Tag Archives: MCI changes a spouse’s life

NO MORE MOPING

 

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I woke up this morning saying those words to myself. Which is a good thing.

The truth is lately Ralph has been getting on my last nerve. When he starts on one of his loops—lately his favorite has been the history of our dogs and the order in which they died—I tense up and cut him off saying I don’t want to talk about it. When he gets confused following simples directions or an explanation, I am dismissive. When he lights yet another smelly cigarette, I want to pull my hair out.

I could go on with a litany of complaints about Ralph and admissions about my behavior/attitude. But there’s no need, is there? Probably, hopefully, I am making myself sound worse here on the page than Ralph would say I am in real life. And if I am in a state of constant annoyance toward Ralph, I am in an even greater state of annoyance toward myself.

The thing is that sometimes I forget that living with MCI is a slog not a sprint. What I unfortunately don’t forget is that there is no end in sight, at least no good end.

The other thing I forget is that while we are in this together, we are also each in this alone. While I can try harder to empathize, I cannot know what Ralph is going through, and I can’t expect him to know what I am handling. I have to take responsibility for managing my frustrations and creating my joys. When I don’t, when I slip into blaming everything on the MCI, life goes downhill.

I am sure I will slip again, but for now, the sun is rising above the trees, the dog is chewing her fake bone, the coffee is brewing and all’s right, or at least okay, in this corner of the world.

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Travel With Ralph (or Not)

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For the last two weeks, Ralph and I have been discussing a trip scheduled for this Labor Day weekend to New Orleans to babysit our twelve-year-old granddaughter while my daughter and son-in-law take their “babymoon”.

I brought up the possibility to Ralph a month ago when they first asked me to help out. Since I was driving down there–Ralph has made it clear he never plans to step onto a plane again in his life–I suggested he might come along.

I suggested but assumed he would say no. Since the family moved to Louisiana a year ago, I have visited probably six times. Ralph has been once, for a family Thanksgiving, and he didn’t exactly enjoy himself. Staying in a hotel discombobulated him, and he missed his dogs.

But he must have been in a good mood when I asked, for to my surprise, he said sure he’d come. I started fantasizing (and I use that word purposely) about a pleasant weekend of good meals and maybe a visit to the WWII museum, which I told him he would love.

A week later I mentioned the trip in relation to something else going on and he didn’t remember our first discussion.

“Why are we going?” he asked.

I explained. He looked perplexed. “And I said I’d come?”

I nodded. He said, “Ok,” then promptly forgot all about the trip until the next time I brought it up. We’ve had the same conversation daily for weeks.

Each time Ralph sounded a little less enthusiastic. Meanwhile I was growing a little less enthusiastic too as the reality of what it might take to keep both him and my granddaughter happily occupied began to sink in. I’d been sort of bragging to friends that Ralph was actually coming with me this time, but I started hedging, saying that if he resisted I wasn’t going to force him.

The truth is that traveling with Ralph is no more fun for me these days than it is for him. He was never the most adventurous companion, but he was generally game. Now his anxiety and low energy makes every trip a complicated obstacle course of arrangements: limited activities, limited walking, no wandering, no spontaneous choices, a lot of naps. I hear how trivial these complaints are. All that’s required is patience and a willingness to slow down, but that’s the rub. A husband in his sixties with cognitive impairment is in many ways equivalent to a typical eighties something husband; I know I’m not being fair, but while I hang on to late middle age by my fingernails, I resent him dragging me into older age.

Yesterday we looked at the weather report for the weekend: thunderstorms. Now my granddaughter and I are perfectly able to occupy ourselves playing cards, watching movies and eating junk food. Ralph does none of the above. What he does when faced with free time, of which he has much, is smoke cigarettes outside on the porch. But my daughter’s apartment has no porch. He’d be sitting outside in the rain.

“You’re off the hook,” I told Ralph and breathed a guilty sigh of relief, thinking how much more fun I would have.

This morning I was starting to pack my single bag when the phone rang. My granddaughter has been invited by a friend’s family to spend Labor Day weekend at a beach resort. Evidently I’m “off the hook” too.

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….

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.

Relieving Alzheimer’s Stress is Exhausting

IMG_0255Ralph knows how to relax; but do I?

