In Sickness and In Health

Nanette Lavoie-Vaughan, ARNP-C, MSN



Alma dropped into the recliner chair and exhaled deeply. “I’ll just sit for a few minutes”, she
told herself. A brief flicker of guilt crossed her mind as she looks at the stack of dishes in
the sink and the pile of laundry waiting to be washed. As her eyelids closed, Alma heard
Bob calling out from the bedroom. “Honey, I need help!” Instantly awake, Alma jumped up
and headed in Bob’s direction. Entering the bedroom now cluttered with medical
equipment and looking more like a hospital room, Alma gasped. Bob was sitting on the
floor between the bed and commode chair. “Sorry babe,” he said sheepishly, “I tried to
help myself this time and I guess I slipped.” Alma bit her tongue, wishing just once she
could tell Bob how she felt about his helpfulness. Instead, she put on a smile and leaned
over to help Bob off the floor. After settling Bob back into bed and cleaning up the mess,
Alma made her nightly call to her daughter. “I just don’t know how much longer I can go on
like this.” Her daughter listened for a while and then gently suggested that maybe it was
time to look at other options for her Dad. Alma realized she might be right.

“Life begins at fifty” goes the old adage, but today’s fifty somethings face a more complex
life. Many face early forced retirement, loss of jobs, chronic illness of their spouse, daily
care of grandchildren and worries about securing a safe future for an adult handicapped
child.

Making the right decision for you and your loved ones not only involves looking at finances
but having a working understanding of all the options that are available to provide
comfortable “golden years”.

According to the U.S. Department of Health and Human Services, one fourth of American
families are full time caregivers for spouses, parents or adult children with chronic illness
and/or handicaps. The numbers are significant: 26 million are caregivers to an adult family
member, 5 million are caregivers for a person with dementia and 7 million are informal
caregivers. Of this group, half are woman and half are over the age of fifty. According to the
2004 Department of Veterans Affairs Survey there are 514,000 veterans with dementia who
require a formal caregiver.

Care giving is a fulltime job for most with 40 or more hours of their week spent on care
giving duties. Even informal caregivers can spend as much as 20 hours a week involved in
activities that are strictly caregiver related.  All this time spent caring for another takes its
toll. The Department of Health and Human Services survey of full time caregivers revealed
that half of all caregivers describe their health as poor, often suffer from depression and
are more likely to become physically ill. Despite all good intention, caregiver stress can
lead to illness, injury and premature death. As a caregiver you need to recognize the signs
of stress and when to seek help.

The National Alliance for Care giving has identified the following as potential signs of
stress overload: reduced attention span and concentration, unusual memory lapses,
impaired thinking, consistent irritability, physical aches and pains, irregular heartbeat,
unusual or excessive perspiration, skin rashes, stomach problems, difficulty sleeping,
withdrawal from regular activities and diminished interest in home and environment.
Recognizing these signs early and seeking help can prevent serious damage to your own
health.

Stress overload can be managed for a short period of time. The National Family Caregiver
Support Program, provided through the Older Americans Act, provides information for
caregivers; helps gain access to services, counseling, and respite care; and provides
caregiver services on a limited basis to those who are eligible. Your local Area on Aging
can also be an excellent source of information and resources and are usually listed in the
Government section of the phone book.

  •        National Eldercare Locator 1-800-677-1116 or www.eldercare.gov
  •        Family Caregiver Alliance www.caregivers.org
  •        National Family Caregivers Association www.nfcacares.org
  •        Alzheimer’s Association www.alz.org

When the burden becomes too great or care giving is not an option, then you need to be
aware of what options are available to make an informed decision. The choices that were
once limited to nursing home care and home health care have expanded to include all
types and combinations of care. The down side is that this has made the decision process
more confusing for the average person. Continuing care, assisted living, supportive care,
rest home, family care home, adult day care, residential care, home health care, respite
care and nursing home care, intermediate care, skilled care, institutional care- what does
all this mean?  Which one meets you and your loved ones needs? Let’s start with the
basics.

The first decision you need to make is how much physical care your loved one requires.
Their ability to dress themselves, walk or propel a wheelchair, feed themselves, take their
medications and their special medical needs will determine the level of care that is best
suited for them. Each level of care has different criteria for services and a basic
understanding of the criteria is the first step in making an informed decision.
(see sidebar)

Once you have decided what level of care your loved one needs, you must also take into
consideration what environment is going to suit both of you. Will you live with or near family,
do you want to reside in a community or complex that can meet both of your needs or will
you remain in your residence and your loved one be in a facility close by? Take into
consideration your financial resources and long range needs, Medicare does not pay for
any level of care other than nursing home care and only for a limited number of days for a
specific medical diagnosis. Medicaid will pay for nursing home care and rest home care in
some states. If you think you are eligible for Medicaid you need to start the application
process as soon as you start looking for a facility as it can take up to 90 days to finalize the
process. The VA does provide some assistance with financing and finding care. According
to the VA FACT sheet of January 2005, the VA provides non-institutional care such as adult
day care, home health, respite care, hospice and community residential care and nursing
home care at VA centers, state homes and contract facilities in the community. Eligibility for
VA services follows a protocol with priority to those veterans who are at least 70% service
connected, then those that are at least 60% service connected with a permanent disability
followed by those with a combined disability of 70% and non-service connected veterans
who meet income/assess criteria for services. More information can be obtained by
contacting your local VA center or if your loved one is already receiving medical care
through the VA, you can contact the social worker/case manager assigned to their primary
care team.

Finding the right place for you and your loved one can be a daunting task. Involving your
family, a close friend or a professional such as a social worker or geriatric care manager
can provide invaluable assistance in searching and selecting what location is right for you.
Do your homework and utilize the resources in your community. Free guides for seniors
listing housing options available in your geographic area can be found in most grocery
stores and other businesses that are frequented by seniors.

Have a prepared list of questions when visiting a community or facility. Ask about their
philosophy of care, the number and type of staff, meals, activities, special services, costs
and fees, and issues that are important to you and your loved one. Talk with other
residents and ask for a tour to get a feeling for the place and how others like it. Attend
planned activities or ask to sit in for a meal to see if this is a place you will be comfortable.
It is a huge adjustment moving from your own home into a community where you will be
interacting with other people in communal settings on a daily basis. If your loved one is
going to be in a nursing facility you need to feel comfortable with the staff who provide care.

If your loved one needs a nursing home, you can research a facility’s history and their
performance on state surveys by accessing the reports from their yearly inspections at
www.medcare.gov and going to “nursing home compare”. If you do not have web access,
the reports are available at your public library and are required to be posted in the lobby of
each nursing home for public viewing. Rest homes are also inspected yearly and those
reports are also accessible. The survey report will tell you what deficiencies were found on
the annual inspection and if they were serious enough to cause potential harm to the
residents. There is no ideal facility but you want to chose one that has a good reputation
and follows the rules.

No matter what the circumstances and what decision you choose to make, there is
practical advice that all caregivers should consider. Ask others for help, you are not in this
alone. Utilize family members, friends, support groups and respite care. You will be
surprised how many people are willing to help but may have been afraid to ask. Take care
of yourself. Eat healthy foods, plan rest periods, and try to get some type of regular exercise
to keep in condition and prevent injury to you and look for those signs of stress. You cannot
appropriately care for your loved one if you need care yourself. Get regular check ups from
your health care provider and do not neglect your own health care needs. But most of all
recognize when the time comes that your loved one needs more than you alone can
provide and keep your promise to take care of them by arranging the safest and most
appropriate level of care for both of you.
Nanette Lavoie-Vaughan, M.S.N., APN