All posts by MCI Alice

Living in the Moment

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BabyRalph’s first birthday is coming up at the end of the month. Ralph so enjoyed having the family together at Christmas that the day everyone left he actually agreed to drive with me  to New Orleans for the birthday celebration. Of course, I have avoided bringing up the coming trip too often to avoid unnecessary anxiety.

But yesterday I asked Ralph to help me put together one of BabyRalph’s birthday presents, a scooter. (I am not going to bore you with my own grandmother obsessing about finding the perfect present except to send a shout out to GG if you’re reading.) Of course, Ralph resisted at first, but as you can see he didn’t resist long. In fact he got totally into the project, which turned out to be the perfect level of difficulty: just easy enough for Ralph to manage and just challenging enough for him to feel good about managing. In other words, I actually could have put the scooter together myself, but not with Ralph’s innate ability using tools). It took less than an hour to complete the scooter and Ralph was really pleased. We both were.

So this morning, drinking coffee I brought up the scooter again. I told him the scooter would be his special GrandpaRalph present to BabyRalph, an idea he loved.

“So we’ll give it to him at Christmas, right?”

I looked at him and bit my tongue, the urge toward annoyed correction still strong.

“No his birthday,” I said as calmly as I could. “We just had Christmas.”

“Oh.” He looked flustered. “What month is this?”

“January.”

“Remember we had a big Christmas, everyone here.”

“Oh right, I forgot.” He nodded and sipped his coffee thinking. “Who came this year?”

I wonder how all those people who told me Ralph seemed cognitively better this Christmas would react to knowing he’d forgotten about their visit (and in some cases who they were to him) already.

In a nutshell this is Ralph, happy in the moment as long it lasts, his past and future fraying away daily.

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Physical and Cognitive Health Collide:  Dentistry the New Tractor in Ralph’s Life

 

 

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Last Wednesday, the day after I congratulated Ralph and me on our comfortable status quo, I received a reminder from the gods—Never get too comfortable!

First thing that morning, Ralph fell down the stairs. He made it to the bottom step before he tripped so it was not a long or serious fall. But it was the second time he had fallen on that same bottom step in less than a month. Just before Christmas he had tripped and fallen, hard enough to dent the wall with his head. On both occasions he did not appear to hurt himself, although he has been complaining of some back soreness this time. But twice in a month! The possibility that he is no longer sure-footed, that he is fragile and at risk has freaked us both out.

Then that same afternoon, I took Ralph for his regular dental cleaning and check up. The dentist solemnly announced that she had found gum disease. Also a tooth that needed pulling. And another tooth that needed a crown. These are not big health issues in the large scheme of things, but to Ralph they became major crises. All the way home and throughout the evening he kept repeating, “This is a very bad day.” And I couldn’t help thinking he looked like the little boy in Judith Viorst’s classic Alexander and the Terrible, Horrible, No Good, Very Bad Day.

By Thursday when we returned to the dentist for the tooth-pulling, Ralph was a wreck. He didn’t understand why he needed to have a tooth pulled if it didn’t hurt, and he was convinced that having a tooth pulled was a major medical event. He also understood that he would have to see a different dentist, a periodontist, for the gum disease, and he swam into a state of anxious confusion over where he had to be treated (as if it matters, since I drive him there anyway)— the fact that we might have to drive to another town got lodged in his memory although he couldn’t remember why we were going there. But then he charmed everyone the way only he can, singing Dylan lyrics as they were about to inject him with Novocain.

It was afterwards that the real crisis sunk in. The dentist casually mentioned that Ralph couldn’t drink through a straw or smoke for 72 hours without risking a painful “Dry Socket.” I had her write on a sheet of paper in large letters THE DOCTOR SAYS NO SMOKING UNTIL SUNDAY AFTERNOON. Fat good it did.

As someone who has never smoked I realize that 72 hours would be a long time for any smoker to go cold turkey, but cognitive impairment compounded the problem for Ralph and made the next three days a Groundhog Day-like comedy. We enacted the same scene over and over. Picture Ralph walking in from the bedroom (where he’s been half napping most of the day) wearing a heavy jacket and a hat with ear flaps.

“Where are you going Ralph?” I say putting down my book and looking up from the living room chair I’ve chosen because it gives me a good view of both in the porch where Ralph usually goes to smoke and his car parked just outside.

“To have a cigarette.”

“You can’t smoke, remember.”

“Why not?”

You had a tooth pulled.”

“I did? Well it doesn’t hurt so it must be fine.”

“No, it needs more time to heal or you will have terrible pain.”

“How do you know?”

“The Dentist told us.”

“She did? Why did I have a tooth pulled?”

