Tag Archives: coping with a spouse’s cognitive impairment

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

Alzheimer's Family Issues, , , , , , , , ,

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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

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

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.)

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

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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

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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 CALENDAR GIRL

Alzheimer's Spouse Issue, , , , , , , , , ,

 

calendar girl

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?

PANIC ATTACK! (mine)

Alzheimer's Spouse Issue, Alzheimer's with a sense of humor, Uncategorized, , , , , , , , , ,

IMG_0342It is 3:57 and I am wide awake thinking I may have screwed up royally this time.

We are at our vacation cottage in North Florida (actually a garage apartment with no house attached but that’s another story for a another time). We got here around seven this evening after a rough day. I had risen early to bake brownies for a baby shower I was co-hosting at a friend’s house . While I was at the shower, Ralph and my 12 year-old granddaughter loaded our truck according to my checklist. When I got home at noon, I quickly cleaned the brownie pans, went over the checklist, packed the coolers, and into the truck we all jumped.

It was a long drive of especially after we received a couple of texts from our daughter and son-in-law who arrived in Florida the night before.      1. They texted that the garage was infested with fleas and they had set off a flea bomb.          2. They  mentioned that Ralph’s boat motor seemed to be missing a part.

So Ralph divided his fixated attention between the fleas and the motor, asking me questions I couldn’t answer on one issue, then the other for five hours. Thank God for the car games my granddaughter insisted we play. I have never enjoyed Ghost and Twenty Questions so much.

By the time we reached the cottage I was exhausted. We had a quick, late dinner before I unpacked and went to bed at around 11:30.

About an hour ago I sat up wide awake

—Ralph’s doc kit? The kit where Ralph keeps his toothbrush, his razor, his e-cig charger and his Alzheimer’s meds. The thought of it had pulled me out of my deep sleep.

Or rather the thought that the kit wasn’t in the black footlocker when I unpacked it. So I tiptoed barefoot down the narrow stairs and outside to the truck. One carton of diet soda left under the back seat, but no doc kit.

Which brings me to now.

My mind is racing: Ralph and my granddaughter said they had packed it when I went over the check list but why did I take them at their word. Ralph can’t miss his meds for five days, that’s the bottom line. It’s the wee hours of Sunday morning. Can he miss a day until I can get his doctor to call in a prescription Monday?

Up pops the angry question, “Why can’t Ralph remember one thing!” followed by the obvious answer, “Because he literally can’t remember.”

So it is my fault.

Why didn’t I check the truck before we left? When am I going to learn not to take Ralph’s assurance he has remembered as actual assurance? When am I going to accept that I have to check and double check behind him? When am I going to realize that I need to pay attention to Ralph’s needs with more undivided focus?

  This trip is going to be a disaster!

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Nine A.M. Sunday morning and guess what—

Disaster Averted. My wonderful, adorable granddaughter did follow the check list to the letter. She did put the doc kit is in the truck after all. It was lying on the floor by the front passenger seat where I guess I didn’t look carefully enough last night.

I am the one who forgot. I am the one repeating myself this morning. “I am so relieved!” “I am so relieved!” I am giddy with relief. (But really, I should have double-checked the truck before we left, and will not make that mistake again, for my own peace of mind as well as his well being.)

Now, if it ever stops raining, we might just have a good time…

 

 

Taxes + Alzheimer’s =Anxiety x Ten

Alzheimer's Spouse Issue, Money and Alzheimer's, , , , , , , , ,

tax anxity

 

We were due a nice refund on our tax bill this year, but a few days ago a letter came from the IRS saying they would be “reviewing” our return before any payment would be sent or further action was taken.

I emailed my accountant, “Assume this is routine but thought you should know.” Less than a minute later she emailed me back, “This is not routine, but I’m not saying you have anything to worry about.”

Yikes. I have been through an audit and it was not fun.

The next day I received another letter, with a form to prove Ralph and I are really the ones who filed the return. So now I am trying to convince myself this review is part of the government’s crackdown on fraud returns and that the IRS doesn’t want to send our check to the wrong person.

But of course I am a nervous wreck.

I share this TMI (I know I know; talking about money is a turn off) because I cannot share it with Ralph.

And as I type the words “talking about money” I realize such talk is in fact one of the more intimate aspect of a marriage and that Ralph and I did a lot of such talk, weirdly enough, with gusto. Weirdly because money should have been a sticking point; he came from a working class family always on the brink of financial disaster while I was a pampered daughter of the bourgeoisie. He was a self-proclaimed capitalist, I was a righteous democratic socialist. But although as I’ve written here before, we argued about most things—childrearing, politics, how to spend our free time, where to live, what to eat, making friends, you name it and we argued—we seldom if ever argued over money. Money we discussed rationally.

We were in agreement that Ralph was the one with a talent for earning money, I was the one with patience for nuts and bolts bookkeeping. He went with his gut instinct. I played devil’s advocate. We could while away hours, days, TV seasons, analyzing a financial decision together. Even than nightmare audit was not a cause of tension; we were in it together, like partners in a school science project we discussed endlessly.

But I can’t talk about money issues with Ralph anymore. It’s not that he drives me crazy asking the same questions repeatedly (although he does) or that he might bring up a financial question at an inappropriate time (although the other night our dinner guest blanched when Ralph asked how much we had in the bank in front of her).

It’s that the anxiety of financial decision-making is more than Ralph can or wants to handle. He’s made it clear he doesn’t want to know too much but wants to feel secure. So I give him the basics and repeat them as often as necessary.

But knowing there is a difficult decision to make or a real problem (because I’ve foolishly spilled the beans) spikes his anxiety and the issue gets lodged like a loose widget in his cognitive gears. He can neither grasp it nor let it go.

There’s been no value in putting him through that pain. And selfishly, re-explaining a problem every time he returns to it has usually raised my own anxiety even higher than it is already. So I am keeping this new financial glitch to myself.

If this all sounds dark and self-pitying, there is an UPSIDE of sorts. As I teach myself how to think about money and compartmentalize that thinking, I see more clearly than ever that money, while necessary, is never the end in itself. As Ralph now jokes, as long as he has five bucks in his pocket and me on his arm, he’s happy.