Much That Is Hidden

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Today I interviewed a woman who takes care of her husband who is in the moderate stages of Alzheimer’s. She wants people to know about the great collaboration between the Georgia Alzheimer’s Association and a local daycare center that her husband goes to twice a week. She says it has been an enormous benefit to him but moreso her in that it allows her some time out from the burden of taking care of what amounts to a nine-year-old with severe ADD in a 62-year-old’s body.

I really enjoyed talking with her. She was so full of enthusiasm and joy, but several times she was on the edge of tears talking about her husband. She was very forthright and candid and I felt comfortable asking her uncomfortable questions like, “what discourages you more – the loss of your husband's memory of the past or the uncertainty of the future?” She said by far the latter.

I shared with her the fact that that my 80-year-old mother was diagnosed with the disease less than two years ago and is heading downhill fast. I received word from my sister who sees her the most that mom now has days where she does not recognize my dad. The last time I saw her was up in Chicago at Christmas time, and she seemed okay but very reserved, so it was hard to tell if she was having any difficulty. I went up there with the express knowledge that it was likely the last time I would see her as anything resembling my mom, and likewise myself resembling her son. It was a good time with a twinge of melancholy - most everybody in our big family (I have three brothers and three sisters) was in for the holiday.

I called just the other night because it was their anniversary. I knew I wouldn’t be able to speak to mom, or more accurately vice-versa. The main thing I noticed in my conversation with dad was that he seemed very sad. He said that he is by mom’s side constantly, and about the only activity they do at the assisted living center where they now live is go to a senior workout twice week. He doesn’t really say anything negative, but I know from my sister that it is very hard on him. Mom gets impatient and doesn’t like the noise of crowds, so he’s limited in what he gets to do.

So during today’s interview I was at this daycare for adults with dementia, and the nurse director was saying that research has shown how caretakers of Alzheimer’s patients often begin a process of dying along with their charges. I considered the talk with my dad and it really hit home how important it is for him to maintain some semblance of his own life. Before my mom got sick he was still going bowling once a week, and he loves to go for walks and also head to Wrigley Field for the occasional Cubs game. I got some information from the nurse about how the Alzheimer’s Association can help pay for respite services and even medications. The place where they live is very expensive, so every little bit helps. I’m waiting on a call back from my sister to discuss what the next step is for both my mom and my dad.

All this has got me thinking about what the end of my own life might be like, and perhaps I’ll share my feelings on that in another post.