assumed you could.
Given such possibilities, don’t put yourself
in the position of having to break a promise;
don’t make it in the first place. If your parent
asks you to promise that you will never put her
in a nursing home, assure her that you will dowhatever you can to avoid it and that you will
never abandon her.

Perhaps your mom loves having lunchwith a friend, talking with her grandchildren, watching the birds at the feeder, or
listening to music. Or maybe your father
wants to go trout fishing again, see a lake
he loved as a child, or just tinker withsome projects around his house.
Does he care more about staying
in his home, being safe, or being nearfamily? Does she want to continue togarden or play the piano wherever she
lives?
All other conversations, about housing and finances and medical care,should be based on your parent’s particular goals and priorities.
Daily activities. Before you plan

the future, sort out the present. How is
your parent managing day to day? You
will witness some of this, but ask him
what he considers to be the biggest
obstacles.

Can he bathe and groom
himself? Can he get to the grocery store and prepare meals?
Does he fall now and then or
feel unstable? Can he keep
track of bills and write checks?
Is he still driving?
There are solutions to mostissues (discussed throughout
the book), but you can’t help
him if you don’t know what the
problems are.
Your parent might beembarrassed about certain
issues. Probe gently. Assure
him that most problems arecommon and manageable andthat admitting to them doesn’tmean you’ll cart him off to a“home.”
Housing. How does he feel about his

current housing situation? Can changes
be made to make life more manageable?
What about the future? Where would hewant to live if he could no longer live athome? What if it isn’t possible for him
to live with other family members? If he
has to move, what is most important tohim (staying in his hometown, proximity to you, the ability to keep a pet withhim, climate)?
Even if your family has no interest in
any sort of senior housing, consider all
the options. Visit a few facilities. Living
at home can be lonely and, unless there
are ample resources or generous community services, unfeasible.
Financial and legal issues. What

are your parent’s current financial needs
and potential future needs? Can she
meet these needs? Is she tapping into all
the benefits and discounts for which she

first things first9

is eligible? Is she spending with abandon
he or she take her complaints seriously
or saving so fiercely that it’s dangerand pay attention to issues that are notous? Is her insurance—including life,
life threatening but troubling nonethehealth, home, and auto insurance—adeless? Some doctors give short shrift toquate and current? Can she simplify her
mild memory loss, incontinence, depression, stiff joints, and anxiety, even thoughfinances?
these issues will make your parent’s life
The biggest financial issue for mostelderly people is the cost of long-term(and yours) difficult.
care. Medicare covers the majority ofIf your parent couldn’t make medidoctor bills, hospital bills, laboratory
cal decisions for herself at some point,
tests, and even a limited amount of nurswhom does she trust to do that for her?
ing care, but it does not cover the kindHas she legally named a health careof day-to-day care most elderly people
proxy to make these decisions for her?
eventually need—aides, companions,Has she talked to that person in depth
and homemakers, or extended care in aabout her wishes?
nursing home or other facility.
What are your parent’s goals conThese bills can be astronomical. Suchcerning medical care? What shouldcare can cost more than $80,000 a year,
be considered when making medical
devouring what seemed like a comfortdecisions? What’s most important toable nest egg. Those who have long-term
her—time, mobility, comfort, lucidity?
illnesses or disabilities often have to pay
Any time medical decisions are made,out of pocket until they are broke, andtalk with the doctor and your parent
then they go on Medicaid, thegovernment’s insurance forthe poor. Consider how yourparent and family might handle
such expenses.
Also, has your parent exehe elderly are conned routinely. Don’t thinkcuted all necessary legal papers,
for one minute that your parent is immune,
including a will, durable powerno matter how smart, capable, or tough heof attorney, and advance direcmight be.
tives? Is there anything she
Scams run the gamut from sweepstakes
and lotteries, to reverse mortgages andmight do to protect her estate
investments, to aides, friends, and family
from excessive taxes or, if she
members who tap into your parent’s heart andhas little savings, to get on
checkbook.
Medicaid early?

On the Lookout for Fraud

T

Medical care. Does yourparent have a good primary
physician whom she trusts?
Does this doctor communicate
with her other physicians andcoordinate all of her care? DoesThe best prevention is to alert your parent
to common scams and to be sure he isn’t
isolated because a lonely, worried, elderly
person is the perfect target. See Chapter 16
for more on protecting your parent from being
swindled and what to do when it happens.

how to care for aging parents

10

about the goals of treatment, the likely
outcomes, and other options for care.
End-of-life care. This is a tough sub-ject to discuss, no doubt about it, but it
is a crucial one. Don’t ignore it becausesuch discussions could save your family
from untold agony and grief.
Despite any promises made or papers
signed, many people die in pain, afraid,
and hooked to machines. They die after
agonizing medical treatments of questionable value.
Talk—really talk—to your parent
about her medical state and wishes concerning aggressive medical care. Get
her to sign a living will and health careproxy, but realize that these documents
are just a starting point. Alone, they will
not protect your parent from unwanted
treatments and a painful death.
Don’t accept vague (and not terribly helpful) comments like, “Don’t

drag it out” or “When I’m at that point,pull the plug.” Push the conversation
further.
What frightens your parent about
dying? What level of pain, dependence,and disability would be unbearable? Is
there a certain point after which shewould no longer want life-sustaining
medical care, such as a ventilator, artificial nutrition and hydration, or surgery?
Would she prefer that treatments befocused instead on other goals, such as
comfort, mobility, or lucidity? What
does she think about hospice care?
Ask her doctor to describe various
treatment options that might lie ahead,
and the pros and cons of each. Help her
get a realistic sense of what can be done
and what can’t.
Also, talk with your parent and thedoctor about getting an “at-home”
Do Not Resuscitate order or POLST(Physician Orders for Life Sustaining

Crucial DocumentsW

hatever else you do, be sure yourparent has the following:A n u pdat e d a n d va l i d w i l l . This

ensures that his belongings (no matter
how extensive or meager) will be allocatedaccording to his wishes. A current will
also reduces the likelihood of family
conflict and complicated probate. And fora larger estate, a properly drafted will can
reduce taxes.
A d u r ab l e po w e r o f atto r n e y.

This authorizes someone to act on yourparent’s behalf, from signing checks

to making housing choices, should hebecome incapacitated. Without one, yourfamily might have to go to court to have alegal guardian named.
A d va n c e d i r e c t i v e s . These include
a living will and a durable power ofattorney for health care (also known as ahealth care proxy). The first outlines yourparent’s wishes concerning end-of-life
medical care, and the second gives atrusted relative or friend the authority tomake health care decisions for your parent
when he cannot make them for himself.

first things first11

be prepared for an emergency

If your parent has a medical condition or
diagnosis that emergency crews would
need to know about, make this information
easily available.
Put essential medical and contact
information, along with any living will, healthcare proxy, and advance medical orders

in a clear plastic bag. Label the bag andtape it to the door of the refrigerator or theback of your parent’s front door (where
emergency crews will look for it).
In addition, get your parent a medical
emergency bracelet that identifies him
and provides critical medical information.

Treatment). Despite what TV shows suggest, cardiopulmonary resuscitation, or
CPR—attempts to restore some function
to the heart and lungs—is a brutal procedure. A sick, older person is unlikely tosurvive it or ever leave the hospital.
Once you know your parent’s wishes,
you may have to brace yourself to makesome tough decisions and to fight asystem that is focused on aggressive
treatment.
For more on these documents andtalking about end-of-life care, see pages
368 and 527.

“

Your Parent’s Denial

When your parent is hiding behinddenial or simply dodging the issues—
Oh, honey, why do you bring up such dreadful things? Everything is fine. Let’s talkabout something more pleasant—grant hersome of that protection. Be patient andtry to understand her fears and the reasons why she might not want to face
facts. Old age and the disability anddependence that often come with it are,obviously, difficult to accept. Denial andavoidance are natural responses.

After my father died, I was very
worried about my mom being
able to handle her finances. My dad
always took care of everything that
had to do with money. I don’t think mymother had ever even balanced thecheckbook.
I said to Mom over and over, ‘Let’s
review your financial situation,’ and I
offered repeatedly to take care of her bills
for her. She’d say, ‘Brenda, don’t worry
about it. I’m fine.’ And then she’d change
the subject.
Then my brother came to visit, andwithin a day he had Mom pulling out folders and showing him bank statements.
By the time he left, she had handed
over almost all of her financial stuff tohim.
I was stunned. I mean, I was glad
to have it settled, but I was also a little annoyed. I’m an accountant. He’s ateacher. I guess she feels that money ismen’s work.
I probably should have thought to get
him involved right from the start.”—Brenda S.

how to care for aging parents

12Remind her that you care and want
to be helpful, and then ask her to please
think about the matter. You have planted
a seed. She will surely give the subject
some thought.
Give her a couple of weeks and thenbring it up again. Mom, I know this is difficult for you. But if we talk about these things,
we can make sure that you get the kind ofcare you want.
If you still are not successful, ask
another family member or close family
friend to talk with her. For whateverreasons, she may be more receptive tosomeone else.

You might also suggest that yourmother talk with a member of the clergy,
a social worker, a lawyer, or a doctor
about certain matters. If that doesn’t
work, you might call these people andask them to raise the subject with her.
It’s often easier for people to talk to andaccept the advice of someone outside thefamily circle, especially if that person is atrusted professional.
If, no matter what you do, yourparent remains steadfastly silent, talkwith your siblings and prepare without her.

