Some people, I’m guessing, could jump right into caregiving and its hundred and one responsibilities, embracing the role with love and smiles.
Bella, my wife, probably would have been that way, had I been the one, four and a half years ago, to be diagnosed with younger onset Alzheimer’s disease.
But I am too wedded to the idea of the way things should be, clinging to too many expectations of myself to accept the change in my circumstances with easy grace.
The first four years of this series of columns reads to me like a long cry of grief. But how much of that was sadness for Bella and her loss and how much looked inward, bemoaning the unanticipated changes I was having to make?
Around the beginning of this year, Bella and I decided to take a break from chronicling our experience with Alzheimer’s in columns and podcasts. The pandemic had something to do with it, as it heightened feelings of isolation and dread.
But, as our daughter Ginny pointed out to me, the columns had gotten hard to take — emotionally raw and, sometimes, self-lacerating. Self-pitying even, although Ginny didn’t say that.
Discussing the disease was no longer therapeutic. It depressed Bella and made me feel sorry for myself.
People are also reading…
After six months off, I’m ready to start again. Maybe it’s the summer or the easing of the pandemic. Maybe it’s the maturing of our puppy, Ringo, so he’s not such a difficult distraction.
Mostly, it’s my belated understanding that the only way I can be happy is to not only accept what I cannot change but to embrace it.
Bella is still herself. She forgets a lot of things, and she mixes up her stories, merging tales of two or more different dogs, or children, or jobs, or doctor’s visits, but in the moments we share each day with a laugh or a kiss or a shake of the head, we connect still as we always have.
“The change is constant,” Ruth Fish said, in the podcast she and Gwen Rowland did with me this week. But the time together can be wonderful.
Ruth is a nurse practitioner, specializing in Alzheimer’s, at the Center for Excellence in Alzheimer’s disease at Glens Falls Hospital. Gwen is a social worker there.
Both of them are thoughtful and funny, engaged with their patients and committed to their work. We spoke about the pitfalls of being a primary caregiver; the necessity of taking care of your own health, emotional and physical, so you can take care of someone else; the futility of debating the truth of what occurred yesterday or 10 years ago with someone who has Alzheimer’s disease; and the pleasure that can still be found in the moments of each day.
Alzheimer’s is a long-term illness that, like life itself, ends in death. If you’re partway into it, Ruth said, then you most likely have years to go, and it makes as little sense for you as it does for anyone to dwell on the end that will inevitably come.
I used to say the disease had thrown a shadow over my life. But I’m throwing it off.
“Lucky” and “blessed” are accurate characterizations of my marriage and my life. Taking all the moments Bella and I have shared, the happy outweighs the sad, and that is true now as it was 34 years ago.
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</&box_em>