Tag Archives: tracking memory loss

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 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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ALZHEIMER’S CALENDAR GIRL

 

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For everyone who has MCI or Early Alzheimer’s or who lives with someone with these forms of loss THE CALENDAR IS KING (QUEEN).

You don’t have to have memory loss to have trouble keeping up with scheduling complications of course. Dental appointments, meetings, pick up times, they all swirl through our lives and seem to swirl faster now with the advent of electronic calendar keeping. In fact my highly intelligent, mentally acute son texted me two weeks ago to arrange when he would pick me up from the airport that day, only to have me tell him I wasn’t arriving for my visit until a week later. LOL. Haha.

Still, driving Ralph home from his dental appointment yesterday morning, clutching the little card that noted the dates for his next two appointments, repeating to him the dates fifteen minutes later as I wrote them down on our big kitchen calendar, then again last night when he asked, and again this morning when he asked as soon as he woke up, it struck me how much of our daily life now revolves on what used to be a taken for granted detail.

In my first support group for dealing with newly diagnosed Mild Cognitive Impairment at the Emory Memory Clinic, there was discussion of calendar keeping—one man explained that he printed up a schedule daily for his; others had taken classes in calendar keeping—but I didn’t pay much attention. At the time, Ralph, who in his business life was always a stickler for keeping precise calendar records, still carried around his mini-notebook calendar. And frankly his life was not so busy that I thought it would be hard to keep up.

Well, his life is less busy now, so keeping up is not exactly a problem. He gets everywhere he needs to. But keeping track has become an obsession, really for both of us. As soon as there is something coming up, whether a dental appointment or a dinner date, or any other minor routine change of plans, the discussion of WHEN becomes endless. As usual the underlying issue is anxiety. But I think the matter of keeping up with days and calendar dates dominates over every other issue in our lives right now.

I gather many caregivers of those on the Alzheimer’s spectrum, especially spouses and children, deal with this WHEN problem. I am never sure I am dealing with it as well as I should but we muddle along. We have an erasable board that tracks the weekly schedule. And we have a large book calendar that I found at Office Depot; I looked at every one in the store and the best one for our needs includes a monthly at a glance as well as the weekly at a glance. And frankly his week-long pillbox is the best reminder of all what day it is.

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Ralph will take his pills and then, sometimes go read the weekly calendar. He rarely looks at the big calendar, but once in a while it comes in handy for him to get a time line straight. He does not have a calendar on his phone and has never learned to use a computer.

The fact is that Ralph doesn’t need to know what day it is most of the time. And he doesn’t need to know when his next eye doctor appointment is ahead of time. But he often wants to know. And then wants to know again and again.

As for me, I am having a little trouble letting go of my need to have him know things ahead. The marital habit of talking about the details of an upcoming birthday party, a worrisome doctor’s appointment, a visit from or to our kids, is hard to break. And I have not solved the basic conundrum:

Does bringing up what is coming up days or weeks ahead creates unnecessary tension for Ralph and is it a waste of time anyway since he won’t remember? Or does carrying on a conversation about future events, even if it means carrying on slight variations of the same conversation many times, have value in maintaining Ralph’s involvement in his own life whether he remembers or not?

Ralph’s Fishing Trip–Not

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You know how holidays and vacations that go wrong—when the hurricane knocks out the electricity, when the turkey falls on the floor and the dog eats it, when the fist fight breaks out during the wedding toasts—are the ones you remember. Well I won’t be forgetting last week’s vacation in Florida any time soon.

It turns out my panic attack the first night, the one about forgetting Ralph’s meds, was actually my intuition warning that the next five days were going to be rough-going.

The trip was not terrible in any dramatic way. (Well, except for being scammed over the phone by someone claiming to be a sheriff’s deputy who said I was going to be arrested for failure to appear for jury duty and contempt of court. This was the morning after the panic attack so I was exhausted and not thinking clearly. I was also alone with Ralph and without a car. I quizzed the supposed deputy and his sergeant who sounded scarily authentic, then used Ralph’s cell to call the number they were calling from. Of course it came up Sheriff’s office. I missed all the now obvious cues of scam—FYI, missing jury duty is not a felony and neither is contempt of court, the Sheriff’s office doesn’t call to say it is about to issue a warrant and doesn’t take a Paypal cash card payment over the phone. As soon as I gave the Paypal number to the “deputy” I realized I’d been scammed. By then my neighbor saw me walking in the 90 degree heat and picked me up. I was mortified.)

And not really “terrible” at all, because “terrible” implies extreme. More like aggravating: There were the fleas that lingered after repeated bombings. There was the rain, which kept five of us trapped and bickering in a small garage apartment for two days.

