Category Archives: daily life with MCI/Alzheimer’s

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.

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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Ralph’s Good Memory Mood Lets the Good Times Roll

 

IMG_0154.JPG                                           (rainbow at our farm one recent evening)

Anger, resentment, frustration, impatience, worry, guilt—wow, I have really sounded like an unhappy person lately.

But spring has arrived, the sky is clear, and so far the mosquitoes are staying away.

Also, Ralph is in a good mood.

Which means that he is in a good memory mood. Which means he is relatively relaxed. And when he’s relaxed, his memory lapses don’t escalate. And I have more patience. So the cycle turns positive instead of negative.

It helps that our son is visiting for two weeks—an unheard of treat although since Ralph’s diagnosis he has really stepped up to the plate in terms of making time to spend with Ralph. Last weekend we threw a dinner party with my son’s friends and ours in attendance. Guess who was the life of the party? (“Ralph is so smart and funny,” one of our newer friends said to me the next day.) And I had a good time too.

In a couple of days our sixteen-year-old grandson is arriving for one of his understandably infrequent visits from his home with our former daughter-in-law in Namibia. S’s father, Ralph’s son from his first marriage who now lives in California but talks to Ralph on the phone at least four days a week now, wants S. to have some quality time with his grandfather while he still can.

Everybody will be here to attend the art show Ralph’s art class is having on Saturday. Ralph is the only male in the class. I suspect he’ll be feeling the love on Saturday.

Then on Sunday, we’re having a picnic for S’s extended family—Ralph’s first wife with her husband, kids and grandkids as well as S’s mother’s sister’s growing family. It sounds complicated, lots of blended families.

But the thing is, there will be lots of kids here. Kids love Ralph and he’s great with them. He’ll have a ball.

As for me, it is interesting, because my reactions have become oddly less complicated. If anything, I am surprised how little I mind doing all the organizing legwork.

In the early days of our relationship, I used to resent Ralph’s charisma, his skill and desire to socialize. I wanted him to pay me the attention he paid everyone else, and I often felt like an uncomfortable afterthought among his friends.

Now that our life together has reduced down to a narrow, often lonely routine,  I get more attention from Ralph than I need or want (although I do sometimes get jealous of the dogs I suppose). So it is a gift to see Ralph caught up in the whirl of social interaction with others for a change, to see him following and actively participating in conversations.

While the others laugh at his jokes, I can relax and enjoy Ralph himself in ways I forgot, if I ever recognized, were possible.

Let the good times roll.

Alzheimer’s and Politics: Ralph’s Non-Vote

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Well I just got back from voting. Super Tuesday. A big deal.

I live in a voting district so politically lopsided that only candidates from one party (and not mine) run for national and state office. Usually my vote is so irrelevant that I have been known to write in “Anyone But…” on more than one occasion. So, as depressing as this political season has been, I felt a little twinge of excitement knowing that for a change my vote will actually matter.

I asked Ralph if he’d like to vote. After all, he listens to Public Radio every morning and watches the news every night. At various times he has declared Candidate X is definitely his candidate, or sometimes Candidate Y until I remind him he is for Candidate X (whom I am backing). He has laughed at stupid campaign ads and made astute comments about various candidates’ stupid statements. He has always voted.

Ralph said no, he didn’t feel like voting today. Then he asked what the issue was. I said the presidential primary. He still wasn’t interested.

His answer depressed me incredibly. In so many ways politics has defined our relationship from the start and now it is defining us in a different way.

When we met in the early 1970s, as the Nixon presidency and the Vietnam War were both unraveling, our romance centered on our shared political values. Or rather me sharing Ralph’s. We worked in the alternative press, and Ralph was passionate about his views. I remember sitting beside him on a couch as he went on and on about some theory or other while all I wanted was for him to shut up and kiss me.

Cut to the 1980s. Married with kids, and arguing a lot—a lot!!—mostly about decision-making; I found him controlling and he found me unsupportive. What we did not argue about was politics. We were both part of the small minority that voted for John Anderson in 1980 (although I had to look on the Internet just now to remember his name) and we both thought Reagan was not all there (little did we know, ironically enough). Our political agreement was important; I told myself that I could never be married to someone if I didn’t share his political beliefs

In the 1990s came the big shift. We moved to the country (another big argument that lasted for years) and midway through Clinton’s second term Ralph began to call himself a libertarian. “I’m not a Republican. I am Libertarian,” became his mantra. He was as passionate as a Libertarian as he had been when he was a socialist. I did not become a Libertarian, however, and was no longer susceptible to being swayed by any man.

