Will We Walk the Alzheimer’s Walk?

Caregiver/Spouse Issues, , , , , , ,

Receiving an email reminder of the Alzheimer’s Association Walk to Stop Alzheimer’s coming up in a few months, set off a chain of reactions  I  jotted down as they were hitting my brain…bumpbumpbump…

1. I want to go on the walk. It will be a good thing to raise money for research of course, but what really appeals to me is the sense of belonging the walk implies. I imagine myself in a bright-colored t-shirt surrounded by smiling new friends.

2. I can’t sign up. Ralph will refuse to participate. If I bring it up he’ll say “just send money.” He walks every day with his dog or with me., but with other people? Other people with varying stages of Alzheimer’s: No way. He doesn’t want to be part of that world.

3. Actually, he’s not that stubborn.  I probably could convince him to participate. I could say his doctor says we should . No, I don’t have to manipulate him that way. If I’m honest and say that the walk is something I want to do, he’ll probably go along; he likes pleasing me these days.(a smile of affection  at that thought)

4. But if I do convince Ralph to walk, he won’t want to walk with other people. We would be a lonely twosome. I get support from knowing others in the same boat, while being around people with cognitive impairment only scares Ralph. And this difference is not just because he has the impairment; it also has to do with his personality versus mine. Not everything has to do with the impairment.

5. But Ralph was the extrovert for the first twenty years of our marriage. I used to resent how easily he met people. Our roles have reversed after all.

6. Maybe it’s not a great idea. Maybe I’m still too shy to walk with strangers. Maybe I’ll just send a check. Why push against my natural inclination and his current comfort zone.

7. But how can I not walk? We need to own this reality.

8. I am not sure why this walk seems so important. I have plenty of time to decide; three months can bring a lot of changes (or very few). But   this one small choice, like every small choice, crystallizes the back and forth in which I spend so much of my inner life these days.

9. And besides I keep imagining those new friends.

 

 

 

 

If I Could Stick that MCI Diagnosis Back in Pandora’s Box…

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I just read a couple of study summaries showing that people often have “accelerated cognitive loss” for up to four years, even six years before diagnosis.

Ralph and I were aware of problems a year or so before the diagnosis, but four years or longer? I have to ask myself, why didn’t I notice sooner?

Well, if I am brutally honest, I did notice some changes, but they seemed to be improving our marriage so I didn’t want to look too closely or rock the boat.

God knows, I had already spent plenty of years obsessively analyzing what I perceived as his shortcomings and my weaknesses in our long up-and-down relationship—a marriage between strong personalities who loved each other but were frequently at odds. But about five years ago, with both kids out of the house, we seemed to have entered a second honeymoon stage.

If he forgot what I told him more often than usual, I was used to him not paying attention. After thirty years together, I was used to hearing his stories repeated and repeated; so what if he repeated them twice in a day instead of twice a week. And I was used to our screaming arguments—we both had tempers—but here where the improvement had come: he no longer held onto his anger. If we argued in the evening, he woke up the next morning with no memory that there’d been a scene let alone any lingering hostility. He was more affectionate and more relaxed. (Actually he still is.)

So if he was forgetful or unfocused that was a small price to pay. I did silently question some of the business decisions he was making, but I chose to ignore the small voice in my head warning me that he was being sloppy or inattentive, making faulty investments and letting our family business slide. It was easier to leave business decisions to him. I didn’t want the responsibility. Pure selfishness. Of course ultimately, I ended up stepping in and picking up the slack in a hurry.

What secret fears and anxieties pushed him during those months and years? How much was he aware he was missing or losing? How much was he covering up for what he couldn’t quite grasp any more?

And if we knew it was MCI earlier, would our lives have been better or worse? I thought I was actually relieved to know when we first got the diagnosis, but Ralph was only more frightened.

Perhaps conventional wisdom is right that knowledge and acceptance are the more mature route, not necessarily to bliss but to a quiet appreciation of each day. But sometimes I remember that oddly happy time and wish I’d put off learning the truth; why enter the gray uncertainty we now inhabit any sooner than absolutely necessary?