Checklist: Information You Will NeedD

ocuments, information, and items thatyou are likely to need:❏ Names, addresses, and phone numbersof:• doctors, dentists, pharmacist, andother medical providers and suppliers• lawyers, financial advisers,❏ Driver’s license and/or passport❏ Your parent’s will and any codicils(amendments) to the will
❏ Durable power of attorney❏ Living will and power of attorney for
health care• banks, investment firms, and other❏ Keys to his house, office, safe-deposit
box, and post office box, as well as
combination to any safe or lock• clergy members or religious❏ Insurance policies (life, health, disability,
homeowner’s, and auto)

accountants, and insurance agentsfinancial institutionsorganizations• your parent’s relatives, close friends,❏ Social Security, Medicare, andMedicaid numbers and identification
cards❏ Medical history (illnesses, medications,
treatments, allergies, immunizations)❏ A list of employers, dates of
employment, and terms of employment❏ Certificates of birth, marriage, divorce/
separation, and citizenship❏ Any business contracts or rental
agreements❏ Military/veteran’s papers❏ Deed to his house or rental agreement

caregivers, and neighbors

first things first

13

Gathering Vital DocumentsAs your parent grows increasingly
frail, your family will need certain
financial statements, contact information, and medical records. Locatingthese things when your parent can nolonger guide you can be exceedingly difficult. Gather them—at least the mostcritical ones—now.
If your parent is infirm and you
have to look for these papers without
his help, start in the obvious places—asafe-deposit box, desk and bureau drawers, office files, and papers stacked ontables and in corners. If you have trouble locating certain documents, call yourparent’s lawyer, accountant, or anyone
else who has had a hand in his financial
or legal affairs. Look for leads such as
bills, canceled checks, receipts, address
books, and letters.
You might be able to track downsome documents on the Internet.

❏ Deeds or titles to real estate,
automobiles, boats, and other vehicles❏ Monthly bills (utilities, taxes, mortgage,
insurance premiums)❏ The location of any valuables (including
anything hidden away)❏ Your parent’s assets, including thevalue of:❏ A list of all charge, debit, and bankingcards• savings, checking, money market, and❏ Passwords, access codes, PINs

• stocks, bonds, and other securities❏ Any automatic bill-paying or electronictransfer arrangements• real estate❏ Appraisals of personal property

retirement accounts• automobiles, boats, and othervaluables❏ Copies of federal and state tax returns
from the past three to five years• business ownership and partnership❏ Receipts from property taxes and otherlarge recent payments• profit-sharing and pension plans❏ Burial and funeral instructions, if any• outstanding loans

Your parent or you should make lists of thefollowing (there is a “Financial Planner” onpage 651 and at careforagingparents.com
that will help you organize this material):

agreements• trust agreements❏ All debts, including mortgages andother loans, credit card balances,
outstanding bills, and other liabilities

14

how to care for aging parents

The Centers for Disease Control andPrevention website has a state-bystate list of offices to contact for vitalrecords (cdc.gov/nchs/w2w.htm), as
does the federal government’s website(usa.gov). The Department of Veterans
Affairs (va.gov) and the Social Security
Administration (ssa.gov) also have useful
information.
Insurance companies will often provide information about a policy evenwhen the request comes from a family
member of the insured. The Social
Security office, former employers, andthe local office of veterans’ affairs mightalso be willing to send you information
about pensions and other benefits.
Banks are not very open in thesesituations unless you have proper authorization or are dealing with a local bankwhere the manager knows your family.
By law, banks can give out account information only to the owner of the accountor the owner’s legal proxy or guardian.

“

During my mother’s illness, I accumulated so much stuff—brochuresfrom nursing homes, documents fromlawyers, forms from Medicare, pamphlets
from social service agencies. Every time
I got something, I just tossed it into thisgiant box in my bedroom. Then wheneversomething came up, like when I wanted
to get meals delivered to her while I wasaway, I would think, ‘Oh yeah, I havesomething on that,’ but I could neverfind it.
A friend came over one day anddumped out my box and started sorting
through it. She spent the entire day organizing the whole mess.
That was the best thing anyone did forme during those two years. Not only could
I find things quickly, but it made me feelbetter. I’d been feeling so out of control,
and that gave me a little edge. It made anenormous difference.”—Terry B.

Exploring the Options

D

on’t wait until there is a crisis or you
are completely frazzled to learn
about community services and housing
options. It will be too hard to do suchresearch then, the options will be limitedon short notice, and honestly, you should
use such services long before you think
you need them (because you need themlong before you think you need them).

Starting Points

Your parent’s doctor might know aboutsome local services or should be able
to direct you to someone who does.
Friends who have been in a similar situation might also be helpful. Beyond that:
The area agency on aging is thebest place to start. These agencies go byfirst things first15

a medley of names—bureau on aging,council of senior services, commission
on the elderly, and so on. You can findthe one for your parent’s town throughthe Eldercare Locator (eldercare.gov or
800-677-1116).
The agency will have information
about many of the services, programs,
and housing options available in yourparent’s community. Although you
can get general leads from an agency’s website, it’s a good idea to call. A
staff member should be able to answer
specific questions about your parent’s
care.

in your parent’s community. Some willoffer guidance even if your parent is notin the hospital.
Be aware, however, that some hospitals have agreements with certain
agencies and facilities, and thus the discharge planners might be biased.

Local senior centers, community

The

groups, and religious organizations often offer or can refer you to

local services, programs, volunteers,
courses, and organizations.
A hospital’s discharge planneror social services department is responsible for making sure that patients havethe services they need when they leave
the hospital. These caseworkers should
know a great deal about the options

Employee assistance plans atlarger companies often provide information on eldercare. See what yourworkplace offers. Some can refer you
to services in other areas, and others
will put you in touch with a trained caremanager who can guide you.
s tat el o n g -t e r m - c a r eombudsman’s office, which repre-

sents residents of nursing homes andtheir families, can give you information
about local nursing homes and othertypes of housing for the elderly (ltcom
budsman.org).
Medicare’s website (medicare.gov)

explains coverage and benefits and provides information about home care andhousing options.

Caution on the Web

Although there are a number of good
websites on the topic of aging (seethe ones listed in Useful Organizations
on page 608), there are an abundanceof useless ones and quite a few unsavory
ones. Use the Internet with caution.
Care of the elderly is big business.
Drug companies, insurance companies,
medical supply companies, and others
who are simply trying to sell something

set up sites that appear to be reputableand unbiased—but aren’t.
Several large sites that offer generalcaregiving help and free personal
assistance get generous commissions
for leading people to specific nursing
and assisted living homes. Others tilt
articles to appease advertisers. A gooddose of skepticism should see you
through.

16

how to care for aging parents

A geriatric care manager can (fora price) assess your parent’s needs andhook her up with local services or takeover your parent’s care almost entirely.
You can find one through the National
Association of Professional GeriatricCare Managers (caremanager.org).
organizations for a particulardisease often have local chapters thatcan direct you to services and programsnear where you live. Some of these organizations are listed in the Resources

section, starting on page 610. You can also
get referrals to national organizations
from the National Health Information
Center (health.gov/nhic) or the National
Rehabilitation Information Center(naric.com).
211. Many states have established humanservice information lines, which arecontacted by dialing 211 (or visiting
211.org). Operators are trained to linkpeople to social services and local
programs.

Getting OrganizedI

f you diligently write lists on scrapsof paper and then misplace them, or
if you’re constantly remembering things
that you shouldn’t have forgotten in thefirst place, know that life is only going to
get crazier now.
When a parent needs care, thereminders, names and numbers, appointments, bits of information, and to-do

lists start pouring into your life like confetti. Organization is the only way you
will survive this.
If you didn’t start out organized, pull
it together now. Really, an hour or two
of work now will save you many hours
and untold frustrations later. You’ll findyour own system, but here are a few possibilities to consider:

HAVE A PLAN B

I

f your parent depends upon one person
for her care, have a contingency plan
ready in case that person is suddenly
unavailable. Be sure that someone canstep in on short notice, or that your mothercan go to a senior center, adult day care,someone else’s house, or into a local
senior residence for a temporary stay.
You don’t want to be caught in direstraits when life takes an unexpected turn.
And life with an elderly parent is apt totake unexpected turns.

first things first17❏ Once you have a master list of

all essential names and phone
numbers, create a “group”
in your contact list that you
can access from your phone,tablet, or a computer, anywhere at any time. (If yourinner Luddite has kept you
from such technology, do it
the old-fashioned way, on apiece of paper or in an address
book that you keep with you.)
Have the most critical phone
numbers on speed dial.

Signs That You Need HelpD

❏ Put your parent’s medi-

cal information, passwords,
and other critical information on a flash drive (that you
carry with you) or in a document that can be accessedfrom any computer. A variety
of apps allow you to do this, including Dropbox, Evernote, and Apple’s
Notes. Keep these files up to date!

❏ Set up an online calendar with allof your parent’s appointments andschedule that others can access. There
are many to choose among (Google
Calendar, Yahoo Calendar, Apple’s
iCal, or Scrybe, to name a few).

❏ Keep a log of your parent’s medicalcare, either on the aforementioned
calendar or in a separate document(see page 643). Include dates of treatments, when medications were started
and stopped, instructions, and symptoms. Then you can tell a doctor whena symptom began or remind a nurse
when a medication was started.

