Tag Archives: coping with a spouse’s cognitive impairment

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.

My Mother’s Not Cognitively Impaired, Just Old

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

I spent yesterday in a rush of care-taking. Not for Ralph but for my mother. This morning while I was in Atlanta buying wine for my daughter’s wedding, the nursing home called to say my mother needed to go to a hospital emergency room because her Coumadin levels would not go down. So I rushed to the nursing home (almost an hour away), then followed the ambulance to the hospital, another forty-five more minute drive, where she was admitted to the ER.  At around 4:30, while they were running tests, I drove home to check on Ralph,  drop off the wine that was sitting in my hot car, and grab an apple since I missed lunch.

I got back to the ER in less than an hour, at 5:30 on the dot, but Mom was furious, sure I had been gone for hours.

Two hours later the doctor came by to say her levels were back to normal and her overall health looked good. So I followed another EMT vehicle back to the nursing home, stopping at Arby’s so I could pick up Mom’s favorite dinner before heading back to the farm where Ralph was already asleep.

It was a long day but throughout my mother was as alert and lively as she’s been in over a year. At 96, she is bedridden, can’t hear or see very well but has a memory more intact than Ralph’s. She does suffer bouts of confusion, seeing people who aren’t there in what I consider heightened daydreams.  I would daydream heavily too if I were as bored as she seems to be. At the ER, she was thrilled both by the attention she was receiving and all the emergency room activity going on in front her. Her major worry was  that I wasn’t home to make Ralph’s supper. So when we got the upbeat results I called him and handed her the phone so she could tell him the good news.

During the nine years my mother lived with us, she and Ralph developed more of a relationship than they’d had during the previous 24 years of my marriage during which Ralph sensed she never fully approved or accepted him. He was probably right. Still he was a good sport when my she moved in. He wasn’t thrilled at giving up our privacy (and neither was I) but I think he was a little proud of being the only one strong enough to get her up—she is not a small woman—when she fell as she did more and more frequently toward the end of her stay.

I decided last fall that she needed to go into a nursing facility, in part because she was requiring more care than we could offer at home even with full-time caregivers, but also because Ralph had been diagnosed by then and I wasn’t sure what he was going to need from me. (Of course, I didn’t mention that reason to Ralph or even fully articulate it to myself.) At first Ralph was all for the move but as it approached, he began to question my decision. It was as if he were beginning to identify with her. Still, in the end, after a particularly scary event involving a 911 call,  everyone in the family agreed that she had to be moved.

Ralph and my mother have not  seen each other since she entered the nursing home. And they won’t see each other as long as she’s there, in other words for the rest of her life. He does not need to smell the hallways and see the patients lolling sideways in wheel chairs, talking to themselves,  staring into space or grabbing at everyone who passes. He does not  need to peek into the half-lit rooms like the one where my mother lies dozing most of the day. His unspoken fears about his future are strong enough.

As Ralph puts it, “it’s too depressing.”

Still, he asks me daily if she seems happy, and I always answer yes, she does.

Special Delivery

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

Yesterday, I asked Ralph to stay around the house and watch for a UPS shipment while I took my mother to the doctor and then handled a business transaction concerning the sale of our business. Before I left the house Ralph asked me repeatedly why he needed to stay in the house. Once I was gone, he called me repeatedly asking what he was waiting for and worrying that it hadn’t come. At one point he left the house and waited in the barn, against my specific instructions, until I told him in the next phone call to go back to the house.

His problem was anxiety, not memory, or it was memory compounded by anxiety. But since the package was my daughter’s wedding dress (sent to us so the groom would not see it by mistake), my anxiety got pretty high too. Especially when Ralph stopped calling or picking up his phone when I called him for an hour while rushing home.

Of course once I got home, he was sitting on the porch with the dog and a beer. “Oh yeah, I think something came,” he said when I asked, “That big white box in there?”

