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**2008 National Family Caregivers Month**

**Innovative Strategies for Implementing the National Family Caregiver
Support Program:**

In the two years since the 2006 Reauthorization of the Older Americans
Act (OAA), much has been accomplished by the Aging Services Network to
strengthen and improve information about and access to the services and
supports available to older individual of their family caregivers. The
National Family Caregivers Association's theme for National Family
Caregivers Month 2008 is "Speak Up!" reflecting the fact that caregivers
speak up daily on behalf of those for whom they care. In turn, the Aging
Services Network speaks up for and assists caregivers in their
day-to-day task of caring for those they love.

**Introduction**

Informal caregiving is the foundation of America's long term care
system. Each day, in every state and community, family caregivers along
with friends and neighbors provide extraordinary levels of assistance to
persons with chronic illnesses and disabilities of all ages. Recent
estimates place the economic value of family caregiving at \$350 billion
per year, a figure that exceeded the total amounts spent by either
Medicare or Medicaid in 2005. A 2004 MetLife survey estimated that
nearly 21% of households in the United States were impacted by
caregiving responsibilities.

While many caregivers derive great satisfaction from their efforts,
significant numbers experience considerable physical and emotional
costs. The stress caregivers experience on a daily basis puts them at
risk for depression and anxiety as well as a host of other chronic
health conditions. Ensuring the well-being of caregivers is essential to
enabling them to maintain the health and independence of those for whom
they []{#care .anchor}care.

[Click here](#Thirty) to read a story written by Sr. Marie Clark, IHM
who was Assistant Secretary for Aging Josefina Carbonell's high school
teacher and principal in Miami. It vividly describes the painful yet
poignant journey her family endured caring for their mother.

**Older Americans Act**

The 2006 Amendments to the Older Americans Act (OAA) included key
elements designed to modernize how the aging network delivers services,
including those provided to family caregivers. Specifically, the OAA
lays out a three-pronged approach for advancing systems change at the
state and community levels:

-   empowerment consumer through the establishment of Aging and
    Disability Resource Centers (ADRCs);

-   fostering healthier lifestyles through the incorporation of
    evidence-based disease and disability prevention programs; and

-   helping consumers avoid spend down to Medicaid through the provision
    of low cost service options.

Within the OAA, the National Family Caregiver Support Program (NFCSP)
affords the Aging Services Network the opportunity to focus specifically
on the caregiver. By providing a multifaceted system of services,
including information to caregivers about available services; assistance
to caregivers in gaining access to services; individual counseling,
organization of support groups and caregiver training; respite care; and
supplemental services on a limited basis. Studies have shown these
services can reduce caregiver depression, anxiety and stress and enable
them to provide care longer, thereby avoiding or delaying the need for
costly institutional care.

The NFCSP works in conjunction with other state and community-based
services to provide family caregivers coordinated supports that respond
to the unique service environments in which they operate and to the
specific needs of older individual and the caregivers who care for them.
These programs attest to the commitment of the Aging Services Network to
support the tremendous work of caregivers in ways that respond to their
individual needs and preferences.

Following are examples of the many ways in which the Aging Services
Network is employing innovative strategies to improve access to
caregiver services, including reaching employed, grandparent and
kinship, and rural caregivers, and engaging the faith based community.
Additionally, caregiver programs are incorporating evidence based
approaches for enhanced service delivery and building on nursing home
diversion initiatives to better serve caregivers. These approaches are
highlighted along with recent legislative and policy trends impacting
caregiver services.

**Innovative Strategies for Improving Access to Caregiver Services**

The **[Arizona](https://www.azdes.gov/aaa/programs/care/default.asp)**
ADRC, [AZ
Links](https://egov.azdes.gov/CMSInternet/main.aspx?menu=8&id=46), has
recently reorganized its website, placing an emphasis on the Caregiver
resources section, and including Caregiver FAQs. The Division of Aging
and Adult Services' (DAAS) website and the Arizona Caregiver Coalition
website both link to the AZ Links website. As Arizona continues to
modernize its existing Division of Aging and Adult Services website, it
will cross-reference all existing DAAS programs with ADRC web pages,
providing a full-circle of information and resources for both Family and
Professional caregivers.

