Tag Archives: marriage and memory loss

Taxes + Alzheimer’s =Anxiety x Ten

tax anxity

 

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.

“So, How Is Ralph Doing?”

question man2

 

An old friend called to catch up yesterday. We talked for maybe 40 minutes, were nearing the end of the conversation, when she asked, “How is Ralph doing.”

She’d clearly been both hesitant and dying to ask. I had been equally hesitant and dying to answer.

This scenario seems to be repeated in one form or another multiple times a week these days. Everyone who knows, however vaguely, about Ralph’s cognitive problems wants an update but everyone seems slightly uncomfortable asking.

For my part, I am both reticent and overeager to share.

I always find myself answering, “He’s holding steady,” and then launching into all the little negative changes I’ve noticed, interrupting myself to say, “I know this sounds trivial but…”

Because, really, I don’t know how he is.

Ralph is scheduled for his annual testing in two months. As the appointment nears, I find myself thinking about it more and more with both dread and anticipation. (Ralph doesn’t know it is coming up and there is no reason to mention it; either he would quickly forget or the fact of the looming appointment would lodge like a lost jigsaw puzzle piece in his memory, making him anxious on a constant basis.)

Whenever I think that Ralph’s cognitive abilities have slipped, I wonder if I am over-analyzing. This testing will tell me if we are maintaining the status quo. But a sliver of me also wants to hear that my perception of Ralph’s condition worsening is correct.

This is not comfortable to admit. I realize it sounds as if I want Ralph’s diagnosis to be worse than it has been. Maybe part of me does; the Purgatory of our current status quo is certainly preferable to the Hell that may well lie ahead, but the gray haze of impermanence is difficult to sustain emotionally. Sometimes I just want to know the worst and get on with it.

Also I can’t help hoping that once we have definitively crossed the River Styx from MCI to Alzheimer’s, Ralph will be more willing to discuss our situation and plan for the future (ie. leaving the farm) in ways he will not consider now—of course I realize that not only is this wishful thinking but dangerous wishing because what is more likely is that once is denial defense system stops working, a spiral of distress will set in.

So I mostly hope that I am wrong, and that he IS holding steady…that as imperfect as things are, we can continue to muddle along as long as we can. Like any couple in a marriage full of ups and downs.

Has Ralph’s Cognitive Impairment Turned Me Into A Butterfly, Or A Moth?

 

IMG_0250[Fittingly this moth (or faded butterfly) has fossilized onto our garage wall]

The fishing trip Ralph was scheduled to go on last week didn’t happen. His fishing buddy’s wife got sick and needed him at home. Ralph did not mind AT ALL…”I am dreading it”he kept saying as he usually does before going anywhere… and I was secretly relieved that the four days I had resigned myself to giving up were suddenly restored. I briefly considered not telling anyone, using the found time as a holiday from the world.

But I didn’t.

Instead, I called my vegetable garden partner to do some playing among the squash and corn on Monday.IMG_0298                                                                   I spent all Tuesday morning at a business meeting I’d forgotten to cancel, then called my Tuesday walking buddy. Wednesday I went to my Pilates class and then drove a visiting photographer, sponsored by the ArtRez committee I’m increasingly involved with, into Atlanta to spend the day at the Martin Luther King Center. I made a lunch date on Thursday with a friend I knew needed cheering up. And on Friday I headed back to Atlanta for a meeting of the patient and family advisory committee at Emory’s Brain Center.

Then I picked up my daughter at the airport. She and her husband came to stay at the farm for the weekend and we all attended a wedding together.

In the years before Ralph’s diagnosis, this week would have seemed a whirlwind of social activity.

But as Ralph’s social world contracts, mine seems to expand, as my recent posts attest. This is in many ways a good thing. I love having new friends, love being engaged with the world around me. But I also recognize a certain manic need that I need to face more squarely….

I was the kind of child whose grandmother caught me hiding in the coat closet at family gatherings. As I’ve written here before, I was the introvert, Ralph the extrovert. He loved to go to parties and stay late. I wanted to stay home or leave early.

So why have I turned into this gadabout who joins committees, seeks out new friendships at every turn, commits to projects without thinking?

FEAR is the word that pops into my head.

Our life together, Ralph’s and mine, could so easily become a constant retreat from the world. And to be honest, I feel drawn to drift along on Ralph’s rhythms. To rise late and go to bed early. To spend my day not doing much or talking much.

What I fear is the attraction I feel to downshifting with Ralph.

A lot of dealing with a spouse with cognitive impairment revolves how much to accept, how much to fight and push back. I cannot see into Ralph’s brain or read his thoughts. I understand he is viewing the world differently these days and that his needs have changed. But we don’t really talk about it. I sense he doesn’t want to, and I am not eager to press. All I can do is to [try to] accept who he is at the moment and not make unfair demands.

Because Ralph has a reason, an excuse, to withdraw from more active engagement with the world. (And dementia activists aside, he has made that choice.)

The problem is that sometimes that withdrawal is scarily appealing to me. Is that appeal innate within the mentally and physically lazy woman I’ve always been? Or is it a sign that I am becoming that dreaded condition called “old.” Neither option sounds too good.

