One of the great things about a good marriage is the feeling that you have a partner in the effort it takes to get through a day or a month, someone to help shore up the scaffolding you’ve thrown together with Q-tips and super glue.
Even when it all pulls apart, when the boss shuns you at the company picnic and your own kids give you the silent treatment, you’ve got someone to commiserate with.
You’re a team, and you’re making this mess together.
Alzheimer’s disease changes the dynamic. One of you supports the other, and you have to move ahead with care and stay close.
I spent last weekend in Clinton, Massachusetts, helping my sister put up insulation and wallboard in one of the rooms of the old house she bought a year or so ago.
I spoke with Bella on the phone a couple of times. When I’m around, she and I work through the little emergencies — the lost keys or glasses or pills; the mystery phone calls; the moody bunny or dog. If I’m at work, she can call, and I’m only a few minutes away.
But when I’m three hours away and busy and not coming home for the night, it’s harder for her to sail past little obstacles.
On Saturday, she kept asking when I was coming home on Sunday.
“Not till dinnertime,” I said.
At lunchtime on Sunday, she told me what a bad weekend it was for me to have gone away. We were having the ceiling of our family room repaired and the roof over our porch replaced, and even though we hired a professional, she wanted me around.
“When are you coming home?” she said.
Remaining calm is one of my duties now — shrugging when something can’t be found or remembered, smoothing over anxieties.
Soothing and sympathizing is what I do a lot of these days.
Raising my voice and waving my hands are no longer in my repertoire, although they used to be. I’m a better person, now that I have to be.
Sometimes, for no obvious reason, I feel exhausted.
I can’t muster the motivation to do easy and necessary chores, like paying bills. On Tuesday, I had to call the bank, begging for a late fee to be waived.
The inexorability of Alzheimer’s can lead to a fatalistic feeling about the future. Why try? Is there a point?
It’s an attitude I dislike in myself, but I have to put up with it, like I have to put up with the disease itself.
Bella handles it better. She cried recently after struggling with the mahjong game she plays on her iPad, but the next day she resolved that she was fine.
With reasons to mope, she refuses to stay down.
We had a bumper crop of grapes this fall on the vines that grow on our fence, and she made thick, tart, sweet jam from them. We’re going to send jars of it out to relatives, along with the thick, sweet, bitter kahlua she makes every year for the holidays.
She has the pets for reassurance, too, and she immerses herself in affection for them.
“Look at him. Look at this beautiful boy. You have to give him a pet. He needs some attention,” she’ll say, when I walk into the family room, where she is down on the floor with the bunny.
“Isn’t she a wonderful girl? She’s so smart. She’s human-like,” she will say as she strokes the side of our dog, Pepper, who is sprawled out on our bed.
She clings to what she loves and wrings out the sweet with the bitter. Her world may have gotten smaller because of the disease, but her heart is still large.
We are being crushed by this, each day another stone added to the weight that is bearing down.
I probably would buckle, but then I see Bella, finding amid the struggles whatever is positive and a pleasure, and I have to be there with her. I have to try, because that is the point.
Alzheimer's Chronicles with Bella Doolittle
Read The Post-Star's ongoing series looking at early onset Alzheimer's disease with Bella Doolittle and her husband, Projects Editor Will Doolittle.
When we met, Bella was working three jobs, caring for two kids and commuting between two North Country communities an hour apart.
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.