[**Kentucky**](http://chfs.ky.gov/dail/Programs.htm) is working to
expand the *Kentucky Resource Market* (Aging and Disability Resource
Center) data base to include information and referral across
disabilities including, but not limited to, mental illness, brain
injury, mental retardation and physical disabilities at each of the 15
ADRC sites. Kentucky continues to seek additional funding sources to
expand the sites to ensure they are a reliable community resource. The
state is also developing comprehensive training on regional and
statewide resources for all populations. Partners, including the
Cooperative Extension offices, universities, community and technical
colleges, and the Alzheimer's Associations work closely with Kentucky to
develop caregiver trainings, curriculums, and Grandparents as Parents
support group starter tool kits.

[**Minnesota**](http://www.mnaging.org/advocate/caregiver.htm) has a
statewide network of 50 caregiver coaches/consultants who provide
customized person-centered support to family caregivers of older adults.
A trained professional (e.g., social worker, nurse) equips the caregiver
with knowledge, skills and tools to perform their caregiving role.
Caregiver coaches are co-located at many ADRC access sites in Minnesota
ensuring that as caregivers enter the system, a caregiver coach is
available to work with them on a one-to-one basis. Title III-E caregiver
coach service standards, core competencies, a state owned curriculum and
follow up intensives have been developed.

**[New
York](http://www.aging.ny.gov/Caregiving/Index.cfm)['s]{.underline}**
version of a Single Entry Point known as *NY Connects* is a statewide
program created in 2006 to provide consumers, caregivers, and health
care professionals with easy access to long term care information. *NY
Connects* has proven to be a resource for caregivers. Preliminary data
from October 1, 2007 to March 31, 2008 indicates that almost 30 percent
of contacts to *NY Connects* (27 percent) were from caregivers. This
number is only expected to increase as counties continue to develop
their public education campaigns and promote their *NY Connects*
services.

For more than one year, a work group in
[**Oklahoma**](http://www.okdhs.org/camp/apscare.htm) has been meeting
to focus on implementing initiatives inspired by the recent creation of
ADRCs in other states. Several members of that group represent
Oklahoma's caregiver initiative. Once operational, caregivers will be a
key group targeted by the ADRC.

[**Virginia**](http://www.vda.virginia.gov/index.asp) has developed the
nationally recognized volunteer Virginia Caregiver Coalition. Under the
auspices of the Virginia Department for the Aging, the coalition has a
mailing list for rapid distribution of information to professional and
family caregivers. The use of video-conferencing for bi-monthly
coalition meetings connects professional and family caregivers
throughout the Commonwealth for discussions as well as training on a
variety of caregiving issues.

*Reaching Employed Caregivers*

The Riverside County Office on Aging in
[**California**](http://www.aging.ca.gov/programs/default.asp) is
spearheading a campaign to focus employer attention on elder care issues
that employees may face. The AAA Advisory Council's Caregiver Standing
Committee has worked with staff to convene the "Visions of a Changing
Workforce" forum and develop a Blue Ribbon Caregiver Report educating
employers as to the issues, impact, and cost associated with a workforce
with caregiving responsibilities. Local volunteer Initiative Ambassadors
and staff collaborate in providing "Lunch and Learn" workplace sessions
and benefit/information fairs. The AAA feels this Family Caregiver
Support Program-funded initiative can address both employee absenteeism
and care-related stress by helping the employer identity resources and
solutions to support the working family caregiver.

The
[**Massachusetts**](http://www.mass.gov/?pageID=eldersterminal&L=2&L0=Home&L1=Caregiver+Support&sid=Eelders&b=terminalcontent&f=csp_overview&csid=Eelders)
Office of Elder Affairs' Massachusetts Family Caregiver Support Program
(MFCSP) has developed a lunch time information session for working
caregivers and offers this to state agencies and private employers. The
MFCSP is using the state's employee newsletter to promote its services
to working caregivers in addition to local outreach efforts including
Chambers of Commerce.

Through its Title III-E NFCSP funding,
[**Minnesota**](http://www.mnaging.org/advocate/caregiver.htm) developed
*Beyond the Workday: Finding Balance for the Working Caregiver*,
a resource guide for employers to raise awareness of the needs of
working caregivers, available resources and sample plans for
creating a \"caregiver friendly\" workplace.  Area agencies on aging and
providers are working one-on-one with local employers (small to medium
size) to implement innovative strategies for supporting working
caregivers.