“It was creating a problem for your other teeth.”

“So I’m fine now.”

“Just one more day.”

“Then I’m done?”

“Well, no, you have gum disease. We have to go to the periodontist.”

“What will they do?”

“I don’t know.”

With a defeated shrug Ralph heads back to take another nap. Ten minutes later I catch him about to light an e-cigarette he’s found in some pocket or drawer.

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For months Ralph’s memory has been holding steady. But now he was confronting a specific demand to remember. What concerned me was not just his inability to remember that he couldn’t smoke. Or why he couldn’t smoke. Or that he’d had a tooth pulled in the first place. (“What did I have done to my ear,” he asked more than once.). But a more general cognitive melt down. He became foggy about everything. Hang dog depressed and beaten down.

I hid all the cigarette and e-cigs I could find. I also hid his car keys—if he could drive he would head up the driveway to his “office” in the barn to smoke. (Given his lethargy and the cold weather he wouldn’t walk even for a cigarette.) Sure enough while I was on the phone, he headed out to his car. And a moment later came back wild eyed.

“I’ve lost my keys.” His tone was frantic. I realized that hiding his keys might have been a mistake, one more sense of failure for him to face. So I pretended to find them. But an hour later I came out of the bathroom and had to rush outside out to stop him from taking off in the car.

“Where are you going?”

“I’m out of cigarettes.”

“You can’t smoke.” …And so the scene repeated and repeated every few hours.

We made it to Sunday at 4 pm. when restrictions lifted. I was/am exhausted. He was/is still groggy. Tired. A little more confused than he seemed a week ago.

Physical and mental health are so wound up in each other, I don’t know if there’s been a real slide or if this is a temporary glitch. By the time I figure it out, we’ll probably have moved on to the next stage anyway.

Here to Report: NothingHas Changed

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I have not written here for a month, the longest stretch of silence since I began this blog. Then today I was hit with Alzheimer’s—commentary, advice, anecdotes–everywhere I turned. Well, actually it was all on NPR, but the station seemed to be barraging me all day, reminding me I could only hide so long.

So here I am back to report. Well, to report that nothing has changed.

For instance, I am looking for a new tractor mechanic, again. In mid-December Ralph ran our previous new tractor man off while I was at the grocery store. First Ralph called while I was in the dairy aisle to say he was calmly explaining about a repair that was still needed when the repairman turned on his heels, jumped in his truck and drove away. Ralph was genuinely upset because he didn’t understand what he could have said that upset anyone.

As soon as Ralph hung up, the guy called to say that he would be glad to work with me but that he could not work with Ralph again, that Ralph had yelled and swore at him. I apologized, of course, but in Ralph’s defense, the repairman a big beefy Southerner with motorcycle style tattoos so I think he’s never heard swear words. And I had warned him ahead, several times, that Ralph is on the Alzheimer’s spectrum.

In any case, the repair issue upsetting Ralph is not a big problem according to Jason, our tractor saint who was able to operate the bush hog (see early entries for explanation of machinery I can’t really explain) slowly but adequately.

UNTIL THE TIRE BLEW. Fortunately,  a different company takes care of tractor tires. Someone came and changed the tire. Unfortunately, according to Ralph some lugs (is that the term) were lost along the way so the tractor can’t be run until they are replaced. But it’s freezing outside and Jason says he doesn’t need to mow again until the spring growth sets in.  So as usual the tractor is one hold.

And then there was Christmas. Fifteen of us together in one house for six days give or take. Ralph loved most of it. I was more ambivalent. Everyone kept telling me he seemed “better.” And with everyone around, Ralph was more energetic. He also drank more and smoked more. And I was busy being the silent keeper of things running smoothly. A tiring role especially for someone with flu-like symptoms. By the last night I was exhausted, or that’s the excuse I’m giving for why I put the electric tea kettle on the stove and turned on the burner.

“Why is the stove smoking like that” someone casually asked just before the flames shot up. Ralph was the hero who put out the flame while everyone else opened windows and tried to allay my worries that I might be catching up to Ralph on the cognitive spectrum. I hope they’re right but I have learned one thing:

Nothing smells less like Christmas than burning plastic.

Now Ralph and I are back to our quiet routine, him napping and me doing chores and organizing his life.

Frankly I couldn’t be happier. I am sure there will be more ups and down this year but for now I am perfectly at peace with the status quo.

Happy New Year.

