Tag Archives: Alzheimer’s and Mood Memory

Our OLD YELLER Moment

Caregiver/Spouse Issues, , , , , ,

 

old-yeller

Our dog Zeus had a bit of excitement last week. I was driving to the grocery store when Ralph called and announced that Zeus had been in combat with a wild boar, or at least a feral pig, or maybe a domestic hog that got loose. Whatever it was—Ralph said it had black hair and weighed a lot more than Zeus—must have drawn the dogs’ attention while they were in the yard outside Ralph’s workroom. Ralph said he heard a ruckus and found Ralph in a dried gulley with his teeth in the pig/boar’s neck and the pig/boar trying to get at Zeus. Somehow Ralph managed to separate them and the pig/boar ran off. (If you are thinking, ohmyGod, Ralph could have been badly hurt himself, I know I know but can’t dwell on it or I’ll go nuts.)

I could tell Ralph was upset and excited at the same time, basically on the adrenaline high anyone would experience under the circumstances, and he seemed surprisingly in control of the situation. He said he’d cleaned up Zeus who didn’t seem to have been hurt. By the time I got home with the groceries man and dog were already asleep and I assumed fine.

However the next morning, Zeus was definitely limping when I let him out for a pee. I had an appointment I couldn’t cancel and left soon after, having warned Ralph to check Zeus more thoroughly. Ralph called me half an hour later to say he’d found a gash near Zeus’s belly that he hadn’t noticed. By then I was driving through pouring rain, and my phone was barely working, so Ralph was pretty much on his own.

Although I directed him where to find the vet’s phone number on the fridge, Ralph called on his own, made an appointment and took the dog in by himself: In the poring rain. To the vet’s office that’s not on his usual driving radar.

When he called back to say that Zeus was scheduled for surgery and would be staying the night, he sounded definitely in control of the situation.

I was impressed. Guilty that I had not paid more attention to the situation. But mostly impressed, thinking that maybe I shouldn’t underestimate Ralph, that I need to recognize he is still up to handling a crisis.

Of course in the morning I did have to remind him where Zeus was and why. And luckily I was in the room when the vet called because afterwards Ralph wasn’t sure what the vet had just told him. I called back to give the vet office my number for future reference, they explained they wanted to keep Zeus an extra day. (Zeus is now something of a vet celebrity by the way, our own local Old Yeller, especially after they pulled coarse black hairs out of his mouth where Zeus lost a fang from biting down so hard.) Still, I was feeling really good about Ralph’s competence when we picked up Zeus and brought him home.

But here’s where things get sticky. The meds, morning and evening pills, I can deal with myself, but keeping Zeus inside, per the vet’s instructions, has depended on Ralph’s help. And this he seems incapable of remembering, any more than he can remember that the wound is on Ralph’s thigh not his stomach. Each time I catch Ralph and the dog outside, I go through the routine of reminding and explaining Zeus’s injury, his treatment and that he is supposed to be inside until the stitches heal. This recovery process is driving me crazy of course.

Gotta go make sure Zeus is in the house……

MOWING A PATH INTO NEW TERRITORY

Caregiver/Spouse Issues, , , , , , , , ,

 

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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.

field

 

 

“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.

The Larry David Cure for Dementia

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LARRY david

It was just turning 8:30 pm. As usual, Ralph was already in bed with the lights out. He goes to bed by eight most nights and will sleep past eight in the morning if I let him. He is genuinely tired, but I also suspect that he doesn’t know how else to fill the time. Neither books nor television hold his interest for very long. Neither does music or the kind lengthy conversation he used to be famous for.

I was in another room half reading the newspaper, flipping TV channels, thinking a little guiltily about a recent comment from Going Gently into That Good Night about the way those with dementia suffer.

Mostly, though. I was feeling sorry for myself over having another long night alone—no need to remember that in my thirties and forties, a night to myself without family would have seemed a gift; that’s another story. Suddenly I stopped clicking.

Because there on some random cable channel was The Larry David Show. Actually an hour and half of Larry David episodes was listed on the schedule. I rushed into the bedroom and turned on our set in front of our bed.