In New Bern, [**North
Carolina**](http://www.fullcirclecare.org/caregiverissues/welcome.html),
the Chamber of Commerce holds an annual event known as *The Retiree Job
Exchange*. The Area Agency on Aging has served on the planning committee
for this event for the last three years. This year, the event was
followed by a seminar for Chamber members about caregivers in the
workplace. Statistics on the prevalence of working caregivers were
provided along with resources and information for minimizing absenteeism
and other adverse effects of caregiving on employment. Following the
seminar, a number of the employers delivered information to their
employees through human resources or by way of direct presentation.

*Targeting Grandparent & Kinship Caregivers*

[**Idaho**](http://www.idahoaging.com/programs/ps_caregiver.htm), with
funding from the Brookdale Foundation, is implementing a new project in
ten southwestern counties to address the needs of grandparents and other
relatives raising children.  Idaho's Area III Agency on Aging has
partnered with a local provider, CCOA---Aging, Weatherization and Human
Services to develop a Grandfamilies program that has provided support
groups and information and assistance for several years. Grandfamilies
in more remote areas of the ten county region will now have access to
services through the CCOA Mobile Kincare Unit, a 24-foot motor home
equipped with staff and resources, making scheduled stops throughout the
year. 

The [**New York State**](http://www.aging.ny.gov/Caregiving/Index.cfm)
Office for the Aging (NYSOFA) collaborates with the NYS Office of
Children and Family Services (OCFS) to educate local AAAs and caregivers
about resources available to kinship caregivers. The Kinship Navigator
([www.nysnavigator.org](http://www.nysnavigator.org/)) is an on-line
statewide resource for information on laws, legal rights and issues on
custody and visitation, eligibility for benefits and entitlement
programs, tax credits, respite care and other local services. Phone
assistance is available through their toll-free number at
1-877-454-6463. In addition to this on-line resource, the NYS OCFS
supports 13 regional programs that provide direct services to
twenty-three counties.

[**Virginia\'s**](http://www.vda.virginia.gov/index.asp) Department for
the aging continues its support of the Kinship Care Initiative Statewide
Task Force and Information Network established in 2000 with a seed grant
from the Brookdale Foundation. An informative resource guide,
Grandparents Caring for Grandchildren, published by the Department,
serves as a resource for kin caregivers and professionals alike. The
Department is working its web developer and 2-1-1 Virginia to have
information of importance to kin caregivers available on those sites.

In [**Washington State**](http://www.aasa.dshs.wa.gov/caregiving/),
kinship caregivers are supported in a variety of ways. Created in 2004,
the Kinship Caregivers Support Program funds services to meet emergent
needs of relatives and children. Under this program, nearly one million
dollars is distributed to area agencies on aging to serve directly, or
through community service providers, relatives not currently involved
with the formal child welfare system. In 2005, the state legislature in
Washington State began funding the Kinship Navigator Program. With an
annual budget of \$632,000, eight of the states thirteen AAAs serve
thirty of the state's thirty-nine counties. Kinship Navigators connect
families with community resources, including health, financial and legal
services and support groups. To help relatives and staff access
information quickly, a statewide web site
([www.dshs.wa.gov/kinshipcare/](http://www.dshs.wa.gov/kinshipcare/))
was developed to help consumers complete paperwork, and learn about
local services and upcoming events.

*Reaching Rural Caregivers*

In [**California**](http://www.aging.ca.gov/programs/default.asp), the
Area 1 Agency on Aging of Del Norte and Humboldt Counties has
established an inter-agency relationship with Blue Ridge Rancheria. This
tribal organization has awarded OAA funds to the local AAA in order to
support the needs of those Title VI Part C eligible caregivers caring
for Native American Elders. A dedicated Resource Specialist provides
access assistance for linking family caregivers with services and
opportunities within the area, along with in-home caregiver assessments
and consultations.

To address the challenges associated with rural isolation, 24/7
caregiving responsibilities, and caregiver frailties to caregiver
support groups,
[**California\'s**](http://www.aging.ca.gov/programs/default.asp)
Redwood Caregiver Resource Center receives Family Caregiver Support
Program funding from the Sonoma County Area Agency on Aging for the use
of teleconference technology to moderate support group discussions with
caregivers otherwise unable to access such support. The Family Caregiver
Alliance State Resource Consultant provides guidance to the FCSP
provider on the unique moderator skills needed to solicit and ensure
full participation, and to sense psychological concerns that are more
readily identifiable during face-to-face interactions.