❏ Keep all other relevant informa-tion—documents, brochures, medical

on’t wait for warning signs. If you are a
primary caregiver, you need help. Period.
Get siblings and other relatives, friends,
volunteers, and professionals involved fromthe start.
Some signs that you need help urgently:
You are angry, frustrated, short-tempered;
not eating or eating constantly; not sleeping,unable to get out of bed; losing weight or
gaining weight; sick, anxious, crying at odd
moments; wishing you hadn’t had that extra
drink last night; or lashing out at your kids, yourparent, your spouse, or anyone within earshot.
Contact the Eldercare Locator (eldercare.gov
or 800-677-1116) to learn about local support
services. Then use them.

papers, and so on—in one location.
Buy some folders and a file box, or an
accordion file.
❏ Rather than scribbling errands on

scraps of paper and leaving Post-its
around the house, have a single to-do
list that is accessible from your phoneor computer.

❏ Download a scanner app to your cell

phone so that you can scan important
documents on the spot.

❏ Get your parent signed up for auto-

matic deposits and automatic billpaying.

❏ If family and friends want to know thelatest news, create a group email list,
start a Facebook group, or use a web
service such as CarePages (carepages.com) or Caring Bridge (caringbridge.org).

18

how to care for aging parents

Websites that help you get organizedI

f a number of people are involved in yourparent’s care, sign on to a caregiverwebsite. Although they are all a bit different—and evolving—the simplest ones let youorganize contact lists and post news,
photos, and messages. Most include acalendar where you can keep track of
appointments and work shifts, and post
tasks that need doing so others canvolunteer to help. A few let you store
medical and legal information, get updates
from doctors (if they are inclined to use thesite), and keep track of medications andsymptoms.
These sites let everyone involved
communicate about your parent’s health,schedule, and needs. Does anyone havea small shower seat? Can someone sit

with Dad for a few hours on Friday night?
Most sites have a free trial period andthen charge some sort of fee. This is not abad thing, as it generally means that they
do not have advertisers, do not have abias, and do not sell your information.
Of course, these sites are only as goodas the people who use them. If people are
diligent, then it’s a great way to be sureothers know what’s what when you leave
for a few days or to be sure that an aidegave Dad his evening pills.
It’s a growing market, but here area few sites to consider: Lotsa Helping
Hands (lotsahelpinghands.com), Caring
Bridge (caringbridge.org), CareZone(carezone.com), Saturing (saturing.com),and Tyze (tyze.com).

❏ Each time you call a home care agency,

relay it reliably to others. Get into thehabit of asking for people’s direct lines
or extensions, and keep note of them.

lawyer, or social worker, make a note
about the call (on your incrediblyorganized calendar, perhaps), including the name of the person you spokewith and what you talked about, so
you can refer to it later. (But I spoke to
Anne Preston on March 18, and she confirmed that the home health aide would
start tomorrow.)❏ Whenever you make calls to agencies,

doctors, and so on, have all the necessary information in front of you, withyour questions written out. Otherwise,
you may forget an important questionand have to go through all the secretaries and recorded announcements
again. When you get the information
you’re after, write it down so you can❏ Confirm, confirm, confirm. It’s betterto confirm an appointment the week
and/or day before than to find outthat your father’s physical therapist
has taken an unscheduled vacationand his assistant forgot to cancel his
appointments.

❏ Make copies of important papers—

receipts, insurance claims, nursing
home applications—before handing
them over or putting them in the mail.

❏ If the days slip away from you try writ-ing a detailed schedule to help youorganize your time and use it more
efficiently. You might not adhere to itfirst things firstprecisely, but it will help structure yourday so you are not constantly thinking, I’ve got to get to the grocery store.
I can’t believe I forgot to call the Social

19

Security office. Wasn’t someone supposed
to pick up Mom’s walker? The task—or
the breather you so desperately need—
will already be assigned to a time slot.

When You Can’t Be ThereI

f you live far away or are busy at work,
you have to be extra organized. You
must plan ahead because you don’t havethe luxury of responding immediately toa crisis. What are you going to do when
you’re at work, two hundred miles away,
and you get a call that your father hastaken a turn for the worse and needs help?
At least a third of all family caregivers care from afar. They live at least
an hour away and usually four or more
hours away. About half of caregivers
work either full-time or part-time.
Not being with an elderly parent day
in and day out can make life easier insome ways, but it increases the burden
in others. The cost of travel, phone calls,
and hired help can be hefty of course,
but it’s the worrying and guilt that canbe unbearable. Is she all right? How will
I know if she isn’t? Should I book a flight?
Should I take time off from work?
Forget the guilt trip, but do make themost of your visits. Now more than ever,organization and preparation are thekeys to your success—and your survival.
Take another good look at what’s
been discussed so far in this chapter.
Here are a few additional tips for organizing from a distance:• Have all important phone numbers —doctor, lawyer, aides, and so on—with
you at all times.
• Be sure that your parent, her doctor,
and anyone involved in her care know
how to reach you.
• Check out local services and facilities
well in advance.
• Sign her up for any helpful services assoon as you think they might be of use.
• Establish a local support network.
Make a list of friends, family, or neighbors who live near your parent. Let
these people know of your concern.
They can alert you to signs of trouble
and help out in a crunch.
• Have the name and number of a local
handyman. (A pipe just burst in yourmother’s house. Who are you going tocall?)• Leave a duplicate of your parent’s
house key (or code to a security
system) with a trusted neighbor orfriend, and/or hide one outside herhouse in case there is an emergency
and someone needs to get in.

20

how to care for aging parents• Get your parent hooked up to theInternet so she can communicate
with you and others. You can find laptops and tablets that are very simple.
Also set her up with Skype or anothervideo chat service. This way, you cansee your parent as well as hear her,
which will help you spot problems.
You might connect while you cook or
your family eats dinner so your parent
can be a part of things. It’s no workfor you, and it will make her feel lessisolated.
• Organize your visits in advance so you
can accomplish as much as possible.
If you need to meet with a doctor or
lawyer, set up the appointment at least
a month in advance, as their schedules
fill quickly.
• When you are with your parent, try to
identify possible problems. Is her gait
unsteady? Has her weight, hygiene,or temperament changed? Are herbills piling up? Is her food spoiled? Is
she getting out and doing things? Is
she asking you to repeat yourself andforgetting important information? Be
alert to signs of depression, infection,
dementia, waning eyesight or hearing,and other ailments.
• Even though your life is busy, try tospend some time simply being withyour parent, chatting, watching amovie, shopping, or just sitting quietly. A trip that’s all business misses a
critical element.
• Learn to distinguish real emergencies
from unfounded complaints. It’s okay
to say that you can’t come right now,that you were just there last week.
Reassure her without feeling guilty.

(Be aware that unending complaints
and requests for reassurance may bean early sign of dementia; if this is a
new habit, talk to her doctor.)• If your parent lives alone and doesn’t
get out much, see if a relative or friend
will stop by occasionally. A local church,senior center, or religious organization
might know of volunteers who cancheck on your parent. Or you can hirea companion. If your parent has inhome care or lives in a nursing homeor other institution, it is still importantthat someone check in on her regularly.
• Buy your parent an emergency
response system (see page 120) so she
can get help immediately if she falls or
is injured.
• Although the Internet is amazing,
sometimes it’s handy to have a copy ofthe phone book or yellow pages fromyour parent’s hometown to look up ahome care agency, say, or track down aparticular doctor.
• When things get unwieldy (preferably before they get unwieldy), consider
hiring a geriatric care manager, orfind out if a local agency offers subsidized care management. A manager
can assess your parent’s needs, organize
local services, handle emergencies, andkeep you up to date.
• Above all, take care of yourself.
Recognize and accept the limits ofwhat you can do, and give yourself
credit for all you are doing. Don’t hesitate to ask for help or use community
services. And get support from friends
or a professional counselor to help you
alleviate stress and guilt.

Chapter 3

Caring for
the Caregiver
Setting Limits • Emotional Minefields • 12 More Steps to a
Healthy Mind-Set • The Male CaregiverA

lthough it might not make sense immediately, caring foryourself during this time is one of the most important things
you can do, both for yourself and for your parent.
Don’t flip past this chapter, thinking that you simply don’t havetime for such things. My mother needs me. I can’t worry about myself
right now. I’ll be fine.
Your parent’s care can consume an ever-expanding piece of yourlife and suck you into a swamp of anxiety, guilt, and resentment.
Before you know it, you are too busy for friends, snapping at your
spouse, distracted at work, hugging a bottle of wine, and constantly
trying to shake a cold.
Handling six things and worrying about another four while, onsome visceral level, feeling angry at the world isn’t healthy. It leads
to irritability, isolation, depression, and, more often than one would
imagine, physical illness.

42

adapting to new roles

You cannot take good care of your parent if you do not take careof yourself. It’s that simple. As any flight attendant will tell you, youhave to put your oxygen mask on before you assist the person seatednext to you.
So no matter what the demands on your time right now, take a
step back. Breathe deeply and slowly. Get some perspective. And tend
to yourself. Oddly enough, it will help you be a calmer, gentler, andmore efficient caregiver.