In the first year of the new century, politics turned out to be a wonderful vehicle for arguments. We couldn’t watch the news together without fireworks, and the family dinner table became the set for great shouting matches, as our kids will attest. We railed against each other about taxes and the Mideast (although we still agreed on most social issues). Of course, under the political veneer our arguments were often about unspoken personal grudges and resentments we each nursed.

And now here we are in the most heated political atmosphere imaginable, and Ralph has gone lukewarm. He wants to be interested I think because he asks me frequently, “Who’s running again?” He cannot keep any of the candidates straight, although that may have more to do their deficiencies than with any cognitive deficiency on Ralph’s part.

The thing is, he would have voted today for whomever I suggested. While he listens to the news nonstop, very little of it sticks with him. This is not only a matter of memory. In part, his attention is turned more inward, but also he has a certainly mental hesitancy as if he doesn’t trust his own instincts. As a result I can easily convince him to agree with me, not only about the candidates, but also about any analysis of world events.

He now listens to me rail the way I used to listen when he railed. I admit I don’t mind being having an enthralled audience of one. I like being agreed with. I like being the one spouting righteous certainties. But this strange reversal is more bitter than sweet.

Driving and Alzheimer’s

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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.

A Sunday Snapshot

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It is important to remember today. Not because anything particular happened, but because nothing particular happened.

We woke and drank coffee. Then while I worked in my office, Ralph read. For a while he had stopped reading, and I assumed books, like movies, had become too hard for him to follow. But I seem to have been wrong. Today he picked up Leonardo’s Brain, by Leonard Shlain, about Da Vinci’s genius–not exactly a light romp or what I would suggest to a reader who has trouble remembering a joke by the time he hears the punch line. Ralph is finding the book “fascinating”.

We had lunch and he read some more while I walked with a friend. Now he has gone for a “walk” with the dogs—they walk while he drives beside them in the truck. Soon we’ll have dinner and watch Sunday television.

So, a normal Sunday. Except Ralph’s conversation is sharper today, his attention more focused.

I know better than to believe that Ralph is suddenly “ getting better.” But it feels important to appreciate this moment of respite: A reason to rejoice that while the thread/threat of memory loss has woven itself into the fabric of our lives, it has not yet pulled the warp and woof askew.

Dementia in its Infinite Variety

 

variety of peopleI found myself in a fury the other day after reading a post about dementia terms to avoid by a well-respected blogger. How dare she tell me what I could say! I asked myself from my high horse. But then I took a breath and dismounted.

When I read about the experiences of others involved with dementia I often find myself reacting with a range of emotions I am not exactly proud to feel.

Sometimes I am jealous, reading about people who have been diagnosed with dementia yet seem able to articulate their situation in ways I cannot imagine Ralph doing.

Sometimes I am defensive, especially when I read about caregivers who seem a lot more selfless in their willingness to put dedicate themselves 24/7 to the care of their loved one.

Sometimes I am angry, when I feel harangued to behave only a certain way or use only certain terms as a caregiver. Along with that anger comes a large dose of intimidation, fear that I am not doing things the right way.

Even as I write that last paragraph, I want to backtrack, worried that I sound unsympathetic.

But the truth is that everyone’s situation is so different. Obviously being a person facing Alzheimer’s is different than facing Lewey Bodies is different than facing dementia caused by a stroke is different than…on and on

And being the person facing dementia in any form is different from being that person’s caregiver.

And caring for a parent is not the same as caring for a spouse. Caring for a husband is not the same as caring for a wife. Caring for someone in your home is not the same as caring for someone in a facility.

And even narrowing it down to wives of husbands with Early Onset Alzheimer’s, every marriage (every individual in that marriage) has a history before the onset that affects how we behave afterwards. I cannot speak for anyone else, not caregivers, whether children or spouses, and certainly not anyone on the Alzheimer’s spectrum.

This is all very obvious, but it seems important to remember every so often (for me at least).

We are all seeking a sense of commonality, the Aha! moment of recognizing our situation in the situation of others. And there is real sustenance to be gained in our connections. Yet sometimes I need to step back and acknowledge the differences as well. Doing so allows me to respect other caregivers and care receivers within the context of their specific lives but also frees me to accept my own strengths and limitations on my own terms.