January/February 2009

Empowering Resistant Elders
By Irene Zelterman, LCSW, C-ASWCM
Aging Well
Vol. 2 No. 1

As a geriatric care manager, the most common calls I receive are from adult children with concerns about their parents’ safety and questions about home care. Most of these adult children want to keep their parents in their own homes, usually to comply with their parents’ wishes. The adult children want to know how much home care their parents need and how they can get their parents to accept it. In most cases, the adult children come to recognize and understand parents’ needs following a crisis such as a fall. However, a significant problem arises when parents neither acknowledge the need nor accept the prospect of “someone in my house.”

I have found that one of the least effective ways to deal with this problem is to get into a power struggle with the older adult. It is very difficult, though not impossible, to force someone to accept home care, and this rarely works out well for those involved. Adult children frequently attempt to convince their parents that they need home care, resulting in a very frustrating experience, particularly if the parent has dementia. The adult children sometimes find that after extended conversations, the parents may agree to home care, only to discover that when the time comes to actually bring in the home care assistants, the older adults resist because they forgot or don’t choose to remember that they had agreed to it.

If we analyze this situation from the older adults’ point of view, their resistance makes sense. Consider how you would feel if one of your relatives were to inform you that since you are not taking good care of yourself, you need to accept help from a stranger who will practically move into your home. You would probably be outraged. And this is the way older adults often react.

Analyzing the Situation
In a recent case, I was able, over time, to help an older adult accept the home care she badly needed. The case began with a call from an elder law attorney who was working with two adult children and their 81-year-old mother, Alice. He described her as stubborn, controlling, and arrogant. She was prescribed a total of 10 different medications, but it was questionable whether she was taking the medications as prescribed. Unsteady on her feet and with a history of falls, Alice had diabetes and mild early-stage dementia. Her adult children, one of whom lived out of the country and another who lived out of the state, made several attempts to get their mother to accept home care, but Alice quickly fired everyone who went into the home. Alice reached the point where she wouldn’t allow any aides to enter her home.

When I visited Alice, I found her to be a very intelligent, strong-willed woman with a fabulous sense of humor. She denied needing help and refused to allow me to bring an aide into her home. I realized I was going to have to move very slowly with Alice to show that I respected and understood her.

I spent the next few weeks chatting with Alice and getting to know about her life. We talked about her controlling mother, which helped me understand her need to feel in control of her own life. We also talked about the work Alice had done before she retired. Alice had served as a school principal, so she was used to taking charge and being the one in control.

Alice also talked about her love for her children. I was able to help Alice see how her refusal to accept home care was very stressful and painful to her children. She confided to me that she didn’t want to be a burden to her children.

That’s a concern we frequently hear from clients—wanting desperately not to become a burden on their children. If care managers can prompt older adults to recognize how their behavior causes their children stress, sometimes this alone results in acceptance of home care. It can be effective to explain older adults’ acceptance of home care as a help to their adult children rather than as a help specifically to aging parents.

Moving Slowly
Over time, Alice began to open up to the idea of accepting home care on a limited basis. I explained that we would work as partners in finding the right aide. She would interview the aides, and she had veto power if she felt the aide was not a good fit. I knew this would be a lengthy process, but it was the only way to get her to accept the home care she needed.

I located a number of aides for Alice to interview and, not surprisingly, she told me she was not comfortable with any of them. For the most part, I found Alice’s perception and evaluation of the applicants to be on target. We discussed each candidate, and Alice saw that I respected her judgment. This process solidified our relationship, allowing us to move closer to the goal of getting care into Alice’s home.

As time went on, the problem shifted from persuading Alice to agree to home care to identifying the right aide for the job. After the interview process, when discussing each potential aide with Alice, I was able to understand her likes and dislikes, helping me narrow the list of candidates. After many tries, we finally found just the right match.

Initially, the number of hours of assistance Alice would accept was minimal—only four hours per day. The limited number of hours was less than what she needed, but I had to respect Alice’s wishes. Eventually, Alice became attached to the aide and asked her to stay longer.

It’s not unusual to observe elders’ acquiescence in extending time with aides, particularly among older adults who were socially active when they were younger and better able to get around. As their health begins to deteriorate, they spend more time alone and, as a result, they become lonely and depressed without noticing their growing unhappiness and being unable to identify the root of it. They don’t necessarily like being alone, but they get accustomed to it. Then when they do have an aide in the home, they enjoy the social interaction, often without realizing that the personal connection is what they had been missing.

The trust that developed between Alice and her aide resulted in Alice’s ability to express her fear of falling and dislike of being alone. The aide maintained close contact with me, so I was able to see that things were moving in the right direction. Despite her need for 24-hour care, we had to allow Alice the freedom to decide this for herself. I remained in close contact with the adult children who, fortunately, trusted my judgment and allowed the process to continue at a pace with which they weren’t always completely happy.

Alice had refused to allow an aide to stay in her home overnight. But one night, Alice fell and was unable to get up. When the aide arrived the next morning, she discovered Alice on the floor. Fortunately, Alice was not hurt, but she was frightened enough and had grown close enough to the aide that she finally relented and accepted 24-hour care.

Growing Confidence
Alice developed a high enough level of trust in me that enabled her to accept, without resistance, new or substitute aides when necessary. She told me that she didn’t need to interview aides because “I trust you, and I trust the people you bring.” Now Alice is able to stay home safely, and the in-home aide arrangement allows her adult children the freedom from worrying about her safety. They know that no matter what happens, their mom will not be alone.

In many cases, geriatric care managers must mediate between older adults’ desire to hold on to their idea of independence and their adult children’s concern for their safety. I often have to speak with the adult children to explain that their need for assurance of their parents’ safety doesn’t trump their parents’ wishes. Of course there are some clear-cut situations where it would be neglectful to fail to introduce home care, even over a senior’s objections. But in many cases, it is not clear cut.

 From my experience with Alice, I learned how to work with older adults in ways that respect their need to feel in control of their lives and let them recognize that accepting help actually allows them to maintain their independence. I also learned how to help adult children see that their need to feel confident in their parents’ safety needs to be thoughtfully balanced with their parents’ need for self-determination.