Tag Archives: Alzheimer’s personality changes

“Does It Get Easier or Harder?”

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.

 

 

A New Drug Test for Alzheimer’s Apathy Creates a Different Test for Me

woman at computer

 

At our recent annual check up, NP Stephanie suggested Ralph might qualify for a study on the use of Ritalin to treat apathy.

Apathy is clearly an issue for Ralph as it is for so many others dealing with Alzheimer’s.  Or at least “apathy” is the quick way I, and evidently plenty of others, have described the increasing indifference and lethargy that occurs in those on the Alzheimer’s spectrum.

So barring a cure, finding a treatment for Alzheimer’s apathy is obviously a good idea. Sitting in Stephanie’s office, I agreed immediately that we should see if Ralph qualifies for the study. Stephanie called the clinical research nurse in charge hoping we could meet right away, but after an unsuccessful game of phone tag, she left the nurse a message with my contact info and we came home. A few days later I missed a call from the nurse. I called back. Soon we began our own game of phone tag that lasted two weeks. Then two or maybe three days ago, the nurse and I finally talked. She described a 6-month blind study requiring one daily pill that may or may not be Ritalin and a monthly visit to Emory. Not exactly demanding. While we were on the phone she went ahead and emailed me forms. I was to read them and get back to her with dates we could meet in the next two weeks.

Of course, I’ll get back to you right away, I told her as we hung up.

Except as hours and then days passed, I put off opening her e-mail.

But every time I glanced at the little red number 1 signifying an unopened e-mail on both  phone and computer, I couldn’t help thinking, Do I really want to be bothered? Is the minor possibility of improvement worth the effort?

But those questions were only a cover as I toyed with darker thoughts. Will Ralph be more trouble if he is less passive? Is it easier for me just to let him float further out to sea?

Then this morning, I got around to opening another email, this one from the Healthy Aging Study in which I participate. There were two short surveys, one on “resilience” and the other on “purpose”. Resilience was a piece of cake; I could tell my coping answers were fine. But as for purpose, ugh, I hated those questions I couldn’t avoid answering honestly—like   “Disagree Highly” with having goals I look forward to accomplishing.

I have had to face that I have the apathy problem. Or rather we both do. But I’m the one making decisions for Ralph.

So with admitted reluctance, I emailed the research nurse back …actually the emails have been flying as I write this, multi-tasking semi-whiz that I am …and his appointment for initial testing to see if he even qualifies  is scheduled for next Wednesday. I have added it to my calendar and his.

And now I actually feel much better, having passed, if barely, my test as good caregiver.

(And yes, if my overall mood does not lift, I promise I will deal with it.)

RALPH HAS RE-SIGNED or is it RESIGNED HIS WILL

last willRalph has resigned his will.

Interesting how typos work. I sat down to write about taking Ralph to our lawyer to re-sign his will but evidently I have something else on my mind as well.

And really the two are not unrelated. Our lawyer re-drew my will months ago. because I realized while driving down the highway and witnessing a car crash that I needed to consider the possibility that something bad could happen to me. Death of course. But also, what if I suffer a debilitating injury in a car crash or have a stroke, or what if my irrational fear that Alzheimer’s is contagious comes true and I disintegrate faster than Ralph? We had a standard husband-and-wife arrangement that left Ralph in charge of our finances.

Obviously I should have dealt with this possibility sooner (a word to the wise) but luckily I’m still around so I had our attorney change things up, creating a trust for Ralph and giving financial power of attorney to one kid, medical power of attorney to the other—Ralph won’t have to handle anything. I signed my new will and caught some other minor changes that were needed, but it didn’t occur to me until recently, that those same changes were needed in Ralph’s will. So the lawyer re-drew his will too and off we went to sign it.

The thing is I kept waiting, with some dread, for Ralph to ask questions about the revision, but he had no particular interest in knowing the will’s content. His concern was that we had to drive into the city and “waste the day.” Really I think his concern was that he wouldn’t be allowed to smoke in my car, a valid concern since he was correct. But he acquiesced pretty easily.

 

Because in fact he has already resigned his will. And signed it over to me. For years now I have watched a man who used to say with regularity and only half kidding, “It’s my way or the highway” devolve, giving up decision-making in first small and then larger increments: From “I’ve decided” (most of our married life) to “What is your opinion?” (starting about a dozen years ago in our second honeymoon stage to make up for the fact that we fought all through our first honeymoon) to “Oh, you decide but be sure you….” “Oh, you handle it, but have you considered….” and “What did you decide and are you sure you made the right choice” (in the last years preceding and in the first years after his diagnosis) to “You decide…” and “You handle…”  His main conversation starter these days is actually “Explain to me again what you decided about…..” (multiple times in a row whenever a question gets onto his mental loop), but mostly he doesn’t start conversations about anything involving decisions, big or little. And he never suggests. As for reactions to my suggestions, that’s a bit more complicated. He goes along with pretty much whatever I tell him, no small responsibility. He retains a bit of stubbornness when it comes to leaving his comfort of the farm (“I don’t want to go out to dinner” “Do we have to go to the beach with the family” “Oh not the doctor again”) but for better or worse he’s even becoming more malleable about being ordered off the front porch. I am not sure if that’s a relief or a worry.

Ralph’s Night to Shine (And Forget Alzheimer’s)

meal

It never fails. Whenever I start complaining about my life as a caretaker spouse, events remind me to shut up, stop griping and recognize the good stuff.

Case in point, we had house full of guests last week:

My 20-something nephew living with us for the summer while doing an internship; my 13-year-old (step)granddaughter was having one of summer weeks at the farm; and a photographer from out-of-state here to defend (with my support) her local portrait project, which was being attacked as too controversial by some members of the project’s sponsoring art organization board on which I serve.

So the five of us were sitting around the dinner table, one of those big group meals at which Ralph and I used to excel and which I tend to avoid now because I hate sitting beside Ralph as he withdraws into silence unable to follow the thread of conversation. What I usually feel is a mixture of guilt that I am not finding a way to include him and impatience that he is ruining my enjoyment. (And the truth is it is my responsibility to make him comfortable in a variety of situations and I sometimes chafe under that responsibility.)

What I felt the other night was, well it was envy. Ralph was so damn charming that the three others at the table—for whom I’d been working all day to entertain in different ways—were enraptured. Even the 13-year-old, jaded as only a 13-year-old girl can be—sat up straight an listened with fascination as Ralph told his stories about meeting MLK Jr. The photographer leaned over to whisper how handsome he was. My nephew acknowledged that Ralph scared him when he was a little boy. “You weren’t mean, but you were stern,” my nephew said. The 13-year-old smiled slyly because the Ralph she knows is a pushover softie. Ralph agreed with her.

My envy reminded me how I used to feel in my introverted twenties when I was in a group setting with Ralph and he was the energy force around which everyone orbited. In those days I was obviously drawn to his charisma, if a little jealous of sharing it with others.

This envy was oddly refreshing. I admit I kind of like my new role as the social butterfly in our marriage but it can be tiring. I have become so used to being the one responsible that it took a moment for me to relax and let Ralph hold the limelight for a change. Once I did relax, what I really felt was wifely pride in Ralph’s charm. And even a little wifely love.

(But I can’t get too Pollyannish because the next day, exhausted by his social efforts, Ralph was more foggy than ever.)