In
[**Texas**](http://www.dads.state.tx.us/services/agingtexaswell/caregiving/index.html),
the Area Agency on Aging of the Panhandle has partnered with Texas Tech,
the Texas Agri Life Extension, and other organizations to provide
caregiver education and training activities throughout the year,
including a local Alzheimer's Academy for family caregivers.

*Partnering with Faith-Based Organizations*

In [**Idaho**](http://www.idahoaging.com/programs/ps_caregiver.htm),
partnerships with faith-based communities have been a long standing
arrangement.  In recent years, several partnerships have been developed
with new faith-based organizations to develop in-home and adult day
service programs for elders.  The Alzheimer's Disease Demonstration
Grant to States has enabled the Area III Agency on Aging to partner with
three such organizations: Faith in Action of Boise, Idaho; Lutheran
Community Services Northwest, Boise Office; and the CARE Club Adult Day
Services Program at the Cathedral of the Rockies Methodist Church. 
These organizations coordinate to conduct a program for persons with
dementia.  The CARE Club is the setting for Expressive Art Therapy
classes, facilitated by clinical counselors from Lutheran Community
Services, and assisted by Boise State University Service Learning
Students, who have been recruited by Faith in Action.

In [**North
Carolina\'s**](http://www.fullcirclecare.org/caregiverissues/welcome.html)
Region A and Region E AAAs, Family Caregiver Support Programs engaged
the faith-based community to reach out to and support family caregivers
in their congregations and communities. Families confronting
Alzheimer\'s and related memory disorders often turn to their extended
families and church communities for support. Using resources from the
Duke Family Support Program, including the book, \"You Are One of Us\"
by Lisa Gwyther, the FCSP developed and presented a seminar, \"Day by
Day: Attending to the Spiritual Needs of Family Caregivers\" to Clergy,
Lay Leaders, Congregation Members, and all Faith-Based Volunteers.
Follow up with participating churches revealed that the majority of
congregations are making a concerted effort to identify and reach out to
family caregivers so that they know their church family is standing
beside them throughout their ordeal.

**Implementing Evidence Based Approaches to Serve Caregivers**

The [**California**](http://www.aging.ca.gov/programs/default.asp)
Department of Aging, in collaboration with the Alzheimer's Association,
California Southland chapter, has implemented the evidence-based *Savvy
Caregiver* program to Latino caregivers of persons with Alzheimer's
Disease and Related Dementia (ADRD). This program is supported with
grant funds from the Administration on Aging. *Savvy Caregiver* is being
offered to Spanish-speaking Latino caregivers in Southern California in
a translated and transformed Spanish version, *Cuidando Con Respeto*. It
will soon be expanded to serve Spanish-speaking Latino caregivers in
other parts of the State of California as well as English-speaking,
ethnically diverse caregivers throughout California. *Savvy Caregiver*
provides families and other caregivers with basic knowledge, skills, and
attitudes needed to care for a family member with ADRD and to
effectively manage the increasing stress of caregiving.

The **[Georgia](http://aging.dhr.georgia.gov/portal/site/DHR-DAS/)**
Division of Aging Services, in collaboration with the University of
Georgia Cooperative Extension, is launching a statewide initiative to
train class leaders in the Powerful Tools for Caregivers program (PTC),
a six week educational program for family caregivers. Three published
research studies of PTC have found significant reductions in health-risk
behaviors and improvement in self care and psychological well-being for
caregivers. To date, 59 Class Leaders have been trained by Master
Trainers from University of Montana and the University of Wisconsin. 
Future plans include training and additional 60 class leaders in the
state by June 30, 2009, enabling all 12 AAA regions to have Class
Leaders trained.

[**Minnesota**](http://www.mnaging.org/advocate/caregiver.htm) is
replicating the New York University Caregiver Intervention (NYUCI)[^1],
an enhanced caregiver support intervention for spousal caregivers of
persons with AD, through an Alzheimer's Disease Demonstration Grant. The
NYUCI has been shown to divert or delay older adults from nursing
facility placement for an average of 18 months. To date, 41 spousal
caregivers are participating in the intervention. An additional 70
spousal caregivers will be assessed and participate in the Intervention
in the next year and 200 over the next three years.