Once the package came, it stopped being something he needed to remember so it didn’t occur to him to call and tell me. Besides, he’d left his phone somewhere in the house where he couldn’t hear it ring and needed me to find it.

The bottom line is that Ralph managed fine and the dress is safe. When my daughter nervously texted from her job to ask if it arrived, I couldn’t help teasing her—as if an already tense bride-to-be needed her mother to make things worse.

“If what arrived?” I texted back, before quickly, and guiltily,  texting again, “Safe and Sound.”

The joke’s on me because now I have to wait to open the box and look at the dress until she comes out here on her day off. The anticipation is driving me nuts…it’s a different kind of anxiety than I’m used to these days and one that’s a lot more fun.

My Confidence in His Competence–The MCI Conundrum

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , , , , , ,

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.

Long Term Health Insurance

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

I usually write personal stories here, leaving the science and practicalities surrounding memory loss to more qualified sources like the Alzheimer’s Association website. But this morning I gave the following advice to a friend who suggested I share it here. If you are reading this blog, you or someone close to you has probably been diagnosed with memory loss and may not qualify for long term insurance, but for the rest of you, especially caregivers, I have three words:  LONG TERM INSURANCE.

It isn’t cheap and the costs and benefits vary according to your situation. But it is easy to research on the government’s long term care site. For balance read the less than enthusiastic report in Consumer’s Report and then visit AARP’s longterm care calculator site. There are several sites that compare rates of providers. I am not saying BUY, but at least look into the possibility.

I will always be grateful to my mother for setting an example before it was too late for Ralph and me to consider long term insurance for our uncertain future.

She purchased long term insurance after my father’s death when she was over 70. Fifteen remarkably independent years later, she fell into a depression and stopped eating. Although we’d spent my childhood, adolescence and young-to-middle adulthood not much liking each other, age mellowed us both into polite if slightly stiff cordiality by the time I flew down to stay with her in the retirement condo Ralph had helped my father purchase years earlier in Key West. Key West, where I’ve had some of the best times of my life including my honeymoon, lost all its pleasant associations during the miserable two weeks that followed. Finally the visiting nurse gave my mother two choices: one, continue starving herself with the understanding that I would not be able to stay as long as it took for her to die; or two, fly back with me to Georgia and get medical care.

We flew to Georgia the next day. For the next nine years, until weakening health required her move into the nursing home where she resides now, my mother lived in the mother-in-law suite fortunately installed in our basement already.

And it was okay, not great exactly, not what my father would have called “a bowl of cherries.” Sure there were crises (like when she called 9-1-1 the night I neglected to go down to say goodnight after getting home from a movie) and the family issues that always arise among near and far adult children when a parent is failing. But what would have been a completely untenable situation, emotionally and practically, worked out only because that long term insurance. offered a financial safety net.

Purchased so late in my mother’s life, the insurance had payment limits and an end-point, which she reached about three years ago. But for seven years Genworth promptly paid about half the salaries of the excellent full-time caregivers we hired. Social security and an annuity paid most of the rest. Her savings held more or less steady—a good thing since her nursing home is not cheap and those savings are coming in handy.

Three years ago when Ralph started getting those notices that he would soon be eligible for Medicare, I suggested we re-examine our insurance situation. Since both of us have always been self-employed, we’ve always kept our cost down by carrying a very high deductible. After all, as Ralph pointed out, we didn’t need more insurance because we were both extremely healthy.

But so was my mother as I pointed out.

We called AARP who recommended Genworth, which happened to be the provider that was working so well for my mother. After some back and forth and a visit from a knowledgeable if less than personable insurance agent, Ralph agreed to go ahead and buy the insurance. He had not been diagnosed back then of course and I was not consciously acknowledging any change; in fact we joked together about his bad memory when we had to take a memory quiz to qualify as low risk applicants for the best policy available. We both passed. I can’t help wondering, if we had waited a year or even six months, would Ralph be insured now?

