Caregivers look at the light to survive the dark
Put public bathrooms in downtown
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Whenever I write about my experience as an Alzheimer’s caregiver for my wife, Bella, as I did last week, I am flooded with kind, generous and thoughtful responses from readers.
This attention reassures me in an effort for which I have no guide.
These days, I often write about the time Bella and I spend together, the walks we take and the occasionally funny conversations we have. I mention the ways we have figured out to cope with the disease — Bella takes long walks around the neighborhood to relieve her agitation, for example, while I track her on her phone.
All of this may give the impression that I believe good things can come out of this experience, despite its manifest hardships.
I don’t believe that.
Alzheimer’s starts out bad and gets worse until the afflicted person dies.
A month of being an Alzheimer’s caregiver feels interminable, and the disease lasts for years. Its development is tortuous, its symptoms unpredictable. It is impervious to treatment.
During my career in journalism, I noticed that people who survived horrific events, sometimes with lasting damage, would brag about their good fortune.
“The grizzly bear picked me up in his jaws and shook me like a rat,” they’d say. “I needed 539 stitches, and I can’t lift my left arm. I was lucky.”
Alzheimer’s is a delicate bear. Its attack lasts years, the damage compounding until the exhausted victim dies.
When I write about lovely walks Bella and I have taken or mention things she said that made me laugh, I’m picking out the pinpricks of light in a dark sky. If they shine brightly, it’s because there are so few of them.
I’ve avoided talk of the nitty-gritty of caregiving, the near-constant worry that Bella could fall down the stairs or step in front of a car, the impossible effort to make her feel useful while I try to get things done around the house, the challenge of paying attention to her as she tells a story that makes no sense and I’ve heard dozens of times.
I dress her and undress her, make our meals, shop with her, shower with her, handle her pills, pay the bills, feed the dog and the bunny and the fish, water the plants, vacuum and mop, load the dishwasher, change the sheets and pull up weeds, and none of that is hard, except I have to fit it in around talking to her and finding things for her to do, because if my attention lapses, she’ll get quiet and leave the house without her phone when I’m not watching.
I choose to care for Bella this way. I want to do it, but I don’t celebrate it. I try to survive it.
I’ve often described the disease metaphorically: Alzheimer’s is a glacier, its advance imperceptible but unstoppable; caregiving is a weight, light as a pebble at first but one pebble heavier with each new day.
But I want to say something more direct: Alzheimer’s is awful, for the person who has it, for the caregiver and for everyone it touches.
I and the many other caregivers out there may well choose to focus on the beautiful bird we saw, the delicious cake we ate or that flash of understanding we shared with our loved one before the veil again descended.
That’s how we make it through the days. The other option is despair.
Wanderings
As downtown spruces up, couldn’t it use public bathrooms? Whenever I see a little city with public bathrooms — like Saratoga Springs — I think how civilized that is, and how smart. Having restrooms in a convenient, downtown spot for public use will leave visitors with a better impression of a place. It’s no fun having to search for a business that will allow you to use their restrooms.
Lake George has public restrooms, too. So do Saranac Lake and Lake Placid. What these places have in common is a lot of visitors, especially in the summer. Glens Falls can be such a place, too.
The market square now being built on South Street does not include bathrooms, which is a shame. Apparently, space is limited. So why not build restrooms nearby? I suggest the corner of South and School streets, now a grassy, empty lot. It seems perfect, and I think Ringo agrees.
May seems to have been on the chilly side so far, but that may be because my expectations have been skewed by global warming. This weather may be warm for May, for all I know. But Bella and I and Ringo were glad Spot Coffee this week began putting its tables out on the sidewalk. It’s a great perch for surveying the downtown scene.
On our way home from a trip to Lake Placid on Thursday, we stopped at the Adirondack Corner Store, along Route 73 as you leave the village and drive east toward the Northway. As in a lot of resort communities (Lake George), reasonably priced good food can be hard to find in Lake Placid. But the Corner Store has excellent sandwiches — the walnut-cranberry chicken salad on sourdough bread is great — at prices that don’t remind you you’re in a tourist town. The store has a whole lot else beside sandwiches — it’s surprising how much is packed in this small space. You don’t have many options between Lake Placid and the Glens Falls area, so if you’re feeling peckish on your way home, stop here.
Been where you are. “Just keep swimming.” Otherwise you drown. ✌️💕
Hi Will. I "share your pain".
My mother suffered through Alzheimers for year, before suffering a stroke that left her barely conscious for most of a year before she died, 12 yrs ago.
I am now the primary caregiver for my special-needs brother, who recently received a kidney transplant.
At least with my Mom, we were able to find a facility that specialized in Alzheimer care.
I have not found similar resources (yet) to help with my mother's care.
The responsibility frequently is overwhelming.
I'm not writing to complain, but to let you, and others, know that there are likely numerous people in you/my community who shoulder burdens like yours or mine every day.
If you know someone in a care-giving situation, please reach out to them, not once but repeatedly. Every time you can take one tiny task off their shoulders, they will feel like the weight of the world has been lifted.
I see you, Will, and I'm praying for your wife and for you.