Tag Archives: Alzheimer’s spouse personality changes

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.

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The Zest Deficit– Cognitive Impairment is More Than a Loss of Memory

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I spent last weekend in NYC, visiting my son and old friends, going to restaurants and museums, carrying on lively conversations about politics, art and philosophy. I came home five pounds heavier but energized, reminded that there was a world out there and I was part of it.

I almost added to the above paragraph, “Also guilty” because that has usually been the companion feeling when I enjoy myself without Ralph. But I am not sure I did/do feel guilty. Pre-Alzheimer’s spectrum Ralph would have wanted to share that energy, would have been jealous that I was getting to have experiences without him, would have missed me, would have made me feel guilty. Ralph as the person he is now does not feel as if he’s missing anything when I go out into the world without him. He is thoroughly content to sit in his “office” or in his porch rocker or at the kitchen table as long as his dogs, his cigarettes and either his beer or coffee are nearby. When I walk in the door, he is glad to see me but more interested in returning to his chair or to bed.

Still having been gone a few days having fun, I wanted to offer a nice meal to Ralph last night. I asked if he’d like anything special for dinner. I am a pretty good cook, and Ralph used to have very definite ideas of what he liked to eat and very large appetite. Eating was always one of the bedrocks of our relationship. We shared an enthusiasm for trying out the newest, most cutting edge restaurants in any city we visited. For choosing the most exotic and/or spiciest choices on any menu. And for experimenting at home with made up recipes.

“Whatever is easiest,” Ralph said last night, as he has said every time I’ve asked lately.

No suggestion I made could draw any enthusiasm. So I threw some leftovers together and was done with it.

We woke this morning to a beautiful fall day. Dry but not too dry, a few clouds in the blue sky, a slight wind ruffling branches still full of green leaves, the temperature in the temperate 70s. The perfect day for a walk.

I asked Ralph if he’d like to take one with me.

“Not really.” He wasn’t being mean. He just wasn’t interested.

Ralph used to walk every day. I was the lazy one he had to drag along.

Along with a loss in memory has come what I can only call a loss for the zest Ralph used to take in life’s small pleasures. Yes, witnessing this change makes me sad, but I have to acknowledge that Ralph is not sad. He is content. I am the one who feels discontent. When I throw a slapdash dinner together or skip a walk for lack of a human companion—and I do both with more regularity than I like to admit—I feel that I am letting myself be diminished, or more honestly, am diminishing myself. It scares me how easy I find it to sink into the featherbed of sloth. Am I using Ralph as an excuse or is Ralph’s condition wearing me down? I’m not sure, but the fact is that my new normal is the color gray. (In fact, I actually found myself thinking last night that I wanted to reupholster the living room chair in gray fabric.)

The New York weekend reminded me that highs are still out there to experience. Of course, so are lows. For Ralph, he’s found peace in passivity as his world shrinks. I have to decide whether I let my world shrink too.

Meanwhile, I think I’ll take that walk with Lola the dog now.

The Business of Remembering…A Sense of Time and Identity

The business of remembering what you did that day, or what you might want to do the next, I think, is essential for creating an overview of your life – that overview is what fuels plan-making and that ties in deeply with identity.”

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In case you missed it, this comment was made about my last post by  Jabberwalk, who writes with great insight and honesty at her own site Caregiving in the Forest.I can’t stop mulling over the implications.

Time is the trickiest part of life for Ralph. Almost the first thing he asks each morning is what day of the week it is. Sometimes he remembers what he did or parts of what he did yesterday, sometimes he doesn’t. Often he misremembers. He doesn’t like the confusion his lousy short-term memory breeds, but he lives with it by asking for a rehash over and over hoping for clarity that seldom comes.

We all fear the loss of short-term memory, but the problem of future memory is in some ways more troubling. When Ralph looks forward to what comes next, what he seems to see is an anxiety-producing obstacle course. Since he can’t hold on to the facts of place and time, he becomes increasingly anxious each time he asks again Where? but mostly When? The issue for me becomes how much information does he need, how much is a burden.

Not only do I make the scheduling decisions, but I also end up structuring what he thinks about that schedule, and therefore what he thinks about period. In other words, I am taking away or at least shrinking his overview.

His sense of identity has certainly shrunk. Yes, he is an increasingly passionate dog lover because dogs demand so little and remember on their own. And he remains a husband, not an equal partner perhaps but genuinely grateful to his wife for filling in the blanks. He is still a father too, although his memory of the kids’ childhoods is sketchy and he keeps up less and less with their adult lives because he finds tracking the details so difficult. He was glad to let go of his professional identity and hand me that responsibility early on. While he can be charming in social encounters, his interest in friendship and being a friend is limited by his difficulty remembering who people are, their names of course but more importantly, their connection to him. While still capable of moments of remarkable perception, he is no longer interested in being an intellectual or armchair philosopher because it requires remembering a train of thought.

