Saturday, June 11, 2016

Staying at Home, Even with Alzheimer’s: It Depends on Your Willingness to Get Help

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:


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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