Tag Archives: MCI spouse

LARYNGITIS– VERBAL AND MENTAL

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

CAN'T TALK

I have not written for several weeks. I have thought about posting of course. There have been plenty of incidents with Ralph to describe, trips to doctors, visits from friends, tractor crises*, funny conversations (i.e.: me: ”Sitting on the porch to smoke in the morning in your boxer shorts might not be a great idea.” Ralph: “If a car turns up the driveway I’ll see it and go in the house.” “But they’ll see you too.” “So what?” Indeed, so what?). . I would lie in bed in the morning thinking about a situation that I wanted to share, but when I sat down to write I would get distracted. Or with increasing frequency, I wouldn’t make it to my computer I wouldn’t make it to my computer at all.

Then I got a bad cold/flu complete with laryngitis. Of course that didn’t affect words (not) coming from my typing fingers only from my mouth, but it feels pretty apropos. Both a symptom and a metaphor for my condition and Ralph’s.

In Ralph’s case he has a version of mental laryngitis. There is no way he can get beyond the blockage. He cannot get from here to there mentally. So although I have told him 15 or 20 times in the space of a morning that x=x, he keeps repeating that x=y. Each time he says x=y, I correct him. Each time he says, Right, I forgot. And each time I become a little bit more impatient.

(Needless to say, this morning we have been having a x=x/x=y issue concerning our lack of heat in the house. Ralph keeps asking what made our heater go out and I keep reminding him that I actually turned it off on purpose. In fact, he is not wrong—the system is broken—but the complexity of the situation, that the system has sent our electric usage meter soaring and I turned it off until a technician can find the problem, overloads his memory systems. As I was writing this tech guy came and Ralph started to tell him that the heat was broken; I re-explained and have sent him to his office.)

But my impatience dissipates when I visualize Ralph with laryngitis, especially if I do so while I have it myself. I can feel what it is like to have something caught in whatever the passage leads from memory to thought, not unlike the words caught in the passage between my brain and my mouth (or my typing finger, let’s be honest) Laryngitis is isolating, but in an oddly dreamy way also escapist because it is so straightforward; you cannot make yourself speak without having a voice. So I watch Ralph sitting beside me yet slightly removed with new understanding. He has realized that certain passages are blocked and he can’t unblock them.

As for me and my laryngitis, I am hoarse but talking again. But I have also realized that I have some blockage too. I have found some memories of my life with Ralph now and in the past so difficult that I have silenced them and in doing so have silenced myself. The difference between Ralph and me is that I can, I hope and with some effort, chip away at my blockages, while Ralph may not have that option.

BRAGGING, NOT RAGGING, ON RALPH

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

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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.

NO MORE MOPING

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

 

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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)

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

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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.

“I LOVE YOU”–Easier Said Than Done For Caregivers of the Cognitively Impaired

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

I happened to read a post at the Alzheimer’s Reading Room call Three Little Words. I am sure the article’s author Bob DeMarco is right. I realize that saying “I love you” is a wonderful thing to say. I am sure DeMarco is also right that changing patterns of behavior as a caregiver is a good idea.

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But frankly I am not feeling it at the moment. I can hear you responding, that’s the point. If you say it, you will change how you are feeling and behaving. I get it intellectually and I don’t not love Ralph. But saying those words, and I do, sounds hollow. The truth, which is not always pretty, is that being together with him day in and day out is an emotional drain. Solitary even when we are in the same room and de-energizing because I tend to let myself drift into a slough of inaction with Ralph that I find both debilitating and anxiety-producing. (And yes, I know I should do things to make him more active, and I try, I really do.)

So, politically incorrect as this may be, I admit that I often put my own needs before Ralph’s these days. As I have said here before, we never had exactly an easy, or even happy marriage. I blame myself as much as him because I passively allowed him to be what he called “the captain” of the family, what the rest of us sometimes called the bully. My reasons were the usual complex mix of love, laziness, fear, and indecision.

Now, of course, Ralph is someone else altogether. As am I.

He has become the passive, gentle man who sat in the car today without complaining while I did grocery shopping on our way home from his aborted shrink appointment—for which he blamed not his therapist or me but himself for screwing up the dates and which despite the two hours spent driving in the car was not a complete waste of time because it gave his day a focus. The new jovial Ralph didn’t care that my run into Publix for milk turned into a full-fledged six-bag expedition.

Ten years ago, even if all I needed was a quick pint of milk, I would have driven him home and then driven back to the store we were passing on the way rather than argue over the practicality of adding an extra hour of driving to my life. For better or worse that weak-kneed version of Alice has disappeared. I have become a woman who tries to be diligent in her care but is seldom anything approaching affectionate.

Which brings me to this further shocking-to-me admission: Lately I have found myself transferring my affections from Ralph to another love object.

lola                I snuggle with Lola. I baby-talk to her the way I always made fun of other dog owners for doing. I encourage her to lie on the bed with me while I drink my morning coffee (especially since Ralph prefers to sit outside with his first cigarette). For the last month we have been taking classes together to make her more obedient. She now comes as soon as I call and stays sitting in “place” until I tell her otherwise. Along with obedience, she has become much more attached to me. All I do is look her way and she is by my side licking my ankle.

Ralph’s attachment comes with complications. Lola’s is much simpler (except that she eats my shoes). For me having Lola to love on has been a real help. And Ralph is not the least bit jealous.

Cognitive Impairment and Contentment, An Odd Couple

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

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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

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

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

Between MCI and Alzheimer's, Uncategorized, , , , , , , , , , , , ,

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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.

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?

Ralph’s Fishing Trip–Not

marriage and Alzheimer's/Mild Cognitive Impairment, MCI/Early Alzheimer's Spouse, , , , , , , ,

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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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