Thankfully, he is insured. And just as important, so am I. We don’t need extra help right now. But given the way Alzheimer’s progresses, a time may come when Ralph requires more care-taking than I can offer alone. And even now, if my health took a downturn I know I couldn’t count on Ralph to care for me. Having the long term insurance means I don’t have to.

So, at the risk of repeating myself–which I do all the time these days anyway so what’s one more time–consider buying long term insurance as soon as possible.

Decide if you can afford to buy the insurance, and if you can afford not.

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.

Sometimes a Little Rant Helps

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , , , ,

Okay so I got a little furious at Ralph last night. That’s an oxymoron, isn’t it? Furious implies more than a little anger. But dealing with Ralph since his MCI means that any given moment I cannot allow myself more than a little anger, a little resentment, a little impatience.

Be warned what follows is my little rant. Even as the words show up on my screen, I see how “little” the incidents were that set me off. But if you are dealing with a loved one with cognitive impairment (or anyone who has ever been married), you know the way those little moments build.

Ralph and I drove into Atlanta yesterday so Ralph could try on a new suit for our daughter’s wedding. He said he didn’t want to go (“too complicated” as usual), but once we were at the store with our daughter, he started enjoying himself. He basked in our compliments about how good he looked, he told the salesman stories about his wild youth. Back at my daughter’s house, she and I got on the computer to order wedding knickknacks while Ralph relaxed with a glass of wine (and a smoke on the porch).

Since the three of us were laughing away, having more fun together than we have in ages, my daughter and I assumed that when her fiancé got home, we would all share an early dinner at one of their neighborhood restaurants. I had mentioned the plans in a vague way to Ralph, the way I have learned to mention most plans ahead of time, and he had seemed amendable.

But when my daughter made the understandable mistake of asking Ralph directly whether he was willing to hang out another half an hour, he said, “No, I want to get home to my dog.”

My heart sank. I knew that if we’d waited to mention dinner until the arrival of my daughter’s fiancé, whom Ralph is crazy about, Ralph would have gone along with the idea and then had a great time. But it was too late now. When I gently suggested that dinner out might be a nice change of pace, he became adamant about going home. I didn’t push. So at the height of Atlanta rush hour, we got in the car.

Slipping into the driver’s seat I asked, only half joking and barely pleasantly, if we were ever going to eat out in Atlanta again. He answered with the rhetorical question, why would we want to. Well that’s easy, I thought but did not say out loud, because we have always loved going to restaurants together, because I am as obsessed with food as I was when he me, because I am sick of cooking every night, then sitting in front of Jeopardy while we eat. I bit my tongue and said only that it might be a nice change of pace.

For the next few minutes we drove in seemingly pleasant silence—Ralph oblivious to my private stewing over being cheated out of a good meal—but then I suggested we take a different route to the interstate, one I know but Ralph doesn’t remember, so we would avoid the heavy traffic that comes after five.

A big mistake. Since I was driving I should have kept my mouth shut and just gone the way I wanted. Ralph again became adamant. He said my way was further than his way, that I was wrong about the time it would take. His voice rose with his anxiety. Before his diagnosis, I would have argued back, and screaming would have ensued. Instead I followed his route knowing it would be a disaster.

The tension barometer in our car rose not helped by my audible sigh with each minutes that clicked by. After sitting in the same line of unmoving cars for thirty minutes, Ralph turned to me and full of contrition said, “I forgot how back traffic gets. Next time you should just override me because you know better.”

Guilt immediately washed over me. How could I be mad at a guy who so willingly apologized and acknowledged his limitations?

Well, I could. I might be guilty about it but I was still mad. Mad because I was craving a nice meal out. Mad because planning the wedding has been a difficult but special time for all of us and I wanted this chance to share a sense of celebration with the two lovebirds. Mad because we were now stuck in traffic when we could be halfway home if I’d taken that left turn I’d wanted (and we’d be halfway through dinner by now if gone out with the kids). I was mad because I gave in unnecessarily. Oh wait, was I mad at him or myself?

