Tag Archives: Alzheimer’s anxiety

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.

 

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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.

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)

RALPH TRAVELS TO BABYLAND WITH MIXED RESULTS

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The picture above of Ralph holding his namesake may be a bit misleading. During the recent ten days Ralph and I spent in New Orleans to hang out with our now three-month-old grandson, Ralph held babyRalph exactly twice.

And that was after much prodding.

But he did hold him. And he did survive ten days away from the farm. (In fact I had booked an airbnb for ten days knowing we might leave early if necessary.) So over all, I’d say it was a victory, a pyrrhic victory…

He was not unhappy. Our son came down from NYC to surprise Ralph and meet babyRalph. Big Ralph was pleased and quite animated the first night. After that he read his book and napped a lot on the couch while the rest of us cared for and played with babyRalph in the next room.

Mostly Ralph drank coffee or beer and smoked cigarettes on my daughter’s front porch. Pretty much the same way he fills his time at home. Fortunately, my daughter recently moved into a renovated New Orleans shotgun with both a front porch. By the second day, Ralph had met pretty much everyone on my daughter’s small street where the neighbors all interact —white, black, Latino, gay and straight, elderly and hipster. Everyone thought Ralph was charming because while talking to strangers who demanded only the smallest small talk, he came to life. But with us inside, he was slightly removed, in a vague fog or intimidated by the hubbub surrounding the baby.

Frankly I found grannynannying while watching out for Ralph exhausting. Physically exhausting because I was running him back and forth from the airbnb where he slept twelve hours every night while I helped with the baby’s early morning feedings. And definitely emotionally exhausting as I tried to be grandmother, mother, wife and caregiver.

On the drive home, we shared what has become a rare moment of genuine conversation. Ralph acknowledged that travelling seems to make his memory worse, that leaving the comfort of his routine was difficult for him. I said I could see that. Then we went back to listening to a Bob Dylan cd.

But the unspoken message hung in the air—no more travel for Ralph.

Moment of Reflection: Where We are On Our Alzheimer’s Journey

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Last week I had the opportunity to speak on a panel about caregiving in to a group of nurses and nursing students at Emory University in a conversation titled Lived Experiences in Coping. The other two members of the panel, the wife of a man with Parkinson’s and a woman who has MS, were actually nurses themselves so I was a bit intimidated at first, but I think I held my own (although I fear I went beyond my 15 minute time limit). And it was a fascinating morning as we shared perspectives and answered questions from the professionals who asked over and over what they could do to improve the care experience.

As valuable as the meeting was, what was most useful to me was the preparation. In the invitation to speak I was asked to discuss how we arrive at Ralph’s diagnosis, and how the news and illness trajectory have affected my and Ralph’s lives.

Not surprising questions or ones I haven’t thought about in the past, but ones I have avoided thinking about for a while. I used to take stock regularly to keep perspective, but lately it’s been easier (i.e. less scary or anxiety producing) just to rock along day by day without considering the long picture and the implication Being asked to talk at a symposium forced me into that area of necessary discomfort.

So what I jotted down:

Diagnosis came in 2013. Before that I didn’t want to think his memory problem was serious in part because his failing memory coincided with a personality change I liked. In fact I realize that for those few pre-diagnosis years we were in a SECOND HONEYMOON—he was less angry than he had been as a younger man and a sweetness emerged that he had not shown before. If he was secretly stressed, I didn’t choose to notice.

Then for maybe six months before the diagnosis, Ralph went from forgetful to what I found at the time annoyingly inattentive. I thought he wasn’t paying attention when I had to repeat things over and over. And he was often argumentative at night, so we went to bed angry at each other, but while I’d wake up still angry, he’d wake up denying there’d been any friction the night before. But still we were closer than we’d been for years.

Then his memory tripped him up more obviously—I have written about the fishing trip that made him realize something might really be wrong because he couldn’t keep up with the other guys—and he saw our family doctor who sent us for tests. Ralph and I were convinced he had Lyme’s disease.

