A large, quiet circle of Alzheimer’s caregivers exists probably in every community in this country.
After the first column I wrote about my wife’s diagnosis, a woman stopped by the office to hand me a book considered the bible for Alzheimer’s caregivers, “The 36-Hour Day.”
A man I knew from local politics called and offered me a book written by a local woman, Sunny Buchman, about her experience with her husband, who had Alzheimer’s.
The wife of the man who called had had Alzheimer’s, and he told me that touch might become more important to my wife — that I might find she craved that direct physical comfort — and he was right.
As things change for Bella and me, the complexities of our long relationship drift away. Almost every moment can be made better with a smile and a hug and a kiss.
I have been questing about in search of support on this path, because I know I’m going to need it.
I went to the Caregiver Support Initiative office at 357 Bay Road in Queensbury and spent about an hour and a half talking with Kim Comiskey. She is a good listener.
I asked her what the biggest emotional issue is for caregivers, and she said it’s the question of what the future holds.
It’s a hard one to answer, because Alzheimer’s affects people differently and progresses unpredictably.
But the dread of the worst of the decline hangs over you, and it’s hard to put out of your mind, because the symptoms, even if they’re mild, are constant reminders.
I talked on the phone with Judi, a woman whose husband has Alzheimer’s and who wrote me thoughtful and sensitive emails about the experience.
“There’s a kind of grotesquely sad and grueling process of this slow decline,” she said.
With Alzheimer’s, you receive many little shocks of grief as time goes on and you mourn in increments.
But Bella and I can share this experience, too, bemoaning our fate and finding the dark comedy in it.
Not everyone who has Alzheimer’s is able to admit what is happening or is sensitive, as Bella is, to what their spouse is going through.
Looking at myself, I see someone obsessed with his ordeal, and I’m not even the one who has a fatal disease.
I sigh and whine more than she does.
Other caregivers can tell you that guilt and self-doubt are common to the experience.
“I feel like it’s really important for other caregivers to really be honest about what’s happening because there’s this constant sense of failure and self-judgment,” Judi said.
Maybe success as an Alzheimer’s caregiver comes in accepting failure. Your loved one will not recover. Your life will be changed. You will not handle this well.
One thing I am finding that does help — maybe just enough — is this: You are not alone.
Will Doolittle is projects editor at The Post-Star. He may be reached at firstname.lastname@example.org and followed on his blog, I think not, and on Twitter at @trafficstatic.