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| Lake Vättern at Sunset |
We continue our discussion of what you need to do if you
want to stay at home, focusing on the importance of getting help into the home
when you need it.
The first lesson we learned from our work with family
caregivers, and that we have shared with many people over the years, is that
you cannot manage taking care of someone at home with a disabling illness like
Alzheimer’s disease all by yourself.
That’s true of caregivers and it’s even truer for the person who lives
alone and wants to remain at home.
This is a scenario we have seen over and over. An older person’s condition gradually
deteriorates, and he or she has increasing difficulty managing the day-to-day
tasks, for example, shopping, cooking, finances or driving. If the person is married, the burdens for the
spouse of taking on an increasing amount of responsibility for keeping the
household going may become difficult to manage.
After all, she or he (husbands actually take on this role often) is
older, too, and also may have health problems.
Whether you are living alone or with a spouse, your children
and friends will look at the situation with increasing concern. Are you safe?
Are you leaving the door unlocked or the stove on? Are you taking care of yourself adequately or
is it difficult to get and prepare food?
Are you able to keep the house clean?
What happens if there is an emergency, such as a fall?
A little aside here:
Everyone has his or her own perception of what is safe. As a caregiving daughter, Judy would like to
anticipate and be prepared for any possibility with her mother, who lives in a
suite of rooms attached to our house. In
Judy’s perfect world, there would be an amazing Mary Poppins-type character who
would come whenever we are out of town who would not only provide assistance if
needed, but have scintillating conversations with her mother and maybe prepare
gourmet meals (I said this was my perfect world fantasy). Her mother, on the other hand, is determined
to be independent as long as possible, which we also support. We tried some “granny sitters,” but her
mother felt that she didn’t need that much help yet. So, we compromised. We have a geriatric care manager (see earlier
posting “Doing the paperwork for a good end of life”) who calls her nightly when
we are out of town and who is there should an emergency arise. Beyond that, her mother has the support of
friends and a helper who can take her shopping while we are gone.
Please note that the last sentence about the helper did not
happen overnight. At first, we tried
having a helper come every week to take her wherever she wanted to go, driving
her car. For about three or four months,
Mom viewed these visits as unnecessary, and to prove it, she wouldn’t let the
helpers do anything for her, so they sat and chatted, and then she took the
helper out to lunch. Then she started
decreasing the visits until the helper was coming once a month.
When Mom stopped driving, which was almost two years ago
now, we all had to adjust to a new situation.
Having driven since she was 12, not being able to jump in a car and go
was a huge change, and definitely a loss of independence for her. While Steve and I are willing to drive her
whenever and wherever she wants to go, she hates asking. We started by color-coding our appointments
on one main calendar, so we can be sure to available when she needs
transportation. This was also the point
where we engaged the services of the Geriatric Care Manager, who helped us find
a different agency for helpers who were more to Mom’s liking. At that point (nearing 90 years old), she
decided that a little help with heavier tasks around the house would be nice,
and a leisurely shopping trip to her favorite stores would be acceptable. Currently she has a helper every other week,
unless we’re traveling. Then we hire
some extra shifts.
You would think that at this critical point, where
independence hangs in the balance, people would gracefully accept help when it
is offered. Children may even go so far
as to hire helpers to come into the home to assist parents with their daily
life, but not infrequently, parents then fire the person, because they feel
they don’t need help.
Let’s be clear about it.
Being able to stay at home means being willing to accept help when you
need it. It’s that simple. If you don’t accept help, then at some point,
other people’s concerns about your safety and health will overcome their
willingness to honor your intention to stay at home, and they will move you to
an institution where they believe you will be safe.
Accepting help poses a classic psychological dilemma—you
have a goal to stay at home, but you cannot bring yourself to do what you need
to do to make it happen. We have all
known older people who could make their living situation a bit better and safer
with a few simple changes, yet they refuse to get any help. Why might any of us react this way? There are 3 reasons.
1. People want to
hold onto their independence no matter what, and so they minimize the problems
they are having. Part of that independence
is not having strangers come into the home to help them.
