Memory is my issue, too. What were our days like before Alzheimer’s?

“I don’t really remember what she was like before she got Alzheimer’s,” I told a friend several days ago. And as soon as I said the words I was shocked to realize how true they are.

Sometimes with my family, we’ve tried to mark the time when Evelyn first started showing symptoms. I’ve tried to remember events, trips, visits with friends, or job transitions. When did her memory start failing her? When did she stop making decisions on her own? When did she first tell me she didn’t know where we were when we were driving home in the evening? When did her demeanor change so that acquaintances asked me in private, “What’s going on with Evelyn?”

Nagging trickle

Experts say Alzheimer’s is often present many years before symptoms show up. And at first the insidious changes appear as a nagging trickle that some might try to ignore. “We’re all forgetful in old age.” “I’m not as sharp as I used to be, either!”

Photo by Luis Quintero at Unsplash.

And once the deficiencies are labeled, often first as mild cognitive impairment, those who are close may want to convince themselves, “Well, this isn’t really that serious.” Even after a definitive Alzheimer’s diagnosis, my tendency was to see the situation as static. “OK. This is what we’re dealing with. I’ve made the necessary changes. Now, what’s for dinner?”

But the decline is inexorable. If you’re fortunate—and we have been so far—the changes are slow and not overly troubling. In our case, even though I’ve been dealing with them for probably four years, we’re still not now anywhere near a crisis.

But I realize that for many dozens of weeks I’ve been continually compensating, reminding, repeating. Without stopping to think about it, I’ve been forming new habits, taking over new responsibilities, and adding more and more items to my subconscious “don’t forget” list.  

And, honestly, today, I don’t completely remember what it was like before my current state of constant on-call.

Old pictures

Facebook memories are both a bane and a blessing. A blessing because I see in those old pictures the bright eyes, relaxed smile, and perfect hair that always characterized Evelyn. They remind me of her ready laugh, task orientation, and unflappable approach to most any problem.

Evelyn stood to be congratulated and applauded during my retirement dinner, June, 2017. Photo by Steve Carr.

I skim through the poses from past get-togethers and celebrations and milestones, and I feel grief as well as regret. Grief, because I know so many lovely qualities were present, but I don’t completely remember what it was like day-to-day to live with them. And regret? That’s the most painful part, because I realize most of what I’ve lost today I took for granted when I had it.

We’re now living a new normal, but many who have walked this path ahead of me have warned, “Don’t get comfortable. Expect surprises.” Each month’s normal dissolves to be replaced with a new set of responsibilities to remember and tasks to learn.

Rejoice in today

And so we must rejoice in today. Perhaps “seize the day” means most to caregivers of a patient with a degenerative illness.

Photo by Adam Bartoszewicz at Unsplash

Our life is sprinkled with so many good moments. Just last week we were invited for tea and cookies at a friend’s house, ate dinner with friends we hadn’t seen for two years, and enjoyed another dinner with friends we see almost every week. A long-distance colleague called to catch up with me and encourage. When I reported water in our basement on Facebook, responders hastened to offer sympathy and help. I heard Evelyn singing along with the worship songs at church Sunday, she laughed at the preacher’s jokes, and both of us enjoyed a lively discussion in our Bible class. As is usual at church, she was stopped and interrupted with hugs and warm greetings at every turn.

I want to remember

After last week’s post, one concerned friend wrote with some welcome advice and also this comment: “I heard your silent screams in what you posted.” Ouch! That was a clue that all my handwringing in that post had probably taken me past sharing to whining. And complaining is exactly what I’m hoping to avoid here.

What I most want to do is remember, and my memory isn’t as good these days as it used to be, either. I want to remember the good moments we’re experiencing now. I don’t want to take for granted all the help and encouragement I’m receiving or the fact that Evelyn’s disease is, for now at least, progressing slowly.

I’m on a journey, and I must keep walking. That’s the only way to create memories I’ll be pleased to revisit in years to come.