Travel–My First Crisis as an MCI Spouse

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One of the sticking points in our marriage has always been that I love to travel but Ralph doesn’t, unless it’s to go fishing. So I was incredibly excited last spring, just over a year ago, when a friend invited me to accompany her family on a cruise through Northern Europe. Two weeks all expenses paid! Even my airfare would be covered!

Aware this might be my last chance for an adventure, I was dying to go. Ralph had been given the neuropsychologist’s initial assessment of MCI by then and we had recently visited the Emory Memory Clinic for the first time. But except for repeating himself a lot, Ralph was pretty much the same self-sufficient guy he’d always been– working in the office every day, fishing with his pals, arguing about politics. I told myself he could certainly manage  without me. Still good wife that I considered myself, I told my friend that I couldn’t commit until I spoke to Ralph.

I brought up the trip with trepidation, not sure how he’d react. He might not enjoy travel himself, but he didn’t much like being left behind either.

“No question, you’ve got to go.” Ralph’s enthusiasm surprised me. “This is an offer you can’t refuse.”

He seemed more relaxed than I was  during the flurry of preparations. Over the next month I bought walking shoes, stocked the freezer with the frozen potpies Ralph loves, planned a long fishing weekend to keep him occupied at least part of the time while I was gone.

Then Ralph woke up one up one morning, five days before I was to fly to London, and announced angrily that if I went on this trip, I might as well not come back. I lashed back at him with resentment and plenty of anger of my own. How could he wait until the last minute? What would I tell my friend and her family? Why was he such a controlling bastard?

“It’s your decision,” he said before storming out of the house.

We headed to our shared office in separate cars. The cadre of supportive, well-meaning woman friends I called as I drove all agreed: Ralph was being ridiculous; he might have minor memory issues but he could function alone perfectly well.

I eventually called the Memory Clinic for professional back up; after all, I had heard our neurologist say that Ralph had ONLY MILD Cognitive Impairment.

Talk about a bucket of water in the face!  Both the nurse practitioner and social worker explained what I should have realized—capacity to function aside, Ralph’s fear had to be respected.

I went to him and apologized. He said if I really wanted to, I should go after  all. Then we talked with more honesty and intimacy than we’d shared for a long time. He acknowledged fears that his condition would suddenly get worse—“What if I get lost while walking in the woods by our house and you’re not here to find me?” “What if my mind just goes out all of a sudden?” It didn’t matter that neither scenario was likely; his anxiety was genuine and intense. And for this proud man to admit any fear was huge.

Which meant I had to admit my own fear: my own high anxiety about my new role as caretaker-spouse of a husband with memory loss. I had been in selfish denial about Ralph’s MCI while planning my trip, but part of me knew all along that going away for more than a couple of days would be a mistake. Once I said I wasn’t going, I was oddly relieved: What had I been thinking to plan such a trip?

My friend refused to let me feel guilty about cancelling. Her father refused to let me pay him back for the non-refundable tickets. The kindness of strangers is nothing compared to the kindness of friends.

As for the two weeks I didn’t travel to Europe, I have no regrets. In fact those two weeks were a gift because I ended up going with Ralph on that long fishing weekend I had organized for him, along with my daughter and her boyfriend, and while we were all together, they got engaged. Now if I’d missed that….

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.

I Meet Another MCI Spouse

Caregiver/Spouse Issues, Support and Research, , , , , , , ,

We are a little early for Ralph’s third of five sessions in an Emory University study on visual aids on whether certain visual clues will improve memory retention for those with MCI/Early Alzheimer’s. (There are so many studies out there right now and they all need volunteer subjects. But not every patient qualifies to be in a study. MRIs are usually required and there are often other restrictions as well but it is worth going to the Alzheimer’s Association website to check out what studies are going on in your neighborhood.)

