“But he said he wants to live alone” and other problematic dementia care statements

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How often I have heard family caregivers say, “But my ___ told me to never move them out of their house.” People who, now, have dementia, told their loved ones things before their dementia got bad. “My Mom told me to never move her to assisted living.” “My husband said that I need to let him continue living at home.”

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I attended a wedding recently, and found out that one of the other attendees had early-onset (“younger-onset”) Alzheimer’s disease. I immediately went into what I call “dementia mode,” which is where I start providing care to someone with dementia even if it is not my original job. Truly, I can’t help it, I just feel a pull to people with dementia. As I spoke to this man, I quietly assessed him in my own mind. He was in an early-moderate, maybe moderate on a bad day, stage of Alzheimer’s.

Another woman at the wedding told me about his situation. “He lives at home, but he has a few caregivers who see him three times a week,” she said. “Just three times?” I asked, sighing. “What does he do the rest of the time?” I asked, even though I knew what her answer would be. “He’s home alone,” she responded. “He said, before his Alzheimer’s had gotten bad, that he’d wanted to stay at home and take care of himself as much as possible.” “That’s not good,” I said. “He needs 24-hour care in his stage of dementia.” “But he said that he wanted to take care of himself!” she shook her head. “He said that before he got Alzheimer’s!”

I always grit my teeth when I hear these lines. The problem is two-fold:

1. Your loved one had no idea how much care they’d actually need, and wouldn’t have given you an ultimatum like that if they’d known. They would’ve said, “Find me great care but also take care of yourself.”

2. Consent becomes a big problem. Even if someone said, while cognitively healthy, that they wanted to live alone, their ability to consent to continue living alone changes in dementia. They can no longer consent to things like this because they can no longer make healthy and safe choices regarding their own healthcare.

It is no longer an option for someone with dementia to make choices for themselves (before or during the disease process) once their dementia progresses. This man needs 24-hour care, and, sadly, something he told his family years earlier is shaping his care situation.

If you’re in the UK, check out this article on AgeSpace about Attendance Allowance and how it can help you!

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Rachael Wonderlin has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. She owns Dementia By Day, a dementia care consulting company.

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