I began writing this post with threads of resentment still clinging to my psyche. Petty bickering and small issues that blow out of proportion are part of most marriages; they were certainly part of ours before Ralph’s diagnosis. But they feel different now, complicated by moments of condescending pity knotted with bursts of affection and flashes of appreciation for the man Ralph remains. Complicated most of all by my own ambivalence at becoming what I always thought I wanted: the one in power, the one in control.

Joining our Early Alzheimer’s Support Group

Support and Research, , , , , , ,

 A few posts back I wrote about my first one-on-one encounter with another spouse/caregiver. Reader “boomer98053” commented that I might consider a support group. I did more than consider, I joined one ASAP. The eight-week Early Alzheimer’s/Mild Cognitive Impairment support group I settled on was supposedly for Ralph and me, but frankly I was the one feeling the need, and what appealed to me about this group was that the caregivers met separately from those they care for.

The week before our first meeting, I soft-pedaled as I do many decisions about our lives lately, telling Ralph we were scheduled to attend a training program. I doubted he would agree to anything called a support group. Or maybe I was projecting my own ambivalence about admitting either of us was the kind of person who needed the support of strangers. In any case I expected him to protest the way he did for most of our marriage whenever I made a decision without checking with him first.

Instead, he gave only one half-hearted sigh before agreeing he’d try one session. I quickly notated his calendar but didn’t mention it again until the morning of the meeting. I have learned it’s a waste of energy to remind Ralph about activities and dates ahead of time.

No surprise that he had no memory of any meeting to attend when I did tell him. The surprise was that once he checked the calendar he was perfectly willing.

As we drove to the meeting Ralph asked, “What is this new test going to be about again? I am sick of tests.” I explained that he wasn’t going to have to take a test this time. He was just going to talk to other people with early memory loss.

Then he asked again and I explained again. And again. Anxiety definitely affects his memory (and mine).

But once we both admitted we were both anxious, we laughed and relaxed a little. He almost seemed enthusiastic.

Then, less than a block away from the parking lot, Clifton Road was blockaded. We had to turn around and follow the line of other cars trying to find a new route. Circling around to enter Clifton from the opposite direction, we got stopped again. We ended up far out of the way.

Given we were going to be late if we made it at all, I expected Ralph to suggest we head home. And I was feeling almost frustrated enough to agree.

Instead, his anxiety had morphed into concern about missing the meeting. When we arrived half an hour late, just like everyone else, he was as relieved as I was.

Before the groups divided, the facilitator asked all of us to introduce ourselves.

Glancing around the room, I vaguely recognized one of the women as someone I had known slightly years ago although I couldn’t remember how. I began to fantasize about the friendship we would build over our common care giving until I realized she was the impaired one in her family.

When it was Ralph’s turn to speak, he said simply “I have a memory problem and am taking a drug that helps.”

Wow. I cannot describe the rush of pride and love and respect I felt.

In the separate meeting of the care-giving spouses that followed, we re-introduced ourselves in more depth, describing the problems we each faced. There were about the same number of men and women, most of us in our sixties, a couple younger, several older. We, or rather our spouses, had all received relatively recent diagnoses. We were all in some degree of lingering shock.

At first as the others described their situations, Ralph didn’t seem as far along as many of the others. Although I found the group congenial, I began to wonder if I had joined us up too soon. But the more we talked the more I found myself enjoying the honesty. That others got impatient too was an enormous relief.

Ralph looked less than thrilled when we came back together after an hour. But not for the reason I expected—not because he thought he didn’t need to be there but because one woman hogged too much of the time. He told me with some pride that the social worker had complimented him on keeping a calendar and being forthright about his problem He said the rest of the group seemed perfectly normal.

He seemed downright enthusiastic about returning. In fact as soon as we got home he added all the meeting dates to come down on his calendar.

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…

Tracking Changes, , , , , , , , ,

 

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?