In
[**Texas**](http://www.dads.state.tx.us/services/agingtexaswell/caregiving/index.html),
the Area Agency on Aging of Central Texas has partnered with Scott &
White Memorial Hospital to establish two innovative programs for
caregivers. The first organizes and connects caregivers with volunteer
support teams who assist them with practical and emotional support. The
second provides the evidence-based Resources for Enhancing Alzheimer's
Caregiver Health (REACH) intervention. This approach assesses the needs
and risk factors of caregivers, matching them with services and supports
to reduce risk and enhance well-being.

In [**Washington State**](http://www.aasa.dshs.wa.gov/caregiving/), the
Dementia Partnerships Project (DPP) has developed responsive
dementia-capable services based on the latest research and
evidence-based practices for integration into the broader system of
family caregiver support. Funded under the Alzheimer's Disease
Demonstration Grants to States program, direct services include dementia
day care services (Memory Care & Wellness Services - MCWS), dementia
family support consultation and family caregiver counseling. Access to
these services is facilitated by local Dementia Partnership Teams made
up of the area agency on aging, FCSP, dementia-specific organizations
and the MCWS provider.

**Nursing Home Diversion Initiatives**

In
[**Connecticut**](http://www.ct.gov/agingservices/cwp/view.asp?a=2513&q=313064),
a pilot consumer-directed cash and counseling option is being developed
in the South Central region of the state with funds from the National
Family Caregiver Support Program and the CT Statewide Respite Care
Program.  This option was developed to help consumers at risk of nursing
home placement but who are not yet eligible for Medicaid to remain in
their own homes.  An assessment tool, training materials, web-based
trainings and evaluation tools have been developed to provide consumers
with the cash and counseling option using grant funding from the
*Choices At Home* Connecticut's Nursing Home Diversion Modernization
Project.  Fiscal Intermediary Services are being used to create
individual budgets, manage payment mechanisms, and provide accounting
services for each consumer who chooses this option.

Through
[**Connecticut\'s**](http://www.ct.gov/agingservices/cwp/view.asp?a=2513&q=313064)
*Choices At Home - Phase II* project, the cash and counseling model will
continue in the state's south central region and expand west.  The Phase
II pilot will include a new Diversion Services option employing the
National Institute on Aging-supported *eNeighbor
Auto-Personal-Emergency-Response-System* thus permitting caregivers to
monitor loved ones in the home.

[**Massachusetts\'**](http://www.mass.gov/?pageID=eldersterminal&L=2&L0=Home&L1=Caregiver+Support&sid=Eelders&b=terminalcontent&f=csp_overview&csid=Eelders)
new Nursing Home Diversion Modernization Grant will increase the
capacity of the ADRCs to offer Long Term Care Options counseling,
including enhanced services for caregivers. The Innovations Grant to
Better Serve People with Alzheimer's Disease and Related Disorders will
foster a stronger relationship between regional ADRCs and the
Massachusetts Chapter of the Alzheimer's Association, improving access
for caregivers to training and emotional support that will enhance their
ability to manage the challenges presented by Alzheimer\'s disease.

**Legislative, Policy and Other Initiatives**

In July, 2008 the
[**Massachusetts**](http://www.mass.gov/?pageID=eldersterminal&L=2&L0=Home&L1=Caregiver+Support&sid=Eelders&b=terminalcontent&f=csp_overview&csid=Eelders)
legislature established a permanent Commission on the Status of
Grandparents Raising Grandchildren in which the MFCSP will have a
leadership role. The Commission will consist of eleven members including
citizen appointments by state agencies and leadership from the
Massachusetts State Legislature. The Commission is a resource to the
state on issues affecting grandparents and has the authority to
recommend policies and make other recommendations.

In 2007, the Governor of [**New
York**](http://www.aging.ny.gov/Caregiving/Index.cfm) designated the New
York State Office for the Aging as the lead state agency to establish
and coordinate the work of the NYS Family Caregiver Council. Council
members come from all regions of the state and from various disciplines
with a majority of them active family caregivers. The Council's goals
are to provide a strong statement of support for family caregivers,
review existing policies and services, propose new and expanded services
and policy implementation, and strengthen local agencies to reach,
address and support caregivers across the lifespan - caregivers of older
New Yorkers and caregivers who devote their time to children and adults
with special needs.

