Category Archives: Alzheimer’s Spouse Issue

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’s Annual Alzheimer’s Test, 2018

drive thru

 

No surprise, Ralph’s subscription to Alzheimer’s has been renewed. I know the analogy is illogical but that’s how I sometimes think of his annual mental check up.

Does that seem blasé?

It’s just that every July the routine is so similar. We get to the building after a long anxious car ride, Ralph takes the standard hour long test while I meet with our Nurse Practitioner Stephanie privately, I tell her (every time) that I sense Ralph growing less engaged, Ralph joins us after his test and Stephanie checks the results before telling us that he has pretty much held steady. Some element of the test usually shows what she calls “a little slippage” from the previous year but never as much slippage as I expected or think I’ve noticed.

For instance, this year his tests results showed that compared to last year, he forgot three more words on the word retention section or two connection on the connect-number-and letters section (a test I found difficult myself when I took it as a part of Emory’s healthy aging study). Stephanie seemed less concerned about those scores than she was that he had answered two more answers denoting possible depression than he had last year. So we have upped his lexapro back to what it was a few years ago when in retrospect he seemed almost jolly.

I think Stephanie is wonderful, perceptive and caring. I think so particularly after she specifically asked if I still travelled to see my grandson; I said yes with a bit of embarrassed hesitancy, remembering a call from a friend who with best of intentions told me Ralph seemed lonely.

“Well you definitely should,” Stephanie began and in that half second before the next word I groaned to myself that she’d found me out as a caregiver will to abandon her caregivee), “continue those trips.”

So I love and believe totally in Stephanie.

But after four or is it five years, I’ve finally acknowledged to myself that the annual test is limited in its efficacy. My personal test results for Ralph were a little different this year. What I noted were two concrete-ish differences from a year ago and maybe a third.

  1. On our to Emory Ralph told me he was beginning to feel foggy more often. “Foggy” is a term he used a lot before he went on his medications way back when he was first diagnosed but has not used much since. I was a little, if not exactly alarmed, concerned. (Of course, when I brought up what he’d said in front of Stephanie, he didn’t remember saying any such thing and denied any new fogginess.)
  2. Two or three years ago, Ralph happily agreed when I suggested we pick up Cuban sandwich at a funky joint nearby that we used to frequent when we lived in the city. The next year he became less enthusiastic about the inconvenience of going out of our way to a restaurant. Instead we fell into the habit of dropping by the on-site café every time we came to Emory, which was quite frequent while Ralph was in his now defunct Merck study. But after this visit when I suggested the café, he demurred, not exactly adamant but firm. He wanted to swing through a drive-through, lately pretty much the only place he’ll reluctantly eat away from home. The Emory café is nothing special but the food is relatively healthy and I have always looked forward to that little break in our routine, a little moment of civilized social normalcy. That his unwillingness to eat in a café was upset me may say more about me than Ralph. Food has always been kind of passion. I feel the loss of eating out sharply. It was one of the few activity we always shared as a couple, both of us adventurous and willing to try pretty much anything, both of us fascinated by the culture of food, both of us drawn to both high and low cuisine. I briefly thought of insisting we go to the café, and maybe I should have. Instead I acquiesced and swung us into a Burger King. But I was resentful. After ordering Ralph his sandwich and soda, I passive-aggressively ordered only a diet soda for myself, while reminding Ralph, “I’m on a diet and there is nothing on the menu I could eat.” (Oh, please, I was starving by then dying for a greasy burger.)
  3. Bonus difference point, He didn’t notice I was upset. Me being passive-aggressive and resentful is nothing new in our relationship. It may have been the bedrock of our relationship: whenever I got passive-aggressively resentful, Ralph more than noticed and would turn surly and aggressive back. So I honestly don’t know if change number three is for the better or worse….

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.

Caregiver Admission: I’ve Stopped Following Alzheimer’s Advice

info

Lately every time I begin to read an article on Alzheimer’s, I get a queasy feeling in my gut. The article may offer an obvious suggestion, like how a caregiver should avoid arguing with the caregivee or how a caregiver should avoid making a caregivee anxious by giving too much information; these are behaviors I am already pretty good at except when I’m not. Or the article may suggest that caregivers should create more social experience for caregivees or should make sure caregivees get enough exercise, behaviors I have begun to slack off on. The article may suggest activities in which the caregiver should involve the caregivvee or suggest home improvements the caregiver should make to create a better care environment. The article may even be a kindly reminder that the caregiver should take better care of her own needs.

