Tag Archives: Alzheimer’s caregiver anxiety

Physical Illness in Memoryland Part 2 Or How Sick Is Ralph Anyway?

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I’ve lost track how many days have passed since I had to stop writing a post because Ralph was heading off in his truck. I didn’t catch him but he was back in fifteen minutes. He had headed to his office for a pack of cigarettes. He smoked one, had a beer and went back to bed.

He  followed the same routine for the next six days: in bed most of the day until shortly before supper. Each afternoon he smoked one cigarette and has one beer and then ate a hearty meal before a second cigarette and back to bed. During the day I brought him turkey soup, glasses of water, cups of tea, and cold medicine. He coughed occasionally but not that much. He blew his nose when I reminded him it might be a good idea. When I asked him if he felt better or if the cold seemed to be going away, he considered before answering yes, he did feel better. But every day when I suggested it might be nice to take a hot shower or sit up a bit he said, “In a bit. I’m resting now.”

On Friday, concerned that maybe I was missing something, I called his doctor to see if he should start an antibiotic since his smoking might make him more vulnerable. I was told that his symptoms as I described them didn’t warrant antibiotics. Yesterday was rainy so I didn’t even suggest getting out of bed, hoping a little extra babying would get him over the hump.

And sure enough he slept through the night without a cough or sniffle (irksome since I’m still coughing myself awake). This morning I told him I was meeting a friend for a quick breakfast and running a couple of errands I put off yesterday.

“Are you sure you’re up to it?”

“Up to what? I’m just having breakfast and going to the drugstore and ATM.”

“I thought you were sick.”

“No, you’re the one who has been sick with a cold this week.”

“Oh right, I forgot.”

“So you’re getting over your cold.”

“Yea, I think I am.” He nodded. “I feel better.”

When I got home two hours later, he was still in bed. I suggested a shower. He thought about it.

“In a bit. I’m resting now.”

After he ate lunch, I again suggested he take a shower. “It’s a sunny, warm day and a little fresh air wouldn’t hurt,” I cajoled.

“In a bit. I’m resting now.”

The thing is. I don’t think he’s down to the last remnants of his cold. I also think that the drastic cut in his intake of nicotine, caffeine and beer is affecting his energy level; he’s probably in a kind of withdrawal, which is obviously a good thing in that maybe he won’t go back to as many cigarettes or beers a day, but meanwhile my instinct tells me that if we’re not careful this total non-activity could become the newest normal.

But what if I am misreading the situation. What if I am being cold and heartless. Fortunately he’s got an Emory appointment which means 1., he has to get out of bed and 2., I’ll find out if I’m wrong and he’s actually sick.

Still, this is another glimpse of the future when determining what Ralph’s capability—how hard to push him and when to let him be—will be increasingly difficult.

RALPH’S TRACTOR: TRIALS AND TRIBULATIONS

 

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In the last few weeks, Ralph has been in rare good form around outsiders. At a Labor Day gathering, he bonded with one of my more difficult professional associates while they shared a secret smoke on the back porch. Then for a week he totally charmed three medical students who evacuated to us from Florida during Hurricane Irma. The kids, whom we’d not met before, could not hear enough of Ralph’s stories.

But during this same time Ralph’s complicated combination of memory loss and memory fixation has rotated in a whirlpool around one small—although physically not so small—issue: Ralph’s John Deere tractor.

He loves his tractor, the same way he loved his boat. When it became clear he could no longer manage the boat, our family came up with what turned out to be a perfect solution: Ralph gave the boat to our son-in-law but got to remain Captain Emeritus. Ralph loves the arrangement.

But the tractor, unlike the boat, is actually a necessity in our lives, not something we can give away; as long as we live on the farm, we need the tractor to mow our hayfields. I can drive the riding mower on the lawn near our house, but I am too mechanically challenged to drive the tractor. So is our handyman. As for Ralph, he says he is still capable, but he fortunately shows less and less interest in operating that big, potentially dangerous machine. The few other relatives Ralph trusts with the machine—my brother, my daughter, my son, my son-in-law—all live far away, but if fields are mowed three or four times a year that would be fine.

My brother mowed the fields last spring.

They were not mowed over the summer. My nephew who stayed with us for several months over the summer offered to help, but Ralph kept saying that he needed to do “a little work on the tractor” first. I frankly didn’t pay much attention, my own avoidance mechanism at play. My nephew went back to D.C. The “little work” never got done.

The grass in our fields has now grown at least as high as the proverbial elephant’s eye.

A few weeks ago, Ralph announced that the tractor’s problem was a leaking hose he couldn’t change himself. Without telling me, Ralph evidently called the number he had for Mr. B. who always did our tractor repair. Ralph announced that Mr. B. has retired but someone was coming out to fix the tractor.

I know, I know, I should have stepped in right then and called the number myself to get the details. Haven’t I learned by now that Ralph and service people don’t mix? And so began the following saga.