Setting LimitsIf there were such a thing as Caregivers
Anonymous, the first step in the program would be to get rid of that little
voice inside you that says, I can do it all.
I am responsible for everything. Whatever Ido, it’s never enough.
Of course you want to make yourparent well, make her happy, make hersafe. In fact, if it were possible for you to
be with her every minute of the day, perhaps you would be. This is your parent,
after all. She needs you.
But the truth is, you can’t be withher 24/7, and trying to do so will only
exhaust and frustrate you without really
helping her.
So how do you use your energies
most effectively? If your mother has
a sudden and severe illness, of course
you’ll want to be there. But when her
needs are more chronic, when you
find yourself taking on more and more
responsibility, you have to step back,take a realistic look at the situation,and establish some boundaries foryourself.
This might require a seismic shift
in thinking, a great realization that you
are not responsible for everything, thatyou cannot fix everything, that you need
help, and that you have a life (or somesemblance of a life) of your own.
As hard as this is, you might be surprised to discover that setting some
limits relieves your guilt, eases the tension, and gives you more patience andenergy for those things that only you
can give.

“

Like the waves of the ocean, it
sometimes overwhelms me. I think
I’m this incredibly strong person, but I’ve
been spending all my time taking care of
stuff for my parents and I’m the one who’s
falling apart. It’s way too much. They are
doing much better than I am.”—Lou Ann W.

caring for the caregiver
Examine your motivation. Why are

you helping your parent? It sounds likean odd question, but it’s a healthy one
to mull over. Do you feel that you havea cultural or religious duty to care forher? Do you view your parent’s care as
an unfair burden that was dumped on
you? Or are you helping because, given
your parent’s situation and your priorities in life, this is what you gladly choose
to do?
Your motivation might be complicated, but take a moment to think
about it. Then consider your options,and make a conscious choice about

43“

For a long time, I visited my motherthree times a week, but I was
always running and always tired. I started
to dread each visit, and I was angry withher because I felt it was all her fault. She
was ruining my life.
Then a friend said to me, ‘This isn’t
her fault. It’s your fault.’ And, you know,
she was right.”—Fran M.
your involvement in your parent’s care.
If you can accept this as your choice,something you decided to do—not as

Acknowledging the Job

Quite often, people tending toan elderly parent don’t identify
themselves as caregivers. They think they
are just doing what needs to be done,
what anyone would do. She’s my mother,for Pete’s sake. She took care of me; I cantake care of her. This is what families do.
Convinced that this is somehow normal,
they don’t understand why the task is so
hard or why they are falling apart.
Although it’s true that people havecared for their parents throughout history,
across cultures, and around the globe,
much has changed. In fact, the sort ofeldercare we face today is a relatively new
phenomenon.
Just a couple of generations ago,people grew old, became ill, needed somecare, and died. Today, people live for years
and years with complex medical issues.
They don’t simply need a loving touchand some hot food; they need catheters,
oxygen, and eight different medications.

They need someone to put a spoon in
their mouths, get them on the toilet, pullon their socks, and remind them what day
and month it is.
The caregiver side of this coin haschanged as well. Families often live
far apart, and women, the traditional
caregivers, are working and having
children later.
For all these reasons, the job has
become far more demanding, complex,
and prolonged. It is not just what families
do. Caregivers jeopardize their health,careers, finances, and relationships.
They have a higher rate of depression,
insomnia, illness, and even mortality. Thistask is literally killing them.
Caregiving is hard work. The firststep in taking care of yourself, and thus
taking better care of your parent, is toacknowledge that this is a big job, andthat you cannot do it yourself. You needlots of help and support.

44

adapting to new roles

something your parent, your siblings,
or a judgmental or unjust world has
dumped on you—the work you do foryour parent will still be difficult, but it
will feel more like an interruption andless like an imposition. It will be a conscious decision that is more about loveand family and less about old debts andunmet needs.

crucial, what can be skipped, and what
can be done by others.
Now what about you? What are the“musts” in your life? What has to be
done? What can be pushed off your todo list? And what do you need in your life
so you can stay sane? A night out eachweek with a friend? An hour each morning for exercise? Time with your kids?

Identify the need. You might know

Create a plan. Now that you havewhat needs to be done, but be specific.
Write it down.
What does your parent need, andwhat is a luxury or perceived need? Does
she need someone at her house every
afternoon? Does she need help withbathing and dressing? Help with medications? Rides to the doctor? Make achecklist of her essential needs—themusts—and then a second list of what
would be nice—the extras. Star anything
on the list that only you can do (and bevery selective here).
Writing it all down, preferably with
her input, will help you see what isyour lists, determine what you can reasonably do and, more important, what
you have to stop trying to do.
Day to day, your parent’s care may
seem more pressing than other matters in your life—everything you do foryour parent at this point might seemessential—but think about it. Visiting
your mother every day may be ideal, butwould she be okay with fewer visits?
As you decide what’s truly necessary,consider what you may be ignoring or
giving up because of your parent’s care.
Are you willing to jeopardize your own
health? Neglect your children? Damage
your career?
You might decide you willhandle her finances, confer
with her doctors, and visit twicea week, but not more than that.
Or, if you live with your parent,
f you are logging a lot of caregiver hours andyour siblings simply can’t (or won’t) help much,you might create some paramthen consider getting some compensation foreters, some specific times of
all you are doing, especially if you have scaled
day when you can help her andback hours at your real job. Seriously. Don’t beother times when your family
a martyr. A long-term caregiving job can wreak
has some privacy.
financial havoc in your life and create a lot of
Be conservative in your plan;
resentment. Some sort of compensation can
it’s always easier to increase yourease the strain and mollify family relations. See
commitment than to decrease
page 66 on how to create a caregiver contract
it. Don’t promise to make three
and calculate compensation.
regular visits if that puts you
over the edge; keep it at two.

get CompensatedIcaring for the caregiver“

I was so run down, going to workand then going to the hospital. If
someone had a cold, I got it.
I got C. difficile. It’s an infection elderly
people in hospitals get. I was in the ER
with diarrhea, dry heaving, headaches. I
was sick for 10 days.
Then I realized, I am sacrificing myhealth for hers. I said to a friend, ‘I’m
60. My mom is 91. I still have some goodyears ahead of me, if I’m lucky. She
doesn’t. I can’t sacrifice my health for
her anymore.’”—Maggie B.
Dole out the chores. In the begin-ning, caring for a parent can be likecarrying around a backpack. It’s not soheavy. And it feels kind of good, doing
this for your parent. Anyway, he needs
you to carry it.
With time, however, the backpack
grows heavier. You trudge on because
you must, but your step has slowed considerably, and your shoulders are sagging
under the pressure.
You might think that (a) you don’t
need help, (b) no help is available, and (c)no one else will do it as well as you will.
The truth is (a) you do need help, (b)you haven’t looked hard enough, and (c)you’re right, no one else will do it quite
the way you do it, but that’s okay.
Dole out any jobs you can. You do
not need to take this all on by yourself,
nor should you try to. Get other family
members involved, use community services, hire help, and when necessary,consider other housing options.
Siblings, in particular, should becalled on right away. They might have45

different ideas about your father’s care ordifferent ways of doing things, but theyshould be involved. If you begin this as afamily effort when the tasks are smaller,
you will have each other further down
the road when the needs and responsibilities tend to be more monumental.
(See page 61 for more on dealing withsiblings.)
Get your parent hooked up withlocal services early so he has time to getused to them before his health declines
further, and so he becomes less dependent upon a sole caregiver—you.
Let other people give you a hand as
well. Someone might pick up your dog
at the veterinarian, bring over a casserole, water your plants, or stay with yourparent for an afternoon.
However you do it, get help!
Let go of futile efforts. Don’t

waste precious energy trying to get yourparent to change her ways if it’s clearthat she won’t. Talk with your parent
about your concerns, get others to help
in the effort, and show her other options.
If she still won’t budge, and she is mentally competent, you might have to giveup.
For example, if you are spending a
lot of time researching group homes forthe elderly, and your mother has absolutely no intention of moving, at somepoint you need to stop the hunt andget on with more productive tasks, suchas safeguarding her house and finding
community and in-home services.
You might feel that you have failed,
but you haven’t. Your mother might bein a somewhat risky situation. She mightfall or run out of money. But you havedone what you can, and you cannot do

46

adapting to new roles

Caregivers as Frogs

I

t turns out that the old frog metaphor
is not scientifically valid, but it’s a good
illustration anyway. Just don’t try this at
home.
The story goes like this: If you put afrog in boiling water (sorry, disgusting,but read on), it will thrash around trying
desperately to escape the pot. However,
if you put a frog in cool water and ever so
gradually, degree by degree, turn up theheat, the frog doesn’t thrash at all. Even
when the water is boiling, the frog barely
moves. Why? Because it doesn’t sense
any change; it learns to tolerate the heat.
Before our little frog knows what has
happened, it is cooked.

Scientifically inaccurate (frogs do try
to get out), and yet strangely familiar.
If your parent suddenly, out of theblue, needed an enormous amount ofassistance and services, you would
frantically get help. But when this task
starts with a few calls and visits and everso slowly, degree by degree, requires
more and more time and energy, you
might not register exactly how desperateor unusual the situation is. You might
simply, well, cook.
The point is, as much as you want tohelp—and you will help—don’t ignore thefact that you might be in a pot that is
simply too hot.

any more. You can’t blame yourself if
your parent’s decisions are, in your mind,
poor ones.
Likewise, if your siblings simply
won’t help, push and prod, but at somepoint learn to live with it. Urge them.
Have a family meeting. But eventually,
let it go. Don’t waste valuable steam.
Letting go of hopeless crusades is anenormous accomplishment. Then you
can accept life as it is and work within
existing parameters.

