Category Archives: Uncategorized

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!

 

 

 

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SORRY TO SOUND LIKE A BROKEN RECORD, BUT….

broken record

 

“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.

Ralph’s Annual Mental Check Up

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Ralph had his yearly mental check up yesterday. A slow learner, after four years I have finally realized that there is no reason to bring up appointments ahead of time. So when he woke up at eight, I announced we had to be ready in two hours to head to Atlanta to see his doctor at Emory. Of course, Ralph was a little tense on the drive in, but less anxious than he would have been if he’d had more time to worry. And I didn’t have to have the following conversation in the car more than a few times.

Head or hands? he asked. (We have seen a dermatologist at Emory recently as well so asking this was a positive sign.)

Head.

What are they going to do?

Ask you some questions probably.

Will it take long?

I don’t think too long.

I am not looking forward to this.

I nodded but secretly I have come to look forward to our Emory visits with Nurse Practitioner Stephanie V. While Ralph gets his testing, Stephanie always meets with me alone for an update, a conversation that I find strangely comforting. She asks my impressions, and then lets me ramble a bit. Her advice tends to be straightforward and useful. She never fails to ask how I am doing. I always get not quite teary but close. I always leave feeling reassured that I am handling things better than I thought.

As for the appointment results… Amazingly, they showed exactly what I told Stephanie I’ve sensed: that his objective memory, for words for instance, seems to be holding steady; but that he seems to be having more difficulty  carrying on conversations or activities like following directions that require more complicated processing.

In the testing Ralph actually improved his memory for words, remembering more animal names and more words beginning with the letter F. (At least that’s my memory of the results—in fact as soon as I leave Emory my own memory of what has been said becomes a bit of a blur.)

What dropped was his ability to connect the dots when he had to include numbers and letters, i.e., go from number to letter to number. The test, which he completed without errors last year in 70 seconds, took him 120 seconds this year with several mistakes. In other words he is having more trouble with more complicated linkage.

I am not sure how to read this reversal in strength and weakness and don’t think it matters too much. Basically, the holding pattern we have been in still holds and will keep holding until it doesn’t.

Ralph’s Night to Shine (And Forget Alzheimer’s)

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It never fails. Whenever I start complaining about my life as a caretaker spouse, events remind me to shut up, stop griping and recognize the good stuff.

Case in point, we had house full of guests last week:

My 20-something nephew living with us for the summer while doing an internship; my 13-year-old (step)granddaughter was having one of summer weeks at the farm; and a photographer from out-of-state here to defend (with my support) her local portrait project, which was being attacked as too controversial by some members of the project’s sponsoring art organization board on which I serve.

So the five of us were sitting around the dinner table, one of those big group meals at which Ralph and I used to excel and which I tend to avoid now because I hate sitting beside Ralph as he withdraws into silence unable to follow the thread of conversation. What I usually feel is a mixture of guilt that I am not finding a way to include him and impatience that he is ruining my enjoyment. (And the truth is it is my responsibility to make him comfortable in a variety of situations and I sometimes chafe under that responsibility.)

What I felt the other night was, well it was envy. Ralph was so damn charming that the three others at the table—for whom I’d been working all day to entertain in different ways—were enraptured. Even the 13-year-old, jaded as only a 13-year-old girl can be—sat up straight an listened with fascination as Ralph told his stories about meeting MLK Jr. The photographer leaned over to whisper how handsome he was. My nephew acknowledged that Ralph scared him when he was a little boy. “You weren’t mean, but you were stern,” my nephew said. The 13-year-old smiled slyly because the Ralph she knows is a pushover softie. Ralph agreed with her.

My envy reminded me how I used to feel in my introverted twenties when I was in a group setting with Ralph and he was the energy force around which everyone orbited. In those days I was obviously drawn to his charisma, if a little jealous of sharing it with others.

This envy was oddly refreshing. I admit I kind of like my new role as the social butterfly in our marriage but it can be tiring. I have become so used to being the one responsible that it took a moment for me to relax and let Ralph hold the limelight for a change. Once I did relax, what I really felt was wifely pride in Ralph’s charm. And even a little wifely love.

(But I can’t get too Pollyannish because the next day, exhausted by his social efforts, Ralph was more foggy than ever.)

Another’s Sorrow

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The other day a friend with whom I’d fallen out of touch let me know that her husband had died suddenly and unexpectedly in the last year. Although I’d met him only a few times, and his was certainly not the first death I’ve heard about lately,  the news struck an unexpectedly sharp chord.

