Tag Archives: symptoms of mild cognitive impairment; symptoms of Early Alzheimer’s

Pure Ralphness Now and Then

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Sometimes I think Ralph is more like himself now than he was before the cognitive impairment, that some essential Ralphness that was covered up by ambition and testosterone has emerged—a more thoughtful, family centered, openly vulnerable Ralph. The Ralph I always wanted to believe was hidden under his tough exterior but almost never saw.

But sometimes I think some essential Ralphness has gone missing and that I am living with a stranger. A trivial example: A few days ago I was working out the seating arrangements for our Christmas dinner. How to organize folding tables of various sizes in order to fit 25 people around one table in a 12×14 foot dining room requires a lot of geometry. Geometry is not my strong suit, while Ralph has always been a genius at spatial thinking. So after struggling with small rectangles of graph paper for two hours, I begged him to help. He had absolutely no interest. Even when I warned him that I would be moving around tables, including his beloved handmade pine table, he stayed calm and passive. When I told him there might be a hole in the center of the “table” I was creating, he surprised me by sweetly offering to cut me a piece of plywood to cover with foil to use as a hot plate.

On one hand I was relieved. For most of our marriage I could not make a decision about where to hang a picture or place a chair without being second-guessed. And “second guess” was sometimes a euphemism for harsh criticism and/or barked orders. Now I have free reign; whatever I choose he embraces.

On the other hand, I used to argue back at Ralph’s second-guessing until we came to some kind of creative if anger-fueled consensus. His logical, practical mind balanced my intuitive, impulsive one. Now I have to pick up the practical, logical slack, and I don’t like it.

Well that’s not completely true (nothing in dementia, or life, ever being that black and white or clear-cut). I am proud of myself for mastering my new skills. But increasingly I also feel weighed down from carrying the weight for two of us—always having to consider what Ralph needs as well as what I want.

And then there is the emotional shift in our relationship. The shift actually began in the years before his diagnosis—our marriage went through a wonderful honeymoon period about five years ago, as he became a gently more loving husband. Now he is so overtly dependent and openly grateful that I find myself a little condescending. But again, no black and white here, because I always thought that Ralph was more dependent on me than he could admit just as I was more dependent on him than I could admit, so we balanced each other.

And here’s the rub. It’s not that our balance is off now—although it often is lopsided—but that it’s different. I find myself secretly missing what I used to hate and hating what I used to miss about Ralph. But what I love about the new Ralph is that the man who used to scrutinize every decision in even more minute detail than me now doesn’t bother over-analyzing the future or the past. Instead he is learning to embrace the good moments and let go of the bad, whether mountains or mole hills.

Post script: I began this post almost a week ago. A few days ago our numbers changed and the tables needed rearranging. Ralph was suddenly the enthusiast, helping open and folding tables, figuring and re-configuring. And when we all gathered at the table last night for Christmas Eve, Ralph commanded from his usual seat, first chair on left. And a few hours ago Ralph made his usual December 25th comment: “Best Christmas ever.”

The Ever Changing New Normal

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Eighteen months ago I was sitting in a six-week support group I had recently joined for caregivers when a new member walked in late, sat down and burst into tears in. She was a young woman in her late forties with a child in college and another in high school. Her husband was a former economics professor no longer able to teach due to his Early Onset Alzheimer’s. While she struggled to maintain her high pressure banking career to support their family, he spent his days in his home office playing chess on the computer and supposedly organizing his files. She tearfully described what a mess the office had become. She said he was depressed and angry and she was not sure how to go on.

At the time I was full of pity and secret relief. Her husband seemed so much further along the Alzheimer’s path than Ralph. Interestingly enough, her husband was the one person Ralph genuinely liked in the care-getters group which met at the same time as our care-givers group.  Ralph complained continually about having to listen to people drone on in his group, but when givers and getters came together for a luncheon when the six weeks series ended, he made a point of going up to the former professor to shake his hand and wish him well before we left.

