Tag Archives: Alzheimer’s apathy

A Low Voltage Covid Christmas Feels Just About Right For Ralph

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It’s been over six weeks since I last reported on Ralph and me—the longest I’ve ever gone—not because so much is happening or so little, but because I have not been sure what there is to say. We are treading water though in separate pools. I find myself living increasingly my own life. The few friends I’ve made despite covid are single women. I care for my grandkids at their house. He’s not lost more ability

Ralph, now adjusted to his new meds and his docile covid self, spends most of his time sitting in a chair reading by the window in our sunroom. He seldom uses the phone and the conversations are shorter and shorter. He likes quiet, his diminished interest in listening to radio logical since he really hasn’t listened to what he hears for a while. Getting him to take walks is harder and harder. He rarely bothers to walk the extra steps to his “office.” Ralph still likes the almost-four-year-old’s almost daily visits, but pays him barely a moment’s attention before he’s back to his dogs and his books. He reads voraciously, anything I hand him, the longer the better. He says he truly enjoys the reading although he acknowledges that he retains nothing the moment he puts the book down. And he reads quickly—funny, since pre-diagnosis he was a slow reader who retained ever single word and nuance—so it is hard to keep him in books especially since going to the library is not something I’m doing during Covid.

So for Christmas Ralph received from me a mixed box set: War and Peace and The Brothers Karamazov. Should keep him until at least February. For Christmas I received from Ralph whatever I felt like buying myself, and I didn’t stint. I am wearing new pants, shirt, and sweater as I type.

The thing is, Christmas more or less brushed by Ralph this year. In the past, even and maybe especially since his diagnosis, he looked forward to our blow out Christmas celebrations with a childlike anticipation. But this year he was oblivious, which was just as well since there was no blow out happening anyway. I debated whether to bother decorating our not fully furnished house, but ended up pulling out my boxes of Santas. I bought a tree already on a stand so Ralph didn’t have to mess with it. He said it looked nice, once, and never glanced at the tree again. Which was fine with me. The almost-four-year-old grandson loved my Santas and also could stand for ages in front of the tree deciding which ornaments were his favorites. I spent evenings sipping tea in front of the tree alone with David Sedaris.

Xmas eve morning Ralph looked up from his reading to ask why I was carrying a pile of presents out to the car.

“Christmas”

“I thought we did Christmas.

“No we did Thanksgiving last month. Now it’s Christmas.”

He nodded and returned to his book, no further questions asked. But he came along that afternoon to eat Chinese take out with our daughter’s family, our watered down version of our usual Xmas eve blowout. He was patient but bored and missing his dogs so I drove him home as soon as he finished eating, then returned alone to hang out finishing preparing for Santa’s visit.

The next morning I brought Ralph coffee early because I was dying to see the grandson’s reaction to receiving the present Santa was bringing, bright yellow digger.”

“Anything on our schedule today?”

“It’s Christmas morning.”

“I thought we did Christmas already.”

“Last night was Christmas Eve. We’re going over to open presents.”

The three-year-old’s Christmas joy was so infectious that it even perked up Ralph who parked in a chair where we brought him food and gifts to open.

The next morning, it was chilly when he got up. I suggested he wear his new flannel shirt and vest.

“What vest?

“The one you got for Christmas.”

 “When was Christmas?”

 I know someone reading this is thinking, how sad. But the thing is, Ralph is very content from moment to moment. And frankly, thanks to an increasing ability to compartmentalize and ignore, so am I. At least for now.

Alzheimer’s Leaves Caregiver Fishing For Memories Too

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fishing

 

 

 

 

Ralph started the Ritalin study through Emory last week and I’m waiting to see some spurt of energy. He still lies down to “rest my eyes” at 5:30, resting them so deeply that I have to work to rouse him at 6:30 to eat dinner, after which he has his cigarette and goes back to sleep between 7:30 and 8. So my guess is that he’s been given the placebo.

Which is actually okay with me. As I acknowledged when our practitioner first said Ralph might qualify for this study, I have mixed feelings. (The future good that participation may do for others is a given but not really part of my equation.) I do not want to deprive Ralph of the chance for a more normal life or any chance to enjoy life more, and it is possible according to the nurses and social workers that Ritalin really will create a new zest for life.

But what if he ends up with more energy and zest than I have? That would be a cruel irony, wouldn’t it?  Because my energy is certainly depleted. I am not sure how much I can get away blaming my mental and physical exhaustion on caregiving.  Laziness and fear of challenge play their parts in drying up, or avoiding, my creative ambitions. But 15 years–10 as daughter/caretaker segueing, with a year or so of overlap, into five as spouse/caretaker–is a long time in what has never been a natural role for  me.

No matter, my competitive nature has turned  this worry into a positive goad.  To avoid being left in the dust, I am now revving up my energy with a new diet, more regular exercise, and visits to my therapist, whom I stopped seeing shortly before Ralph’s diagnosis when our relationship and my own sense of self finally seemed healthy.

Which brings me to my second worry, what if Ralph on Ritalin reverts back to the Ralph my therapist has reminded me he used to be: autocratic, critical, competitive, jealous. He wasn’t that bad, I laughed, but then bad memories began to surface. I could go on and on with a list of the examples of his faults and bad behavior I’ve begun to remember, and I would except just now I was interrupted by a phone call that’s thrown me completely off course….

The caller, JG, was starting out as a real estate agent when he met Ralph, then in his entrepreneurial prime. The two hit it off. , Over the years, I would hear Ralph talking to JG on the phone, explaining how to analyze values and bottom lines, offering professional advice but also yaking about fishing, another passion they shared. JG was younger and we never socialized much. But he did bring his wife and kids out to the farm for several visits shortly before they moved to north Florida. His wife turned out to be lovely—we had immediate rapport. His son, who was six or seven on that first visit, was obsessed with tractors, so he was in heaven when Ralph took him on the riding mower. (I don’t remember if they played on the tractor too.). The next visit, the boy was old enough to ride the mower himself, with a lot of supervision.

JG still comes to Atlanta regularly for business. Since we closed our business and turned the one rental property we still own over to his management company, JG has known, in vague terms, that Ralph was having some kind of problem and no longer actively involved in decision making, but he has never asked for details and I didn’t offer. He hasn’t seen or talked to Ralph for ages. The last time I talked to JG was a few years ago about a business issue. We were friendly but careful with each other.

He called today over another small business matter,. When he asked how Ralph was, I told him Ralph’s memory was holding stable.

“What’s wrong exactly. I never asked but is it Alzheimer’s.”

“On the continuum but still early stages,” I explained. “You might not even notice any change at first.”

“So he still fishes?” “No.”

“Oh, he can’t fish?” “No, he has no interest.”

“No interest?”

JG’s shocked silence was deafening. Here was someone who only knows Ralph as a man  avid about the activities he loves. I took back what I’d said about JG noticing—he would definitely register the changes  I’ve begun to take for granted.

JG began asking the questions he’d never asked. WeI had a long, serious discussion.

“I didn’t want to invade your privacy.” That made sense because I’d been vague about Ralph’s situation early on, not sure how much to share. (These days I share everything ad nauseum.)

“It is hard to imagine Ralph unengaged. He was so interested and involved. He was …” I could tell how upset, really upset, he was. “He was like an uncle… …”

I invited him visit, with his son who is now a 6’3” teenager but still loves to farm work. JG said he’s been waiting for the invitation and will make sure to come soon.

I hung up in a different state of mind from the one that set me writing this morning. I am feeling tender toward Ralph now, of course. And toward myself, realizing how tenuous my emotional memory of Ralph and who we were together, the good and the bad, has become.

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

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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.)