Ralph’s study is concentrated over a two-week period. Ralph says the “homework” aides the researcher has recommended don’t help but he has returned willingly enough. I don’t sit in during the sessions but I come alone for moral support and read old magazines in the drab but not uncomfortable waiting room.

This afternoon another couple sits down in the waiting room with us before Ralph gets called in. I size them up: both husband and wife are a little older than us, probably early seventies, casually but tastefully dressed, whispering and smiling at each other with just an edge of nervousness that says they are first timers. She is lively and chatty, he more passive. Like Ralph.

But a few minutes before Ralph goes off with his researcher, another researcher comes for the wife. The husband and I are left together with the dated magazines. As we begin to chat about the weather and the time it took to get to the building, I am dying to bring up the obvious—if both of our spouses are in this study, they must both have the same diagnosis—but I don’t want to intrude on his privacy.

Before I can stop myself the letters M, C, and I are out of my mouth.

Yep, his wife is about a month behind “Ralph” in the process, not necessarily in terms of her degree of cognitive impairment but in terms of when she was diagnosed. She is seeing Doc L’s partner. She has just started the same drug (donezepril) Ralph is on. Her husband’s not sure what comes next.

I am almost giddy as we start comparing notes. There is so much to talk about that I haven’t been able to share with anyone else. Our hour or two together in that dinghy room flies by. I doubt I’ll ever see him again. I don’t know his name.

But for the first time, I realize I am not alone

Drinking and Smoking and MCI

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II

I know, I know, if drinking and smoking are not good for anyone, their effect on people with memory loss has to be worse.

In fact one of the first things Ralph’s primary physician said after the diagnosis—no alcohol, no smoking.

But bad habits are hard to give up. And making someone else give them up is even harder. And to be honest, I’ve begun to wonder if maybe Ralph shouldn’t hang on to a few bad habits for a sense of normalcy. There are so many aspects of Ralph-ness he’s already letting go—the real estate dealmaker has lost his touch for number-crunching, the Bob Dylan fanatic doesn’t listen to music any more, the husband who used to only half-jokingly call himself the captain of the family passively agrees with every decision I make. Not that I’m complaining because Ralph’s temper has disappeared or because he’s become a sweeter, gentler human being; but the changes have spooked me a little.

God knows that for most of the length of our 35-year marriage I nagged Ralph repeatedly to cut down on both booze and nicotine. I have always been a bit of a stick-in-the-mud prude. I never smoked even as a kid and my drinking is limited to a very occasional glass of wine; after two I’m tipsy or worse. But I understand addictive habits; if there’s chocolate or ice cream in the house watch out.

Ralph has downed at least three or four cans a night for as long as I’ve known him. Well, actually, he probably drank closer to a six-pack many days. In fact when Ralph first started showing signs of cognitive loss, months before the MCI diagnosis, I thought his problems had to do with his Natty-Lite consumption (and I still believe it didn’t help). We talked about the connection—that he was always fuzzier at night, the same time of day he imbibed—and Ralph has actually cut down on his own. Now he drinks one or two, never more than three cans of lite beer around dinnertime, and not every night. Drinking less has obviously not cured his memory issues, and do I really want to take that bit of pleasure away?

As for smoking, Ralph went cold turkey when the kids were small and stayed nicotine free for over twenty years, but it only took one puff on a cigar at a Fourth of July party to get him hooked again five years ago. In retrospect he started smoking again around the same time that his memory began to slip, before we acknowledged it except as a joke although he may have been more worried privately than he let on.

At first he smoked just a cigar or two a day. He kept saying he was about to quit. Instead, he smoked more. He never smoked in the house; instead he’d find excuses to go off in his car or sit bundled up on the front porch on the coldest winter day lighting one cigar after another. All my nagging fell on deaf ears. The more anxious he became about his memory, the more he smoked. By the time he was diagnosed with MCI last spring, he was up to a pack a day. And remember, we’re talking a pack of cigars, cheap, skinny, smelly ones that have to be stronger than the equivalent number of cigarettes.

