It's now official. My co-author Shadan7 and I, along with our wives, have decided to self-publish our book about our experiences caring for our respective mothers-in-law as they slowly succumbed to Alzheimer's Disease.
The book's title is Her Final Year. Why that title? Because it fits - in several ways. Particularly if you regard the "year" as a metaphor. I'll excerpt from the link above, as Shadan7's explanation for the metaphor sums it up nicely:
The idea for the book – the metaphor, if you will – is that you can consider Alzheimer’s progression and impact on a life as something of a whole. Just as the seasons progress, just as the days and weeks and months follow one after another in a fairly seamless manner through the course of a year, so does the disease advance. January starts with hope for a new year, in December you’re looking back at how things actually unfolded. You can predict, in general terms, what the weather will be like from month to month – but you can still have a glorious sunny day the week of Christmas, just as you can have a grim and cold weekend in September.
Likewise, someone suffering from dementia can have good days and bad days, even as the general trend of the disease moves relentlessly on to a known conclusion. Furthermore, in no two people will the disease progress in exactly the same way.
Therefore, in order to make our book the most useful to other people, we’ve arranged the “months” according to the general progression of the disease, and then we’ve placed individual entries – drawn from email correspondence, blog posts and Live Journal entries – into the “month” where it most seems to fit. There is a general tendency for those entries to follow an actual chronological progression, but it happens that sometimes they don’t match up that way. In addition, things are time-compressed: the actual experiences we’re relating happened over roughly four years, but in order to make the most sense of them they’ve been fit into this one-year framework.
Hence,
Her Final Year. Incidentally, the last third or so of the book is a whole other section titled
His First Year, dealing with the impact of the caregiving and subsequent recovery from it.
How we met
Shadan7 and I were initially completely unaware of each other and our mutual caregiving situations. We thought, in fact, that our own circumstances were fairly unique - the last thing we ever expected to see was anyone in even remotely similar circumstances going through the experience. After all, from my perspective,
- I was a male caregiver, caring for my mother-in-law
- I was self-employed, running my own business as a consultant
- My work provided me with the unique circumstances of being able to be home most of the time
- I had previous experience working with patient care and, in particular, with victims of Alzheimer's Disease.
- Last, but not least, I am a writer - although not yet professionally published, I've been active online and informally offline for years; during the caregiving cycle, I'd written about my experiences and posted them online as a means of coping. I'd also written a science-fiction fantasy book (with another co-author) that I was hoping to get published.
So, I was a little surprised to meet Shadan7...in his words:
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.
[...click for more...]
When he said "I discovered that there was someone else there who was in pretty much the exact same situation," he meant it - more than we'd realized, in fact. After all,
- He was self-employed, running his own business
- His work provided him with the unique circumstances of being able to be home most of the time
- He was not a stranger to patient care
- He is a writer - a professionally published one, at that; during the caregiving cycle, he'd written about his experiences and posted them online as a means of coping. He's also written a science-fiction fantasy book that you can find out more about here.
Talk about strange synchronicities...1
In Closing...
Anyway...I wanted to share this bit of news with you folks, as many of you have shared our journey through the caregiving cycle, and many more have taken the same journey before us, while still more are facing it now.
Ask questions if you'd like to know more; feel free to take a look at our past diaries, searching on either name here plus using a tag of "Alzheimer's" and setting the earliest date to 3/1/2006.
We look forward to hearing from you, and hope that if you read the book, you'll let us know what you think of it. We're hoping that it will be available in early summer.
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Footnotes
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1 Ah, yes...that reminds me of a post...