Tag Archives: coping with a spouse’s cognitive impairment

How Politics Is Hitting Home, Or In Ralph’s Case How It Isn’t

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Living through this political season has been a more emotional experience than in past election years for three reasons.

 

One

Obviously the candidates have raised strong reactions. Like so many others, I have VERY STRONG opinion. I don’t want to be coy here—I dislike Trump to put it mildly while my enthusiasm for Hilary has been growing as the campaign evolves. But living where I do, in a smallish, very conservative southern town, voicing opinions can be risky. I have plenty of friends who I am sure have different political opinions. Usually our differences have been the basis for lively discussions. But this year we are all careful around each other, too careful. Friendships may be at risk in this climate.

 

 

Two

Hearing the rhetoric from all sides has set me thinking about my experience of family as a microcosm of the larger community experience, and specifically about how my family represents of today’s America.

My grandchildren through Ralph’s son by his first marriage visited this summer. It was a big deal because they live with their mother in Namibia (in southwestern Africa) so don’t get here often. And when they come they split their time among a lot of people—us, Ralph’s first wife and family, plus relatives of our ex-daughter-in-law. There are grandparents, aunts, uncles, cousins in a never-ending stream. Often the question of who gets to visit for how long causes tensions. But this year we worked the schedule out, and our extended families came together for various cookouts and bbqs.

Today I glanced at the photograph from one of those gatherings—I have blacked out the faces to protect the innocent and guilty—and saw a world: Caucasian, African-American, American Indian, Goan Indian, Protestant, Catholic, Jewish, Atheist, Straight, Gay, Old, Young, Middle Aged, Careers in Business, Education, the Arts and Health Care, Long Married, Single, and formerly married (Ralph and his first wife). My proud, rather self-righteous thought was what a poster family we are for the United States but then I realized we are probably a fairly run-of-the-mill mash up in today’s America.

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Three

For the first time since he was a fourteen year old and his best friend’s mother involved him in her political activism, Ralph is watching the election from the sidelines. Even as recently as four years ago, when he’d already started to show symptoms of cognitive impairment, he actively and somewhat vociferously followed politics. I have previously written that Ralph’s political views have softened—from a hard-line socialist to a hard-line libertarian back to somewhere in the moderate middle—but this election has thrown his changing concern for the world at large into stark relief.

As he says with a chuckle whenever politics comes up, “I’m not really following.” And he’s not. He has decided he likes Hillary and doesn’t like Donald, but also has trouble remembering they are running against each other. As for the issues, he nods when I pontificate or voice outrage but then, like a kid caught stealing a cookie, he admits he’s not really been paying attention. The problem is that there are too many details to hold on to. Analysis requires remembering layers of thought. So does nuance. Ralph is great at remembering certain stories of his own and even lots of facts, but when he listens to sentences that should add up to someone else’s story, or argument, he gets lost. Therefore he steers away from stories and arguments.

But this may be my limited explanation of his disinterest. He would disagree. “Been there, done that,” he’d laugh before explaining that he’s simply over politics, the same way he’s over fishing and boating and business, because he’s been deeply involved in each and now he’s moved on. I am careful not to ask moved on to what?

Diaries and Dementia

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I want to pass on a link sent to me by my friend Caregivee, who has become my friend and conscience:

Caregivee sent me information about a new British study, “Carers’ diaries in dementia: Is there a role in clinical practice?”

I cannot verify the validity of this scientific study, which compared information recorded by 78 caregivers in daily diaries to what information caregivers gave in retrospect, but I was particularly struck by one conclusion:

“Our findings suggest that there may be a potential use of carers’ diaries in the assessment of dementia, in that they may identify more problems compared to relying solely on the retrospective account of patients and carers in clinic. More research using carers’ diaries in dementia covering longer period than a week may be required to ascertain other benefits.”

This study seems to suggest that by assembling the details from the diaries of many caregivers’ daily experiences–those small problems and/or solutions  that we forget about once they’ve passed, those fleeting reactions, those moments of clarity–health professionals may find ways to help caregivers improve caregiving and make the experience better for caregivees. We can use all the help we can get.

Although I may write here about my anecdotal experiences with some regularity, I have never been good about keep an actual diary. Perhaps I should start.

(But no promises that I can keep it up.)

Cognitive Impairment and Contentment, An Odd Couple

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Ralph and I have our best conversation while driving, the same way my kids and I did, and for the same reasons: we have each other’s undivided attention and we can’t escape.

So of course I was maneuvering my way through rush hour traffic the other day when he brought up his concern that his IQ has dropped seven points since what it was when he was a boy—this statistical tidbit from his first diagnostic testing lodged in his brain three years ago; he’s brought it up occasionally ever since but rarely so bluntly.