Between taking the tests and learning the results we went from honeymoon to LIMBO. In real time I am only talking about a month or two from test to first diagnosis and another three months until we saw Dr. Lah at Emory’s Brain Clinic. But the period felt much longer—one of those crucial moments in time that stretches as if time has slowed down to allow for the heavy significance. We didn’t know much about Alzheimer’s. We were both anxious. Neither of us knew exactly what to expect but we were talking about it A LOT. I remember a car trip, six hours talking away, feeling oddly close as we faced an uncertain future together, both of nervous but open and oddly upbeat. The ride was actually kind of fun.

Then we got the diagnosis and went from Limbo to PURGATORY. One day he was one person, the next he was someone else. Not that his condition changed, but one it was NAMED, it was much more scary. Suddenly he was terribly, terribly anxious and suddenly I felt the need to limit plans, to take over his business (and close it), to act as a buffer between Ralph and all the people who didn’t know he had an actual condition that was causing him to act certain ways. Purgatory lasted for a long while. He seemed to slip dramatically and then, once he began his drug regimen, he regained some ground, only to slip a little more over time. His memory did not get worse—it was already terrible in the first tests—but slowly other aspects of the Alzheimer’s spectrum showed up, like passivity, lack of time awareness, loss of sense of direction, withdrawal from the world, and a general malaise along with the frankly beneficial loss of memory of all arguments and disagreements as he embraces those with whom he had fallings out. My symptoms as caregiver also showed up—greater impatience and loneliness balanced by a kind of desperate energy and new to me gregariousness as well as moments of patience I didn’t think I could manage.

For a while now, we have been on a PLATEAU. Ralph has been holding steady more or less. Some days he’s more with it than others. But I can’t really see much difference from week to week.

The big difference is in expectations. It’s not that I have bad ones. Or not exactly. I have none at all. The rule of thumb is that Alzheimer’s progresses, but the rate is so varied that I have no clue how it will progress in our case, what route it will take or how long. But I do know that when we move from this plateau, the next stage will not be good.

From Memoryland to Grandbabyland: Part One

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If I have been absent lately, I have a good excuse: My daughter gave birth to her first child, a baby boy she named after Ralph. BabyRalph is as adorable as every newborn—in other words his parents and grandparents find him an absolutely perfect specimen of infancy and expect everyone we send pictures to agree with us, whatever they really think.

The plan has always been that

1), Ralph and I would drive down to New Orleans once my daughter went into labor and stay for a few days after the birth before I drove Ralph home

2), I would then return to help out on and off as long as needed, having arranged plenty of back up help for him.

Needless to say I was nervous about both parts of the plan.

For one thing, Ralph was less than enthusiastic about going to New Orleans at all. He said babies scared him, and I believed him. He was always more a dog person that a small child person. While he was present as the births of our two kids, he is a proud member of the late sixties generation of macho activist guys that spouted feminism but didn’t actually live it. I’m sure he must have changed some diapers; I just don’t remember when.

As my daughter’s due date approached (and then passed), we all became more and more anxious. Ralph too. His concerns shifted from himself to the upcoming birth and all that could go wrong. He stopped worrying about his own travel. He started calling to check in on my daughter and son-in-law (Flyfisherman) nightly. When are we going down again? Do you know when she’s go into labor? became his new mantra, which he repeated throughout the day several times an hour. When the call finally came that labor had begun, he willingly got in the car, and he barely complained on the six-hour drive.

Once in New Orleans, things got a little trickier. Ralph does not like changing his routine and likes excitement even less. Fortunately the small AirBnB we rented had a little patio where he could smoke. Since labor was going slow and we were asked to stay away until BabyRalph’s actual arrival, Ralph stayed on that patio a lot while I picked up the other grandmother at the airport and BabyRalph’s twelve-year-old half-sister K from school. Fortunately Ralph also napped since we were not summoned to the hospital to meet BabyRalph until late that night.

On that first visit and again the next day, while Baby Ralph’s two grandmothers and an ecstatic K vied for turns to hold him in the little rocking chair the hospital provided, Ralph held back. He would not hold the baby and would only look at him from the small sofa across the room, not up close. The next day was the same until I sat on the sofa with the baby so someone could take a picture of the three of us together. Ralph looked at the baby. Ralph squinched closer. Ralph decided maybe, just maybe he’d try holding the baby.

