Communion Of Dreams

“…we were not alone…”

I mentioned in passing last week that I was working on all my care-giving posts for a book. Here’s a bit more about that project, as it is tentatively shaping up.

Sometime last year, when I cross-posted one of those entries on Daily Kos, I discovered that there was someone else there who was in pretty much the exact same situation: caring for a beloved mother-in-law. For a variety of reasons, it is fairly unusual to find a man caring for a mother-in-law with dementia. We didn’t strike up what I would call a friendship, since both of us were preoccupied with the tasks at hand, but we did develop something of a kinship, commenting back and forth in one another’s diaries on that site. Our paths diverged – he and his wife eventually needed to get his mother-in-law into a care facility, whereas my wife and I were able to keep Martha Sr home until the end. But the parallels were made all the more striking by those slight differences. In the end, his “Mumsie” passed away about six weeks before Martha Sr died.

Recently this fellow and I picked up the thread of our occasional conversation once again. And discovered that both of us, independently, had been thinking of writing up a book about the experience of care giving. It didn’t take long before we realized that together we could produce a more comprehensive book, and a lot more easily, drawing on our individual experiences to show similarities and different choices. A few quick emails sorted out the pertinent details – basic structure of the book, that all proceeds from it will go to the Alzheimer’s Association (or them and other related organizations), some thoughts on publishing and promotion – and we were off and running.

For now, I’ll just identify him by his screen name: GreyHawk. By way of introduction, check out this excellent post of his at ePluribus Media, where he very neatly explains the *why* of our decision to write this book:

Special thanks to Jim Downey for the supplying the links to the video and to his blog, and just for being him; my wife and I took comfort from the fact that we were not alone in our situation, and that we knew at least one other couple who were going through a very similar experience to our own.

That’s it right there. Millions of Americans are facing this situation today, and millions more will in coming years as the baby-boomer generation ages. I’m not a scientist who can help find a cure to the diseases of age-related dementia. I’m not wealthy and able to make a significant difference in funding such research. But I can perhaps help others to understand the experience. GreyHawk and I are going to try, anyway. I know that my wife and I found comfort in knowing that we were not alone in this. So did he and his wife. If we can share that with others, and make their experience a little more understandable, a little easier, then that will be a worthy thing.

Wish us luck.

Jim Downey

6 Comments so far
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Best of luck to all of you. I think the hardest thing for people in the situation to grasp is that they are NOT alone. Even with the great numbers of persons with Alzheimber’s, or any other disease affecting the family to that extent, there is often a sense of isolation. And within the community, there are subsets of people, such as you and GreyHawk, who are further isolated by not fitting the “norm” of the group.

Hopefully the value of this book will be to let people know how many others are out there – and that there is no one “right” answer to how the family proceeds. That, too, can be isolating if the majority follow one path, and a family feels isolated because they choose to go a different way. The fact that the two families made different choices at the end, both of whic turned out to be “right,” will also be a big help to people.

Comment by ML

Am so glad GreyHawk recently posted a link to My Name is Lisa and to your blog. Fourteen years my mom and her sisters cared for their mother, over half of them at her home, on a cath, then a feeding tube…so sad to see.

Now my mother has Alzheimers and I wonder what the future holds for all of us. Mostly for her.

I will come back here and read when the going gets rough. Thanks for sharing your story.

Comment by annemprice

ML – thanks for the good wishes. This is indeed our hope for the project.

Anne – thanks for stopping by, and sharing some of your family history. I wish you well with your journey with your mom, and would only offer the advice that finding local help in the form of an Alz Assn chapter is the best thing you can do. And the sooner the better.


Jim D.

Comment by Communion of Dreams

Thanks for the suggestion. Just read your post on cortisol. My experience at the beginning with the initial diagnosis was that I lost 20 pounds in about a month, but that reversed itself over time and resulted in “middle” weight, the apple around the belly that cortisone is known for — but I never heard of the adrenalin or cortisol issues before your post. Thanks for the info.

Comment by annemprice

[…] the content for *that* website. Play with the dog.  Should touch base with my collaborator on the Alz book, see where he is on some transcriptions he is working on. And then prep dinner.  In other words, […]

Pingback by Been busy. « Communion Of Dreams

If you haven’t already included this in the Caregiving book or the Scrap Book, I’d like to suggest that this post go in as a potential prelude or introductory bit.

It kinda sez it all, ya know?

Comment by GreyHawk

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