Tag Archives: Dementia

The Business of Remembering…A Sense of Time and Identity

The business of remembering what you did that day, or what you might want to do the next, I think, is essential for creating an overview of your life – that overview is what fuels plan-making and that ties in deeply with identity.”


In case you missed it, this comment was made about my last post by  Jabberwalk, who writes with great insight and honesty at her own site Caregiving in the Forest.I can’t stop mulling over the implications.

Time is the trickiest part of life for Ralph. Almost the first thing he asks each morning is what day of the week it is. Sometimes he remembers what he did or parts of what he did yesterday, sometimes he doesn’t. Often he misremembers. He doesn’t like the confusion his lousy short-term memory breeds, but he lives with it by asking for a rehash over and over hoping for clarity that seldom comes.

We all fear the loss of short-term memory, but the problem of future memory is in some ways more troubling. When Ralph looks forward to what comes next, what he seems to see is an anxiety-producing obstacle course. Since he can’t hold on to the facts of place and time, he becomes increasingly anxious each time he asks again Where? but mostly When? The issue for me becomes how much information does he need, how much is a burden.

Not only do I make the scheduling decisions, but I also end up structuring what he thinks about that schedule, and therefore what he thinks about period. In other words, I am taking away or at least shrinking his overview.

His sense of identity has certainly shrunk. Yes, he is an increasingly passionate dog lover because dogs demand so little and remember on their own. And he remains a husband, not an equal partner perhaps but genuinely grateful to his wife for filling in the blanks. He is still a father too, although his memory of the kids’ childhoods is sketchy and he keeps up less and less with their adult lives because he finds tracking the details so difficult. He was glad to let go of his professional identity and hand me that responsibility early on. While he can be charming in social encounters, his interest in friendship and being a friend is limited by his difficulty remembering who people are, their names of course but more importantly, their connection to him. While still capable of moments of remarkable perception, he is no longer interested in being an intellectual or armchair philosopher because it requires remembering a train of thought.

I remember lots of trains of thought. I carry around layers of overview based on the different roles I play—wife, writer, friend, woman, businessperson, spiritual seeker, reader, political thinker, mother (Note that caregiver is not on this quickly written list—a Freudian slip I just noticed myself).

These roles operate within and are influenced by the various ways I frame my time. There is the constant background hum of long-term, generalized plans still under construction (i.e. How much longer until we need to downsize? What are my options if/when needs professional care?). More immediately, there is the weekly erasable-board calendar that Ralph and I live by day-to-day; there is the monthly wall calendar as well as the one on my phone. And there is the semi-conscious minute-by-minute and hourly tracking most of us fold into our routine (unless we are on the Alzheimer’s continuum and struggle to remember whether we ate lunch already) without much conscious thought.

But what has always been almost second nature, like making coffee as soon as I get up in the morning, is getting more difficult. Lately I have trouble both keeping my plans organized and keeping a hold on my sense of self within those plans, largely because of the important role-identity I just caught myself forgetting to include above. Caregiver, leads to another identity: AliceasRalph.

Keeping Ralph’s life organized and reminding him what he is doing on a given day means I also remind him why and how he feels, which means I make an effort to get into his head to understand his mindset. Thus is born AliceasRalph, who often ends up as confused as he is by his confusion about whatever I am trying to explain. Our weirdly opaque discussions can sound like the old WHO’S ON FIRST comedy routine.

Ralph’s overview of his life, if not lost entirely, is definitely tangled. And because I am both Alice and AliceasRalph, my overview is pretty tangled too. Not hopelessly, but moving forward requires vigilance as I ceaselessly work to untangle the delicate filaments without breaking them.


Lessons from Laury

I recently wrote about finding the film Still Alice a less than satisfactory portrait of a family dealing with Alzheimer’s. Well,  I just watched a wonderfully honest documentary Looks Like Laury, Sounds Like Laury from the PBS series America Reframed. Laury, a wife, mother and former actress in NYC, is filmed by a friend from before her diagnosis–when friends weren’t sure if they were imagining something was wrong–through the growing realization that dementia has taken root.

Of course, Laury’s situation is not exactly like Ralph’s or mine, or yours or your loved one, because no two cases are the same. The very idiosyncrasy of Laury is what rings so true. And the reactions of Laury’s friends and family (including her little girl’s articulate best friend since kindergarten) show not only how difficult it can be for those of us who are intimately involved, but for those who are less intensely involved but who care.

Sometimes I find it hard to know what to share with friends and acquaintances. And frankly interactions can be awkward. But as I have been learning, the support and understanding of friends, even casual friends, can be crucial.

Thanks to https://annahnemouse.wordpress.com for writing about the documentary on her blog and giving the link http://video.pbs.org/video/2365437114/, which will evidently expire on April 10. I highly recommend watching while you can.