I recently wrote about Ralph’s good mood and said that his level of relaxation versus anxiety was the key. I wasn’t lying. Because he’s been relaxed, he has been in a great mood during the visits of both our son and our grandson and despite all the entertaining and disruption to his normal life that occurred while they were here.

There was something I didn’t mention, however, because I wasn’t aware of it until now that everyone has gone:  Keeping Ralph’s anxiety at bay has been less than relaxing for me.

The good news—I somehow lost weight in the last two weeks although I stopped exercising and started eating everything I usually avoid. The bad news—I am exhausted.

Keeping Ralph on schedule and unstressed is one thing when just the two of us are going through our set daily routine. Throw in extra people, break the routine: suddenly life gets a lot more complicated.

Not that I didn’t enjoy myself. I did because having people around to talk to and laugh with and make election jokes (kind of like funeral or Alzheimer’s jokes) with was delightful.

And not that my son and 16-year-old grandson weren’t amazing…both of them perceptive, understanding and patient.

But I still found myself smoothing things over. Making sure they were not overwhelmed by Ralph, and Ralph was not overwhelmed by them.

When my grandson told me “Oppa” was in much better shape than he’d expected, I was glad and relieved. But also, secretly, a little tiny bit miffed that I was doing my job so well that no one even noticed. (And I am not fishing for compliments here, because most of you face a ton more than I do, but I’m guessing you caregivers know what I mean.)

Well, there will be another test this coming week. Ralph has been invited to go fishing with his “fishing club,” three guys from Nashville with whom he has fished in Florida for the last fifteen years. I was originally going to drive him down, drop him off  on Monday and  pick him up from the guys on their way home Friday.

But then I realized, who was I kidding. Ralph would be increasingly anxious without me for ballast and he would end up being more responsibility than any three late-middle-aged (to put it kindly) guys could handle. So I am going too. We’ll see how I like being one of the guys.

Ralph’s Good Memory Mood Lets the Good Times Roll

 

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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.

Mea Culpa–Sometimes This Caregiving Spouse Gets Angry (And That’s OK)

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Ok, so the truth is that I have been walking around all week furious at Ralph. Is that allowed, to be angry with someone with cognitive impairment? I have a voice in my head that I’ll call White Rabbit but that I also imagine (perhaps unfairly, but if I’m going for honesty here…) represents Alzheimer’s activists who would tell me, “No you don’t have that right. You can’t expect him to be a practical helpmate. You have to support him, not the other way around. You are a selfish bitch.” (I don’t really imagine the activist saying that last bit, but White Rabbit definitely.)

Well, my answer, this morning anyway, is so what? And I think it is important to accept my real feelings. As I try to define my role in Ralph’s life going forward, it doesn’t help to sweep the uncomfortable, unpretty emotional bits under the carpet. And the fact is that some of the ways he infuriates me now are no different from the ways he infuriated me before he was diagnosed.

So why am I angry this week? The details as I try to put them in typing sound almost silly: We have a rental townhouse in Florida that was recently flooded out after the neighboring townhouse’s pipes burst. I have had to take all the responsibility for dealing with insurance and repairs. I have been doing a lot of driving 5½ hours each way for 24 hour visits. This weekend is the final push—taking all the supplies and furnishing unavailable there and setting up the place. Usually I go alone but I need Ralph’s physical help this time. And he is driving me crazy.

I understand that when he repeats questions or statements, he really cannot help it. I may get impatient but I do understand. I understand why he keeps asking why we’re taking all these things to Florida, why he can’t remember to do the basic tasks he’s been assigned, why he keeps saying we can fit everything in the back seat when we obviously can’t since it’s already full. The annoyance of our repetitive dialogue gets on my nerves but is not why I am angry (well, a teensy bit).

I am angry because his obliviousness, which I usually convince myself to accept as a symptom of Alzheimer’s, is nothing new. During most of our marriage I could not depend on him when I was overwhelmed with responsibility.

And that’s what rankles.

Because I may be Ralph’s caretaker, but I’m also his wife. I imagine the wife role will recede more than it has already—and it keeps receding as our communication becomes more limited and we share less and less except the mildest chitchat—but for now the wife in me still has stored resentments that burble up when I’m triggered into remembering all the other times I couldn’t count on him, when he was self-important and impatient with my requests for help, when he was belittling, when he was generally a jerk—and all the times he was a delight too of course, but that’s another conversation.-