Tag Archives: Alzheimer’s adjusting to change

Marking Ralph’s Alzheimer’s Six Years In

brain

Ralph usually has his annual cognitive check-up in July, but not this year. Because of Covid we have yet even to meet with our new neurologist.  After several rescheduling, our telemed introductory appointment is now set for the end of August and obviously won’t include intensive testing (at least I hope not—Ralph testing by phone would be a nightmare; zoom is going to be challenge enough).

Gauging where Ralph sits on the continuum these days is not easy. Between his hospital stay and slow recuperation, the long preparation for our relocation, the actual move one day before Louisiana went into quarantine, our new home/life under Covid, and Ralph’s anxiety in adjusting, not to mention my own, I have lost perspective. 

Last year’s check-up was uneventful, so uneventful that I wrote no more than a sentence about it in my journal. I had been concerned that Ralph seemed a little fuzzier in daily interactions but he scored pretty close to what he’d scored the previous years. We were assured he was maintaining a steady but unusually slow progression.

By then I was already house-hunting, and our practitioners felt we were moving at exactly the right time, with Ralph was still able to adapt and adjust to a new place.  I remember discussing that I should teach him the route to the nearest stores and coffee shop, then make sure he carried good, explanatory ID and introduce him to storekeepers and others in the neighborhood so they’d know his situation in case he got lost on a cigarette run. 

Fat chance. In the five months since we moved here, Ralph has taken one brief walk with me three blocks around the corner and back. Cigarette runs are unnecessary because he has forgotten smoking all together, thank goodness, and he has absolutely zero interest in leaving our porch. He has been to dinner at my daughter’s house once, seen his internist once and been to a hospital lab for blood tests once. Otherwise he has been in the house. We did spend a week away with my daughter’s family at a house with a pool to escape the heat, making no stops on the way and never leaving the house once we arrived saw how few others were wearing masks; Ralph enjoyed watching the rest of us splash around though he didn’t dip a toe in the pool himself, preferring to follow his usual routine of wake, eat, nap, eat, nap eat, bed.

But does his increased inactivity mean anything under the circumstances. He seems to function fairly well as long as he sticks to his rote routine, which is not that different than it used to be. The big change is swapping in BoyRalph visits for cigarettes, a clearly positive change. 

The less positive changes are all in the gray, hard to decipher margins.

He has never returned to a life list. He had been getting sloppy about following it and then he was so out of it during his recuperation from the blood infection, and so helpless.  Now I don’t trust him to mark thinks off. Or remember where the list is Or maybe the truth is that I find it easier to give him his pills myself, to tell him to shower, to track his meals that I would to nag him about the list plus the actual behaviors it tracks. He can still make a sandwich for himself at lunch but often asks me moments later if he’s eaten yet. I’ve also taken over feeding his dogs, a minor chore he used to like but never thinks about now. I worry that I’m coddling him, but then I try to stretch his world by asking him to do a minor chore like takeout the recycling and he gets slightly but noticeably befuddled.

He hasn’t paid attention to the world for a while, but now he seems to have lost his visual acuity a certain ability to react and judge. I’ve been filling bookcases the last few days and he doesn’t notice the difference between objects arranged on a shelf or placed there helter-skelter to get out of the way. In some ways those shelves are like his thought process, a random organization of discrete thoughts. He doesn’t always button his shirt correctly–true, neither do I on occasion, but then I am mortified; he could care less. 

But I need to take into account that everyone’s memory is worse these days. Everyone is a little depressed and a little disconnected.  A little spacier than usual. A little sloppier. Where does Covid Brain stop and Dementia begin? 

Thinking about that way, I tell myself that nothing I’m describing here about Ralph sounds that much worse than a year ago. But it is worse. I just can’t articulate or even pinpoint the deeper shift–a letting go, a deterioration. Not only of remembering but in comprehending. Conversation is gone which is sad. More depressing, so is my trust in his reasoning, in his ability to care for himself, to think clearly. Less than a year ago, I was able to leave him with his life list for days at a time. Now I am afraid to leave him alone in the house for more than an hour or two.  I’m afraid that is a marker more important than any test. 