Celebration Amid Stress

flowers                                              my bouquet from Ralph (with help from our daughter)

 

For most of this autumn all I could think about/write about was the tractor (back in the shop for yet more repairs due to user-error I suspect), which became the symbol of the stresses of life with a spouse on the Alzheimer’s spectrum. Now I find myself writing yet a happy description of our life for the second time in a row! Perhaps we have reached another plateau or perhaps I have adjusted to whatever plateau we have been on for a while…

The dangerous temptation to think Ralph is somehow getting “better” also pops into my mind, especially because as always happens, visitors over Thanksgiving commented that Ralph seemed better than they expected. He was better that usual because as also often happens, he is more alert and less passive around others—if he’s comfortable with them–than when alone with me. Since he was also the more genial, gentler post-diagnosis Ralph, he was a generally entertaining presence.

Not that rough patches didn’t abound in an eight-day week with a houseful of guests on the farm. But the stress caused by the tensions and physical ailments of other family members and friends had nothing to do with Ralph. If anything, he helped smooth some of the week’s rougher patches.

He also began to enjoy his grandfather role more, both with his older grandkids and with his namesake grandbaby whom he began to hold and cuddle even without being asked. In fact this morning, in our suddenly quiet house, he said he missed BabyRalph—who though exhausting was certainly not a cause of stress.

And Ralph really got into the small-scale festivities surrounding our 40th wedding anniversary. Actually so did our kids, who did a kind of countdown to midnight (and made us stay up way past our bedtimes) on anniversary eve, then opened a bottle of bubbly that we all shared while listening to the John Prine/ Iris Dement duet of “In Spite of Ourselves” that is considered by some to be “our song.” As we all shared that moment of silliness and laughing, a moment of euphoria, part of me couldn’t help observing in a kind of awe that I was having an experience with Ralph that I haven’t for a long, long time—the sense of being on equal footing, of standing together on the same ground, of being a wife more than a caregiver, of being loved not simply needed.

 

 

 

 

 

A Birthday Gift to REMEMBER

 

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We had a small dinner party for Ralph’s birthday last week. His favorite roast chicken and the above birthday cake, which made him laugh. As long as his sense of humor holds I figure we are doing ok.

As we stood around waiting for the chicken to come out of the over (a slight mechanical failure in pushing buttons having caused the cooking time to stretch longer than expected),  conversation turned mildly political. No one was disagreeing but people were analyzing causes and results.

Ralph suddenly became very heated, in a way he never gets these days, and accused a friend of talking down to him. Shortly afterwards he headed out to the porch, to smoke I assumed. A few minutes later he was back, relaxed and charming.

The same friend who’d just upset Ralph began discussing how his poor hearing has created problems for him when he has conversations. I could see Ralph was listening carefully and that the two men were bonding in a new way. Without any overt statement they were acknowledging and empathizing.

I was so enjoying this pleasant moment after the earlier upset that I almost didn’t bother to check my phone when it beeped that I had a tex. I’m glad I did.

The text was from my son

“Don’t tell him I told you but dad just told me he couldn’t keep up with ur convo and felt like he was ‘slipping’. Maybe make sure he’s being included. I think he stepped away from table to call me or something.”

“I told him ‘who cares’ just do your own thing blah blah.”

I texted back about the little almost argument and how much better Ralph seemed.

Oh good. I mean honestly was really weird cause he sounded really really down when he called. And then I kinda said that he like did sound a lot better, like a switch flipped. Was actually eager to get off phone and get back.”

I texted back that I found it “interesting” that Ralph trusted our son enough to call him under these circumstances. They have never had an easygoing relationship. Not understanding and even a little intimidated by his bookishness, Ralph recognizes he was too hard on our son as a kid and now is almost shy around him.

“Yeah, I was surprised, it was sweet.

The rest of the evening was a rousing success, Ralph more involved and emotionally present than he’s been for some time, and more openly affectionate with our friends than I have ever seen him.

But for me, the moment of pure between father and son (and mother and son) is the birthday gift that keeps on giving.

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P.S. Speaking of gifts, after one more crisis concerning a flat tire, the tractor finally seems to be working!

 

 

 

SORRY TO SOUND LIKE A BROKEN RECORD, BUT….

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“Perhaps machines or vehicles are the common thread,” my reader/friend Joared commented to me last week, a point so obvious I wonder that I had never considered it. So I have been thinking it over ever since.

Of course, Ralph obsesses about machines and vehicles. The same way he obsesses about money.

Machines, vehicles and money—they are the most potent examples of his former prowess, now lost.

When we met he was buying, refurbishing and selling old telephone trucks to fellow hippies. He was also at the tail end of renovating an old house he’d bought for a whopping $7,000, doing all the work himself from the electrical to the plumbing to sheetrock finishing to laying tile countertops. A few years later (with my younger brother as his assistant), he turned three wrecked Triumph sports cars into two immaculate ones. His work was immaculate, and the profits he made grew and grew.