These articles are clearly well meaning. They are meant to smooth our lives as caregivers and caregivees. I never finish them or follow their lists.

In fact, I kind of hate them.

My hackles rise as soon as I encounter the word should. Or rather when the words should or could or might want to consider appear and I read in the verb SHOULD. As in I, ALICE, SHOULD do whatever is being benignly suggested. Even if the article suggested I should eat an extra piece of chocolate cake, I would probably react this way.

Part of the issue is my own stubborn rebellious nature. The know-it-all in me who bristles at instruction and aphorisms, looks at the organized lists and perky understanding prose and shouts inside, “I know, I know. Stop reminding me.”

But part of the problem is something else because when Ralph was first diagnosed I gobbled up these kinds of articles like, well like chocolate cake.

And I have had the same change in reaction to the never-ending slew of news pieces about Alzheimer’s research. Recently a friend sent me the link  to a study about the role of a specific gene linked to Alzheimer’s, but what stood out to me was one clause in one sentence: “…among people with late onset, nonfamilial Alzheimer’s, which accounts for 95 percent of all cases…” I don’t doubt the statistic but it shocked me because Ralph—like most of the people with whom I personally come into contact—is in the leftover 5% (earlier onset and probably familial). I’m sure the study was well conducted and offers hope, but to be honest it didn’t hold my attention, any more than the range of research coming out about Alzheimer’s.

It is a matter of overload. There is the unusual overload of information that we all are suffering through lately as we struggle  to sift through the day’s never-ending political and societal news, a chaotic, contradictory onrush that leaves so many of us exhausted and depressed whatever opinions we hold. My general distress over world events does trickle down and make me less patient and less trustful of what I read about dementia. But I also think that having wandered deeper and deeper into the forest of Memoryland, I feel a bit of been-there-done-that about most of the advice offered about the early stages of Alzheimer’s. So maybe I’m experiencing a bit of burnout too.

As for what lies ahead, I have read almost too much advice about issues I know are coming (while I’m deeply moved and driven, like the proverbial moth around the candle, to read every story I find about others coping with the final chapters of Alzheimer’s ), but I realize there are no answers to the questions that keep me up at night (like Will I have the patience to stick this out? Is Ralph’s condition going to deteriorate soon or later? What if my memory is going too?)

I find a bit of escapism is more helpful than advice these days.

So, for those who may have missed it, here is my “advice” for the day: this video of a karaoke car ride with Paul McCartney and James Corden  I don’t care where you fall on the Alzheimer’s spectrum as caregiver or caregiver, or on the political spectrum for that matter; you’ll be smiling by the end.

 

PS. Because my own reaction to advice is not necessarily the best one to have, here are some links to how to some of the advice articles bugged me but that might be helpful to everyone else:healthy life style ideas;  stimulating activities to try; disease tips; and a range of subjects from the Alzheimer’s Reading Room;

 

A Little Alzheimer’s Comic Relief

car

 

So today was Ralph’s first appointment at Emory’s Integrated Memory Care Clinic, which offers one stop shopping for his health needs and access to more resources in terms of social work, classes, and support. Ralph doesn’t care about any of that. He is just glad to stop using his current primary care doctor Dr. Andy. Andy is the wonderful doctor who diagnosed Ralph and got us to Emory in the first place, but he is also the husband of a close friend of mine and the four of us socialize in a small group of other couples every month or so. Ralph, who resists going anywhere anyway, has said he finds mixing his and “Dr.” Andy’s social and professional relationship awkward, and frankly keeping the socializing element in Ralph’s life is more important at this point.

So off we went up the highway to the big city. For reasons too complicated to recount we were driving a rental car, a rather sporty black Chevy Malibu that had a bit more zip than my own red Prius. It also had a dashboard that gave interesting data, like that I needed air in the tire because I was down to 23 pounds. This information popped about ten miles from the doctor’s office. I got nervous—nothing like a flat on the highway with Ralph along. But Ralph puffed on his vape and said not to worry unless it dropped more. By the time we reached the parking lot we were at 21. Again he said not to worry.