I’m not about to cut back on my friends and commitments in order to burrow into a domestic burrow with Ralph. But I am going to work for a little more balance.

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

 

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.

Memory–Taking One Turn At A Time

 

directions.jpg

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.

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

ANGRY WOMAN.jpg

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.-

Alzheimer’s Self-Tests–Hmmm

 

IMG_0208.JPG

Scrolling on-line this morning, I was amazed at the number of do-it-yourself Alzheimer’s tests “available” and I use that word advisedly since it includes a positive implication that may not be true. I decided to try a couple of tests, in part to see how I’d do and in part to feel a tiny bit what Ralph must feel every time we visit the doctor’s office, not only facing his annual test to recalibrate his level of cognitive loss, but when he has to answer the short list of questions his doctor not so subtly slips in during our interim six month check up.

I took the SAGE (Self-Administered Gero-Cognitive Exam), developed by the Ohio State University Wexner Medical Center plus a test developed by the Department of Veterans affairs that Dr. Oz promotes .

A disclaimer–I am not a fan of Dr. Oz. Maybe that’s why I scored only 59% on the Dr. Oz test the first time I took it. Or maybe it’s because I kind of cheated: I didn’t have the stopwatch the test required so I had to guess how many animals I could name in a minute (full disclosure: while writing this, I had to go back to the site-twice- to see just how long I was supposed to have, thirty seconds? Ninety seconds?).

Of course Dr. Oz invited me to take the test again and also to buy some memory aid products. I nixed the products but I did take the test again, raising my score 71%. This time round, I also realized I had not properly memorized the five (or was it four, I can’t remember) items I was supposed to remember. Tie was an item after all. But I still couldn’t, and can’t, remember the last one.

Taking the Sage test was more interesting because I found myself uneasy and unsure how to answer some of the subjective, non-memory introductory questions. Do I have balance problems? Well, I don’t think so, but I am accident prone, having had two sidewalk mishaps in the last three years—once tripping on my shoelace and once slipping on ice—so maybe I’m kidding myself. Have I had changes in my personality? Yes, and yes, also to whether I have “more difficulties doing everyday activities due to thinking problems”. I like to blame those yeses on my anxiety regarding Ralph, but then again…. My palms were sweating before I even started.

As for the SAGE test itself, I got the first 10 out of 11 questions right effortlessly. But on number 11 I did the unthinkable—I didn’t follow the directions! My shape was right but I missed a step, and as I recall from ninth grade Algebra (or was it Geometry?), skipping the step is bad, bad, bad!

So the good news is that while I didn’t exactly ace my exams, I don’t have Alzheimer’s. The bad new is that if I got this tense taking these tests on a whim, what must it feel like for Ralph taking much more complicated, exhausting tests knowing how much is at stake. Sometimes I get so wrapped up in my own anxiety/resentment/struggles that I lose sight of the existential crisis he faces daily, hourly even, every time he grasps to remember and comes up empty handed.

Another Perspective: The Caregiv-ee

 

shutterstock_252703540-2

 

I am sharing this comment in response to my post about not being a particularly nurturing personality for a caregiver because it touched me deeply.

“Anonymous” bridges the divide between caregivers and caregiv-ees (a wonderful term that solves some of the linguistic difficulties presented by dementia, Alzheimer’s, patient, sufferer, etc.) because he articulates feelings we (at least Ralph and I) often have trouble expressing in daily life.

And he has a wonderful spirit that deserves to be heard…

 

“Hey Alice. It’s been some months since I’ve posted a comment, but I read all of your posts, all of the comments. I’m like Ralph – diagnosed with MCI about 7 months ago. I’m not the caregiver, I’m the care give-ee, which is why I don’t post very often. But to you and to all of you caregivers (including my wonderful wife, who may or may not know that I post here), I say – you are doing a difficult job very well! Don’t analyze too much, don’t beat yourself up. I’m still early in progressing into AD, if I am progressing at all. I’m still hoping that I’m one of the lucky ones with a MCI diagnosis who will be re-tested and found to return to “normal” cognitive performance for my age. I feel like I don’t have a problem (Ralph’s denial?) but my wife occasionally lets slip that she sees stuff suggesting that I am progressing. Anyway, my wife is very patient, either overlooking my MCI or just my “normal” age related memory issues. I am grateful for that. I’m sure your significant others, wherever they are on the spectrum (at least up until full-blown AD), are also grateful that you are hanging in there. I don’t expect my wife to be perfect in dealing with me. I don’t expect that she won’t be short with me when she tells me for the 3rd time that we’re going somewhere next weekend. Maybe it’s naive, but I bet most of the spouses you are caring for (at least until they progress to AD) feel the same. So you are the heroes. So just do the best that you can, which is good enough, and pat yourself on the back and feel good about yourselves.”

Scattered,Bothered and Bewildered Am I–But Not a Nurturer by Nature

tire change

So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).

I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.

Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.

The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.

But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.

I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.

Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.

And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.

The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.

I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.

And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.

And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.

And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…