Alzheimer's disease · Caregiver · Caregiving

The hardest part…? / March 19, 2006

Maybe the hardest part of taking care of a family member with dementia is negotiating her integrity and my sanity. The best plan for me will not necessarily be the best plan for my mother–at this time, at least. How I would love hearing her say, It’s time for me to move to assisted living. My mother can’t do that. She’s losing so much right now, and she knows it. She knows that she’s losing what she’s always thought of as her “self” and how can I ask her to give up anything else at this point, even though this life takes a toll on me? I’m even tolerating some safety compromises in order to keep her in her house. She can still care for herself, but she leaves the water running in the bathroom occasionally. She doesn’t eat right when I’m not around to make the meals. I have two elderly dogs that are good company for her but there’s also the chance she could trip over one of them.

Oddly enough, I don’t believe she’d be unhappy in assisted living. Having people around her, paying attention to her, has always enlivened her. But getting her there at this point would be monumental–I’d have to trick her into visiting. So how long do I let her make her own decisions, even though I might not think they are the best choices? Until something awful almost happens?

And there are the other factors: her doctor, her visiting nurse, her psychiatric nurse-practitioner. Alzheimer’s is not like a more measurable physical illness that demands certain treatment at certain points in time. There’s so much leeway, the caregiver has to listen to her own conscience. Some caregivers would be much more intolerant of safety compromises than I am. But the death of the spirit is what frightens me, keeping her spirit alive–even if it’s a cranky spirit–is worth some risk.

Right now it’s a quality of life problem, more than a safety issue. This state won’t last forever, I know.

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