Say no to the mirror. Just get the wordout.
Confronted with a parent’s escalating needs, you may learn, perhaps forthe first time in your life, how to act on
your own behalf.

Learn to say no. Caregivers are often

as bad at saying no to requests for help
as they are at saying yes to offers of help.
Women, in particular, often have trouble
saying no, but such martyrdom is neither
helpful nor good.
Convince yourself that saying no tocertain things is not only okay, but necessary. Practice. Try it out on the dog.

“

When I retired, I didn’t tell mymother. I didn’t want her to think I
was more available, that I had more time
for her. I had been taking care of her
for several years, and when I retired, Irealized there was a lot that I wanted to
do for myself, a lot that I had neglected
because of her.
I told her that I was working fromhome more, in case she called and foundme there, but I didn’t tell her that I had
retired. And I have never regretted it.”
—Barbara F.

caring for the caregiver
Stick to your guns. Sure, you candecide to cut back on some visits, evenput a plan in writing, but how do you
stick to it?
Say you decide that your marriage
needs more attention, but just as you
and your spouse settle in for a quiet evening together, the first in weeks, you findyourself feeling guilty for not being withDad. You’re short with your husband
and end up calling your father in the
midst of dinner, just to check in.
Be firm in your resolve. If you decidethat you are not going to concern yourself with your father’s financial affairs
anymore because you have handed thatjob over to another family member, don’t
spend an evening researching reverse
mortgages. If you’ve told your motheryou cannot be interrupted during work,and she continues to call hourly, remind
her gently that this is not the time totalk and that you’ll call her when you get
home. Then hang up. (Be aware, however, that a constant need for reassurance
may be an early sign of dementia.)
No comparisons. Whatever you

decide to do, and not to do, don’t be influenced by what someone else is doing. Just
because a friend visits her father every

47“

I used to spend hours trying toconvince my parents to move outof their big house and to organize theirfinances. But they didn’t do anything.
They would ask me questions and listen
and act like they were going to do something about it. But they never did.
And then I realized, they are not going
to change. They are not going to move
until something forces them to. And there
is nothing I can do about it. It was terribly
difficult to back off. You want so much tohelp, and you know things are only goingto get worse. It took me three years togive up and let go, and I still struggle withit sometimes. I just have to go along and
see what happens next.”—Diane P.
afternoon doesn’t mean that you shouldchange your schedule. Just because aguy in your support group cared for his
mother in his own home for 12 years,
don’t feel that you aren’t doing enough.
Every situation is different. Every
relationship is different. Each person
faces different demands and has different
supports. Only you can create the rightbalance for yourself. Find it and accept it.

Emotional Minefields

S

imply surviving parentcare requiresthat you deal with some potent emotions. Believe it or not, the reactions you
are experiencing now, even the ones thatseem disturbingly illogical, cruel, childish, or out of character, are completely
normal and common. Most of them canbe tempered.

48“

When I was taking care of my dad,
I was so exhausted and I lost a lotof weight. I went down to 103 and looked
gaunt. When you feel like throwing up all
the time, you don’t eat.”—Maggie B.

Guilt

Ah, guilt, the constant companion ofcaregivers. Women are particularly goodat guilt. I’m not doing enough, I’m notdoing it right, I should have done somethingelse. And isn’t it interesting that we canfeel so guilty for not doing enough, andin the very same breath be resentful that
we have to do so much?
Guilt is not a particularly useful emotion, especially in this case. So get ridof it. Summon it up, vomit it out into a
trash bag, tie it up, and toss it out. And
then do it again and again, because guilt
has a sneaky habit of reappearing.
Stop focusing on what you are notdoing, or what you imagine you should
be doing, and focus instead on what
you are doing for your parent (and forothers in your life). Make a list of thesethings and be sure to include everythingthat you provide—emotional support,
phone calls, visits, talks with doctors,
help with financial matters, and so on.
What would your parent’s life be like
without you?
Recognize and be proud of what you
are giving, and give it generously. But
please, dump the guilt.

Helplessness and Worry

Given all the medical issues, the costs, thepaperwork, and the various players andservices involved, it’s no wonder caregivers often feel stymied and helpless.

adapting to new roles
The fact is, a lot is out of our control. No
matter what we do, our parents become
frailer. Death looms.
It’s a downward trajectory that sometimes feels like a free fall. The sense of
powerlessness and the worry that goeswith it can be paralyzing.
Take Action. Don’t stew—do.

Don’t just complain to your friends
about a chronically late home care
worker, a rude orderly, or a poorly run
meal service. Talk to the person involved,
and if he’s not responsive, speak to asupervisor. Be pleasant but persistent.
Take action.
Ask questions when dealing withprofessionals. Be an educated advocate
for yourself and your parent, and don’t
be afraid to speak up when necessary.
Getting answers and taking action is
far better than letting problems fester. It
will give you some sense of control. Most
important, it often leads to solutions.
Set Aside a Worry time. Rather thanstewing during a meeting at work or
lying awake at three in the morning, set
aside a specific time, 15 minutes or half
an hour each day, maybe during a walkor a commute to work just for worrying.
It sounds ridiculous, but it works.
When you can’t stop fretting, jot
down whatever it is you are thinking
about and know that you will contemplate it during your “worry time.” Then,go back to sleep! It’s been scheduled.
In the light of day, you’ll probably
discover that it wasn’t all that criticalafter all.

Resentment and Anger

Your parent’s care is consuming your life.
Your siblings aren’t helping. Your spousecaring for the caregiver
isn’t supportive. The world isn’t fair. And
now, your heart is racing and your headaches. Resentment can be toxic.
It can also be self-perpetuating. You
resent your parent for being a burden,
then feel guilty for resenting him, thenresent him because he’s making you feelbad about yourself.
Anger is more difficult to deal withbecause it is so hot and blinding. Be
careful. Anger can lead to rash acts,
regrettable words, broken relationships,
and abuse.
Walk away. When you are angry, don’ttake any action. Get away from the situation and simmer down. Breathe deeply.
Get help. Right away. Contact the areaagency on aging (eldercare.gov) andlearn about adult day services, respitecare, in-home care, and other local services. Then use them.

49
Get support. A support group is greatfor defusing anger and resentment.
These emotions are common; sometimes simply realizing that you’re notalone can help. Or talk with a therapist
individually.
Ask why. Once you’re calm, address

the reason for your feelings. You don’t
want to explode, but you also don’t want
to implode. What makes you so stomping mad? Is it really your parent’s care, oris it your brother’s criticism, your fears
about your own old age, or a sense thatsomebody, somewhere, should be thanking you? What is causing this reaction?
Reframe it. That is, rather than simply

being angry or wishing that a person
or situation were different, think about
what you can do to change the situation.
If you resent your parent because you
are doing too much and missing out on

Those Unthinkable ThoughtsM

ost people caring for an aged parent
wish, at some point along the way,that their parents would die. It might be a
fleeting thought or a constant presence.
Either way, it can be very disturbing.
If you are hoping that your father will
die soon because he is terminally ill
and his existence is pretty miserable,
you are not being unkind; you are being
merciful.
But you might be wishing that yourparent would die because he is a burden
or a curmudgeon, or because youwant an inheritance or your privacy, or
because you are simply tired of waiting

and wondering. In other words, youwant him to die not for his sake, but for
yours. When this thought process starts
parading around your brain, it can makeyou feel like an awful person.
Forget it. You’re not. Caring for a frail
parent, even if you are not providing
hands-on care, is draining on many levels.
Since there is really no other possible
outcome, it is natural to want the struggle
to end, for everybody’s sake. You are nota bad person for feeling this way. You
are only human. Get support and be sure
your wishes don’t translate into abusive
actions.

50“

What’s difficult for me is the guiltthat I’m not doing enough. Afterall the logistics of working stuff out anddoing payroll every weekend, I end up notseeing my mother as much as I would like.
It feels like I’m being pulled in a million
directions. I don’t see my friends, I don’t
see my grandchildren as much, and mychildren don’t want to hear my ‘laundrylist’ of reasons why I’m not available forthem.”—Diana R.

your own life, then back off. Do less.
If your siblings aren’t helping, talk tothem about how they might help and/or arrange to be compensated for yourwork (see page 66). If you simply needa thank-you and some validation, letthem know.
If you resent your spouse for not
sympathizing or helping out more, talkwith him (or her) about specific ways inwhich he can help and exactly what it

When You’re at the EdgeThe stress of caregiving can drive people
to do things they never imagined possible.
If you find yourself lashing out at your parent,
neglecting him, threatening him, yelling at him,
striking him (even lightly), or exploiting him
financially or otherwise, get away from him
immediately. Call a friend or neighbor totake over. You need help, and you need it
now. Contact the area agency on aging(eldercare.gov or 800-677-1116) for supportand respite services.

adapting to new roles
is you need from him. (You might alsoneed to lower your expectations.)
Don’t expect others to simply knowthat they should help out or thank youor do something different. Let themknow (calmly, of course).
Beware the pity pit. Don’t be amartyr. It seems unthinkable, but it’seasy to fall into a pit of self-pity andbecome so comfortable in that pit thatyou start to wallow in it. From this vantage point, the world is cleanly divided
into black and white. I’m good; they
are bad.
Of course, this will only hurt you in
the long run.
Write. If you have trouble thinking

clearly about this, write about it. Don’t
worry about grammar or style, just ventall over the page. Writing can help blow
off a little steam without burning anyone
in the process. It can also, with time,clarify some issues and, as a result, leadto solutions.
Forgive yourself. If you

snap at your parent, argue withyour spouse, or devour a boxof doughnuts, let it go. You’ve
got a lot on your plate (besides
doughnuts). It’s natural andnormal. Move on.