By then he was more worried about the doctor appointment and what would be expected of him. As it happened, very little: a couple of shots, some blood drawn, and a friendly chat with our new primary physician, nurse practitioner actually, who already had most of the information she needed at hand. She said Ralph was the bright spot of her day as patients go. He liked that and left in a great mood.

Which didn’t last long. The tire pressure was down to 15.

We stopped for air at the closest gas station we could– something new we learned today: air costs at least a dollar now, quarters only and the charges vary from $1-$1.50–before heading to pick up our oldest granddaughter. Geneva, who was raised in Namibia, now attends college in California and must divide her summer vacation time in Atlanta juggling the multiple sets of family and resulting family politics that occur when you are the daughter of a divorced parents one of whose own parents are divorced. Although we’ve always been the maybe slightly oddball farm grandparents, difficult to get to and from the city relatives, I doubt Geneva expected this drive.

In Atlanta, rush hour traffic begins early and we were stuck bumper to bumper, watching the air gauge on the Malibu drop minute by minute. In other words, a situation made for disaster, both in terms of an imminent flat tire and also in terms of Ralph having an anxiety meltdown. It would have been grim if just the two of us were white-knuckling our way down the highway, but having Geneva in the backseat turned potential disaster into rollicking adventure even when I took a turn that seemed logical to avoid a traffic jam but took us way out of our way and into another traffic fam.

“Down to 20” I’d shout.

“Wait til 18” Ralph would shout back leaning over to see the dash.

“Where is it now?” Geneva would ask in her lovely Afro-Brit-Indian accent.

“Down to 15 again.”

Then we’d sigh and laugh at the same time. Ralph was weirdly calm.

I was driving, but Ralph was the one pumping air. At our first station stop as a trio, Geneva went in to buy the cheapest thing she could to change a twenty for five dollars worth of quarters. We used them all by the end of the day.

air in tire.jpgair in tireair in tire

I called our local Enterprise twice, first to make sure we could exchange cars if we got there by closing time (“yes, definitely”), the next time to see if we could exchange cars at a closer branch since there was no way we’d make it all the way to our branch by closing time—or at all given the way the gauge was dropping (“yes, uh-oh”). Fifteen miles, four gas stations and more than an hour later, we limped into an Atlanta neighborhood Enterprise with 8 pounds of air left. The manager agreed to give us a car, his last available as it turned out. As we waited another hour for the paperwork snafus to work out, we watched him turn away one distressed would be customer after another.

Rental car agencies are filled with people who are in bad moods because they’ve had a car mishap or some other disaster that means they need a car fast. I would have expected us, Ralph especially to be in a bad mood too. Instead we were slaphappy with relief

When Ralph went outside to smoke, Geneva and I discussed how well he was handling the tension and stress. She knows her “opa” as gentle, kindly, funny and indulgent, but she has heard her dad’s stories of Ralph in his prickly prime and believed me when I said how unpleasant he used to be in this sort of situation, angry and full of blame.

Instead he was making funny jokes about the man who walked in with a pistol in his belt. “That guy’s getting a car!”—The guy did but probably because he had a reservation.

We were rolling in the aisle, but you’d probably have to be there, exhausted and high on adrenalin, to appreciate the humor.

And really that’s the point. Geneva and I have a new, funny memory to share. And what is wonderful is so does Ralph because Geneva and I will remind him every time we’re together.

When Forgetting The Past Becomes Remembering the Present Wrong

error

“So, Alice, when do we have to leave for the birthday party”

I come home at five in the afternoon to find my husband showered, shaved, and dressed in a clean shirt. Sounds great, doesn’t it, Ralph getting ready on his own?

Only problem is that the  party he is talking about is a dinner I wrote about here weeks ago. The one he clearly didn’t enjoy attending at the time.

“We aren’t going to a birthday party.”

“Are you sure. Well, why did I think we were?” Puzzlement all over his usually placid face.

“I’m don’t know. We had dinner for H’s retirement three weeks ago.”

“We did? I don’t remember.” It is almost physical, how hard he is thinking before a memory takes shape. “Oh yeah, it was boring. Well, I’m relieved. I spent all afternoon dreading the birthday party.”

