Tag Archives: Alzheimer’s acceptance of reality

“Does It Get Easier or Harder?”

Accepting one's Alzheimer's, Alzheimer's and illness, Alzheimer's Spouse Issue, , , , , ,

Does it get easier or harder? asked my friend Jane, who writes the daily blog MemoryforTwo. Her husband is where Ralph used to be a few months, or is it years, ago.

Not having a memory is not so bad, Ralph said to me last night as he watched me wash the dinner dishes. (He doesn’t remember that a few years before his Alzheimer’s diagnosis, perhaps presciently, Ralph half-jokingly founded the Lower Expectations Society after therapy helped him realize his demanding nature worked against happiness. LES became his battle cry every time something went wrong.)

In a way it has become easier, in that I have accepted the reality. I answered Jane. But life keeps narrowing.

I remember when I was going through what Jane is now. The daily shock to my system with each change in Ralph I had to face and learn to accommodate. Who is this man? I’d ask myself.  How do I explain him to others? How do we go forward? It felt like being knocked down by one wave after another breaking against me. I’d stand up back up only to be knocked down again. Now the water is deeper; I am at the spot in the water where I can still stand but where the waves are not cresting. 

 Ralph is not typical. His diagnosis was six years ago. By now most people on the Alzheimer’s spectrum have moved further along from MCI deep into Alzheimer’s. Ralph’s slide has been so gradual that I feel boring when I describe our life now. The vise we’re in is tightening but slowly enough that we barely notice.

So acclimating has been dangerously easy. Ralph, originally so anxious and frightened by his memory loss, has been content for a long while. And as more and more memory holes appear, he becomes only more passive. What do I need to remember when I have you? he also said last night. I had a flash of anger; after all I was washing the dishes while he sat watching, just as he had sat watching me prepare dinner.  

But the truth is more complicated. As his short term memory worsens, I expect less from him. Our life together does narrow. But I am minding that less. In some ways Ralph is my excuse to relax into myself a little, to let go of some of the expectations that weigh me down with perpetual guilt–like why don’t I follow a stricter exercise routine or finish another novel. 

The truth is that I am getting more selfish daily. And I don’t mean that in a bad way.  I am typing from the turquoise chaise lounge in my new home office filled with books and pictures and a view of treetops and sky. I makes plans and decisions—how to decorate this new house, where to go with the family bubble for a covid-safe July 4 outing—according to my preferences. I cook dinners I want, and sometimes (this is a bit hard to admit) I keep a best bit for myself because I know Ralph is basically indifferent as long as he gets his nutty buddy for dessert. Of course he is always a major part of every equation: his safety, his personal comfort, his dogs’ comfort.  

I take what selfish joy I can for myself and give what comfort I can to Ralph. But I don’t bring up to him the truth I can’t get away from, a truth he has forgotten and I see no reason to remind him of–that his condition will get worse. And when it does, I don’t know how I’ll feel.

 

 

When An Alzheimer’s Study Tanks

Alzheimer's Spouse Issue, Uncategorized, , , , ,

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We got the news last week that the Ralph’s Merck study is shutting down. I got a text from the nurse at Emory to say Ralph should stop taking his blue pill but to come in for the appointment already scheduled for this week—and to bring all unused pills with us.

I was a bit startled. Not sure how I should feel but surprisingly upset. Ralph has been holding steady for so long, and I assumed the little blue pill was at least a large part of the reason. But he has not enjoyed the study. His visits, at least two hours being prodded and tested plus an hour each way to and from, always leave him feeling tuckered out and slightly woozy.

I liked Ralph being in the study. Self-centeredly, I enjoyed have a chance to talk (i.e. whine about Ralph) to the social worker whom I like as a person. Despite Ralph’s complaints, having an excuse to take him for an outing always seems like a positive thing, and gets harder and harder. And I liked that he was being checked regularly, that someone would catch any problem sooner than later.

So many studies are going on with Alzheimer’s, and there is always a new breakthrough on the horizon that seems to fizzle. The reality is that I didn’t expect this study to make a difference for Ralph but I was thinking about any children/grandchildren who may have inherited the gene. I figure whatever happens with Ralph is going to happen at this point and we’ll deal with it.

The nurse and I agreed that Ralph is probably not likely to participate in other studies. For one thing, his inability to have an MRI locks him out of most.

What saddens me, I guess, is the sense that another door is closing.