Tag Archives: donezepil

Cognitive Impairment and Contentment, An Odd Couple

Caregiver/Spouse Issues, Uncategorized, , , , , , , , , , , , , ,

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Ralph and I have our best conversation while driving, the same way my kids and I did, and for the same reasons: we have each other’s undivided attention and we can’t escape.

So of course I was maneuvering my way through rush hour traffic the other day when he brought up his concern that his IQ has dropped seven points since what it was when he was a boy—this statistical tidbit from his first diagnostic testing lodged in his brain three years ago; he’s brought it up occasionally ever since but rarely so bluntly.

I responded that most people’s IQs probably drop as they get older, then added as an afterthought (how I tend to break bad news) that his memory loss has probably made his drop worse. He nodded. When I used the term Mild Cognitive Impairment, he flinched, but only slightly. (We don’t use the word Alzheimer’s aloud in our house.)

He brought up how well his medications Namenda and Donepezil have worked. He also said he was wasn’t worried that eventually they might stop working as well because his doctor had assured him that there will be new drugs in the process being discovered and he can take them when these stopped being effective—I don’t recall the doctor saying that exactly but I didn’t contradict him because, after all, who knows?

Then he took a puff of his e-cigarette and said, “Anyway, I’m content.”

“Did you say content?” I asked.

“Yes, I am very content these days.”

I could tell he meant what he was saying, not “fluffing the goods” as he likes to describe people whose stories he doesn’t believe. I felt glad for him, and definitely relieved.

But also, I have to admit, I was a bit jealous. Ok, a little resentful too.

Because I am not content with my life these days. It’s fine to be told what a good, caring wife I’ve become, but it’s kind of a backhanded compliment coming from friends with exciting careers going full steam ahead. Not that my career was ever that full of steam, but my ambitions have flagged. I find myself drifting along, adjusting my rhythm to Ralph’s, wondering if my own days of productivity are over along with his.

I’d rather blame the heat. Maybe once the temperature drops below ninety I’ll be full of focus and energy again, ready to care for Ralph and myself with equal vigor. I’m going to borrow from Ralph’s new playbook and assume the best….

Reminders of Alzheimer’s Reality

Support and Research, , , , , , , , ,

This must be my week for videos. A few days ago the leader of my local support group sent this three-minute video About Alzheimer’s, from the Alzheimer’s Site blog,  tracing the changes in a person’s brain during the course of Alzheimer’s.

The film follows the areas of brain cells that die off as plaque and tangles increase, not information I didn’t know but stated/shown with a matter of fact approach I find refreshing. While I have to say that Ralph’s case does not follow the pattern in the film exactly–his memory for language has not been the first area compromised as the film suggests—the visualization and concise explanation are useful. I can imagine returning to watch the video from time to time to keep me grounded in the scientific reality I sometimes (perhaps willfully) forget.

Meanwhile at the group meeting yesterday, I was reminded just how different everyone’s situation with dementia is, and how lucky I am, so far. I attend rarely because the meeting conflicts with my Thursday morning Pilates class—and frankly I depend on that 45 minutes of intense concentration on breathing and stretching and keeping my shoulders out of my ears—but class was cancelled at the last minute and I was already walking out the door so why not.

It was a good meeting. Honest give-and-take, practical information. In the other group, all married couples, most of the spouses are still borderline Mild Cognitive Impairment like Ralph, but in this group the caregivers seem to be dealing with parents and spouses who are at later stages. One woman, “Jane,” mentioned that her husband has recently had to be moved into a care facility

When the meeting ended, she and I began to chat. It turns out her husband is 67, Ralph’s age. Okay, I thought, he must have started having symptoms earlier. Then she said he had been diagnosed exactly two years ago. Around when Ralph got his testing results.

I teared up for the first time in two years. How lucky Ralph and I are compared to others struggling with Alzheimer’s. And how cocky I have been in my fool’s paradise. Thanks to Namenda and Donepezil (plus a generic version of  Lexapro for anxiety), Ralph is holding more or less steady, but suddenly the reality of these videos and the stark contrast between Ralph and Jane’s rapidly deteriorating husband brought me up short: This is real life and Alzheimer’s isn’t going away.

So this when morning Ralph turned to me and said, “Coffee in bed and NPR, what paradise,”  I agreed. I’ll live in our fool’s paradise as long as we can.