And definitely intense: There was the family health report my daughter was writing up for a course she is taking. As she asked question after question, with her 12-year-old step-daughter sitting beside us in fascinated attention much of the time, a clearer picture than either of us expected began to emerge of Ralph and my life as it was and as it is becoming. Some questions prodded me to re-examine old issues, some gave a fresh perspective. I didn’t know whether to smile or cry when she jotted down, Alice and Ralph are coping well with their changed circumstances.

It was an exhausting experience over hours of conversation, but it also created a new intimacy and honesty in my relationship with my daughter that is a gift beyond value.

 

Above all, there was the Fishing. Or rather the Not Fishing.

Fishing has been Ralph’s passion for years. And before fishing, he was passionate about sailing. He likes to quote an old Pogo cartoon. “It’s all about the boating.” Ralph likes to catch fish but what he has always really loved is being on the water, sitting in a boat up some creek joshing with his fishing pals waiting for fish to bite or not bite. He loves the soggy lunches they eat, the teasing back and forth, the crises with motors that won’t start, and of course he loves the excitement when they land the occasional big one they land, or almost land. Since the boat in Florida belongs to him, he is officially Captain while his best fishing buddy over the last fifteen years, also named Ralph, has always been first mate.

In February, less than six months ago, Ralph and I met Ralph#2 and his wife C. for a wonderful fishing weekend. C. and I hung out in funky-artsy Apalachicola with its good restaurants and shops (shout out to DowntownBooks ) while the guys fished.

Last month Ralph and Ralph#2 planned another fishing trip that Ralph#2 had to cancel at the last minute.

So this trip, combining family and fishing has been much anticipated. Ralph #2 rented a house nearby with his extended family including several fishing sons and grandsons for a week. And we were staying in our place with my daughter and son-in-law BoyScout, who is even more passionate about fishing than the two Ralphs.

By the time we arrived, not only had BoyScout taken care of the flea problem but had the boat ready when we arrived. The next morning was gray and rainy so Ralph bowed out on the fishing. Boy Scout went out with Ralph#2 and his son and grandson instead. The next morning, it poured so nobody fished. Day four was gorgeous, but Ralph (my Ralph) said it was too hot and stayed home. Ditto the next day.

Even when BoyScout suggested a short sunset boat ride for the family Ralph declined.

Ralph’s non-fishing was the shocking undercurrent that noone said aloud but everyone was noticing and that made this five day “vacation” a watershed moment of realization:

The man who never saw a boat he didn’t want to sail or fish from or tinker with, the man who has dragged me out on the water in all kinds of miserable weather, did not go near his boat the whole time we were there. And not for lack of all of us trying to drum up his enthusiasm.

“I’ve done it before,”he shrugged every time.

The question is, will he ever do it again?

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“So, How Is Ralph Doing?”

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An old friend called to catch up yesterday. We talked for maybe 40 minutes, were nearing the end of the conversation, when she asked, “How is Ralph doing.”

She’d clearly been both hesitant and dying to ask. I had been equally hesitant and dying to answer.

This scenario seems to be repeated in one form or another multiple times a week these days. Everyone who knows, however vaguely, about Ralph’s cognitive problems wants an update but everyone seems slightly uncomfortable asking.

For my part, I am both reticent and overeager to share.

I always find myself answering, “He’s holding steady,” and then launching into all the little negative changes I’ve noticed, interrupting myself to say, “I know this sounds trivial but…”

Because, really, I don’t know how he is.

Ralph is scheduled for his annual testing in two months. As the appointment nears, I find myself thinking about it more and more with both dread and anticipation. (Ralph doesn’t know it is coming up and there is no reason to mention it; either he would quickly forget or the fact of the looming appointment would lodge like a lost jigsaw puzzle piece in his memory, making him anxious on a constant basis.)

Whenever I think that Ralph’s cognitive abilities have slipped, I wonder if I am over-analyzing. This testing will tell me if we are maintaining the status quo. But a sliver of me also wants to hear that my perception of Ralph’s condition worsening is correct.

This is not comfortable to admit. I realize it sounds as if I want Ralph’s diagnosis to be worse than it has been. Maybe part of me does; the Purgatory of our current status quo is certainly preferable to the Hell that may well lie ahead, but the gray haze of impermanence is difficult to sustain emotionally. Sometimes I just want to know the worst and get on with it.

Also I can’t help hoping that once we have definitively crossed the River Styx from MCI to Alzheimer’s, Ralph will be more willing to discuss our situation and plan for the future (ie. leaving the farm) in ways he will not consider now—of course I realize that not only is this wishful thinking but dangerous wishing because what is more likely is that once is denial defense system stops working, a spiral of distress will set in.

So I mostly hope that I am wrong, and that he IS holding steady…that as imperfect as things are, we can continue to muddle along as long as we can. Like any couple in a marriage full of ups and downs.