The
[**Texas**](http://www.dads.state.tx.us/services/agingtexaswell/caregiving/index.html)
State Kincare Task Force has created a Power of Attorney for the
Caregiver of a Minor Child to assist kinship caregivers to access
medical, educational, and benefits information and services for their
children. The partners on this taskforce are currently seeking support
to promote its adoption in the next state legislative session.

[**Washington State**](http://www.aasa.dshs.wa.gov/caregiving/),
**Hawaii** and **Kansas** collaborated with the Centers for Disease
Control and the University of Florida to implement a family caregiver
module as part of the 2007 Behavioral Risk Factor Surveillance System
(BRFSS). Washington State's module included eighteen questions revealing
that more than thirty-one percent of the state's estimated 703,874
family caregivers provide care to someone with Alzheimer's disease,
dementia, or memory loss. More than 65,000 kinship caregivers (e.g.,
grandparents and other relatives) are raising and providing a stable
home to keep children out of the foster care system when their parents
are unable to do so.

Other data from **Washington's** BRFSS show that two out of three family
caregivers provide at least twenty hours of care per week. Nearly
sixty-two percent have provided care for more than a year and eighteen
percent for five years or more. Forty percent of caregivers help with
critical activities like bathing, dressing and eating and during that
year, over 28,000 family caregivers were injured while providing care.

**National Caregiver Resources**

[**Eldercare Locator**](http://www.eldercare.gov/)

The Eldercare Locator, a public service of the U.S. Administration on
Aging, is the first step to finding resources for older adults in any
U.S. community. Just one phone call or Website visit provides an instant
connection to resources that enable older persons to live independently
in their communities. The service links those who need assistance with
state and local area agencies on aging and community-based organizations
that serve older adults and their caregivers.

[**Ask Medicare**](http://www.medicare.gov/Caregivers/)

Ask Medicare helps caregivers find information and answers to common
Medicare questions. It\'s an initiative by the U.S. Department of Health
and Human Services and the Centers for Medicare & Medicaid Services
(CMS) to help connect caregivers to information they need to know.

**[Family Caregiver Alliance - National Center on
Caregiving](http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=368)**

Established in 2001 as a program of the Family Caregiver Alliance, the
National Center on Caregiving (NCC) works to advance the development of
high-quality, cost-effective policies and programs for caregivers in
every state in the country. Uniting research, public policy and
services, the NCC serves as a central source of information on
caregiving and long-term care issues for policy makers, service
providers, media, funders and family caregivers throughout the country.

**[National Alliance for Caregiving](http://www.caregiving.org/)**

Established in 1996, The National Alliance for Caregiving is a
non-profit coalition of national organizations focusing on issues of
family caregiving. Alliance members include grassroots organizations,
professional associations, service organizations, disease-specific
organizations, a government agency, and corporations.

The Alliance was created to conduct research, do policy analysis,
develop national programs, increase public awareness of family
caregiving issues, work to strengthen state and local caregiver
coalitions, and represent the US caregiving community internationally.
Recognizing that family caregivers provide important societal and
financial contributions toward maintaining the well-being of those they
care for, the Alliance\'s mission is to be the objective national
resource on family caregiving with the goal of improving the quality of
life for families and care recipients.

*A Family's Journey of Caregiving*

[]{#Thirty .anchor}*Thirty years ago there were very little supports,
services or options available for families caring for their older loved
ones in the United States. Since that time, our nation has made great
strides in helping caregivers provide the assistance they need to keep
their family members living at home in the community among their
families and friends. A groundswell of support for addressing the
challenges that caregivers experience on a daily basis has resulted in
many positive changes, including the Family and Medical Leave Act, the
National Family Caregiver Support Program, and the long term care
provisions included in the 2006 Amendments to the Older Americans Act
that emphasize the delivery of home and community-based services to
older persons in lieu of costly institutionalization.*

*The story that follows was written by Sr. Marie Clark, IHM who was
Assistant Secretary for Aging Josefina Carbonell's teacher and principal
in high school in Miami. It vividly describes the painful yet poignant
journey her family endured caring for their mother.*

A Caregiver Speaks Up

On Thursday, June 20, 1974 at noon, my mother suffered a severe stroke
quite suddenly while working at Wanamaker's Department Store in
Philadelphia. My mother had never been sick before, so this was a shock
to my father and two brothers. She was only 71 and quite active and well
until that day. It was a blessing that I was at home with my father at
the time that the Department Store nurse called the house and informed
us that my mother was taken to Jefferson Hospital in Philadelphia.