Appreciating the Common Cold

Caregiver/Spouse Issues, , , , , , , , , ,

This will be short because I don’t have much time to write today. Ralph is sick in bed with a very bad cold and I am playing nurse—note, I said playing and nurse, not being or caregiver.

In the old days when Ralph was sick, I always complained, at least to myself, about what a baby he was. Now I find myself offering to make him toast and tea. I make pots of homemade chicken soup. I have skipped scheduled meetings and almost cancelled a trip Ralph and I both agree I should take with my son.

Yet I feel none of the resentment I usually feel around my never-ending sense of responsibility toward Ralph.

Why? I keep asking myself until I realize that it is much easier to deal with the fact of Ralph with a concrete, physical, medical ailment. Not that the brain changes connected to Alzheimer’s are not medical or the plaque build up in his brain is not physical. But for me there is a psychological or maybe I should say magical thinking difference:

What Ralph calls his fogginess is frustrating to manage or even face because it is hard to quantify. Maybe his namenda and donepezil make a difference, maybe they don’t. Maybe I sense him losing more memory lately and being slower on the uptake or maybe I’m looking at his every sentence too closely and reading too much into his slips. I don’t know and don’t always trust my guesses.

On the other hand, a stuffed nose is a stuffed nose and a fever of 102, while serious, can be measured going up or down. The efficacy of cold medicine is uncertain but plop plop fizz fizz what a relief a cold can be. After all, we both know he will recover from it—tomorrow or the next day his nose will stop running, his fever will drop, and physically at least he’ll be “better”. His memory? Not so much.

What’s Up with Namenda?

daily life with MCI/Alzheimer's, , , , , , , , ,

Medicine is not my forte. Ralph was the one who always followed a strict regimen of vitamins and minerals. I can’t tell you how many bottles of women’s vitamins ended up half-used before I threw them out. I can’t even remember to take my calcium chews, even though they are chocolate flavored (well, a wan shadow of chocolate flavor). So I am not the best person to be in charge of someone else taking medicine. But I am now the filler of Ralph’s seven-day prescription reminder box.

Sixteen months ago, when Ralph was first diagnosed, our doctor prescribed donepezil, the generic name for the drug many newly diagnosed MCI or early Alzheimer’s patients take—the most common brand name is Aricep. No one claims donepezil cures Alzheimer’s, and the many studies on its efficacy seem inconclusive about whether it actually slows down the symptoms. But as soon as Ralph started on the drug, his symptoms stopped getting worse. And although this is not always the case for donepezil, he had no side effects.

About eight months ago, we added Namenda to Ralph’s routine. Namenda, which is the brand name for the generic memantine, complicated our schedule because it had to be taken twice a day. That second pill was hard to remember, for Ralph and me both. But again there were no side effects, and as much as he says he hates taking pills, Ralph felt the combination of Namenda, donepezil and escitalopram, brand name Lexipro—which his psychiatrist prescribed to help Ralph’s mood—was beneficial

About six months ago, a new once-a-day version of Namenda suddenly became available. Although our doctor said the drug company was manipulating the market because Namenda’s patent was running out, we were thrilled. One set of pills a day made life so much easier. I still was the one who filled the pill boxes, but Ralph became a champ at remembering to take his pills, and I got out of the habit of reminding him.

Until last week.

When I contacted our on-line pharmacy for refills, I was told there was a manufacturer’s supply problem. No renewal of once-a-day Namenda for at least a month or two, maybe longer. I called the local chain drug store; Ralph will not let me order his drugs from our independent pharmacy where the pharmacist knows him. No once-a-day Namenda was available there either but they had plenty of twice-a-day. I called the doctor’s office; the nurse said other patients had been calling with the same problem and she would check into the situation. Two days later she called back and said to go back to twice-a-day.

Bummer.

I ordered the pills, filled the boxes and told Ralph we were back to twice a day. That was Wednesday. Thursday he took all three A.M. pills but forgot the P.M.. Namenda and was asleep by the time I noticed. Yesterday, I had to leave the house early and he forgot his A.M. doses, but did take his P.M. Namenda. Today I handed him his A.M. pills with his morning coffee. And as soon as I post here, I am going downstairs to remind him, it’s time for the P.M. Namenda.

We’ll get the new/old routine down eventually but I would love to know what’s behind the sudden shortage and why we’re being held hostage by the pharmaceuticals.