Ralph was one of those annoying men who could fix anything. He had an innate understanding of both how things worked and how to make money.

Now I have to cajole him to change a light bulb, and if he actually does, I heap praise on him the way I would a kid. He has not paid a bill in years and can no longer figure a tip in a restaurant.

But he asks me repeatedly to go over the details of our finances although the figures immediately get jumbled. I get resentful because I am the one keeping track, but I see that he wants to maintain hid identity as a man with business sense—and in fact he does still have business sense. Today we were discussing our will, the same details I have gone over with him too many times to count, and he made a small suggestion that made complete sense and would avoid possible hurt feelings down the road. I made praised him with the same fuss I praise him when he changes that light bulb. He was thrilled and then forgot what the suggestion as well as the problem it addressed.

Two hours later we were faced with tractor crises part three. It came back to us looking fixed and shiny yesterday. I paid our new tractor guy his whopping bill. Today when our friend/bushhogger tried to cut the field, the darn machine would not do the job. Our new tractor guy was called back. A new leak was found along with possible but not certain other problems. Our new tractor guy loaded the machine back on a trailer off they went. I have a sinking feeling that instead of taking responsibility for more effort, our new tractor guy is going to blame the problem at least partially on Ralph’s years of neglecting the tractor. I am partly furious at Ralph, but how can I be furious at Ralph for MCI induced inattention to a machine any more than I can be furious at him for MCI induced inattention to our business in the last years before his diagnosis.

And how can I be furious at him when I sense he is probably aware that he has messed up in the very areas where he once excelled.

 

T is for Tractor Trouble Part Two

tractor boy.jpgBear with me as I return, briefly, to tractor travails.

As you may or may not recall, Ralph recently became more than a little obsessed when our tractor had a small problem. For weeks he drove me crazy about whether or not the hose had been replaced despite repeated confirmations that it had. Finally I convinced Ralph the hose in question had been replaced and breathed the sigh of relief I shared here….Way too soon.

Last week a friend tried to mow the front fields for us and discovered new problems, problems Ralph did not asked to be fixed.

I wasn’t present when Ralph supposedly called Mr. B., the elderly gentleman whom he’s always called for emergency repairs in the past and whose grandson replaced the hose. Ralph told me that Mr. B. promised to have Grandson call back. No call came for several days. But then again, Ralph no longer remembered calling Mr. B. Instead he kept asking if I had called him. Frankly, I dreaded making yet another call to these people whom I had badgered repeatedly at Ralph’s behest over the already fixed hose.

When I finally made myself punch in the numbers, Grandson told me that his mobile mechanic stopped showing up for work three days ago, the tractor side of the business was in crisis and he could no longer do our work.

Maybe I should have given Ralph more credit for his cognitive abilities.

Fortunately, I had another tractor repairman up my sleeve, someone recommended a month ago by the tile guy I used in my new role as rental properties renovator, the role Ralph always handled authoritatively and now the role that has taught me to use my forlorn, slightly ditzy wife of an impaired husband to great advantage.

Sammy showed up an hour after I called—my tile guy had evidently told him all about our situation and he was ready to jump into the breach. And when Ralph learned Sammy already services several of our more persnickety farming neighbors, he decided to trust him.

That’s the good news.

The bad news is that while Ralph called on Mr. B. for emergency problems (like the hose) it turns out that he never ever had the tractor serviced properly. The engine won’t rev high enough; the blades need work; there are leaks and missing screws. Etc. Etc.

Sammy promises he’ll have the tractor back in three weeks (after who knows how many dollars). The grass and baby trees keep growing.

Meanwhile Ralph moved on to obsessing about a horse trailer our former tenant on the farm left behind when she moved. In the last two days Ralph has asked me repeatedly, i.e. ten calls over two hours while I has waiting to have his truck serviced, (another story) “What is happening to the trailer? Is someone coming today to pick it up?” I have explained many times that nothing is happening with the trailer.

I am beginning to wonder if there is something about things beginning with the letter T (tractor, trailer, his truck which I just took to be service) that catches Ralph’s attention.

But really what this tractor business has made me consider is a little more personally troubling. I probably would never have known that Ralph let the tractor slide for years, when he was cognitively healthy, if he did not have cognitive problems now. I think about all the things I have let slide, the mistakes we all make in our lives and are able to cover up—I write this looking around my incredibly messy office—and realize that Ralph’s become transparent in a way I hope I never become but may with time. Which of my secrets and failures and foolishness will my caregivers uncover?

Living with Ralph, watching his struggles not only with memory but also with her sense of identity and control over his life, makes me look into the mirror in uncomfortable ways I might otherwise avoid.