Joy Still Happens

Today we went on our annual Christmas tree hunt. We have cut down a tree on the farm almost every Christmas since we moved down here.

Ralph and I still remember the first time, 25 years ago. Piled into our old Suburban with our two kids, our friend Amelia and our two dogs, we drove all over the land we had just purchased. We didn’t know our way exactly and the roads were overgrown so we got stuck several times as well as a little lost, although Ralph wouldn’t admit it. He shot mistletoe out of some very tall trees—who knew that’s where you found mistletoe—and cut down two beautiful pines, one for our family and one for Amelia’s. Then we drank hot chocolate. It could not have been more greeting card perfect.

But of course life changes. Amelia moved out of our lives. The dogs died and were replaced by several generations of new pets. The kids grew up and although they have never have missed a Christmas yet, I worry every year that this season will be our last together as a family. Then there is the change in Ralph himself. He used to be the center of activity and now often prefers the sidelines, napping when the others go off on adventures.

And it has become harder to find a decent pine. There aren’t as many out there, either because we cut down the good ones or let them grow too large. For the last few years, Ralph and I have dragged along grandkids or nieces, city kids who try to be patient but quickly get bored traipsing through fields. But this year there is no one around but the two of us.

So I expected Ralph to tell me that looking for a tree would be “too much trouble”– his current catch phrase regarding so many activities we used to enjoy. Frankly, in this case I was secretly thinking he might be right, that a bought tree, with its perfect limbs, might be a pleasant change from our usual Charlie Brown monstrosities. But Ralph surprised me.

He was eager to go out tree hunting. And he remembered for two days straight that we were going to go today. He even made sure we gassed up the truck before we started. And off we went. Although our paths were mowed during the recent wedding preparations, the grasses are back up high and it was our normal bumpy ride, but at least there was no rain and it wasn’t too cold.

Soon, not far from our pond, we noticed a tree with potential, despite a flat side. I suggested we tag it with a pink ribbon, but Ralph insisted that he would remember where it was. After a lot more driving, also jumping out of the truck opening gates and stomping through high grasses, we found another tree, a tall one in a thicket of our old cow pasture. This one I made him tag. We spotted our third possibility in the fenced pasture directly behind the house. Ralph was happy to tag this one, and I took a picture to compare to our other choices.

By now Ralph had no clue where the other two choices were—or that we had seen other potential choices at all. As he followed my directions back across the pond, we joked about his memory in a way we don’t any more. And then we agreed, almost casually, that his condition was likely to get worse. Ralph’s potential future with Alzheimer’s has become the elephant we don’t always acknowledge taking up half the room, but in that moment of acceptance, it seemed less scary.

Because we were having too much fun. Both of us. There we were, two sixty-something-year-old cynics driving around in a beat up truck debating over the perfect height and shape of straggly pine trees as if our lives depended on making sure we didn’t end up with a bare spot in the branches. And it was great.

Lately I worry that we no longer connect as equals. It bothers me that Ralph is not interested in all the issues and concepts we used to discuss/argue about so energetically. Not only has he lost his appetite for current events but what is worse, he doesn’t want to challenge me about anything more important than whether he’s taken his pills. When he talks about the dog and the weather or repeats and repeats his anxiety about some mundane issue that has long been settled, I feel myself patronizing him. Not a good feeling. I have to remind myself who he has been in his life.

But this afternoon I didn’t have to make myself remember what I used to enjoy about being married to Ralph; I simply enjoyed being with him.


Ralph’s Pre-Wedding Jitters

We are down to the last few days before the wedding and it is bittersweet in all the expected ways, but Ralph’s MCI/cognitive impairment adds a layer of intensity.

The bride and groom seem to be over the humps of pre-marital jitters and moving into pure excitement and impatience for the day to get here already, although I do spend a lot of time calming the bride-to-be down about mostly minor issues.

The rest of the time I am walking around the house in my glittery new silver pumps getting used to two-inch heels on my still-recovering ankle when I am not running out to buy flashlights (a little obsession of mine, that the path to the parked cars will be too dark) or pecan pralines for the guest goody bags or garbage bags (controlling the mess, another embarrassing obsession). My day starts early and ends late, including quickie visits to my mother, whose health is shakier and shakier as the wedding approaches.

But adrenaline is fueling miles of energy I never knew I had. And I have moments of incredible joy when little details come together that seem symbolic of the coming marriage.

We spent last evening with our daughter and one of her two brothers and our granddaughter, whom we had not seen for a year. Like at the Thai restaurant last week, Ralph was amazing. There were the usual discussions that began “remember when” and he always did remember, at least some version. When sibling issues began to percolate, he jumped in and smoothed the waters. I saw him through the kids’ eyes:  the patriarch, imposing and beloved.

