Tag Archives: anxiety accompanies cognitive impairment

My Car Is My Caregiver

 

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Dear Red Prius,

My first car was a bright blue sedan that I drove to Atlanta when I was 22. I don’t remember the brand, only that I hated how visible it made me, especially since I was not the best driver.

I traded the blue bomber in for a used telephone “van” that had been refurbished by Ralph—his first entrepreneurial venture was buying and fixing  up used phone trucks, then selling them to counterculture types like me; the streets of Midtown Atlanta were full of Ralph’s trucks in the early 1970s.

The brakes went out on my van a week after I bought it. I was rounding a curve and ended up down an embankment. Fortunately I wasn’t hurt. Naturally Ralph felt terrible. He helped me fix the van and sell it.

(Actually, Ralph disputes my car history, says I got the blue bomber after the truck disaster, and he may be right. In any case I don’t remember what I drove next.)

We got married five years later, and for the next multiple decades I drove a series of practical, second-hand sedans (with baby seats), SUVs (for carpools and horse-trailering), and (once the kids were gone) compacts. They were all non-descript, aside from the dents I added, and I could care less.

A year and half ago, though, I got you,  Red Prius. I bought you for practical reasons like gas mileage and comfort, etc., and I admit that I chose your red color because you were cheaper than the silvery blue model.

The irony is that these days what I love most about you is your color. It makes you  So Visible, so easy to spot among the sea of tans, blacks, grays and whites on every road and in every parking lot.

I often find myself writing here about the difficulties, the frustrations, the borderline depression care-giving causes me. I think one of my secret worst fears is that my memory is going too. I said this to a friend recently and she laughed, “But Ralph isn’t contagious.”

Maybe not, yet I often feel as if my brain is clogged with the details of thinking for two. An adage of care-giving is that if we are tense or irritable, our cognitively impaired spouses (or parents) sense and react in kind. The flip side is that I am vulnerable to catching Ralph’s anxiety, and when I’m anxious my brain does not function at its best.

Lately I have an urge to simplify: the less I have to worry about the better. Less stuff means less stuff to keep organized and clean without Ralph’s help. Fewer commitments mean fewer complications to arrange for Ralph. But I also want to stay active and involved. Simplification can be a slippery slope that I don’t want to begin sliding down too fast.

Red Prius, you have been a godsend. It takes one item off my overloaded mental table—no more walking out of the supermarket or doctor’s office or bank or lawyer’s meeting or movie theater or restaurant or political meeting worried where I parked. One glance each way or a click of my key button and there you are, Red Prius, brightly reminding me that I am in control, at least to the best of my ability…A small comfort maybe, but it’s the small comforts that count.

So thanks for making my life better Red Prius. I promise to take care of you as well as I take care of Ralph.

Gratefully,

Alice

 

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.

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….

When Our Light Bulbs Dim–The Literal Ones, Not The Metaphoric

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.

PANIC ATTACK! (mine)

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

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

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

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

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

About an hour ago I sat up wide awake

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

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

Which brings me to now.

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

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

So it is my fault.

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

  This trip is going to be a disaster!

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Nine A.M. Sunday morning and guess what—

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

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

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

 

 

Taxes + Alzheimer’s =Anxiety x Ten

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

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

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

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

But of course I am a nervous wreck.

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

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

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

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

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

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

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

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

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.

Memory–Taking One Turn At A Time

 

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It’s a good thing I got my anger out in the last blog because the day after it posted Ralph and I spent an intensive 36 hours together on an all-work-no-play trip to Florida, and I needed all the patience I could find.

I had gone to Florida alone the week before, but Ralph came this weekend to help unload a truck’s worth of furnishings and supplies at the townhouse we’ve been renting out to vacationers since we bought it at an inflated price months before the 2008 Florida real estate crash.

Ralph wanted to do the driving initially, and I let him, although I “casually” reminded him repeatedly where to turn, where to exit, what speed to go. Of course, he doesn’t remember missing any turns on our previous car trip and I didn’t remind him. However, I did stupidly mention, as if in passing, that his sense of direction was not what it used to be. He took umbrage, declaring that he’d never been good with directions—a truth but one that doesn’t exactly address subtle but important shifts: his diminishment of confidence as a driver, his loss of what used to be ingrained routes and routines, like where the best gas station bathrooms and lunch-stops are, and more distressingly his inability to remember the basics. Why are we going there again? How long are we staying again? Isn’t there a town we usually go through?

I took over driving halfway down.Being behind the wheel was definitely more relaxing to me, and Ralph took a nap. We both arrived at the townhouse ready to work.

“This is a lot of schlepping,” he kept repeating with a certain delight—Christian Southerner with a Jewish wife, Ralph loves his Yiddish phrases—as we hauled boxes up and down three flights of stairs for hours at a time. “Why are we doing this again?”

Each time he asked, I explained that our neighbor’s pipes burst last November flooding our townhouse; that insurance covered some but not all the repairs; that we were putting our place on the market since it was newly renovated and looking its best.

Basically I kept repeating the same long dissertation about the decisions we, i.e. I, had already made. But the longer and more complete my explanation, the more anxious Ralph became and the more convoluted his questions. What again, how again, why again? That word again, so friendly and jocular on his lips, so painful in my ears.

It should have been obvious but not until we were driving away from the townhouse, did I have my embarrassingly belated epiphany: I was explaining way too much. Ralph, who used to go into the longest, most complex analysis of any plan he was making, whether to buy a new car or plant a garden or go out to dinner, cannot handle big picture plans any more.

I heard myself yammering on about where did he want to have dinner and whether he wanted it before or after we bought porch chairs, when I suddenly realized the obvious: Loss of the past is not the worst problem caused by cognitive impairment. Loss of contemplating the future is far more disruptive. Ralph becomes anxious because he cannot hang onto the amount of when-where-how-why information I keep throwing at him.

So I have stopped (well, until I backslide). Ralph doesn’t need to know all the details about what we are doing two hours from now, let alone next week. He only needs to know when I see a turn coming up so he can take it. Then, once we are around the bend, we can start looking for the next road side attraction.