Ralph took his namesake in his arms. Ralph began talking to BabyRalph. Ralph began singing Dylan songs to BabyRalph.  My daughter,  DaddysGirl, may have teared up a little. I might have too. We all snapped pictures of BabyRalph.Ralph held BabyRalph and held him some more, until it was time for a diaper change. It was a magical moment.

But it was only a moment. Ralph did not show interest in holding the baby again over the next two days before I drove him back to the farm where he greeted the dogs with great joy and relief.

Part One of the Plan was a success.

Part Two…. I’ll let you know soon enough.

MOWING A PATH INTO NEW TERRITORY

 

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Last week, at my request, my younger brother flew down from Pennsylvania and spent two full days on our John Deere tractor bush-hogging our fields.

That I had to ask my brother, or anyone, to come represents a turning point. Two years ago, already diagnosed, Ralph spent every day for months mowing the same fields to have them pristine for our daughter’s wedding. A year ago, he was still mowing regularly. But he has not driven the tractor since last spring. And over the summer the wheat/weed mixture grew higher than an elephant’s eye.

I asked during our last Emory Brain Center check up if Ralph should quit mowing, and was told mowing was fine. Although he has stopped driving most places out of fear of getting lost, his motor skills are fully operational.

Ralph’s problem was not ability, but motivation. About every two days we discussed the fields. I’d ask him if he was sure he was up to mowing. He’d say yes…yes but he was too tired or had a stomachache or it was too hot out or too chilly so he was planning on starting tomorrow. Then tomorrow would come and we’d have a similar discussion.

This is the pattern that the spouse part of me has had the most difficulty accepting. I was supposed to be the procrastinator in our relationship, at least in non-emotional areas. I was the one who put off unpleasant chores; Ralph was the one whose mantra was BE A CLOSER, who taught his kids by example to follow through and get the job done because he always did. Not anymore; each time a situation comes up, from helping to clear the dinner dishes to mowing the fields, I want to believe him when he agrees so pleasantly to do whatever I’ve asked. And then of course he never does and I become increasingly frustrated, mostly at myself for falling into the habit of depending on him.

As usual, over the last few weeks the reality slowly seeped into my brain that for whatever reason—because he simply forgets or lacks the energy or has unspoken anxiety about his ability to remember how—Ralph was never going to mow those fields.

And the only person I know with tractor skills is my youngest brother who has always shared with Ralph a love of machines—they spent a joyous summer over thirty years ago taking apart three elderly Triumphs to build two refurbished ones. But over the last thirty years the relationship between the two, once extremely close, became increasing problematic. In fact several years back tensions intensified to the point that the two of them got into a physical altercation during a family wedding.

Of course Ralph doesn’t remember the altercation and has only a vague recollection of there ever being any tension. And my brother has been more than happy to patch things up. He has visited several times recently while passing through. I called and asked if I could pay his way down to help. He agreed immediately.

I told Ralph my brother was stopping by on his way to a business meeting in Florida and suggested maybe we could Tom Sawyer him into helping out around the farm. Ralph thought that might be a good idea and was remarkably unsuspicious on the first morning when my brother voiced an interest in mowing. For the next day and a half my brother mowed and Ralph sat on the porch.

For the first few hours, my brother thought Ralph seemed pretty much as he remembered but that has time went on there were increasing signs of Ralph’s memory lapses and his less definable personality change from Get Things Done Man to Ho Hum Whatever Guy—when a tractor hose broke, Ralph’s response was ‘We’ll deal with it tomorrow’ until my brother reminded him that he was leaving tomorrow and needed to mow today. But the two of them hung out together and generally had a lovely time.

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Boy those fields look great. Maybe we could get him to come back and mow a couple of times a year.” That’s Ralph talking not me. Over the last couple of days, he has made this suggestion a lot.

 

Does Ralph realize the mowing visit was a set up? I don’t know and am not sure I want to ask. We may have found our way into new don’t-ask-don’t-tell territory where we don’t acknowledge but accommodate ourselves to Ralph’s limitations while maintaining his dignity. Or perhaps I am kidding myself about his awareness.