Ralph grumbled when I woke him, but he sat up. After all,

“I am nothing like Larry David,” Ralph said when I reminded him how the kids used to tease him that he was Larry’s spiritual twin,  (Of course they teased me that I was the spiritual twin of George’s mother on Seinfeld) but soon he was sucked in. Ralph began to chuckle. I began to chuckle. Sometimes I had to explain a character who had been introduced earlier, but Ralph had no trouble following the complexity of the wit. We laughed out loud at the same jokes.

The three episodes flew by. It was ten o’clock and Larry was over. Some lame movie started, but  I wasn’t  ready to go to sleep. Miraculously, neither was Ralph.

I switched channels. Another miracle: there was Seinfeld.

seinfeld

And one of the classic episodes. Jerry’s car is stolen by his mechanic; Newman and Kramer try to make their fortune with a mail truck full of recyclables; and George, after being sent briefly to a mental hospital, can’t get a tune from Les Miz out of his head.

“This was fun, wasn’t it,” I asked and Ralph agreed. As he rolled over to sleep, I turned off the television plotting what other comedies we might watch.

Then I tried to sleep, but George’s damn song was in my head.

“Master of the house,” I sang softly.

Ralph hooted. I repeated the line. Soon we were whooping it up like five-year-olds.

God it felt nice. I honestly cannot remember when we last shared such a genuinely good time. No soft-pedaling or covering for memory lapses, no manipulating behavior, no compromising my needs for his, no resenting the limitations of our life.

Just Ralph and me laughing away on the same joyful wavelength.

THE ELASTICITY OF TIME–DEMENTIA AND MY TRIP TO THE DENTIST

Caregiver/Spouse Issues, , , , ,

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I was waiting to get a tooth pulled the other day, breathing nitric oxide into my nose while my teeth were held in a kind of vise, when I had an epiphany of understanding…. I realized I was experiencing something akin to how Ralph lives everyday.

Sitting immobile in that over bright, antiseptic office I had nothing else to do but turn inward. And frankly ideas began to percolate. I became completely caught up in my flow of ideas—how to re-organize my novel-in-progress now that my first (Playing Botticelli) is getting re-formatted as an e-book and my second (Inheritance) is out being shopped; how to deal with the HVAC guy who put the wrong size AC unit into my house, causing unspeakable damage; how to organize a campaign against Donald Trump; how to improve this blog. I didn’t care that there was no way to articulate my thoughts or that they flew out of my brain and away like birds from an open cage.

Fifteen passed minutes , maybe five minutes, maybe half an hour while I floated in time. It occurred to me, not for the first time, how expansive time can be when untethered from routine. I was living totally inside my head, and time had temporarily had no weight. I knew the dentist would come in eventually, but I didn’t know when and I didn’t really care. My sense of living in the present, chemically created in the dental chair, may be as close as I can get to what I imagine Ralph and others living with his kind of memory loss dementia experience all the time.

Or I’d like to think so because I like to think that Ralph is experiencing a rich inner life of thoughts and feelings teven if he cannot hold on to them long enough to express them to me.

Last night, for instance, he talked on the phone to our daughter for what seemed to me a good half an hour. Sitting beside him, I watched his face full of animation as he listened to her sort through some issues she is having and offered his advice, as he laughed at things she said and made jokes of his own.

He was so fully involved in the conversation that I was frankly a little jealous, dying to talk to her myself. But I didn’t ask for the phone because it was better to let him be the parent she talked to for a change.I am sure my daughter hung up believing she and Ralph had completely connected.

As soon as he put the phone away, I immediately pounced, asking him the basic questions I knew she’d answered—like whether or not she was going to take the job she was telling him about, and when exactly was she arriving for her visit this week.

He shook his head. “I can’t remember if she said.”

Of course I can get the answers myself from a quick text back and forth. As for the gist of their conversation, and what I really wanted to know….

              “It sounded like a good conversation. Did she seem happy?” I asked.

               He shrugged. “I think so. It’s hard to tell. She didn’t have much to say. We only talked a minute.”

RALPH LOVES TO TALK BUT… PHONE COMMUNICATION WITH THE KIDS

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PHONE

The big issues connected to Alzheimer’s and dementia are almost too hard for me to grasp at this point despite the never-ending stream of factual information pouring off the internet and in the media. It is the small moments that capture what it means to live with memory loss.  For instance:

When I get home in a grumpy mood after driving my daughter through rush hour traffic to catch a plane, Ralph is in his usual spot, the front porch rocking chair, with cell phone to his ear. I head inside without stopping to ask whom he’s talking to.