DisgustThis emotion might not be
discussed openly, but mostcaregivers know about it, and it
is no small matter.
Obviously, changing adiaper or cleaning up an “accident” will rattle anyone’s nerves.
Incontinence is one of thecaring for the caregiver“

My mother has always been mybest friend, and after my father
died, we only became closer. She has
always been there for me, always understood me. When she is gone, no one will
do that for me. The idea of losing her is
too painful for me to bear.
Sometimes after I hang up the phonewhen she sounds down or weak, I feel
helpless and sad. I cry so hard that I
can’t breathe. I guess I’m lucky to have amother who I love this deeply, but sometimes I think that if I didn’t, it wouldn’thurt so much.”—Carol P.
biggest reasons people get outside help
or move a parent.
But more mundane things—a parent’s eating habits, bodily noises, orodors—can also repulse. Even if you
love your parent dearly, the scents andsounds that come with aging can bringon powerful waves of disgust. Your reactions will be compounded by your stressand exhaustion. Your reserve tank is on
empty.
The fact is, some of this you simply
have to get over. Your mother can’tchange the fact that she has difficultychewing, and making her feel bad about
it will only, well, make her feel bad about
it. Try to understand that this is a byproduct of age, illness, and medications.
Some things can be improved withcologne (for her, not you), air freshener,
mouthwash, and a box of tissues. Also,check out any relevant sections in thisbook for ways to improve the situation.
Your best defense is a good senseof humor. Talking with others (friends,
a support group, an online chat room)51

might also strengthen your resolve and,at least for a moment, help you laughabout it.
When you simply can’t take it, gethelp. Maybe someone can come in themorning and help her with toileting andhygiene. Or maybe she can go to adultday care several days a week.
Get help, because although some discomfort is normal, disgust can lead topoor care and harsh words.

Grief

Parentcare is, at its core, about loss andgrief. But it’s not the normal sort of grief.
It is a perverse grief, a good-bye that
can’t yet be said, although it hangs darkly
overhead.
When a parent grows frail or forgetful, the losses come in small, unexpected
doses—a fall, a missed name, a fenderbender, a shaky hand, another nap. The
loss drags on, always with us, weighing on us, and yet difficult to define orresolve.
And so, tears come in strange spurts.
Grief explodes in anger and confusion.
It’s not clear what it is, this chronic, simmering grief, and it can be agonizing andunbearably lonely.
Whatever else is happening, whateversort of relationship you have with yourparent, try to acknowledge your grief.
You might be grieving the impending
loss of a parent you adore or grieving a
relationship you never had. You might bemourning the loss of your childhood or
feeling sad about your own aging process.
It’s a complex mix, but whatever thecause of grief, it’s important to recognize
and allow it.
All of us grieve in our own way, at ourown pace. The sadness can be constant,adapting to new roles

52

be alert to DEPRESSIONT

ake care of yourself, get some exercise,see friends, set realistic goals, andmake time for things you enjoy—ideally,
before you’re in trouble. Be alert to signsof depression:• feelings of sadness, hopelessness,
worthlessness, or anxiety• fatigue, exhaustion• changes in eating or sleeping habits• loss of interest in activities you onceenjoyed• social isolation (not calling or seeing
people who used to be in your life)• difficulty concentrating• irritability

or it may crash over you in waves at
odd times. Or it might show itself inother ways—anger, bitterness, anddepression.
Allow yourself time to grieve. Have• bouts of tears• vague physical symptoms(stomachaches, headaches, generalpain)• thoughts of death
Depression can be treated effectively
with counseling and/or medication. Call
your doctor, or for immediate help, callthe local crisis intervention, suicide, or
depression hotline, or 911.
For information about depression,
online support, or a referral to a local
specialist, contact the International
Foundation for Research and Education
on Depression (ifred.org) or Mental Health
America (mentalhealthamerica.net or
800-969-6642).

a good cry. Spend time alone, or shareyour thoughts with others.
If you love your parent and will missher, don’t allow this opportunity to let
her know go by.

12 More Steps to a Healthy Mind-Set

H

ere are some additional ways totake care of yourself:

1. TAKE FIVE

If you are caring for your parent on aregular basis, especially if you are livingwith her, remove yourself completelyfrom the situation once in a while. You
need to refuel, and you can’t do it without some distance. Get some respite
before you are too distraught to plan or
enjoy such a break.

caring for the caregiver
You might take a vacation or you
might simply take an afternoon off to
sit in the park, see a friend, or have apedicure. Set aside time in your regularschedule a few times a week to do as you
please. If necessary, make arrangements
for fill-in help or get your parent into a
respite program.
Then, while you are away, be completely away. Think about something else.
Talk about anything else. Clear your head.
2. A FRIEND, INDEED

When you are caring for an aging
parent, quite often the first thing that
goes is your social life. Invitations areturned down and friendships are put on
hold because you simply do not have thetime or the energy for them. If you areliving with your parent, social isolation
can become a serious problem.
Friends are more important now
than ever. They can provide a sympathetic ear, make you laugh, get you
thinking about other things, and remind
you that you are not alone.
Studies show that caregivers who
have social supports experience lessdepression and illness and are less overwhelmed by their responsibilities thanthose who don’t.
Rather than cutting yourself off,reach out to your friends. Find a way.
Make it a priority. Go out for lunch, go
for a walk, or make a phone date. Just
as you would be there for them, yourfriends want to be there for you.
3. GET SUPPORTYou might think that you are not thetype to join a support group, that you
wouldn’t want to share with strangers, but try it. You can get practical tips,

53

but mostly you’ll see that others face
the same difficult issues and turbulent
feelings, and this in itself can be an enormous relief.
Support groups—whether in personor online—offer a safe arena in which
to air intimate problems, vent anger, ortalk about painful emotions. Because you
face similar situations, you can understand each other in a way that others,
even best friends, cannot.
Support groups vary widely in termsof purpose and membership, and you
may need to try two or three before finding one that meets your needs. Somegroups are designed for anyone caring
for a sick parent, whereas others zero inon specific issues—family relationships,
Alzheimer’s, cancer, grief, or advocacy.
Some are set up so people can sharepractical information and resources,and others function purely as emotional
outlets. Some have leaders, others are
unstructured. Although support groups
are usually for the caregiver, someencourage parents to attend as well.
More and more venues for support and sharing are offered online,“

Sometimes in the evening I reacha point when I think, ‘I’d just rather
not go out tonight.’ But I always comehome from the support group feeling
better. Because everyone in the group isdealing with someone with dementia, it
helps me see that what my mom is doingis perfectly normal for this disease. I also
see that what I’m feeling isn’t cruel or
selfish or crazy. Even if I never see thesepeople again when this is over, I’ll neverforget them.”—Barbara F.

54“

The last time I went to my support
group, a woman was talking about
her father, who has dementia. She wastaking care of him 24 hours a day, and she
was so warm and had such a nice senseof humor about it all that I thought, ‘This
woman is a saint.’ It made me feel terrible.
Eventually I had to come to grips with
it. That is her life; this is mine. I do thebest I can.”—Linda K.

which isn’t as intimate but is a whole
lot easier—available when you want it
and completely anonymous. However,be aware of advice given online; keep inmind the source.
To find local a support group, contact your area agency on aging (eldercare.gov or 800-677-1116). Caregiver Action

adapting to new roles
Network (caregiveraction.com) has an
online forum.
Most nursing homes, adult day-care
centers, senior centers, and mental healthclinics should also be able to refer you
to nearby groups. If you are interested
in a specific topic, contact the appropriate association, many of which either run
support groups themselves or can refer
you to one (for example, the Alzheimer’s
Association, the American Cancer
Society, or Alcoholics Anonymous).
4. AVOID THE COULDASHOULDA-WOULDA’S

Also known as the If-Only or the MoreBetter-Different Syndrome, this is adangerous mind-set. I could have been
better about that . . . I should do more . . . If
only life were different. . . .
Wishing for things that can’t be,
regretting what is, or daydreaming about

MAINTAINING A SOCIAL LIFEI

f you and your parent live together, or
simply spend a lot of time together, you
can still have a social life. You just haveto be a little more creative, flexible, anddetermined.
If your parent wants to be included ina social event (and you want her to be
included), have the guests come to yourhouse rather than going out. Home is amore familiar and comfortable setting foryour parent. It also means she can leave
the room when she needs to rest, without
breaking up the party.
Of course you might not want the extra
work of cooking for a crowd, and there’s

no reason for you to try to be Martha
Stewart. Have a potluck supper or justorder a pizza. People want to be together;what’s served is really secondary. (Friends
can help cook and clean up, too.)
If your parent would rather not go out,
or if you would rather not include her,
don’t stay home just because it’s easier.
Go out. Get a sibling or companion tostay with her. Even though it may seem
like an extravagance, make yourself do
it. It’s a worthwhile investment in yourwell-being.
See page 486 for tips on socializing
when your parent has dementia.

caring for the caregiver
what might have been is futile
and potentially destructive if it
keeps you from more productive tasks. It’s human nature tothink this way, but try to focus
on what is and what can be.
5. SHIFT GEARS

Whenever you are feeling TypeA, think Type B. Researchers
have actually timed people who
run through red lights and blast
their horns at pedestrians, andhave found that these racers
don’t save themselves any timeat all. In fact, hurrying often
slows things down because in
the rush you are apt to spill
food or misplace your car keys.
It seems contradictory, but sometimes when life is hectic, it helps to slow
down. Stay calm. Breathe. Unhunch
your shoulders.
If you are driving somewhere, and it
takes 20 minutes to get there, don’t try
to make it in 19. Leave extra time andthen relax. Use that time to listen to yourfavorite music or book. Or simply relishthe silence. Stay in the slow lane, wait
until the light turns green, and leave thehonking to the geese.