So last month, in an ironic turn of events, I found myself convincing him to switch back to cigarettes for two reasons: 1., he’d have to smoke a lot more of them to hit the same nicotine level he was reaching with the cigars and 2., my more selfish reason, the cigarettes wouldn’t stink up his clothes as much. The old Ralph would have fought me, but the new Ralph made the switch.

Now I remember how much I hate cigarettes smoke.

But two days ago I came across a 2012 Georgetown University study showing that nicotine may actually slow down MCI. I couldn’t quite believe, so I talked to the nurse practitioner in our neurologist’s office. She said the results aren’t in on Alzheimer’s-related dementia there is some evidence that nicotine helps with Parkinson’s.

Meanwhile, Ralph’s down to less than half a pack a day. So now I’m feeling guilty not only because he still drinks but also because he might quit smoking because of me. But I can’t bring myself to show him the Georgetown article.

Diagnosis: Mild Cognitive Impairment Limbo

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In my last entry Ralph realized his memory problem was serious enough to require a doctor’s visit. His doctor Andy recommended we make an appointment with a neurologist specializing in memory issues but warned it might take months before we saw anyone. Meanwhile he urged Ralph to get his cognitive skills tested by a neuropsychologist soon as possible.

The neuropsychologist was not exactly warm and snuggly as he asked Ralph preliminary questions. Ralph was defensive. Well, so was I sitting silently by his side. The tests themselves took three hours;  I waited in the lobby with a book. Driving home, Ralph said the tests were silly. He thought he aced them.

There was nothing silly about the second meeting, during which the psychologist gave us the test results. He did not mince his words in person or in his written report. Although Ralph’s problem solving skills and IQ were still high (though not as high as they used to be), his memory was down in the single digit percentages: MILD COGNITIVE IMPAIRMENT was definite and EARLY ALZHEIMER’S likely.

Ralph was angry, unwilling to accept the results. I didn’t tell him that I secretly felt relief because someone was taking my reality seriously. Or that I was petrified because someone was taking my reality so seriously, that it had a name.

Three months later we had our first appointment with our neurologist at the Memory Clinic.

More tests, same conclusion. But partly because Doc L. was such an easy-going, approachable and likable guy , we came away less worried. Mild Cognitive Impairment didn’t sound so bad coming from him.

A month or so later Doc L. did the spinal tap, a procedure that is relatively new in diagnosing Alzheimer’s but has proved extremely accurate.

A few days after that, I was caught in rush hour traffic and almost didn’t answer my beeping cell phone.But as soon as Doc L. said his name, I pulled over and parked…shocked he was calling me personally.

Ralph’s spinal tap showed the plaque build-up consistent with Alzheimer’s.

“But he doesn’t have Alzheimer’s Disease now.” Doc quickly reminded me. “He is still diagnosed with the condition MCI.” He has the condition, not the disease.

Not yet. Mild Cognitive Impairment– MCI –may not be Alzheimer’s Disease, but the plaque build up confirms that Ralph is not one of those lucky people diagnosed with MCI  who don’t have brain changes consistent with Alzheimer’s and might get better(go to Watching the Lights Go Out for a ray of ambiguous optimism). On the other hand, even for those like Ralph with telling changes, the boundary between MCI and Alzheimer’s is blurry at best, and research shows the timeline for development is unpredictable. It could take two years or twenty. Meanwhile, we have rewritten our wills, closed Ralph’s business and put our financial house in order.

“MCI,” I say when Ralph asks me to remind him yet again about his diagnosis. MCI I tell our kids and closest friends. MCI I tell myself.

No need to speak the word “Alzheimer’s aloud these days. Not yet, I tell myself, not yet.

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.

In Retrospect– The Beginning of Ralph’s Memory Loss

Caregiver/Spouse Issues, Tracking Changes, , , , , ,

While no two cases are the same, the stories we caregivers share about how cognitive impairment crept into our lives are often similar.