“Since you’re dressed, why don’t we go out to supper?”

“I don’t feel like going out. It’s too late.”

“Are you sure.” He is spiffed up after all, and it would be good to get him out of the house and his rut. Also, frankly, I wouldn’t mind not having to cook.

“No, I don’t feel like going out anywhere.” He shakes his head, standing by the door to the porch. “You sure you didn’t tell me we had to go to a party tonight. Why would I think we were going to a party?”

“I promise, we went to dinner for H’s retirement three weeks ago. Maybe you had a dream while napping and it felt real?”

“Maybe.” He shrugs and heads onto the porch, unlit cigarette already  in one hand, beer in the other, dog at his heels. We will repeat the same conversation throughout dinner but now, clearly shaken, he needs time to himself (as do I).

The way that facts once forgotten can’t be retrieved has become our normal problem as an Alzheimer’s couple, annoying but easily handled. But now Ralph has presented me with a created, or rather mis-created memory. A new process has misremembered, twisted and reshaped a fact before lodging it in Ralph’s brain. Will our new normal problem encompass not simply a loss of Ralph’s sense of the past but a reshaping of his present reality into something unpredictable, unreliable and disturbing.

More About Working Out The Equation of an Alzheimer’s Marriage

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Ralph and I spent the last few days eating and sleeping in the same house and interacting with the same people and yet our weekends could not have been more different.

Our town faced a crisis this weekend because the same Neo-Nazi organization that marched in Charlottesville, Virginia, decided to hold a rally here. The city government felt obligated to issue a permit under Freedom of Speech laws (but foolishly did not think of charging them to compensate for the cost of such a rally to the town). In response local citizens, including me, organized responses to the rally. Folks gathered on the town square on Friday night to support the local businesses, which would have to be shuttered during the rally, and to help children chalk humanitarian messages on the walkways in the park where the Neo-Nazis would be convening. Saturday there was a peaceful protest against the rally and also a Unity Gathering, an ecumenical coming together of citizens of various faiths, races, and ethnicities.

I attended all of these events. Ralph attended none.

Although I discussed the situation as little as I could, I probably discussed it more than I should have. After all, I was embroiled and it was on all I was thinking about.

On Saturday (and probably even Friday night) Ralph was filled with anxiety. Safety is paramount to him these days. “Be Safe” is his mantra to me every time I leave the house, even if only to drive to the convenience store. And to be honest, there was reason for concern Saturday. Fortunately, the husband of a friend who was also attending the Saturday gatherings stayed with him during the afternoon. And more fortunately, the number of Neo-Nazis who showed up (40 minutes late to their own two-hour rally, by the way) was smaller than expected; the anti-racist protest peaceful; and the Unity gathering was uplifting in the best ways. Ralph enjoyed his quiet day and I ended up enjoying my very active one. By the next morning he’d pretty much forgotten there’d been anything unusual going on.

But that was not the end of the weekend.

Sunday night we were invited to dinner with three couples we see regularly. The get togethers have always fit the same pattern, Ralph always complaining ahead about having to go, and then telling me what a wonderful time he’s had afterward.

Not this time. As soon as we got in the car to head home, Ralph rolled down his window, pulled out a cigarette and announced in no uncertain terms, “I was ready to leave an hour ago.”

And the truth is, so was I. As much as I love and enjoy my friends, I was a tense wreck the whole time because I could sense Ralph’s misery. In the past Ralph has told his own stories and jokes and enjoyed the jokes and stories of the others, but he was much quieter last night. He would laugh when the rest of us laughed at a joke but I could tell he was not sure what was funny. He would be just that little bit too quiet while listening to someone’s story or some casual banter so I knew he wasn’t really following it. There was a new divide I could not avoid notice widening between him and everyone else. I found myself mediating, trying to cover for him much more than I’ve had to in the past. And it was exhausting.

I have read all the literature about keeping people with cognitive impairment as mentally active as possible, but I have slowly become less pushy. And I am facing that groups of more than three are now an overload for Ralph, especially when we are away from home, but maybe even at home.

So no more making him attend events where he is out of his comfort zone. Which doesn’t necessarily mean I will stop attending, does it? That is the equation I need to work out.