55

HEALTHY BODY,HEALTHY MIND

T

he mind-body connection works in two
directions. You can boost your physicalhealth with a positive outlook, and you can
improve your outlook by tending to yourphysical health.
Now, when your energy and optimism aretaking a beating, it is more important than everthat you eat well, exercise, and get plenty ofrest. Yes, you’ve heard it all before, but giveit a real try. Make a concerted effort to takecare of your body, and see if you don’t notice a
difference in your energy and mood.

brownies, and an endless stream of caffeine might seem, in the moment, likethe only option (and you do deserve a
reward), but rethink this approach.
Eating well will make a huge difference to your health, energy, and spirits.
Furthermore, taking even half an hour tosit down with your family and have a real
meal, rather than everyone eating out of abox on the fly, will have a surprising effecton everyone’s day and relationships.
7. A LITTLE SWEAT

6. EATING WELL

When a parent needs care, any thoughtof a decent diet vanishes. Stressed andoverwrought, people either fail to eat orfind that a bag of Doritos is a just reward
for a taxing day.
And of course, racing from a doctor’s
appointment to a work meeting to thebank leaves little time for fresh food. It’s
6:30 and people are hungry. What’s fast?
Take-out food, chocolate fudge

There is nothing like a workout to shedpent-up emotions, clear a muddled head,and revive a tired body. Exercise protects
people from the harmful effects of stress,
elevates mood, lowers anxiety, and promotes self-esteem.
Make it doable. Weight training andrigorous workouts are great, but if you
hate that sort of thing, find somethingelse. It’s better to walk one mile fiveadapting to new roles

56

times a week and stick to it than to run
three miles daily and give up after aweek. An exercise regimen should last atleast 20 minutes and be varied.
Make it social. Find an exercise part-ner. You will be less apt to excuse yourself
from the routine, and you get to socialize
while you sweat.

“

Make it useful. If you simply don’t

have time for the gym, rake the yard,
sweep the floor, or walk to work. Readthe newspaper on a stationary bike ortalk to a coworker while you walk.
Make it fun. Exercise doesn’t have to beboring. Play tennis, swim, skate, or dance.
Make it challenging. Every now andthen, push yourself. Challenging yourself physically seems to have a beneficial
effect on stress and resiliency.
8. Zzzzzs

In studies of laboratory rats, scientists
have found that severe sleep deprivation is always fatal. It is more harmful
than starvation. For humans, life without sleep certainly feels deadly, causing
irritability, poor concentration, lack of
coordination, and forgetfulness. Make
sleep a priority.

Regular Checkups

A

re you urging your parent to see a
doctor but neglecting your own health?
Stop postponing that physical checkup,
mammogram, or dentist appointment. Your
parent might provide a handy excuse for you tocancel (or fail to make) appointments, but don’t.

During my father’s illness I got
very depressed and closed in. I
realized that I needed some outlet, a wayof dealing with the constant anxiety. So I
started drawing.
I hadn’t done any sketches for years,
but I bought a pad and pencils and dug
in. I find I can express my rage and fearin drawings better than I can with words.
I sketch each night. It’s my sanity. I’ve
actually gotten pretty good at it.”—Eleanor R.
If you are having trouble sleeping,
see the tips about dealing with insomnia on page 216.
9. PURSUE YOUR HOBBY

Hobbies, sports, crafts, and other such
pursuits are not frivolous pastimes. They
help clear your mind of your worries—
perhaps just for a brief interlude—whichallows you to regain some balance andenergy.
If your parent’s care is a prolonged
commitment, don’t forgo your pottery,gardening, painting, tennis, knitting,or javelin throwing—whatever it is thatcalms you.
Make it a point to find time
for it. Take pleasure in it.
10. SPIRITUAL SUPPORT

Whether you are religious ornot, spiritual issues often arise
when a parent is sick. How do
I ease my anguish or grief? How
do I face my own mortality? Why
would a loving God do this?
A little prayer canstrengthen your will and focus
your life. Nearly 75 percent ofcaring for the caregivercaregivers say they use prayer asa way of coping.
If going to religious services doesn’t interest you, or
if you simply want a more personal discussion, most clergy
are happy to meet with people
individually. Just call. (You cansend a donation if you want to
repay the favor.)
Devotee or atheist, sometimes it helps to simply sit
quietly in a peaceful place,listen to your soul, and remember your priorities.
11. RELAX

You don’t know how muchstress you are carrying around
until you sit in a relaxation or
meditation class and let go of it. The
techniques you learn there can be usedanywhere, anytime, to ease the pressure. Classes in tai chi, meditation, andyoga, as well as in general relaxation, allrelieve stress.
In fact, you can permanently change
your response to stress and become acalmer, more relaxed person. So this is
an opportunity not only for immediate
relief, but also for personal growth.
12. LOVE TO LAUGH

Laughter is a forgotten healer. It makes
the world sane (or at least it makes theinsanity more fun), and the body healthier. A good dose of humor bolsters thespirit, and hysterical laughter strengthens the immune system, improves
circulation, and relieves stress.
Of course, howling with laughter
when someone you love is ill or dying
can feel like a sacrilege. You might think

57

Avoiding PitfallsA

cup of coffee each morning can graduallyturn into three. A glass of wine with dinner
can become a scotch before dinner and half abottle of wine during the meal. An occasional
sleeping pill becomes monthly prescriptions.
And food? Well, there’s nothing like a pint of
ice cream to soothe a frazzled soul.
But in the long run, these things will only
sap your energy and make you feel worse.
When drink, pills, or food call your name,pause, then find another way to cope withexhaustion and stress. Before embracing Sara
Lee or Jack Daniels, do a few stretches, call afriend, grab some knitting, take a walk.

that you have to be solemn to reflect theseriousness of the situation and to showrespect for your parent. But you don’t.
You really don’t. It’s okay to laugh, nomatter how sick or incompetent yourparent may be.
Find something funny about the situation. (Dentures are funny, especially“My mother had a mastectomy, andsometimes forgets to put her prosthesis in. She’ll come downstairs with her
shirt all askew and sagging, and after
standing there for a minute or two, she’ll
say, ‘Something is not right.’
I look at her and have to laugh. ‘Mom,’ I
say, ‘you forgot your boob.’ And we’ll both
giggle. She thinks it’s funny, too. It could
happen to anyone. If we didn’t laugh, wewould cry. It’s that sort of thing.”—Greg C.

adapting to new roles

58

when your parent isn’t wearing them.
Certain sourpuss nurses are funny.
The Jell-O served in hospitals is funny.
Sagging, loose skin under the arm ismildly amusing when it’s not your own.)
See a slapstick movie, visit a goofy friend,scan the comics, play a joke on someone,

clown around with your siblings.
Whenever you feel that you just
can’t take it anymore (and ideally long
before that point), find some way tolaugh—a long, side-splitting, teary,
wet-your-pants kind of laugh. It’s good
medicine.

The Male CaregiverEldercare has traditionally been theprovince of women—leaving themto care not only for their own parents,
but their husbands’ parents as well—and they are still bearing the brunt of
this job. However, men are becoming
increasingly involved. Studies suggest that between 30 and 40 percent ofcaregivers are men (up from about 20
percent in 1996).
Although generalizations fail in somany ways (if you’ve seen one caregiver, you’ve seen one caregiver), there
are some differences in how men andwomen typically approach this task.
Both have strengths and weaknesses;
the sexes might just learn a thing or two
from each other.
Men are more apt to help with“hands-off” care, such as finances, legal
matters, transportation, home maintenance, and hiring. Women, on the other
hand, are more apt to handle the “handson” care, like dressing, bathing, feeding,
toileting, and just plain being present.
Because most men grew up in anenvironment where women played therole of primary caregiver, they tend to
be a little slow to get involved and, once
there, question their competence as
caregivers. They often feel helpless anduncertain. They don’t know what to door how to begin. Personal tasks are particularly awkward, especially when it’stime to give Mom a bath.
Men are often reluctant to let others
know that they are caring for a parent.
They are particularly silent at work,
fearful that revealing the situation will
hurt their careers.
They are also less willing to get
emotional support when they feel overwhelmed. They don’t talk with theirfriends about the stresses of parentcare or join support groups as readily as
women do. Likewise, they are less likely
to talk with a doctor or other professional about depression or anxiety, or
to take medication for it. Instead, theyturn to alcohol (bad), work longer hours(bad), or release their stress on a playing
field (good).
However, there are aspects of parentcare that men do better than their femalecaring for the caregiver