Future Ready? Not Quite Where Alzheimer’s Is Concerned.

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I have not posted much recently because I’ve been caught up in a flurry of moving preparations (although the move is months away), arranging repairs and renovation at the new house, starting the process of getting rid of stuff at the old. And in that flurry I have probably not been paying as much detailed attention to Ralph as usual. But we just spent half an hour together in my car after dropping his car to be serviced. In that time we had this exact same conversation close to ten times, approximately every two to three minutes:

What else do we have to do today?

Dr. Ling at 1.

What time will the car ready for us to pick up?

They’ll call us when it’s ready.

Should I leave the dogs locked up?

Yes, because we have a doctor appointment.

 

I’m used to the repetition of course. But it seems to have become more intense lately. I casually asked him whether he’d noticed any changes in his memory.

No. Have you?

Yes, I said then caught myself so added to soften the blow,

But then again my memory is worse too.

In fact, it is worse and I worry frequently about a factoid I read early on—that Alzheimer’s caregivers are statistically more prone to develop Alzheimer’s than the general population.  Every time I lose my keys, cell phone, or someone’s first name I do panic a little. And to my dismay, those occasions are increasing.

But Ralph loved my answer.

Well, that’s not going to be good, he laughed. We’re going to be rambling around the house saying “Who Are You?” to each other.

Yep. I forced my own laugh, thinking of the changes I am making in our new house to make it both wheelchair accessible and generally easier for caregiving down the road. Ralph is not ready to think about that possibility in a real way, but I have to. Just writing that makes me realize why my anxiety level has been high and why I have been avoiding posting here—the act of moving brings our future into stark, unavoidable relief.

Ralph’s Ready to Move: A Small Alzheimer’s Victory Worth Celebrating

 

house key

So Alice, are you excited about moving?” Ralph asked last night striding into the kitchen as I was dropping corn into a pot for dinner.

Yes, sure.” I said carefully keeping my eyes on the pot, not daring to ask him the same question back, afraid what he might answer. (Also, to tell the truth, my own eagerness to move is mixed with plenty of anxiety I don’t share with him about the practical details and emotional upheaval involved.)

Well, I think it’s going to be great. I’m over the farm. I’m ready for something new.

What? Did I hear him right? Going to be great? Over the farm? Something new? I listened as he went on to say how much he was looking forward to spending more time with BabyRalph and his big half-sister and looking forward to doing things in Nola.

Was this enthusiastic guy Ralph? My Ralph who greets every suggestion of an activity, whether dinner at a favorite or a visit with his oldest friends  or a call to his children, with resistance? Whose most positive response afterwards is usually “It was okay“?

Yep, that Ralph. He actually is showing a new energized interest. He is choosing to be happy not scared.

I admit I am patting myself on the back a little for handling this major change better than I thought I could. For waiting until the time was right, for slowly readying Ralph for the idea, for involving him in the decision-making even if I might have chosen differently, for spending time each day showing him pictures until he actually remembered and got the mental reality of the move locked in place.

I may be premature in my self-congratulations; so much might still go wrong, like Ralph getting there and being miserable. But I want to share this moment because none of us—carers and carees both— congratulate ourselves enough for all the hurdles we manage each day. I am/we are busy worrying, second guessing and struggling to maintain against the tide of Alzheimer’s, whether it is coming as a slow undertow or massive waves. But facing incapacity, managing meds, making a quick or deliberate decision, swallowing impatience, struggling with frustration, facing grief—it’s hard to remember these are efforts that deserve to be applauded.

So here’s to all we do right despite ourselves! clapping.jpg(And tomorrow when I am back on the dark side, annoyed and impatient, you can remind me what a happy Pollyanna I was today.)