A guest post
Some of the many letters and emails that I’ve been receiving over the months have told the stories of the writers’ journeys with Alzheimer’s. I can’t begin to share all of those stories, but so many bear repeating that I’m sharing a part of one story that’s touched me.
I found out about your blog through the Phi Beta Kappan newsletter. My wife was the PBK member, and she is now in the advanced stages of dementia. Since dementia “creeps up on cats' feet," it's difficult to say when it actually began, but she's probably eight years into it with a normal expectance of maybe two more years. Since we're both well into our 80s, that's about all either of us would normally get anyway.
Like you, it wasn't something that we (or our family) wanted, but we don't get to select our late-life maladies. Since you probably have a 10-year expectancy and a seemingly bright mind (like my intelligent, upbeat wife), you still have an extended period in which your mind will function reasonably well. And your family will travel the journey with you at whatever level. One of the good things about filling up a reservoir of good will with your family and friends is that they come together in love and compassion when you need it, as you so correctly wrote in your post “A Paradise Built in Hell.”
My wife and I could still go to films and plays up to a year ago and she could stay with the plot. She's now pretty much bed-ridden and we watch repeating versions the same evening news -- local and national on two channels and then last night's reruns of Steven Colbert and Jon Stewart. Since the three hours of TV news and faux-news involve short segments that she can comprehend and since we hear pretty much the same set of segments upwards of six times, she can get a sense of what’s happened. A former avid reader of newspapers, magazines, and books, she's now switched to TV. Even half-hour dramatic shows are too long for her to maintain the plot, so she likes things such as the current “America's Got Talent” because the segments are no more than a few minutes at the most.
We have a large family -- 30 with our children, spouses and grandchildren -- and I've kind of done for them what you're doing with your blog: I keep them informed about the nature of dementia and about the current life of their female patriarch. In “A Paradise Built in Hell,” you mention the here-and-now world you're moving into, and I've also stressed that with our family. Keep the conversations to about what's occurring right here and now, and then she can, and will join, in. The challenge for us as a family is to not think of dementia in terms of embarrassment. It's what happened to us and it can also happen to them later on. So accept it with grace.
Over three years ago, we hired one of our much-loved, local daughters-in-law to provide us with home care during the Monday – Friday daytime, and that was a good idea. The assistance will not be so much for you as for your wife, who will need to develop a life of her own as your condition worsens. For example, it's allowed me to continue to participate in a weekly lunch with long-time colleagues. One significant advantage of hiring help from within the family is her knowledge of our previous life. They can converse about things that are still of significance to my wife.
Each of our stories is different. I’m grateful to this reader for sharing a bit of his and his wife’s journey.