Tag Archives: symptoms of mild cognitive impairment; symptoms of Early Alzheimer’s

Diaries and Dementia

diary

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.)

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.

The Thorn Among The Roses

camping

 

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.

IMG_0379

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….

Alzheimer’s Self-Tests–Hmmm

 

IMG_0208.JPG

Scrolling on-line this morning, I was amazed at the number of do-it-yourself Alzheimer’s tests “available” and I use that word advisedly since it includes a positive implication that may not be true. I decided to try a couple of tests, in part to see how I’d do and in part to feel a tiny bit what Ralph must feel every time we visit the doctor’s office, not only facing his annual test to recalibrate his level of cognitive loss, but when he has to answer the short list of questions his doctor not so subtly slips in during our interim six month check up.

I took the SAGE (Self-Administered Gero-Cognitive Exam), developed by the Ohio State University Wexner Medical Center plus a test developed by the Department of Veterans affairs that Dr. Oz promotes .

A disclaimer–I am not a fan of Dr. Oz. Maybe that’s why I scored only 59% on the Dr. Oz test the first time I took it. Or maybe it’s because I kind of cheated: I didn’t have the stopwatch the test required so I had to guess how many animals I could name in a minute (full disclosure: while writing this, I had to go back to the site-twice- to see just how long I was supposed to have, thirty seconds? Ninety seconds?).

Of course Dr. Oz invited me to take the test again and also to buy some memory aid products. I nixed the products but I did take the test again, raising my score 71%. This time round, I also realized I had not properly memorized the five (or was it four, I can’t remember) items I was supposed to remember. Tie was an item after all. But I still couldn’t, and can’t, remember the last one.

Taking the Sage test was more interesting because I found myself uneasy and unsure how to answer some of the subjective, non-memory introductory questions. Do I have balance problems? Well, I don’t think so, but I am accident prone, having had two sidewalk mishaps in the last three years—once tripping on my shoelace and once slipping on ice—so maybe I’m kidding myself. Have I had changes in my personality? Yes, and yes, also to whether I have “more difficulties doing everyday activities due to thinking problems”. I like to blame those yeses on my anxiety regarding Ralph, but then again…. My palms were sweating before I even started.

As for the SAGE test itself, I got the first 10 out of 11 questions right effortlessly. But on number 11 I did the unthinkable—I didn’t follow the directions! My shape was right but I missed a step, and as I recall from ninth grade Algebra (or was it Geometry?), skipping the step is bad, bad, bad!

So the good news is that while I didn’t exactly ace my exams, I don’t have Alzheimer’s. The bad new is that if I got this tense taking these tests on a whim, what must it feel like for Ralph taking much more complicated, exhausting tests knowing how much is at stake. Sometimes I get so wrapped up in my own anxiety/resentment/struggles that I lose sight of the existential crisis he faces daily, hourly even, every time he grasps to remember and comes up empty handed.

Another Perspective: The Caregiv-ee

 

shutterstock_252703540-2

 

I am sharing this comment in response to my post about not being a particularly nurturing personality for a caregiver because it touched me deeply.

“Anonymous” bridges the divide between caregivers and caregiv-ees (a wonderful term that solves some of the linguistic difficulties presented by dementia, Alzheimer’s, patient, sufferer, etc.) because he articulates feelings we (at least Ralph and I) often have trouble expressing in daily life.

And he has a wonderful spirit that deserves to be heard…

 

“Hey Alice. It’s been some months since I’ve posted a comment, but I read all of your posts, all of the comments. I’m like Ralph – diagnosed with MCI about 7 months ago. I’m not the caregiver, I’m the care give-ee, which is why I don’t post very often. But to you and to all of you caregivers (including my wonderful wife, who may or may not know that I post here), I say – you are doing a difficult job very well! Don’t analyze too much, don’t beat yourself up. I’m still early in progressing into AD, if I am progressing at all. I’m still hoping that I’m one of the lucky ones with a MCI diagnosis who will be re-tested and found to return to “normal” cognitive performance for my age. I feel like I don’t have a problem (Ralph’s denial?) but my wife occasionally lets slip that she sees stuff suggesting that I am progressing. Anyway, my wife is very patient, either overlooking my MCI or just my “normal” age related memory issues. I am grateful for that. I’m sure your significant others, wherever they are on the spectrum (at least up until full-blown AD), are also grateful that you are hanging in there. I don’t expect my wife to be perfect in dealing with me. I don’t expect that she won’t be short with me when she tells me for the 3rd time that we’re going somewhere next weekend. Maybe it’s naive, but I bet most of the spouses you are caring for (at least until they progress to AD) feel the same. So you are the heroes. So just do the best that you can, which is good enough, and pat yourself on the back and feel good about yourselves.”

Driving and Alzheimer’s

driving_268131086

 

Memo to myself when I look back in years hence:

So six months ago our PA Stephanie asked Ralph how much driving he did alone. And he told her: the convenience store five minutes down the road; the Spanish grocery ten minutes away where our handyman likes Ralph to drive him to cash his checks; and Ralph’s therapist in Atlanta.

Since his diagnosis that weekly trip to the therapist has been Ralph’s big expression of independence and competence. He has his route down pat. He stops at the post office and checks to check our box; he takes a load of garbage to the dumpster at our old office; he picks up lunch at Burger King; he visits his therapist; he drives home.

Stephanie took notes, then warned us both to keep an eye on Ralph’s driving. Not so much his skill set but his sense of direction. She explained that a new detour can really be confusing for a driver with cognitive impairment and that the anxiety can made the driver too confused to find his way back on track.

When she suggested I start driving him to Atlanta, at least occasionally to make sure it was safe, Ralph and I immediately took umbrage…Ralph because driving is part of his sense of his identity as a competent man, me because I didn’t look forward to giving up a whole day every week to drive him back and forth. But the next week I made some excuse to ride with him into town—he was not about to accept that I needed to drive him—to make sure I was not just being selfish. As I reported to Stephanie on our next visit, Ralph seemed fine. In fact, he seemed to be a better driver, more cautious and careful.

Jump ahead to this past weekend. We drove together to the small Florida fishing town where Ralph was meeting his long-time fishing buddy.

Although I wasn’t comfortable enough with him driving five and half hours that I didn’t come along, I was pretty comfortable with him as driver since Ralph knows the way like the back of his hand. So on the way down I was happily drinking my coffee and relaxing beside him as passenger. Then I looked down to read a text, and when I looked up I realized Ralph had missed the turn. A major turn from one big highway to the next. A well marked turn that is hard to miss. We went an exit or two and turned around. I was a little tense and probably showed it more than I should have. Ralph was more than a little tense, but as I told him repeatedly in the next few hours, these things happen.

We got to Florida. Ralph calmed down and actually enjoyed himself more than either of us expected, thanks to a fishing buddy who is amazingly understanding about Ralph’s conversational loops.

Today we drove home. Ralph insisted that he wanted to drive. I was in the passenger but on alert when my phone rang. I looked down to find it, and when I looked up Ralph had missed the turn we needed to take. The turn he has taken hundreds of times. I stayed calmer this time, brushed the mistake off, said we didn’t need to turn back, that this way might actually be a short cut. But he was truly rattled. For the rest of the trip we had to discuss road numbers and I had to reassure him we were on the correct road.

Twice in four days may be a sign. Next week, I am driving with Ralph to Atlanta.