2. People have a lot
of confidence that they know what’s best for themselves, based on past
experience. They expect to be able to
continue living as they always have. In
fact, it is almost impossible to imagine what it will be like when they
can’t. This leads them to dig in and
resist any advice or suggestions from family and friends, no matter how well meaning
it is. This is often viewed as
stubbornness, which leads the family to dig in further themselves. The person can’t acknowledge his or her own
decline, and the family may err on the side of prematurely offering help. This often results in an impasse. When that happens, both parties need to step
back and start a conversation about how they can compromise.
Steve’s former graduate student, Allison Heid, studied perceptions
of stubbornness in her doctoral dissertation.
It’s a term that immediately gets a reaction. When speaking to a live audience, Steve and
Allison found that when they introduce the topic of stubbornness, many people
start nodding and then relate stories about a parent or other relative who is
exasperatingly stubborn. Allison also
found in her dissertation research that stubbornness was quite common as
reported both by middle aged children with older parents and by the parents in
describing themselves. We are our own
worst enemies, often rejecting the advice that would help us achieve our
goals. But we can also anticipate that
as caregivers, we can’t swoop in and convince Mom in a brief conversation to
get help. We need to have
conversations. And we can anticipate
that we may be exasperatingly stubborn when we need help and try to make things
easier for those family or friends coming to our assistance.
3. Home help is
unreliable and sometimes helpers lack training.
This is a real obstacle, but if you want to stay at home, you will need
to find the services and helpers who do what you want. Cost can be an issue, too, but if you have
limited income, there may be state and local programs that help pay for home
care.
So if you want to stay at home, you need to anticipate these
barriers and prepare now for getting help.
It’s a paradox in a way—to remain independent, you have to give up some
independence. Recognize the
psychological barriers you would put in the way of getting help and lay out in
your mind or, better, on paper, the advantages compared to the disadvantages of
getting help when you need it. And
familiarize yourself with the services that can come into the home to provide
help—everything from cleaning and home repairs to personal care. And talk with
the person or people who will be your advocates—tell them you know that you
might need help and they should arrange it for you when you need it. If in the future you are reluctant to use
help, they can remind you of this discussion.
When we talk about adjustment, it’s not just the older
person’s acceptance of help, but also the family’s acceptance that they will
not the full security blanket that they might wish.
One of the things we have been assuming is that everyone
agrees with the goal of staying at home.
Judy and her mother can reach compromises because they share the same
goal. In many families, there are varied
opinions, so there may be family members who will undermine the plans that are
not consistent with their goals.
Up to this point, we have been mainly talking about someone
with an active care partner. A person
living alone in the community with a degenerative disease such as Alzheimer’s
presents a different set of challenges.
If you have or develop Alzheimer’s disease or another degenerative
illness, you have to play both roles, as the planner and the person who will
receive care. You need to be able to
anticipate that your disease will progress and that you will require care in
order to stay at home. That means that
very early in the disease you want to find someone to help you with the
planning, such as a geriatric care manager, geriatric psychologist or geriatric
physician. With this person’s help you
want to put together a plan with all the resources you might need in the future
to stay at home. You also will need to
find someone who will have durable power of attorney to act on your behalf when
the time comes. Again, this could be a
family member, friend or geriatric care provider.
It is doubly challenging to be alone and do this kind of
future planning, because it involves truly accepting that you are in
decline. But home care is still
possible. You will need to rely on
someone to be an advocate for you and who will remind you why you need
help. That’s why you will want to have
these discussions now, well in advance of needing them. You may even want to write out your
intentions and give your advocate a copy to use in case you say, “I don’t need
help.” Remember, the reason you are
doing this is so you can live out your life the way you choose, surrounded by
the familiar environment that you have created for yourself over your lifetime.
Some additional reading that may be of interest:
References
You can read the report, “Home Alone: Family Caregivers Providing Complex Chronic
Care,” by Susan Reinhard, Carole Levine and Sarah Samis at:
Marcy Cottrell Houle & Elizabeth Eckstrom, (2015). The gift of caring. Lanham, MD. Taylor Trade Books.
Allison R. Heid, Steven H. Zarit, and
Karen L. Fingerman (2016), “My Parent Is So Stubborn!—Perceptions of Aging
Parents’ Persistence, Insistence, and Resistance,” Journals of Gerontology: Psychological Sciences, vol. 71, pp. 602-612
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