Tag Archives: Personality changes MCI/Alzheimer’s

Celebration Amid Stress

flowers                                              my bouquet from Ralph (with help from our daughter)

 

For most of this autumn all I could think about/write about was the tractor (back in the shop for yet more repairs due to user-error I suspect), which became the symbol of the stresses of life with a spouse on the Alzheimer’s spectrum. Now I find myself writing yet a happy description of our life for the second time in a row! Perhaps we have reached another plateau or perhaps I have adjusted to whatever plateau we have been on for a while…

The dangerous temptation to think Ralph is somehow getting “better” also pops into my mind, especially because as always happens, visitors over Thanksgiving commented that Ralph seemed better than they expected. He was better that usual because as also often happens, he is more alert and less passive around others—if he’s comfortable with them–than when alone with me. Since he was also the more genial, gentler post-diagnosis Ralph, he was a generally entertaining presence.

Not that rough patches didn’t abound in an eight-day week with a houseful of guests on the farm. But the stress caused by the tensions and physical ailments of other family members and friends had nothing to do with Ralph. If anything, he helped smooth some of the week’s rougher patches.

He also began to enjoy his grandfather role more, both with his older grandkids and with his namesake grandbaby whom he began to hold and cuddle even without being asked. In fact this morning, in our suddenly quiet house, he said he missed BabyRalph—who though exhausting was certainly not a cause of stress.

And Ralph really got into the small-scale festivities surrounding our 40th wedding anniversary. Actually so did our kids, who did a kind of countdown to midnight (and made us stay up way past our bedtimes) on anniversary eve, then opened a bottle of bubbly that we all shared while listening to the John Prine/ Iris Dement duet of “In Spite of Ourselves” that is considered by some to be “our song.” As we all shared that moment of silliness and laughing, a moment of euphoria, part of me couldn’t help observing in a kind of awe that I was having an experience with Ralph that I haven’t for a long, long time—the sense of being on equal footing, of standing together on the same ground, of being a wife more than a caregiver, of being loved not simply needed.

 

 

 

 

 

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BRAGGING, NOT RAGGING, ON RALPH

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Lately, I’ve been complaining a lot here about the difficulties of living with Ralph as his cognitive skills wobble and wane. While I hope that my honesty in voicing frustrations as I explore ways to manage as caregiver-spouse has been useful to others, I know I sometimes lose perspective (thank you to friends here you rein me in).

So it’s good to be reminded that life is not a straight line, especially when Ralph is doing the reminding:

1.The day after the contractor incident earlier this week (see ), Ralph asked me whether he’d had an argument with a contractor and what was it about. I told him, trying to soft peddle as best I could.

“Oh well, we can replace the system if he thinks it’s necessary,” he shrugged.

Despite my expectations, he hasn’t brought the subject up again, except to        acknowledge that he is embarrassed by his own behavior. Pre-diagnosis Ralph was almost Trump-like in his inability to apologize for mistakes so I consider his contrition a sign of emotional growth.

2.Then yesterday, while listening to the news, he made a comment so astute I must share it with you all. Someone on the radio complained about political correctness and Ralph stopped sipping his coffee to say, “Why would anyone want to be incorrect about politics or anything else?”

Why indeed? I borrowed his observation and posted it on my facebook pages where “likes” flowed in. Although he may not remember the details, Ralph can still cut through to the chase.

3.The kicker is a conversation we had an hour ago. Periodically I must drive to St. Petersburg, Florida, to manage the affairs of a disabled cousin. Since it’s a seven-hour drive each way, I have to spend the night. I long ago gave up on getting Ralph to come with me. Last year I drove down with a friend who also has (difficult) family to visit in the area. Another friend may drive down with me next week; she needs a break and I’ve bribed her with the promise of a gourmet meal, a nice hotel and the Dali Museum. But she has warned me she might have to cancel at the last minute.

Ralph must have heard me talking on the phone about the trip as he was napping on the couch because out of nowhere, he sat up and OFFERED TO COME WITH ME. Note the capital letters in red ink. I was/am flummoxed.

Whether he comes or not is not the point—and frankly, I’d hate to have him miss his art class, which is so important in his mental life (one week wouldn’t matter but he has to miss class the next week too, ah the complexities of Ralph’s usually empty schedule!).

The point is that he is still capable of breaking through the Alzheimer’s shell of inward-gazing to think about someone else’s well being, and that someone else is me, not as his caregiver but as his wife whom he wants to take care of.

So at the moment I am feeling an emotion that our relationship doesn’t often raise in me  lately—I ‘m not talking about affection, although I am feeling that too, but gratitude that this particular man is in my life.

RALPH RUNS OFF THE CONTRACTOR

 

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Ralph ran off a contractor I was in the process of hiring this afternoon. It was almost funny, or will seem so in a week or two once I calm down.

Picture the scene: The sun beating down in 90 degree heat outside the house; my pen poised to sign the paperwork for repairs, Ralph appearing, fresh from his nap and barefoot; the contractor clutching his clipboard. Ralph asks Why can we just clean the system? The contractor explains. Ralph asks the same question again. And again. Why can’t we just clean the system? Each time a bit more belligerently.

The contractor tries to explain what he has already explained—that the system is past cleaning—and then tries again. He draws Ralph a diagram to show what he means. I can tell that the contractor doesn’t understand why Ralph is sticking so doggedly to an idea he has just explained won’t work and I can see and hear Ralph’s growing frustration. Both men become increasingly defensive. Meanwhile I stand there feeling helpless to diffuse the situation.

The irony is that the contractor was recommending exactly what Ralph had told me he thought needed to be done just yesterday.

Ultimately the contractor said he didn’t think he could do the job and Ralph said something less than gracious back (I have blocked what). As Ralph headed back into the house, I apologized under my breath to the contractor, explaining briefly that Ralph has Early Alzheimer’s.

Was that a betrayal to ease my embarrassment or an explanation that needed to be given? Should I even use the A word since Ralph actually officially still as MCI but no one knows what that is? I’m not sure.

The thing is that in his glory days, Ralph was not an easy man to work for—a demanding perfectionist who was also careful about every penny—and I sometimes had to run interference, a role I hated then. Evidently I still do, but Ralph was coming from a different place this afternoon. Locked into a narrow loop of one question he wanted answered over and over, Ralph was not processing the information he was receiving.

Although he is rarely aggressive in dealing with me or anyone else now, different versions of this problem have come up several times recently, usually related to business matters. I generally try to avoid involving him, but sometimes that isn’t possible. Sometimes the people Ralph is dealing with know he has a cognitive problem and give him leeway; sometimes they don’t and become puzzled if not belligerent.

A few minutes ago I received a call from the contractor’s wife apologizing profusely, saying that the contractor had no idea and would be glad to help us in any way. Meanwhile, I have already called someone else to by tomorrow. My guess is that a lot of conversation with Ralph for the next week or so will focus on this afternoon. What did the guy say? What did you say to him? Have you found someone to fix the filter? Who was the guy who came to fix the filter? Is the filter fixed? I will listen and nod, straining to be patient and silently kicking myself for not handling things better in the first place.

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?

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….

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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