I responded that most people’s IQs probably drop as they get older, then added as an afterthought (how I tend to break bad news) that his memory loss has probably made his drop worse. He nodded. When I used the term Mild Cognitive Impairment, he flinched, but only slightly. (We don’t use the word Alzheimer’s aloud in our house.)

He brought up how well his medications Namenda and Donepezil have worked. He also said he was wasn’t worried that eventually they might stop working as well because his doctor had assured him that there will be new drugs in the process being discovered and he can take them when these stopped being effective—I don’t recall the doctor saying that exactly but I didn’t contradict him because, after all, who knows?

Then he took a puff of his e-cigarette and said, “Anyway, I’m content.”

“Did you say content?” I asked.

“Yes, I am very content these days.”

I could tell he meant what he was saying, not “fluffing the goods” as he likes to describe people whose stories he doesn’t believe. I felt glad for him, and definitely relieved.

But also, I have to admit, I was a bit jealous. Ok, a little resentful too.

Because I am not content with my life these days. It’s fine to be told what a good, caring wife I’ve become, but it’s kind of a backhanded compliment coming from friends with exciting careers going full steam ahead. Not that my career was ever that full of steam, but my ambitions have flagged. I find myself drifting along, adjusting my rhythm to Ralph’s, wondering if my own days of productivity are over along with his.

I’d rather blame the heat. Maybe once the temperature drops below ninety I’ll be full of focus and energy again, ready to care for Ralph and myself with equal vigor. I’m going to borrow from Ralph’s new playbook and assume the best….

When Our Light Bulbs Dim–The Literal Ones, Not The Metaphoric

This was our big accomplishment of the last few days: changing ten light bulbs (embarrassing to admit how many and never mind for how long).

I realize how trivial changing light bulbs sounds, but that’s the thing. What used to be one trivial, mindless activity handled along with hundreds of other trivial activities in the course of a day has taken on a new distinct weight given Ralph’s memory loss.

Obviously I could have handled this chore mostly by myself but decided I’ve been letting Ralph slide. Knowing how much to ask of him is a delicate balance, but I haven’t been pushing him enough to participate in our daily life, too often accepting his plea that he’s tired, in part because not pushing is frankly easier for me too. So if he’s been sliding, I have too.

It took me five days to corral Ralph’s attention, but the other morning I got him to walk with me from room to room upstairs and down, noting which bulbs were out and what kind of bulbs were required while I took notes. He unscrewed a fluorescent rod in the kitchen and a decorative bulb from the bathroom vanity to make sure we got the correct replacement sizes. Over the weekend  we drove to the store–I let him drive while I rode shotgun.

In the parking lot he agreed to bring in the fluorescent but became adamant that he didn’t need to take the decorative bulb because he’d remember it. I acquiesced, but once we were on the bulb aisle, the bulb choices overwhelmed us both (evidently, according to a friend I was telling about our excursion, bulb buying has become more complicated  for everyone these days) . Ralph had no idea which decorative bulb matched what we had. Not 100% sure myself and sensing his rising anxiety, I ran back to the car for the example from home. When I got back, Ralph was still in the row where I’d left him and had found a matching fluorescent rod but misplaced the bulbs we’d already picked out (something I might have done myself if if truth be told).

By the time we got home, Ralph was exhausted. I changed the bulbs I could reach. He took a nap. The next morning when I mentioned changing the rest of the bulbs, he gave me a blank look. But once I reminded him that we’d been to the store and here were the bulbs, he happily changed the fluorescent bulb. Then he took a rest. In the afternoon I reminded him again and he willingly changed three bulbs n the kitchen. This morning, I reminded him again and he changed the last ones, including a light on the stairs that was admittedly difficult–especially since one of the new bulbs was a dud–and required a ladder as well as much turning on and off of the switch.

We are now a house of working lights. What a sense of accomplishment!lights kitch15

I’m giving Ralph the rest of the day off, but tomorrow I’m plan on reminding him to change the oil in the lawn mower. It’s been a year.

Cognitive Testing-No News IS Good News

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Annual Cognitive Testing Update—No News Is Good News

We went for what has been a semi-annual appointment at the Emory Brain Center yesterday and the news is a sigh of relief:

No change in Ralph’s memory from a year ago (ie still “awful” according to N.P. Stephanie, who was smiling because awful is much better than “getting more awful”)

Executive function holding steady

Problem solving holding steady

Mood, if anything, improved

Apathy and low energy, which N.P. Stephanie addressed by lowering the dose of Lexapro. If he doesn’t not appear more anxious, we may cut it out all together (although I suggested that I might require his portion)

Ralph allowed to drive his tractor but not drive his car alone except to the convenience store three miles down our own road

Alice allowed to leave Ralph home alone for several nights at a time as long as there are friends and Alice phone calls to check on his meds and meals

 

Actually the big change was that N.P. Stephanie suggested that, barring a problem arising, we skip our usual six-month visit and wait to return next July.

