Two years later, the string of change just keeps getting longer

The first post at this website appeared March 9, 2022. Every week in the two years since then I’ve reflected here on my life with my wife suffering with both Alzheimer’s and Parkinson’s diseases. The journey is changing me, even as the progression of the diseases is damaging Evelyn. This anniversary prompts me to ponder how.

From surprise to resignation

My support group facilitator advises us to “Expect surprises.” I’ve never forgotten her counsel, but I realize now it took me quite a while truly to embrace it. I was so naïve and ignorant at the beginning, facing each new surprise—each compromise, every loss—as if there wouldn’t be more.

But the string of change just grows longer, and these days I’m hardly surprised any more. (I’ll admit I was shocked one night last week to find Evelyn struggling to climb out of the deep soaker tub in our bathroom! No matter what I do to mitigate fall risk, she finds new ways to tease trouble.)

Nowadays I’m more likely to shrug off a new or worsening symptom, to face each change in our routine as something to be expected. But the drip, drip, drip of decline is beginning to take a toll on me.

From sad to weary

Early on, I tended to be undone by each new change. I described so many of them in this space. I wept and wrote about the weeping. I confronted grief and experienced with searing certainty the fact that grief doesn’t wait for death before it washes over those confronting loss.

I’m coming to realize grief will continue. And the burden of that certainty weighs heavy on me.

“This will get worse,” a visiting physical therapist told me. I know that. I KNOW that, but as the list of difficult or unseemly duties lengthens, my sadness is almost dulled. I feel myself getting weary.  

From new normal to nothing normal

I’ve observed in myself and some other caregivers a compulsion to hold tight to the past. Family traditions—how do we celebrate Christmas, what do we serve at Easter, when do we go to church—die hard. Daily rituals—when we eat and what, how we bathe and when, what we wear and where—are maintained even after reality dictates change.

Early on I faced upsets to our normal as if the changes were creating a new normal. But today I’ll say we have no normal. Something is different almost every day.

Our friend Karen brought Evelyn a “busy bucket” full of activities. Evelyn liked the garden gloves with the textured palms.

At first I was proud of myself for welcoming a visiting caregiver one afternoon a week. Later I thanked God with tears for a friend who wanted to come another day so I could continue my volunteering. Then I added a third new friend to be here on yet another day, even though I wasn’t sure I really needed her. Soon I wrote proudly I had accepted help here three half-days each week.

But last week I had outside help all seven days. This week three or four different caregivers or friends will be here parts of six days; one of them prepared dinner for us Monday. We have appointments with two different doctors, two more from a physical therapist, and two besides that with an occupational therapist. I’m talking with two different care communities about the possibility of a respite stay for Evelyn. My calendar is filled with more appointments and reminders than it was when I was working.

Our friend Tory snapped a picture of Evelyn on their walk in the beautiful sunshine yesterday. The gait belt provided security for both of them.

I’m experimenting with a new drug prescribed by the neurologist. A visiting physical therapist gave me a handwritten list (filling two pages) of ways to engage Evelyn; many of them had never occurred to me. I’m evaluating food choices and trying devices to help Evelyn navigate her dinner plate.

I’m monitoring symptoms from Evelyn’s UTI we discovered last week. We’re thickening her drinking water and remembering to keep a supply of thickened water ready in the refrigerator.

And constantly, constantly, we’re monitoring her every movement to prevent another fall. (I’m wondering if I should cover the bathtub.)

None of this was on my agenda even six weeks ago. Documenting it all here forces me to realize the situation will keep changing. “Take care of yourself” is the advice I receive at every turn. I’m trying, but even that spurs an added list of goals and duties and appointments.

A young child needs some sense of stability at home—some knowledge of what to expect when she gets home from school, what we do for dinner, how Dad will react to me when he walks through the door.

An old man needs a similar kind of order. When I began this journey, I never dreamed how challenging it would be to achieve it.

From self to service

From the outset I’ve worried this blog would sink into weekly whining, that readers would tire from encountering yet another account of “Here’s how hard my life is.” Despite assurances from several that I’m doing better than that, I’ve come to a humbling realization: I’ve spent quite a bit of energy the last two years thinking about myself.

I’m trying not to stay there. I’m trying to think first about what’s best for Evelyn. I’m trying to imagine what the world must look like through her eyes. I’m trying to remember all she did for me and all she would do if our situations were reversed.

I’m trying to remember all she would do for me if our situations were reversed.

I’m coming to feel satisfied with cleared kitchen counters, a new stockpile of disposable underwear, and a sparkling, spotless toilet. I cherish her smiles in the morning and her empty plate after she’s enjoyed all her dinner. I chuckle in the afternoon when she sneaks a cookie or a piece of chocolate.

When I settle into bed and she has settled too, breathing deeply into her CPAP mask and lying still beside me, I feel good. Very tired, but good.

I’m pretty sure that wouldn’t have been enough to satisfy me two years ago.