Flash forward to the present. On my way to the grocery store this afternoon after a morning of office work, I realized that Ralph was not at home in his usual spot on the porch or out in the field mowing, but at his barn office/painting studio where he keeps a few files, his fishing equipment, and his art supplies. Ralph has always been a talented painter and always said that once he retired he would take it up more seriously. But despite my nagging, he has not lifted a paintbrush.

Still I became briefly excited.  Now that  the weather has turned cold, sitting on the porch smoking might be less appealing, so maybe Ralph was going to buckle down and begin to paint again after all.

But no. Ralph was sitting in his messy office, smoking a cigarette  with his dog at his feet.  When I walked in and asked what he was doing, he  said he was organizing his files.

Silences

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I am not going to pretend that there were never silences in our marriage before Ralph was diagnosed with Mild Cognitive Impairment. Our arguments included the silence of resentment, the silence of fury. Ralph and I argued a lot since we were frequently on different wavelengths about everything from child rearing to national politics. But when those silences happened, I was passive-aggressive while Ralph used to be the one who eventually stormed and stomped beforehand.

…..Not to diverge but I just noticed that I write Ralph used to be the one who an awful lot     in my posts:                                                                                                                                                                                  Ralph used to be the one who complained about silences.                                                                     Ralph used to be the one who followed a regimen with medicine.                                                    Ralph used to be the one who was more outgoing.                                                                                                           Used to be the one who took care of our business affairs,                                                                                          Used to be the one who was into rules and regulations,                                                                                             The one who drove too fast.                                                                                                                                                The one who was charismatic,                                                                                                                       Who loved to analyze politics,                                                                                                                        Who was good with facts and figures,                                                                                                            Who was the family disciplinarian.                                                                                                                  Who could remember everyone’s name,                                                                                                     Who was intellectually and emotionally passionate.

Now Ralph has relinquished many of his roles, every one of those listed above. Meanwhile I am taking some but not all of them up in his place: yes, I’m the one running the business, setting the schedule if not the rules, remembering whatever needs remembering, but not picking up the slack on passion or charisma.

Sometimes, especially when I receive sympathetic comments, I wonder if I am giving people a lopsided view of Ralph here. Too much Ralph used to be.

Because the fact is, Ralph still functions on a daily basis pretty damn well. He can drive a car (even if he can’t remember directions), he can go to the hardware store and discuss why the tub leaks with our plumber, he can fix complicated machinery. He can carry on a perfectly reasonable conversation, even if he doesn’t remember it afterwards. If you met him, you would probably wonder what all my fuss is about.

Sometimes I wonder myself. After all, we have not really argued in months. Sometimes I am short-tempered and speak harshly, but he doesn’t remember long enough for my behavior to matter. And he almost never expresses anger himself. It takes very little to keep him pleased: whatever I cook for dinner is delicious these days, whatever I wear looks great, whatever he reads is interesting.

If anything, he is too easily pleased. Our lives have flattened. I am ashamed  how bored I get with Ralph’s conversations about the weather and the dog, yet how disinclined I am to share my own thoughts and feelings with him—I’m embarrassed to admit that I’ve stopped trying very hard. Writing these sentences forces me to acknowledge that while I know who Ralph used to be, I am not at all sure who Ralph is now or who we are together.

I have read enough about the later stages of Alzheimer’s to realize that down the road I may well look back on these early days of Ralph’s cognitive loss with nostalgia. But right now I’m nostalgic about our imperfect past, even those churning  silences we used to share as furious but passionate equals.

My Confidence in His Competence–The MCI Conundrum

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I just got home from the feed store about twenty minutes ago. Last week, the woman who pasture-boards her horse with us told Ralph we were out of feed. Unfortunately she didn’t tell me until late yesterday afternoon. I have suggested that she contact me directly when she needs anything from now on. But I’m a little annoyed because she should have known not to trust Ralph with that kind of information—and I should have checked myself sooner

Yet, as I write I can hear the humming whir of Ralph’s John Deere, a strangely calming sound on a warm summer day in Georgia. You well may be wondering whether it is safe for Ralph to be on a huge tractor if he can’t remember simple conversations? The short answer is: at this point yes.