After all, Ralph has his regulars: one loyal friend who checks in weekly, his sister, and the oldest of our three kids.

He talks to his sister almost every day. Both have a lot of time on their hands. Often they can talk for over an hour. Whenever I ask what they talk about, Ralph shrugs. “Small talk.”

He talks to our oldest son almost every day. If Ralph is laughing, but again, I assume it’s Josh, but again when I ask what they’ve been talking about, Ralph says “Small Talk.”

Our much younger two kids love their dad but they are of the text not talk generation. Their phone conversation with their dad are fewer and farther between.

So I was surprised when Ralph came inside and said he’d been talking to our younger son Jacob.

Surprised and pleased until Ralph added, “I called him but he didn’t seem to want to talk. It was a short conversation. I don’t think he likes me. Was I a bad father?”

This is no excuse, but I was hot and tired when I answered with the truth. “Not exactly but not always very nice. You weren’t very supportive.”

Ralph gave me a heartbreaking hangdog smile. “I wish you hadn’t told me.”

“But you asked.” (I know, I know, I could kick myself.)

“You should have lied.”

By then I was already desperately texting with Jacob: Dad said he called but you didn’t seem to want to talk. / Really??? It didn’t seem that way to me but ok / I made it worse because I said he was kind of mean / LOL

Jacob immediately texted Ralph saying he hoped he didn’t sound “out of it” but he’d just  come in after riding his new bike home from work. Evidently they had talked at length about the bike during their not hour-long but not short conversation.

Of course, then I had to figure out to get Ralph to find the text since he never checks for texts on his fliptop unsmart phone.

I waited about twenty minutes, said my phone was dead, asked him to check his because I was expecting a message from our daughter to let us know if she made her flight. He said he didn’t know how. We looked together.

“No message from her, but look there’s one from Jacob,” I said casually and read it to him out loud.

“Why would he send that?”

“I don’t know. Didn’t you talk today.”

“Maybe so. I don’t remember. But this was nice of him.”

Guilt, angst, manipulation, all for nothing maybe. Or maybe not. Ralph went to bed smiling.

Mood Lasts Beyond Memory for Alzheimer’s Patients

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“The fact that forgotten events can continue to exert a profound influence on a patient’s emotional life highlights the need for caregivers to avoid causing negative feelings and to try to induce positive feelings.”

This quote comes from a University of Iowa study on mood retention among Alzheimer’s patients, results I heard discussed a few days ago on NPR. The interviewer was thrilled with the information. And I know I should be too. After all, Ralph is still in a great mood ten days after we hosted the wedding because he knows he had a wonderful time even if  he can’t remember almost any of the details.

But what I actually thought as I listened to the earnestly enthusiastic young researcher was, “Oh great, now I have another reason to feel guilty.”

What I heard her telling me was that If feelings linger after the memory fades, I am “causing negative feelings” in Ralph more often than I want to admit. I see the way his face collapses when I am short with him after he asks me where I am going for the fifth time in half an hour. Or when I get annoyed that he has forgotten to take his pills or has not given me an important message from the electrician or has gone to bed before eight after spending the entire afternoon asleep on the couch. Less than a minute ago, he interrupted me as I was typing here at my desk with another question I had just answered, and I shouted down the stairs Not Now I’m Busy in a less than kind voice. Since Ralph’s diagnosis of MCI over a year ago, I have told myself not to feel bad about outbursts of impatience because he won’t remember. Evidently I was wrong: an essential non-cognitive part of him will remember.

Coincidentally, the blogger of “Not My Original Plan” –whom  I much admire for her realistic and committed optimism–writes in her most recent post about enjoying her mother’s lingering joy after the actual memory of an experience they have shared together fades.  I know I should follow her example and be glad that in some essential way his loss of memory has not robbed Ralph of his emotional life. And most of me is glad.

But to be honest, another considerable part of me liked thinking I had an escape hatch from responsibility:  I could let down my guard and be selfish or mean or emotionally lazy without it counting as long as Ralph wouldn’t remember.  That escape hatch is closed from now on, and I can’t help letting out a short sigh of “caregiver” fatigue.