His First Year


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April:  Shifting responsibility

Adults, almost by definition, are responsible for their own decisions and choices. And when you're dealing with someone who you respect – someone you love – who had a long history of being a responsible adult, there is a natural reluctance to take that responsibility away. Even when it is clear that they are no longer capable of responsibility. Or even rational decisions.

There's a whole range of ways this plays out. There are myriad legal and ethical considerations. Should the Alzheimer's patient still be in charge of their own finances? Should she still be driving? Is she capable of signing legal documents?

Those are the big ones, but it's the small ones which are harder. Harder on you, and on the patient. You don't want to take away anything prematurely. Like decisions about what to wear. Or what to eat. Or what to read. Or even when to go to the bathroom. Each of those steps seems to be a diminishing, a loss of adulthood, even a loss of dignity. And this is someone you love, perhaps someone you turned to for advice on your own decisions.

But step by step, the disease robs the patient of the ability to make even the simplest choices. Even if they don't realize that.

Martha Sr and her husband Hurst had moved into their home in the early 1950s, and had raised their family there. It is a classic 1880s historic home, and still retains a lot of the original character. She loved it, and naturally it contained a wealth of memories for her. This was the primary reason why Martha Jr and I moved into the home to care for her as she started to become frail – she couldn't stand the thought of leaving it.

But she was also worried about what would happen to the home after her death, and on multiple occasions told Martha Jr that she wanted her to have it – her two other living children were well established in their own homes, one of them (Martha Jr's sister) out in California. I think that she was worried that when the time came to divide up her estate, the house would just be sold and the proceeds split among the siblings. So, she changed her will to specify that Martha Jr should receive half ownership of the house right off the top, the rest of her estate then divided in three parts.

But this was a somewhat dicey move, since she was already exhibiting some signs of the effects of Alzheimer's. Still, the long-time family attorney went along with her wishes, and made the changes.

Then over the last several years of her life, she would repeatedly ask what was going to happen to the house, and kept suggesting that she should “talk to the attorney” to make sure that Martha Jr inherited it. It was something of a fixation for her, almost to the end. We were able to tell her that the arrangements had already been made, and that put her at ease – until the next time the matter came up.

After her passing, in order that none of the other siblings felt that we had manipulated Martha Sr into making this change, we re-jiggered the allocation of the estate so that things worked out to an equitable split, while still respecting Martha Sr's wishes that Martha Jr wound up with the house.


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