I remember lots of trains of thought. I carry around layers of overview based on the different roles I play—wife, writer, friend, woman, businessperson, spiritual seeker, reader, political thinker, mother (Note that caregiver is not on this quickly written list—a Freudian slip I just noticed myself).

These roles operate within and are influenced by the various ways I frame my time. There is the constant background hum of long-term, generalized plans still under construction (i.e. How much longer until we need to downsize? What are my options if/when needs professional care?). More immediately, there is the weekly erasable-board calendar that Ralph and I live by day-to-day; there is the monthly wall calendar as well as the one on my phone. And there is the semi-conscious minute-by-minute and hourly tracking most of us fold into our routine (unless we are on the Alzheimer’s continuum and struggle to remember whether we ate lunch already) without much conscious thought.

But what has always been almost second nature, like making coffee as soon as I get up in the morning, is getting more difficult. Lately I have trouble both keeping my plans organized and keeping a hold on my sense of self within those plans, largely because of the important role-identity I just caught myself forgetting to include above. Caregiver, leads to another identity: AliceasRalph.

Keeping Ralph’s life organized and reminding him what he is doing on a given day means I also remind him why and how he feels, which means I make an effort to get into his head to understand his mindset. Thus is born AliceasRalph, who often ends up as confused as he is by his confusion about whatever I am trying to explain. Our weirdly opaque discussions can sound like the old WHO’S ON FIRST comedy routine.

Ralph’s overview of his life, if not lost entirely, is definitely tangled. And because I am both Alice and AliceasRalph, my overview is pretty tangled too. Not hopelessly, but moving forward requires vigilance as I ceaselessly work to untangle the delicate filaments without breaking them.

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PANIC ATTACK! (mine)

IMG_0342It is 3:57 and I am wide awake thinking I may have screwed up royally this time.

We are at our vacation cottage in North Florida (actually a garage apartment with no house attached but that’s another story for a another time). We got here around seven this evening after a rough day. I had risen early to bake brownies for a baby shower I was co-hosting at a friend’s house . While I was at the shower, Ralph and my 12 year-old granddaughter loaded our truck according to my checklist. When I got home at noon, I quickly cleaned the brownie pans, went over the checklist, packed the coolers, and into the truck we all jumped.

It was a long drive of especially after we received a couple of texts from our daughter and son-in-law who arrived in Florida the night before.      1. They texted that the garage was infested with fleas and they had set off a flea bomb.          2. They  mentioned that Ralph’s boat motor seemed to be missing a part.

So Ralph divided his fixated attention between the fleas and the motor, asking me questions I couldn’t answer on one issue, then the other for five hours. Thank God for the car games my granddaughter insisted we play. I have never enjoyed Ghost and Twenty Questions so much.

By the time we reached the cottage I was exhausted. We had a quick, late dinner before I unpacked and went to bed at around 11:30.

About an hour ago I sat up wide awake

—Ralph’s doc kit? The kit where Ralph keeps his toothbrush, his razor, his e-cig charger and his Alzheimer’s meds. The thought of it had pulled me out of my deep sleep.

Or rather the thought that the kit wasn’t in the black footlocker when I unpacked it. So I tiptoed barefoot down the narrow stairs and outside to the truck. One carton of diet soda left under the back seat, but no doc kit.

Which brings me to now.

My mind is racing: Ralph and my granddaughter said they had packed it when I went over the check list but why did I take them at their word. Ralph can’t miss his meds for five days, that’s the bottom line. It’s the wee hours of Sunday morning. Can he miss a day until I can get his doctor to call in a prescription Monday?

Up pops the angry question, “Why can’t Ralph remember one thing!” followed by the obvious answer, “Because he literally can’t remember.”

So it is my fault.

Why didn’t I check the truck before we left? When am I going to learn not to take Ralph’s assurance he has remembered as actual assurance? When am I going to accept that I have to check and double check behind him? When am I going to realize that I need to pay attention to Ralph’s needs with more undivided focus?

  This trip is going to be a disaster!

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Nine A.M. Sunday morning and guess what—

Disaster Averted. My wonderful, adorable granddaughter did follow the check list to the letter. She did put the doc kit is in the truck after all. It was lying on the floor by the front passenger seat where I guess I didn’t look carefully enough last night.

I am the one who forgot. I am the one repeating myself this morning. “I am so relieved!” “I am so relieved!” I am giddy with relief. (But really, I should have double-checked the truck before we left, and will not make that mistake again, for my own peace of mind as well as his well being.)

Now, if it ever stops raining, we might just have a good time…