But today Ralph is suddenly a little lost, probably because he has finished all the pre-wedding chores that have kept him scheduled into a routine. Plus this is his baby girl getting married and as much as he likes her intended, he is only half-joking when he says he would rather she move home and take care of him.

When I left the house at 11 this morning, he was still in his bathrobe. When I got back at 2:30, he had forgotten to eat lunch—I suspect he had been asleep. After I gave him lunch, he drove to the gas station for a six-pack of beer. That was his only activity of the day.

Yet he is exhausted and talks openly about how anxious he is feeling. Tomorrow I will have him help me put up signs to the ceremony and reception sites. He does much better when he has a chore to accomplish.

Tomorrow night, the whole family descends and my guess is he will rally, at least outwardly. (No, I am not cooking; take out bbq will do fine.) But the anxiety is not going to abate. His inability to keep straight the details of when-and-where-and-who is staring him down in a way he can usually avoid but finds impossible to ignore this week. He is openly nervous about the physical details but I suspect his bigger concern is interacting with so many people and keeping straight the details. Since I may be busy with hostessing duties, various friends are planning to keep an eye on him, but I know that when Ralph starts getting disoriented I am the only one he wants nearby.

He keeps asking, “How do you  me  stay so calm?”

I avoid answering, but really, I have no choice; someone has to stay calm, the same way one of us has to keep remembering for the other.

What’s Up with Namenda?

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.


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.

Is MCI Dementia?

Several weeks ago Ralph and I sat down with a bowl of popcorn and watched the program “Alzheimer’s – Hope for Tomorrow – Help for Today” on our local public television station. Ralph’s doctor was featured as well as a member of Ralph’s support group.

Despite the optimistic title and some upbeat patient interviews, the program didn’t sugarcoat or patronize those of us in the trenches. After all, for all the studies and research and media attention, the known facts are pretty clear-cut: There’s no sure way to predict when/if MCI and early Alzheimer’s will develop into full-on Alzheimer’s; and there’s no cure despite the drugs and lifestyle changes that slow down the progression for some but not all patients.

It was like watching a car wreck; only the wreck involved my car. I couldn’t tear myself away.

Ralph watched all the way through too, but when I asked him what he thought he said he hated the program. His exact words were “It’s all crap.”

He didn’t want to identify with the people he saw on the screen, even those who seemed to me even less impaired than he is.

What probably put him off most—what frankly made me squirm sitting beside him—was the constant referral to both Alzheimer’s and MCI as dementia.

I have been squirming ever since. DEMENTIA. That’s how to describe Mrs. Rochester in Jane Eyre, the crazy woman in the attic, or my 96-year-old mother in her worst moments. Not Ralph, my careful, rational husband, a fact man who loves historic detail and likes nothing better than to analyze current events. It has never occurred to me to use that scary word dementia for Ralph’s condition…or only in anger and before his MCI diagnosis (when I so easily tossed around damning words that choke in my throat now).

It has taken weeks to steel myself to look into the definition of dementia in terms of MCI. The U.S. National Library of Medicine site lays out the parameters very clearly:

“Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems with thinking and memory that do not interfere with daily activities. They are often aware of the forgetfulness. Not everyone with MCI develops dementia.

Symptoms of MCI include:

  • Difficulty doing more than one task at a time
  • Difficulty solving problems or making decisions
  • Forgetting recent events or conversations
  • Taking longer to do more difficult mental activities

Early symptoms of dementia can include:

  • Difficulty with tasks that take some thought, but that used to come easily, such as balancing a checkbook, playing games (such as bridge), and learning new information or routines
  • Getting lost on familiar routes
  • Language problems, such as trouble with the names of familiar objects
  • Losing interest in things previously enjoyed, flat mood
  • Misplacing items
  • Personality changes and loss of social skills, which can lead to inappropriate behaviors”

No surprise that Ralph hits the mark for all four symptoms of MCI.

As for symptoms of dementia, he’s a mixed bag. Fortunately, he does not exhibit any symptoms of moderate dementia so I didn’t reprint them. Comparing him to the early symptoms list I can say confidently that he has no language problems, at least less than I do, and that he doesn’t misplace items any more than he always has, although finding his razor in his sock drawer this morning was perplexing.

He can still drive his tractor and do carpentry repairs. But there’s no getting around that he can no longer do mental tasks that used to come easily–forget balancing a checkbook, he struggles following a movie. He is beginning to forget how to get to once familiar destinations, so I am going with him to get his teeth cleaned next week. And his personality has definitely changed. My “to the moon Alice” Ralph has transformed in an easygoing, appreciative, sentimental, even docile Ralph who is also withdrawn and fearful of anything outside his daily routine.

Although there’s no way to avoid checking Ralph’s behavior against the definition of dementia from now on, I am not ready to add dementia to the vocabulary of my marriage (a resistance I’ll explore in a future blog). And I don’t believe I have to.

Not yet.