Ralph’s memory started to get noticeably worse about three years ago. For the first year and half or so, we joked, haha it must be  Alzheimer’s, whenever he forgot the conversation we had just had. My daughter told me we shouldn’t joke because he was probably worried about losing his memory. But frankly joking and teasing made it feel less serious to Ralph as well as to me.

Gradually his behavior changed. Never the most observant husband, now he didn’t seem to be paying attention at all. He never seemed to listen. He would ask me a question and then ask it again ten minutes later, or five minutes or two minutes.

“I just told you,” I’d sputter. “Well tell me again,” he’d shout.  It wasn’t pretty.

At night as soon as dinner was over he went into the bedroom and watched tv. Often he fell asleep by 8 pm. He pooh-poohed my suggestion to see a doctor.

At the small business we ran together, he did less and less while I worked harder and harder. Yet he would get angry if I questioned him. I began to go around him to get work done.

Not the recipe for a happy working relationship, let alone marriage.

And then the situation became worse.

….to be continued

Into the MCI Maze: Starting From Today

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My husband, whom I am calling Ralph at his request (see “About” above), has the Condition called Mild Cognitive Impairment. His MRI and spinal tap show that he has plaque build up consistent with the disease called Alzheimer’s, but as his doctor repeats, he does NOT yet have the DISEASE CALLED Alzheimer’s. He has  the CONDITION called MCI.

Some people with MCI slip quickly into Alzheimer’s or dementia. Others reach a plateau and stay there. For now, because of his medicines,  because he’s lucky, or because I’m in avoidance, Ralph seems to be on the plateau.

I admit I have not kept track of the changes in Ralph as well as I should have. I missed the starting line. And living with him day to day, I can easily miss  gradual alterations that others who see him less often find shocking. Since greater changes may be coming—ok, will be coming—I need a point of reference going forward, and here it is:

What he remembers:

Facts—He watches Jeopardy every night and is still a strong armchair contestant.

His meds—As long as I fill his weekly pill boxes (Namenda and Donepezil for memory and generic escitalapram for depression and anxiety).

His daily routine—He feeds the dog, takes a walk,  takes a nap, maybe spends a couple of hours every day in his workshop “organizing my tools.” Now that the weather has warmed up, he does a lot of mowing. By mid-afternoon he’s sitting  on our front porch, whatever the weather, listening to the radio and smoking a cigar. (I know smoking is bad but this fight isn’t worth fighting right now.) Mondays he drives himself to see his psychiatrist. He eats lunch at Burger King beforehand and stops at the post office afterwards.

How to drive— His actual driving skills remain strong although he drives more slowly, maybe a good thing. As long as I am there to give directions, he can drive anywhere day or night. Alone, he can find his way to certain key locations : his psychiatrist, Burger King, and our daughter’s house.

What he forgets:

Who people are—not just names but also that certain people exist.

Conversations—often enough that I assume anything I have told him will be forgotten–scheduling details, financial decisions, family issues. Of course, the upside is that I can tell him a secret and know it is safe. Plus he forgets arguments immediately.

Memories, Especially Bad Memories—Despite common assumptions, his long term memory is not much better than his short term but it is selective. He has forgotten quite a few specifics of his past, but they come back with prodding. What he has more trouble remembering are arguments, why friendships went awry and family estrangements occurred. Even when he’s reminded, he doesn’t feel the old angers. An unexpected benefit.

Who he is:

Sweeter than he used to be; less aggressive; more patient; less easily bored (because he doesn’t remember the twenty minutes of waiting for the doctor once it’s over); more in the moment.

But also less ambitious; less energetic; less adventurous; more passive; more dependent.

Still passionate about his farm and his dog; still able to fix anything with his hands; still a voracious reader (he says he can’t remember what he’s reading until he opens the book); still adept at analyzing numbers, facts and human nature (even if he can’t remember his analysis five minutes later)—in other words, although  I’ve been warned there’s no telling how long before MCI begins chipping more deeply into his identity, Ralph is still himself in the most important ways.