The next day I noticed that the tractor had been moved back into the barn. Ralph couldn’t remember moving it. I called and talked to Mr. B’s grandson C.B. He said he’d been out to our farm, had talked to Ralph, had ordered the hose replacement and would be back to put the hose on once it arrived. Ralph had no memory of this visit. For the next few days Ralph continually asked me about the tractor because he couldn’t hold onto the fact that the hose had been ordered. He didn’t remember talking to C.B. and didn’t know why the tractor was back in the barn. But he kept repeating that he didn’t trust C.B.’s competence since C.B. hadn’t accompanied his grandfather on previous repair visits. “He’s no Mr. B.” There was no way to convince Ralph otherwise.

A week went by. I called C.B. to ask how much longer before the hose would be in. C.B. said he’d already been out and changed the hose. I told Ralph who looked at the tractor and remained adamant that the hose had not been changed. He was more convinced than ever that C.B. ”Was no Mr. B.” I frankly had no clue. I called C.B. who promised he had changed the leaking hose. Ralph swore he hadn’t. I called C.B. yet again, apologetically explaining Ralph’s memory problem and asking that C.B. please call me from now on. C.B. said the green hose Ralph kept bringing up was not the one that was leaking. I told Ralph that C.B. had changed the small black hose, not the long green one Ralph thought was leaking. Ralph swore C.B. had changed the wrong hose. After all, “He’s no Mr. B.”

Nevertheless I got Ralph to turn on the tractor. The leak was gone. I stood beside Ralph and dialed C.B.’s number. While C.B. directed Ralph around the tractor so he could check the hoses, I stood by taking notes. After many, many repeated questions and answers, Ralph finally seemed to accept that the correct hose had been changed. I breathed a sigh of relief.

Too soon. The leak was gone but the tractor’s back end that connects to the bush hog would not go up and down. Ralph was sure C.B. “who is no Mr. B.” had broken the tractor.

I called C.B. He promised to come check the tractor again. A few days passed. Ralph became increasingly fixated into his loop of questions and refrains: Had the leak had been fixed? Which hose had been changed? C.B. was no Mr. B. (who had been reduced to being C.B.’s uncle. Was there some problem with the tractor?

C.B. arrived driving a large truck to haul the tractor back to his shop if necessary. Ralph climbed into the tractor and started it up. C.B. pushed a lever by Ralph’s seat. The back end rose and fell perfectly. Ralph and he tried it again. It worked again. And Again. And Again. Ralph agreed the tractor was fixed. C.B. left. (I am waiting for the bill.)

A happy if mysterious ending. C.B. said it was possibly air in the fuel line that needed to work its way out. But I can’t help wondering if Ralph was pushing the wrong lever? Or was it something else? There is no way for me to know.

But when Ralph announced he planned to mow the field yesterday morning, I quickly pointed out that he needed to rest up for his art class that afternoon. He agreed and hasn’t shown interest in mowing although he continues to ask, “What’s the status of the tractor?” multiple times a day.

I know I’ve been describing a relatively minor series of snafus. I can’t quite capture how and why the situation exhausted and depressed me so deeply. Except that it encapsulated the grinding frustration and irritation that so much of our life as become.

And yes, I am about to invite my brother down for a mowing trip asap.

FINDING MYSELF IN RALPH’S TESTING CHAIR

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I am participating in Emory University’s Healthy Brain Study, part of the university’s Healthy Aging Study. While the Aging Study, the largest of its kind, uses on-line feedback to research multiple health issues related to aging, the Brain Study takes a more involved approach to researching the predictors of Alzheimer’s.

In other words, I can expect to be tested and prodded for about six hours ever two years. I like the idea that I have found a way to participate actively, not simply as Ralph’s caregiver. However, my first visit was frankly disconcerting: I HAD TO TAKE THE SAME COGNITIVE TEST RALPH HAS BEEN TAKING.

I remember Ralph’s first test experience. Or I remember my experience: sitting in a waiting room for two hours reading gossip magazines until he emerged slightly gray around the gills. On the drive home he complained about how much he hated the process while I put on a cheery, encouraging face aware he’d probably not done well. (He had not.)

Since then, every time we head to the Emory Brain Health Center, Ralph asks worriedly if he’s going to be tested. I have learned to say, ‘I don’t know,’ to avoid making him more anxious than he already is. I am told that he is always quite cheerful and communicative in the actual testing, but he leaves each visit saying he feels “disoriented,” and “more foggy than usual.”

I am always sympathetic. Or I try to be. I admit that I have grown just a teensy bit callous after hearing the same phrases over and over; a small, not nice part of me shrugs off his complaints, secretly thinking, It’s a test, get over it.

So there I was, only a few weeks after Ralph’s most recent test, sitting at a desk about to embark on my own mental examination. It didn’t help that the test giver and I actually knew each other slightly, having worked together on a hospital improvement project. Once the test began she was a neutral blank.