The thought of one’s one mortality is inevitable when someone else dies. Death has becomes a tickle at the back of my thoughts over the last few years , and although I have more or less adjusted to the fact that Ralph has cognitive impairment, I don’t like to be reminded that I am aging too, that my capacities are altering. But I also found myself disturbed for reasons less socially acceptable, less acceptable in every way.

Even as I mourned his death and felt deep sympathy for my friend’s sorrow, I found myself comparing marriages. My friend and her husband had shared a long marriage, one of those rare solid marriages that withstand challenges, obstacles and the inevitable periods of disconnect that happen to us all, only to grow stronger with the passing years. While there had been physical impairments, they had shared travel and adventure right up until the end. Ralph and I share so little. The stab of petty envy I felt was ridiculous—she’d lost her husband for heaven’s sake—but I felt it.

And what’s worse. I also found myself envying the purity of her grief, longing to possess that capacity for heart-wrenching love for a spouse. My love has become so mottled.

These are embarrassingly ugly reactions to another’s loss I know. But I record and sort them out so I can put them aside. Grief is complex. I am only beginning to navigate its complicated waters.

 

Caregiver Brain Drain

 

 

cloudy.jpgLast week I wrote about Ralph’s concern over his IQ dropping.

This week, I’m worrying about my own brain. I walked this morning with a friend who has done a lot of caregiving herself in the last two years, though not for Alzheimer’s or dementia. As we chatted about responsibilities, etc., she admitted with a laugh that she was feeling less smart these days. I almost hugged her in relief. “Me too, me too, me too.”

She blames being exhausted.

And that is part of it.

But, in my case at least, there’s more than physical tiredness at work. (Of course, after typing those words, I felt a huge urge to close my eyes for a just an itty-bitty nap.) It’s a kind of emotional depletion.

Since returning from my semi-hiatus in GrandBabyLand, I have had some trouble re-adjusting to the reality of full-time life in Memoryland. Ralph’s memory and what he calls fogginess may or may not have worsened, but I am finding it harder to navigate.

I know perfectly well and remind myself regularly that our situation could be a lot worse. He is physically healthy and still more than able to care for himself. His memory is shot but he still knows his place in the world and can “pass” as normal much of the time. He is not angry or depressed. When I read about others in much more difficult situations, my heart goes out to them. My impatience with Ralph’s inability to carry on a conversation about some issue that I happen to be fired up about, my annoyance when I’m stuck with some chore he used to do, these are obviously petty problems in comparison.

And yet. And yet. Thinking for two is draining. Always putting his needs first is draining. And allowing myself to share/embrace the less demanding mindset/lifestyle he requires is not draining, but way too easy.

Am I mentally tired or mentally lazy? Probably a little of both. Spending as much time as I do with Ralph, repeating and explaining, making sure his life runs as smoothly as possible, acting as a buffer between him and his anxieties, wears me out. But there is also something lulling about the undemanding simplicity of the life he prefers and which I increasingly share. It is tempting to limit my focus on our meals, our pets, the weather, small housekeeping issues, and the novels we both love to read. (I spent the last few days, in fact, re-reading Trollope’s Barchester Towers, to escape the upside-down political realities and to refresh myself enough to write here.)

But carrying out tasks, and even taking on new ones like volunteering, is not really the real problem. “Chop Wood Carry Water” and all. More difficult these days is thinking. Anxiety affects my logical and organizational thinking now that I am making decisions for Ralph as well as myself, particularly in areas where he used to excel like financial and future planning decisions—decisions I frankly don’t much want to make or think about at all. Nevertheless I know I handle them competently enough to get us by. What I am not doing is creative thinking. I don’t seem to have room in my brain. And so far at least, “Chop Wood, Carry Water” has not cleared the way.

If I am honest, what has paralyzed, or at least enervated me is a growing fear of what the future holds. For years now, I embraced the present, the plateau I have written about here. I didn’t let myself think about the future. That future is harder and harder to ignore. I see the small signs and I begin to envision the possibilities. Not only the realities of Ralph’s eventual mental and physical downward slide, of the eventual need to face moving, but of my own eventual diminishment. It is incredibly frightening.

Yet, the flip side is that in facing my terror I also receive the gift of empathy, because I can’t help realizing this terror is what Ralph faces every minute of every day. And that recognition gives me a greater capacity to appreciate him and our life together.

Which is a good thing since we are about to drive alone together for the next six hours…..