59

WHEN ONE PARENT IS WELLW

hen one parent is ill and the otheris still able, everyone’s attention
naturally turns to the patient, but don’t
ignore your healthier parent—the caregiver.
Your job is to help her so that she can doher job well.
Remember, her life has taken adramatic turn. She has taken on enormous
responsibilities. She stands to lose hermate and has already lost vital aspects of
their relationship together.
You might not be able to extricate
her completely, but you can lighten theload, be sure she gets a break, and offer
emotional support.
Talk about the situation. Make a listof what jobs need to be done, which
ones your parent feels that only she cando, and which ones others in the family
or outsiders can do. Listen to her fears
and needs, and help her understand theimportance of taking care of herself andthe ramifications if she were to become ill.
You might have to inch your way into

this, taking over one small task and thenanother, or nudging her gradually toward
community services and in-home help.
Offer to take care of your father for certain
shifts or to take over peripheral duties,
such as home maintenance and billpaying.
Respect her desire to care for her
spouse, but also be sure she gets awayfrom the job occasionally.
Monitor her health, because she may
be neglecting it now. Get her to eat
well, sleep (which might mean moving toanother bedroom), exercise, and see thedoctor when necessary.
Helping your parent now will not only
allow her to give her best to her spouse,but should also head off disaster. You do
not want to find yourself with two ailingparents instead of one.
The Well Spouse Foundation (800838-0879 or wellspouse.org) can help.
It hooks members up with online and local
support groups, and issues a newsletter.

counterparts. Women tend to get more
emotionally overwrought, while men(yes, a huge generalization) tend to be
more task oriented. They want to fix a
problem and check it off the list. Whatis going on here? What do I need to do tosolve it?
Although both sons and daughterssuffer silently and wait way too longto get help, sons seem to be better atusing community services, hiring outsiders, and delegating responsibilities.
Daughters often feel they should do it
all themselves.

Obviously, women should try to foresee problems, delegate, plan, make achecklist, and get help with daily tasks(and they might even benefit from agood game of hoops now and then),and men need to learn to talk and findemotional support when the going getstough.
Some support groups are tailoredjust for men, and they can be very useful.
If a support group is too touchy-feely,
online support groups provide anonymity and don’t require you to leave thehouse or office.

We Welcome
Your Views
How to Care for Aging Parents has tried to address the wide

range of concerns and questions that caregivers face in as much detail as possible.
But there is always room for improvement. Please let us know your thoughtson the book—advice that was helpful, questions that weren’t addressed, facts wemight have missed—so that we can make adjustments and include your viewsin any future editions. You can reach us at careforagingparents.com. We lookforward to hearing from you.

c
Virginia Morris is an award-winning author and journalist and anationally recognized authority on eldercare. She testified before the Joint
Economic Committee of the U.S. Congress. She has also appeared on Oprah,
The Today Show, Good Morning America, The CBS Morning Show, Primetime, ABC
World News with Diane Sawyer, NPR’s The Diane Rehm Show, Katie, and a host ofother national media. Her previous book is Talking About Death. Morris lives in
Sag Harbor, NY, with her family.
She is available for speaking engagements, media appearances, and consulting.
She regularly gives keynote addresses and joins panel discussions addressing theneeds of family caregivers, professionals, businesses, and employees. For more
information, visit careforagingparents.com.

Help for Every
Difficult Issuec“A work of great value, written with sensitivity and wisdom.
. . . It fulfills an obvious need much better than anything
I’ve seen.”—Sherwin B. Nuland, M.D.
We hope you enjoyed this custom preview from the book,
How to Care for Aging Parents. To buy the full book, click here.

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Foreword by Jennie Chin Hansen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi
Introduction: Something Unexpected . . . . . . . . . . . . . . . . . . . . . . . . . . xiii

1

First Things First . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Ten Survival Tips • Critical Conversations • Gathering Vital Documents• Exploring the Options • Getting Organized • When You Can’t Be There

Adapting to New Roles

2Your Parent and You . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
A Changing Relationship • When They Won’t Listen • Defusing Old Struggles• Coping Day to Day • Exceptionally Difficult Parents

3

Caring for the Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . .41
Setting Limits • Emotional Minefields • 12 More Steps to a Healthy Mind-Set• The Male Caregiver

4

The Inner Circle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60
Working with Siblings • Compensating the Caregiver • A Family Meeting• Significant Others • Time for Kids • Multilayer Sandwiches • Careers and Caregiving

The Golden Years

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A Healthier Body . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82
In the Gym • The ABCs of Diet • The Liquor Cabinet • Up in Smoke

6

A Happier Soul . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
The Quest • Family and Friends • Spiritual Fulfillment • Reminiscing •Volunteering and Working • Involved and Active • Dating, Sex, and Marriage

Life at Home

7

Tips for Daily Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
Safety First • Monitors and Alert Systems • Preventing Falls • Room-by-Room
Modifications • Bathing and Grooming • Dressing • What’s for Dinner? •In the Driver’s Seat • Gadgets and Gizmos

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Getting Help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147
Assessing the Need • Family and Friends • Community Services• Geriatric Care Managers

9

Paid Help at Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159
In-Home Care • The Hiring Process • From Day One • Managing the Troops• When There Is Trouble • Respite Care

The Halls of Medicine

10 Rx for the Elderly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180
The Age Difference • Finding a Doctor • A Wellness Visit • A Geriatric
Assessment • A Personal Health Record • An Informed Advocate •Complementary and Alternative Medicine

11 The Body Imperfect: Part I . . . . . . . . . . . . . . . . . . . . . . . 196
A Muddle of Medications • Vision • Hearing • Sleep • Temperature Regulation• Dehydration • Skin Care • Arms, Legs, and Feet • Teeth and Mouth

12 The Body Imperfect: Part II . . . . . . . . . . . . . . . . . . . . . 233
Bones and Joints • Incontinence • Constipation • Other Digestive Disorders •Anemia • Diabetes

13 Matters of the Mind. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 259
Depression • Delirium • Anxiety Disorders • Delusions and Hallucinations• Hypochondria

14 In the Hospital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 274
Avoiding It • Choosing a Hospital • Admission • Following His Wishes •Tests, Surgery, and Treatments • At the Nurses’ Station • Providing Comfort• When You Are Far Away • Hospital Dangers • Resolving Disputes •Preparing for Discharge • Bills, Bills, Bills

Handling the Paperwork

15 Paying the Way . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 302
Talking About Money • First Steps • Dipping into Your Own Funds •Financial Planning • Benefits and Discounts • Getting Cash Out of a Home• Tax Tips • Professional Help

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16 Avoiding Fraud . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 325 OK
Who’s at Risk? • Common Scams and Scoundrels • Preventing Exploitation• Signs of Trouble • What to Do

17 Paying for Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 337
Medicare • Medicaid • Long-Term Care

18 Legal Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359
Where There’s a Will . . . • Power of Attorney • Advance Directives • Trusts• Reducing Estate Taxes • Probate • A Question of Competence • Legal Help

Home Away from Home

19 Moving Out, Moving In . . . . . . . . . . . . . . . . . . . . . . . . . . . 384
Launching the Discussion • Is It Time to Move? • Should Mom Move Closer?
• Should Dad Move In? • Under One Roof • Separate Quarters

20 An Array of Housing Options . . . . . . . . . . . . . . . . . . . . 401
Roommates and Shared Housing • Congregate Housing • Retirement
Communities • Senior Apartments • Foster Homes • Assisted Living • Continuing
Care Retirement Communities

21 A Good Nursing Home . . . . . . . . . . . . . . . . . . . . . . . . . . . 415
The Decision • Starting the Hunt • What to Look For in Any Facility •Getting In • Admission • Who Pays?

22 Making the Move Work . . . . . . . . . . . . . . . . . . . . . . . . . . . 434
Moving Day • A Plan of Care • Visiting • Being an Advocate • Long-Distance
Caregiving • When Trouble Brews • Is This Move Working?

When They Forget

23 The Aging Brain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 454
What Is Normal? • Mild Cognitive Impairment • Dementia • Getting Tested •Alzheimer’s Disease • Vascular Dementia • Lewy Body Dementia • Dealing with
the Diagnosis • Treating Dementia

24 Living with Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 477
Helping Your Parent • Helping Yourself

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25 Managing Day to Day . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 493
Hygiene and Dressing • Incontinence • Eating • Communication • A Senseof Time • Other Challenges • Problem Behaviors • Psychotic Symptoms •Late-Stage Dementia

The Last Good-bye

26 Nearing the End . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 524
Well in Advance • Making Decisions • Your Parent’s Perspective •Communicating • Caring for Your Parent Now • Taking Care of Yourself• Care at Home • Hospice Care • In the Hospital • What Death Looks Like
• The Moment After

27 The Aftermath . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 552
A Funeral Director • The Obituary • Planning a Funeral • Taking Care of Business• Dividing Possessions

28 Good Grief . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 567
Facets of Grief • Caregiver Grief • Growing from Grief • The Surviving Parent• Children and Grief

A Final Note

29 You’re Next . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 584
Talk About It • Paying for Old Age • A Question of Where • Your Body •Your Mind • Your Life

Resources
Useful Organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 607
Caregiver’s Organizer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 635
Index. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 654

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