Between MCI And Alzheimer’s–Treading In Place But For How Long

daily life with MCI/Alzheimer's, Tracking Changes, , , , , , , , , , , ,

Funny how one sentence can pack such a wallop. The other day I received a flattering comment from Alzheimer’s Wife who writes an elegant blog about caring for her husband with advancing Alzheimer’s. I am pleased that she like my post of course. But all I can focus on and what I keep re-reading is the second half of her sentence, “and this really brings home my life about four or five years ago.”

Will I be living Alzheimer Wife’s far from easy life in four or five years? The scary thought I mostly try to avoid bubbles up. I have read her excellent, low-keyed but insightful blog about dealing with her husband’s advancing Alzheimer’s without quite connecting it to my life with Ralph.

I don’t want to worry about what is coming. I prefer the strange complacency of MCI Purgatory where Ralph and I carry on perfectly reasonable conversations (that we sometimes repeat word for word three or four times in less than an hour), and where Ralph functions responsibly within the parameters of his (increasingly restricted) routine. Where the doctors’ warnings about what lies down the road for Ralph don’t quite resonate as long as Ralph’s tests scores hold steady, even if holding steady means treading water with the help of Namenda and Donepezil.

In MCI Purgatory I can choose not to notice small, undefined changes: how after a burst of intense reading a few months ago, Ralph now barely looks at the pile of books beside his bed; how he no longer bothers to follow the thread of most television dramas, how his favorite activity has become sitting on the porch watching squirrels with his dog—well, to be honest porch sitting has always been one of Ralph’s favorite activities, but he used to sit there listening to talk radio gathering fodder to argue politics with me. The radio is still on but he doesn’t much listen, and we never argue because he agrees so easily with whatever I feel like pontificating about.

But Alzheimer’s Wife has forced me to think about the years to come, to wonder if I should be using this time better—working with more discipline on my writing, volunteering more actively in the community, travelling. I keep making those plans but have yet to follow through.

Mostly Ralph and I live in a kind of calm bubble of daily routine, many of those hours spent nearby but apart. I write down any activities or appointments he needs to complete on an erasable board. Then, while I take care of the loose ends of our business and avoid working on my third novel, he mows grass, does the chores we’ve set together, or sits on the porch.

The one ritual that defines us as a couple, that we still share almost exactly as we did thirty years ago or maybe with improvements, is morning coffee. When we first married, I didn’t drink coffee but made Ralph’s every morning because his first wife did (or he said she did). Eventually I started drinking it myself. Then once the kids were out of the house, Ralph and I started taking turns making it and bringing each other our first cup, then often our second. Morning coffee, Ralph is sharpest and most relaxed. We watch the birds through our uncurtained window, listen to NPR rest stories, talk. This when we discuss any issue I want Ralph to understand and remember, doctor’s appointments, financial decisions, anything about our kids, lately the preparations for my daughter’s upcoming wedding.

In four or five years will we still be able to share coffee? Alzheimer’s Wife can’t answer that question. No one can. But Ralph and I giving up morning coffee together is the Rubicon I dread crossing.

What If My Memory Goes Next?

Caregiver/Spouse Issues, , , , , , , , ,

I can believe I haven’t thought of this before (i.e. remembered) while trying to empathize with Ralph’s cognitive impairment, but  I have actually experienced a similar discombobulating state of memory loss myself: a short spell of amnesia years ago after falling 10 feet down from a filled hay wagon:

I was helping Ralph gather up bales in the field of our farm. The last thing I remember is how sticky, itchy miserable I was standing at the very top of five layers of hay bales  in the old Chevy truck-bed as I declared to Ralph that I would never help him bring in the hay again.

Then I was lying on the ground, or so I’ve been told.

For the next few days I continually asked Ralph to remind me the basic facts about our lives. I don’t know what the exact questions were, but I do remember continual foggy confusion and jagged moments of panic, then the enormous relief as facts returned to my consciousness.

Now Ralph lives with what is probably a more difficult mix of confusion and panic on a regular basis and there’s no relief in sight. While  his daily menu of donezepil, namenda and lexapro keeps him stable for the time being, he knows damn well there’s  no real cure, that his lost facts are not going to miraculously return.

Meanwhile, my memory in most areas–not counting names, numbers and my car keys–is  relatively sharp.

What makes me nervous is an article I read  that people with a history of concussions are prone to memory loss as they age.  I have also read, somewhere else, the worrying possibility that Alzheimer’s spouses are more likely to show symptoms of Alzheimer’s themselves.

I would offer a link to those articles here, if I could only remember where I found them.