Later that afternoon, my father asked the Doctors at Jefferson if my
mother could be moved to the Roxborough Memorial Hospital as a
convenience for the family and friends. I was then able to stay at our
family home with my father. On Saturday, my two brothers came from Long
Island and Maryland with their families for the weekend. They all left
on Sunday after having visited ICU, watching my Mother who was in a
coma. Unfortunately, the following Monday morning, before I went to the
hospital to visit my mother, I found my father dead in bed. He had a
massive heart attack two hours before I found him. I am sure that it was
the shock of my mother's condition that brought this on.

These were very tragic and trying times for my two brothers and me.
Neither my mother nor father had ever been sick before, so we were all
devastated. My mother's stroke was pronounced to be severe. She was
unable to speak, and both her right arm and right leg were paralyzed.
She remained in the Roxborough Hospital until September of 1974 and then
she was transferred to Einstein Medical Center for continued therapy
until November 1, 1974.

My two brothers and I decided that it would be best to bring her to her
own home and with assistance that was accomplished. I, at that time, was
involved in Administration in a large Catholic Girls' High School, and I
believed that it would be best for me to request a Leave of Absence from
my Superiors in the IHM Congregation. This was granted, and from 1974 to
1980 when my mother died I remained in our family home in Roxborough and
had to learn many things about home care and learn quickly. Many
neighbors and friends came to my rescue and my mother's doctor was most
helpful with advice and support and home visits.

My mother needed therapy, so I enrolled her in a program in a hospital
nearby where she was given Physical, Occupational and Speech therapy
three times a week. Fortunately, most of these Therapy expenses were
covered by her Medical Insurance (Medicare and Blue Cross and Blue
Shield). She had worked at Wanamaker's Department Store for 24 years and
had paid into Medical Insurance. I observed all these therapies and
continued them at home four days a week. From 1974 to 1978, my mother
improved very well, and at the end of the four years she was speaking
slowly but with great difficulty and able to walk with a cane and use
her right arm a bit.

However, in October of 1978, I found her unconscious one morning in bed
and the doctor stated that she had had another stroke. After
hospitalization for about a month, she was released in a totally
paralyzed state with a feeding tube and unable to use either arm or leg.
She became a bed patient for the next two years. Again, I sought advice
from medical books, doctors and nurses and soon learned how to take care
of a bed patient, use the feeding tube every 6 hours and change the
catheter when necessary. Fortunately, many friends in the neighborhood
came to my assistance especially when I had to get my mother out of bed
with the Hoyer Lift. She needed a hospital bed and also a wheelchair so
that her lungs would continue to function properly. This was a daily
routine each afternoon with the Hoyer Lift and wheelchair. Every 6 hours
I sat beside her bed, and with a standard pole, allowed a nutritional
supplement to drip into her feeding tube. This included a 2 a.m. feeding
so I became an around- the- clock nurse. God and the neighbors were my
daily support.

All throughout these six years of suffering, my mother was mentally
alert, and she and I communicated through little eye signals that I
taught her in order to respond to my questions regarding her comfort,
her favorite TV shows or her feelings. My mother's MD (Dr. Janet
Hampton) who lived nearby was a tremendous support because she made
house calls when necessary, and was always available by phone.

If there had been Hospice or some other Home Care Organization at that
time, I would have applied for those services, but in the 1970\'s this
was not in existence. We could not afford Private Nursing Care, and I
refused to put her into a Nursing Home.I could not subject my mother to
such deplorable conditions as long as I was alive and able to take care
of her. I am grateful that I was able to do what was necessary for her
comfort and keep her in the familiar environs of her own home.

My mother passed away in the Roxborough Hospital on May 22, 1980 after
severe de-hydration and a stomach virus that the doctors were unable to
isolate or treat. She was only in the hospital for three days and I was
sorry that she could not die at home because that was her wish. My two
brothers and I were at her bedside when she breathed her last breath. I
was very grateful that I had been able to care for her during those very
difficult years when she suffered so intensely.

Written on June 12, 2008 by Sr. Marie Clark, IHM Home Care For Mrs.
Leona Clark from 1974 to 1980

(Given by her daughter, Sr. Marie Clark, IHM)

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[^1]: Mittelman, M., et. al. Improving caregiver well-being delays
    nursing home placement of patients with Alzheimer's Disease., AAN,
    2006.