The long answer is that we are at a strange place in terms of Ralph and responsibility. And his work on the farm encapsulates the conundrum.

Ralph loves mowing and is still more capable than most people of any age at most physical chores—a good thing since we’re busy readying the farm for our daughter’s wedding here in early October. Ralph has mowed the fence lines and frontage and will need to mow them again, he has scraped our winding, unpaved driveway as well as the dirt floor of the barn where we’re holding the reception. He works about four hours every day, rarely starting before eleven after a long morning of coffee and time with the dog. When he stops in mid-afternoon, he’s dirty, hot and tired, but he’s also savoring the knowledge he is needed and useful, and—even more important to his sense of self—still competent at what he does.

To Ralph competence, has always been a primary virtue. He may no longer be able to function as a businessman, he may not be able to remember how to get to the dentist he’s gone to for twenty-five years, he may not be able to follow a movie plot, but he is competent out in our field on that tractor—a man in control of all his faculties (or at least the ones that matter to him these days).

On the other hand, I am always a little nervous. Not that he’s unable to do the work (well, a little that he’ll drive the mower into the pond) but that he’s forgotten what work needs doing. Sometimes when I tell him NOT to mow the front field, he gets so fixated on remembering there is something about that field that he ends up mowing it. He has mowed certain fields way more often than they need mowing. I have to remind him and push him but doing either too much can be counter-productive. It is less a memory issue than one of anxiety.

So everyday, instead of over-reminding I double-check his work.

I want Ralph to feel competent for as long as possible. In fact I will him to be competent. My worry is that I selfishly have him take on more responsibility than he should because I can’t ride the John Deere or fix the plumbing or cut the firewood. What if I miss the signals warning me of decreased capacity. What if something bad happens because I am not vigilant enough. But on the other hand, to deprive him of activities he can do and loves prematurely would be a huge mistake too. This is the teeter-totter we are riding together, weighing the rise and fall, hoping not to knock each other off.

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

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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.

Is MCI Dementia?

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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.

What If My Memory Goes Next?

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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.

Ralph Decides: “Something Is Wrong With My Memory”

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So… Ralph’s memory continued getting worse. He repeated conversations over and over. He forgot what day it was. He forgot business decisions. Then an acquaintance invited Ralph fishing in southern Louisiana. Ralph loves fishing and this was a fisherman’s dream trip: catching red fish all day, telling fish stories over great food and drink all night. Ralph was excited if a little nervous (ok, more than a little which I refused to take seriously), especially on the way to airport, but when he called from Louisiana the first night, he said the fishing was terrific and I could hear laughter in the background. I thought, great, he’s made some new friends. As soon as Ralph got home, he admitted the trip was torture. He could not keep track of names and faces. Worse he had trouble remembering which room was his. Smiling ruefully, he described finding excuses to leave the carousing so he could prowl the halls, poking his head into bedroom doors until he recognized his duffel bag and went to bed. Then he added the shocker: “I am going to make an appointment to see the doctor.” It was Ralph’s decision to see his doctor. Neither of us had considered the possibility that I should accompany Ralph to the appointment. Instead I printed out information I’d Googled about Lyme disease  as a cause for memory loss. Still in denial, I told myself Ralph’s doctor would prescribe antibiotics to clear up the problem. “Andy seems to think it could be serious,” Ralph reported almost sheepishly. “He’s going to set up a test.” Andy called us the next night (never a good sign when a doctor calls you at home at night) and suggested we use separate extensions so I could record/remember what he said. He gave us the name of a highly respected neurologist specializing in memory issues but warned it would take months to get an appointment. In the meantime we arranged to meet with a neuropsychologist who could give Ralph a battery of tests for a preliminary diagnosis.

And just like that we fell down the rabbit hole.