Aug 24, 2009

So, how about the bad days?!

Friends have said they feel they get mixed messages about how Dwane is doing. I think that is for two reasons: first, a primary characteristic of this diagnosis (dementia with Lewy bodies) is the extreme variation in lucidity and alertness - day to day and even moment to moment. And, second, I discipline myself to choose to see the goodness of life, in all respects. And I do that with this diagnosis because if I dwell in the negative, it is simply too bleak for me. But in the interest of giving a full picture:

What are the worst aspects for Dwane? The physical. The drooling, the lurching walk. He also expresses frustration about expressing himself. Remember: a person with this diagnosis is unaware of their own cognitive decline.

What are the worst aspects for me? The almost complete loss of a companion and partner, in every meaning of those words. Medical experts seems to call it a loss of alertness or lucidity, and I'm sure that is accurate. But, for me, it is best described as a collapsing in upon himself. He seems unaware of external cues and unaware of me largely. Last week he said, "those pants look good on you." I literally cannot remember the time prior to that where he was enough aware of me to notice something about me. As well as causing loss of companionship, this is also a danger. I had a biking accident on a mountain trail near our house, and it took me some time to get my bike back up out of the deep ravine. He was unaware I had been gone overly long. It occurred to me that he would be unable to get me help if I needed it, and then it occurred to me that he would be unable to get himself help if he needed. So, another layer of responsibility for me. When he was lost for 40 minutes (despite what I thought was my hypervigilance for his safety) on a cruise ship this past winter, I noticed that he has lost the ability to figure out what to do to get himself help. He seemed to have simply walked for the 40 minutes, although he was unable to tell me where he had been. He did not ask one of the many ship staff for help, he did not go to a familiar place and stay there, he did not go to where we had been headed.

So, here is a glimpse into the darker moments of what we are living.

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