Category Archives: Alzheimer’s Spouse Issue

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….

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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.

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.)

A DIFFERENT KIND OF COGNITIVE TEST: REAL LIFE

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After writing about Ralph and my experience with organized cognitive tests, I watched Ralph in action in a different kind of cognitive challenge last Friday.

Living in the country without door-to-door garbage service, I travel weekly to the recycling center. I drive Ralph’s truck and take along Lola the dog for company. I drink a diet soda on the way and occasionally (read every time) treat myself to a candy bar afterwards. There is something oddly satisfying about coming home with empty cans and baskets.

But recently I pulled a back muscle grandmothering a bit too exuberantly and have avoided bending/lifting ever since. Meanwhile our garbage began piling up.

On Friday I couldn’t stand it any longer and announced to Ralph that after lunch we were heading to the dump. Now Ralph usually helps me load the garbage into his truck. Once or twice he has driven with me to the recycling center, which happens to be across from the location of his art classes. On those two occasions he enjoyed sitting in the truck with his dog and cigarette watching me unload, a choice I made because I figured I would be faster. He has never participated in throwing stuff away.

Recycling is does not require much detailed thought. After throwing unrecyclable garbage that’s been put in county bags, into a dumpster, I mindlessly divide everything else to toss in the marked bins. You probably know the drill: aluminum, plastic, newspaper, junk mail, cardboard, and glass by the color.

For Ralph our recycling trip was a challenge.

The dogs didn’t help. We decided not to bring them because old Zeus has trouble climbing into the truck these days so Lola needed to stay behind to keep him company. But then Zeus hid under the house so there was a bit of a kerfuffle until he showed up as we were backing out of the drive way  and we got him into the house. Ralph, already nervous—he’d called me three times while I was running to the bank beforehand to ask what he’d have to do—and now he was worrying about Zeus’s health as well as the garbage.

Usually I drive us everywhere these days, but driving Ralph’s truck with a bad back was not an option. It has been awhile since I sat in his passenger seat with him behind the wheel. He drives very carefully, going 35 in the 45-mile-an hour zone until I suggested, with mild (I hope) impatience, that he might consider the speed limit. (He does drive very carefully so if you are asking, as I do frequently, Is it safe for him to drive?, the answer is I think so as long as he doesn’t have to worry about finding his way alone. I hope I’m right)

In any case, we arrived safe and sound. But our time at the recycling center was not fun. Despite large clear labeling on the bins, Ralph could not keep track of where anything went. His difficulty was that I was asking him to combine several unfamiliar activities at once. I could feel his frustration mounting. I took a deep breath, had him bring the recyclables to me at the biggest bin, did as much emptying as I could manage and directed him hither and yon.

No stops for candy bars on the way home. But I thanked him profusely for his help. And Ralph was like a small boy desperately wanting to do well at a chore that was slightly beyond him and thrilled when he made it through.

Seeing him react, I realized that I have been letting him slide. If a situation might be difficult, I’ve avoided it. But Ralph can live with a little anxiety, and a gentle challenge enlivens him. So the next day, Saturday, I announced to Ralph that we were going into Atlanta to see the Andy Warhol exhibit at the High Museum. Painting is one of Ralph’s only activities after all.

He wasn’t thrilled but again he reluctantly agreed.

I drove.

On the way, when Ralph announced he was hungry, I got him to eschew his standby fast food choice. Instead we had lunch at the museum café. Suddenly Ralph got into the spirit. He talked about the courtyard artwork with enthusiasm, he ate with a gusto rare for him these days, he wandered through Warhold exhibit reading all the placards and studying the pieces. He tried to get me to buy stuff in the gift shop. Afterwards we paid a short visit to friends who live near the museum, and he was sharp as a tack.

Of course he doesn’t remember the trips to the dump or the museum or the friends. But I remember for us.

(PS Coming soon: The Tractor Drama unfolding as I type)

Thanking Merck For More Than Ralph’s Meds

 

I was sitting down to write about one of Ralph and my typical bittersweet interactions (a story that will have to wait) when I glanced at my on-line NY Times and saw this headline: Trump Attacks Merck Chief Kenneth Frazier for Quitting Advisory Panel

I admit I felt a swell of emotion when I read the article that followed.

 Like most Americans, I have less than warm feelings about the pharmaceutical industry,  which has caused much of the rise in health costs here. While Merck is behind the Alzheimer’s study Ralph is participating in, and which I have written about here as seeming to help Ralph, I never really thought much about the company itself. Just another giant corporation to distrust.

And like most Americans I was deeply distressed by the events in Charlottesville this weekend, and particularly distressed that such unapologetically violent expression of racism, homophobia and xenophobia is becoming normalized here. I am no fan of President Trump, but I really did hope he would put ego aside and rise to this occasion.

As Mr. Frazier tweeted, in quitting the President’s panel, “America’s leaders must honor our fundamental views by clearly rejecting expressions of hatred, bigotry and group supremacy, which run counter to the American ideal that all people are created equal

According to the Times article, Mr. Trump quickly sent a nasty tweet in response. The fact that Mr. Frazier happens to be black only adds to the drama. As I am writing this in real time, I realize that when you read this post, the news of the back and forth between the President and the CEO will probably by old hat.

But sitting here about to write about my daily private life with Ralph and Alzheimer’s, the news feels very personal. I never thought I would be proud to be associated with a drug company, and yet here I am bragging of that association.

Aren’t life’s interconnections strange and wonderful.