And I Need Help!
What do you do if your loved one living with dementia only wants YOU to help them?
I write and talk a great deal about how some people living with dementia can be uncooperative. How they refuse to complete necessary care activities: “I don’t need to get a bath. No, I’m not getting changed. Leave me alone.” I also provide a lot of webinars about why people living with dementia refuse your help, help you know they need.
A colleague of mine shared that her husband only wants her to help him with his bathing and dressing. She has a full-time job—they definitely need the salary and medical benefits—and even when she can work from home, she has multiple meetings and tasks that she has to complete. She also is finding it physically harder to give her husband the care that he needs. When she told her husband that she was going to hire a someone to help him, he became very upset.
My colleague told me how she tried to explain and reason with him, unsuccessfully.
I suggested she just hire the sitter and ignore his protests. My colleague stared at me like I had lost my mind. I’m used to that look. I get it a lot. Here’s how I explained the situation to her.
No One Wants to Be Told What to Do
Autonomy, which is the ability to make one’s own decisions, is a treasured value in this country. Many of us do not like being told that we HAVE to do something, like wear a mask or get a vaccine or use a motorcycle helmet. Our country values the individual over the group. When it comes to our loved ones, we try to support their autonomy as long as we can.
Dementia and Decisional Power
But I often see family members, like my colleague, giving their relatives living with dementia too much decisional power. By that, I mean that family members are uncomfortable making decisions that are oppositional to the desires of the person living with dementia. I see families spend months trying to convince a very confused older adult to agree to sell the house, move into an assisted living, or accept help from a sitter. Meanwhile, the primary caregiver is exhausted from jumping back-and-forth between homes or is jeopardizing their own health providing levels of care that is beyond their capabilities. If a person living with dementia does not have enough brain power to properly run the dishwasher or use the microwave, they do not have enough insight or judgement to fully participate in decisions about their care. If a person living with dementia has no idea what the day of the week is, or think that the year is 2012, they do not possess enough memory to hold onto the multiple facts that are necessary to make logical decisions. Any of your attempts to convince them to do something are headed to failure.
I realize this may sound harsh. However, I have seen too many family members held hostage waiting for their family member living with dementia to agree to sell the house or move to another level of care. These persons are not able to appreciate that their current living arrangements are unsafe. In the case of my colleague, her husband could not retain several important pieces of information: they both relied on his wife’s salary and benefits, she needed to go into the office a couple of days each week, and she was no longer physically able to provide the level of care that he needed. He was not being mean, thoughtless, or stubborn—even though it felt that way to his wife. He was doing his best to understand the situation using his limited cognitive abilities. He was also living in his world, where he believed he could care for himself and only needed his wife to help out here and there.
How to Handle “Only Me”
What do you do in this situation? In the case of the sitter, I suggested that my colleague hire the person and walk away. I prepared her for her husband’s protests and gave her strategies to avoid the circular “hamster wheel” of dementia arguments. Before I helped her, the conversations between my colleague and her husband went like this:
Colleague: “Honey, I have to hire someone to stay with you. I need to work and I can’t be here all of the time.”
Spouse: “I am fine being here by myself. I don’t know what you are talking about.”
Colleague, changing the topic: “I need someone to help you get your shower.”
Spouse: “I don’t want some stranger in my house.”
Colleague: “You are too big for me to lift. I can’t lift you.”
Spouse: “I can move myself, you don’t lift me.”
Many of you are probably nodding your head right now, thinking of your own hamster wheel experiences.
Use One Self-Descriptive Statement
I suggested one simple self-descriptive statement that she repeat over and over: “I’m not strong enough to help you.” By changing the statement to a description of herself, and not that of her spouse, she was side-stepping one of the hamster wheels. I avoided anything about her needing to work or the need for her salary, because her husband always argued that his pension was enough. I advised her to keep to the one statement and to not respond to other arguments, such as her husband’s protests about strangers.
Move Forward with Plan
I then advised her to contact an agency and explain the situation to the agency. I suggested that she work from home the first time a sitter cared for her husband, just in case, but to stay in her home office and let the sitter handle the situation.
A week later, my colleague happily shared her success. She said nothing to her husband until the sitter arrived. She introduced the two of them, went into the home office, and shut the door.
When she checked on them a couple of hours later, she found them sitting amiably in the kitchen, eating lunch. Her husband had been showered and shaved. As soon as he saw his wife, he turned to the sitter and told her she could leave. The sitter replied, “Your wife has a busy afternoon, How about a game of cards after lunch?” Argument averted.
It may seem difficult, but there are times you have to make the necessary changes to provide the best care for your family member living with dementia, and to protect your health and sanity. It’s not being selfish. It’s being loving—because if something happens to you, your family member will have to depend on someone else who may not care as much as you do.
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Categories: Alzheimer's Disease Care Partners Caregiving Decisional Capacity
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
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