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.

 

 

 

 

 

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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….

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.

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.

RALPH’S TRACTOR: TRIALS AND TRIBULATIONS

 

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In the last few weeks, Ralph has been in rare good form around outsiders. At a Labor Day gathering, he bonded with one of my more difficult professional associates while they shared a secret smoke on the back porch. Then for a week he totally charmed three medical students who evacuated to us from Florida during Hurricane Irma. The kids, whom we’d not met before, could not hear enough of Ralph’s stories.

But during this same time Ralph’s complicated combination of memory loss and memory fixation has rotated in a whirlpool around one small—although physically not so small—issue: Ralph’s John Deere tractor.

He loves his tractor, the same way he loved his boat. When it became clear he could no longer manage the boat, our family came up with what turned out to be a perfect solution: Ralph gave the boat to our son-in-law but got to remain Captain Emeritus. Ralph loves the arrangement.

But the tractor, unlike the boat, is actually a necessity in our lives, not something we can give away; as long as we live on the farm, we need the tractor to mow our hayfields. I can drive the riding mower on the lawn near our house, but I am too mechanically challenged to drive the tractor. So is our handyman. As for Ralph, he says he is still capable, but he fortunately shows less and less interest in operating that big, potentially dangerous machine. The few other relatives Ralph trusts with the machine—my brother, my daughter, my son, my son-in-law—all live far away, but if fields are mowed three or four times a year that would be fine.

My brother mowed the fields last spring.

They were not mowed over the summer. My nephew who stayed with us for several months over the summer offered to help, but Ralph kept saying that he needed to do “a little work on the tractor” first. I frankly didn’t pay much attention, my own avoidance mechanism at play. My nephew went back to D.C. The “little work” never got done.

The grass in our fields has now grown at least as high as the proverbial elephant’s eye.

A few weeks ago, Ralph announced that the tractor’s problem was a leaking hose he couldn’t change himself. Without telling me, Ralph evidently called the number he had for Mr. B. who always did our tractor repair. Ralph announced that Mr. B. has retired but someone was coming out to fix the tractor.

I know, I know, I should have stepped in right then and called the number myself to get the details. Haven’t I learned by now that Ralph and service people don’t mix? And so began the following saga.

The next day I noticed that the tractor had been moved back into the barn. Ralph couldn’t remember moving it. I called and talked to Mr. B’s grandson C.B. He said he’d been out to our farm, had talked to Ralph, had ordered the hose replacement and would be back to put the hose on once it arrived. Ralph had no memory of this visit. For the next few days Ralph continually asked me about the tractor because he couldn’t hold onto the fact that the hose had been ordered. He didn’t remember talking to C.B. and didn’t know why the tractor was back in the barn. But he kept repeating that he didn’t trust C.B.’s competence since C.B. hadn’t accompanied his grandfather on previous repair visits. “He’s no Mr. B.” There was no way to convince Ralph otherwise.

A week went by. I called C.B. to ask how much longer before the hose would be in. C.B. said he’d already been out and changed the hose. I told Ralph who looked at the tractor and remained adamant that the hose had not been changed. He was more convinced than ever that C.B. ”Was no Mr. B.” I frankly had no clue. I called C.B. who promised he had changed the leaking hose. Ralph swore he hadn’t. I called C.B. yet again, apologetically explaining Ralph’s memory problem and asking that C.B. please call me from now on. C.B. said the green hose Ralph kept bringing up was not the one that was leaking. I told Ralph that C.B. had changed the small black hose, not the long green one Ralph thought was leaking. Ralph swore C.B. had changed the wrong hose. After all, “He’s no Mr. B.”

Nevertheless I got Ralph to turn on the tractor. The leak was gone. I stood beside Ralph and dialed C.B.’s number. While C.B. directed Ralph around the tractor so he could check the hoses, I stood by taking notes. After many, many repeated questions and answers, Ralph finally seemed to accept that the correct hose had been changed. I breathed a sigh of relief.

Too soon. The leak was gone but the tractor’s back end that connects to the bush hog would not go up and down. Ralph was sure C.B. “who is no Mr. B.” had broken the tractor.

I called C.B. He promised to come check the tractor again. A few days passed. Ralph became increasingly fixated into his loop of questions and refrains: Had the leak had been fixed? Which hose had been changed? C.B. was no Mr. B. (who had been reduced to being C.B.’s uncle. Was there some problem with the tractor?

C.B. arrived driving a large truck to haul the tractor back to his shop if necessary. Ralph climbed into the tractor and started it up. C.B. pushed a lever by Ralph’s seat. The back end rose and fell perfectly. Ralph and he tried it again. It worked again. And Again. And Again. Ralph agreed the tractor was fixed. C.B. left. (I am waiting for the bill.)

A happy if mysterious ending. C.B. said it was possibly air in the fuel line that needed to work its way out. But I can’t help wondering if Ralph was pushing the wrong lever? Or was it something else? There is no way for me to know.

But when Ralph announced he planned to mow the field yesterday morning, I quickly pointed out that he needed to rest up for his art class that afternoon. He agreed and hasn’t shown interest in mowing although he continues to ask, “What’s the status of the tractor?” multiple times a day.

I know I’ve been describing a relatively minor series of snafus. I can’t quite capture how and why the situation exhausted and depressed me so deeply. Except that it encapsulated the grinding frustration and irritation that so much of our life as become.

And yes, I am about to invite my brother down for a mowing trip asap.

FACING THE DARK EMOTIONS OF CAREGIVING

EMOTION.jpgI want to share Joy Johnston’s recent post COPING WITH THE DIFFICULT EMOTIONS OF CAREGIVING on her site The Memories Project and also try to answer the question Joy raises.

Joy writes:

“Caregiving is a tough task, both physically and emotionally. There are many emotions that can arise while one is a caregiver, and many are not pleasant. However, it is important to recognize, acknowledge and process these feelings. Caring.com offers an excellent article, The 7 Deadly Emotions of Caregiving: How to Cope

The 7 emotions the article focuses on includes:

  • Guilt
  • Resentment
  • Anger
  • Worry
  • Loneliness
  • Grief
  • Defensiveness

The article explains how these emotions arise while caregiving, the risks that come with these feelings and most importantly, what you can do about it. Many caregivers will find the above list familiar; some of us will experience one emotion more than another. For my mother, it was loneliness and worry; for me, it was worry, guilt and resentment.

I think it is important as caregivers to acknowledge what we feel, and equally as important to figure out how to best process these emotions so we don’t damage our own physical and mental well-being.

What caregiving emotions do you feel most consumed by, and how do you cope?”

Most consumed by? Hmmm.

Guilt is always with me, because I am so frequently full of Resentment, Anger and Defensiveness, the terrible trio that I fight constantly if often unsuccessfully. Worry, too, because it is generally tied closely to Guilt, Resentment, Anger and Defensiveness. I find it impossible to eliminate or even order my priority of emotions. Loneliness is strongest when I am beside Ralph unable to share in the communication on which our relationship was built. Grief seems a bit strong, overblown and pretentious for what I feel since others have much more to grieve about. But maybe if I’m honest I work to repress the primal strength of grief because typing this sentence a black wave of emotion washes over me, emotion I do not want to feel.

Of course we are all dealing with these emotions in one way or another everyday in small and large moments. But looking at them as a whole has given me a sense of perspective I can easily lose or at least forget.

 

(P.S. Thanks again Joy, for allowing me to share and for asking the question.)