The Thorn Among The Roses

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Our fourth annual “Camp Mountain Creek” gathering of the cousins ended this morning. For the last eight days Ralph put up with three female adults (me, our niece and her friend) and four teen and preteen girls (our niece’s daughters and our granddaughter). Enough to wear out any man.

I have watched with fascination the evolution of the relationships among the girls as they mature. There used to be spats and hurt feelings that had to be soothed. This year they simply enjoyed one another. While there were shifting match ups there was no ganging up. The kids have created traditions they cling to (killer charades, skinny dipping, endless junk food) and have amassed stories they can tell and retell (scary moments, funny moments, angry moments, and serious moments like discussing racism and violence in America in light of the recent shootings). There were lots of tears when the cousins said goodbye.

I have also watched how their interactions with Ralph have changed. Four years ago he was at the center of things: taking them fishing, scaring them with ghost stories, driving them to Dairy Queen, and disciplining them on occasion.

Three years ago, they thought it was hilarious when he got a little lost on the way to McDonalds. Two years ago, they begged him to play Scattergories but he wouldn’t. Last year they couldn’t get him to tell his ghost stories.

This year we managed to get him to come with us for one meal out. He didn’t swim, despite temperatures in the nineties. He didn’t play games. He didn’t tell stories.

Mostly he enjoyed the girls’ presence at a remove. While he was not disturbed by the altered routine, the messy house, the noise, he did not go out of his way to be part of the activities. He kept up his daily routine—sleeping late, sitting on the porch, disappearing for an hour or two into his “office”, taking his afternoon nap followed by more time on the porch, dinner, and bed.

Sometimes he rallied. After enough teasing, he changed from jeans into shorts and sat with everyone by the pool one afternoon. Last night eating pizza at our last dinner together, he was as funny and engaged as ever.

The girls still adore him but they are old enough now to understand and want to discuss. I had to explain his diagnosis and what Alzheimer’s entails. The younger ones asked the older ones what he used to be like. The older ones talked about being “sad” over the changes they have noticed. They are all incredibly patient with him.

At first I was upset that they were so aware of Ralph’s diminishing self. But a friend pointed out that they were experiencing the life cycle first hand. She’s right. These girls will never forget their carefree weeks together on the farm, and sharing not only the joyful but also the bittersweet will make those memories all the more powerful. I wish I could be around to hear them reminisce about their “Uncle Ralph” and “Oppa” when they get together thirty years from now, as I have no doubt they will.

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RALPH MY HERO– THANKS TO ALZHEIMER’S

HERO

 

I have been carping a bit lately about the tensions, anxiety and frustrations of being an Alzheimer’s spouse/caregiver.

But today I want to crow about the upside.

Today Ralph is my HERO.

A specific moment of heroism: At the crack of dawn this morning, my walking buddy and her husband came by to go blackberry picking out at our big stand of blackberries in a field that’s a good long walk from the house. Ralph was still asleep. Although he had reluctantly come out to pick a few days earlier, I let him sleep in this time. My friends and I picked a couple of baskets worth of berries before the prickles got to us, not to mention the heat (85 degrees by 8:30).

As we were about to head in, I realized I didn’t have my new prescription sunglasses and couldn’t remember if I had worn them out to the field. We looked around the bush but didn’t find them. I prayed they were at home.

They weren’t. I looked all over the house, in my car, all the usual places. No glasses. By now Ralph was up and dressed. He willingly drove me to the field. And then he actually got out of the car and looked with me.

We walked carefully around the bush, but I saw nothing and was about to give up when Ralph asked, “Are these your glasses?”

YES.

I hugged him. And then I hugged him again when we got home. I cannot tell you how elated I was that he found them. Elated out of all proportion (although new glasses would have been expensive). And of course he basked in my elation and appreciation.

The reasons Ralph’s finding my glasses was so pleasing:

  1. He actually offered to drive me and he willingly got into the heat and looked with me. And he was so good-natured about it.
  2. This is the pattern of his behavior now:  If I ask him to bring me a cup of coffee or clear the dishes or bring in the groceries, he does it with a smile.          If I ask him to wait, he is patient in a way he never used to be…sit in the car while I run an errand, no problem; wait for a late dinner while I finish up in my office, no problem.    If I want to watch a TV program he let me turn the station; if I turn on the radio before he’s ready to wake up, he doesn’t mind; if I watch TV after he’s gone to sleep he doesn’t mind.
  3. He never loses his temper. Our grandkids/nieces tell me he is the nicest grandfather/uncle they have: affectionate and funny.
  4. In other words, he is kind of a sweetheart.

Note to myself: Remember this moment and these feelings later….