I started sweating at the first easy question. It didn’t help that I recognized I was facing the same slate of mental exercises that Ralph has faced, that I knew how many words he remembered in one exercise and how many mistakes he made in another and how much time he took to complete a third task.

I started strong but could feel myself tiring mentally as the tests wore on. My concentration wandered when it shouldn’t. I missed some obvious answers. I began to struggle. And in the follow-the-dots a-1-b-2, a test in which Ralph made two mistakes this year but none last year, I somehow skipped my last letter; not a good feeling even if I was at least twice as fast.

The Bottom Line: I WAS TAKING THE SAME COGNITIVE TEST RALPH HAS BEEN TAKING AND I DIDN’T LIKE IT ONE BIT.

I knew rationally that everyone who takes the test feels that she screwed up, and I knew I basically did okay. No matter. By the time I stumbled out into the daylight I felt, you guessed it, “disoriented” and “more foggy than usual.”

Not great feelings but an excellent wake up call. I felt  a new infusion of empathy for Ralph (and others in his situation). Most of us can laugh off our mental lapses—misplaced keys, names on the tips of our tongues—but Ralph goes into each test, lives each day, each minute, struggling against dark impenetrable holes that he feels deepening. Having had my little taste of fear, I admire his bravery (and the bravery of his fellow travelers in Alzheimer’s) all the more.

Another’s Sorrow

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The other day a friend with whom I’d fallen out of touch let me know that her husband had died suddenly and unexpectedly in the last year. Although I’d met him only a few times, and his was certainly not the first death I’ve heard about lately,  the news struck an unexpectedly sharp chord.

The thought of one’s one mortality is inevitable when someone else dies. Death has becomes a tickle at the back of my thoughts over the last few years , and although I have more or less adjusted to the fact that Ralph has cognitive impairment, I don’t like to be reminded that I am aging too, that my capacities are altering. But I also found myself disturbed for reasons less socially acceptable, less acceptable in every way.

Even as I mourned his death and felt deep sympathy for my friend’s sorrow, I found myself comparing marriages. My friend and her husband had shared a long marriage, one of those rare solid marriages that withstand challenges, obstacles and the inevitable periods of disconnect that happen to us all, only to grow stronger with the passing years. While there had been physical impairments, they had shared travel and adventure right up until the end. Ralph and I share so little. The stab of petty envy I felt was ridiculous—she’d lost her husband for heaven’s sake—but I felt it.

And what’s worse. I also found myself envying the purity of her grief, longing to possess that capacity for heart-wrenching love for a spouse. My love has become so mottled.

These are embarrassingly ugly reactions to another’s loss I know. But I record and sort them out so I can put them aside. Grief is complex. I am only beginning to navigate its complicated waters.

 

Alzheimer’s Benefit–Exposing A Goodness Quotient

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I am prone to cynicism in general. And like a lot of people, I have been more demoralized by the state of the world than usual lately. So I am a bit surprised to find myself celebrating what, for lack of better phrase, I’ll call the goodness quotient in human beings.

Martin Luther King Jr., Gandhi, Anne Frank, Nelson Mandela, Saint Francis—their lives are awe-inspiring and intimidating in equal measure. They have had their human imperfections here and there, but few of us aspire to their level of goodness. At least I never have. (In fact, I admit to spending MLK Day sitting around the house when I should have been out volunteering.)

But after reading the recent spate of articles surrounding Reverend King and John Lewis as well as a post entitled Gratitude in the Land of Dementia on the blog One of Life’s Little Surprises, I am struck by a reality that I seldom consider, the capacity of so many “normal” people to help others.

In particular, how do so many people find themselves able to accept challenges and responsibilities they never imagined they would face when their loved ones became increasing cognitively impaired. Why don’t they walk away (as I am often tempted to do from a so far less difficult situation)?

Individuals may answer, “I love my husband/ wife/ mother/ father/ sibling/ friend/ partner;” but that’s not it, not in any conventional sense. Of course I can’t speak for anyone else when I acknowledge that whatever emotional chemistry existed between Ralph and me before his diagnosis—whether the early passion or deep marital affinity—has definitely altered since his mind and identity have altered along the Alzheimer’s spectrum. I suspect the same kind of alteration has occurred between other caregivers and caregivees.

So, what specifically is the mix of loyalty, generosity, duty and sympathy/empathy that makes so many of the caregivers I’ve run across (who know who you are, Mary, Nancy, and all you others) tick?

I certainly don’t have an answer, but it is heartening to realize that when faced with the challenge, a large number of flawed, normal people are capable of being kinder and more caring than we expected of ourselves

A New Year’s Resolution: Self-Caregiving

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We all hear from and tell others how important it is to take of one self as a caregiver. Lately a Caregiver’s Bill Have Rights Has Been Circulating. The suggestions make a lot of sense, in particular to take care of myself; to recognize the limits of my endurance and strength; to maintain facets of my life that do not include Ralph; to allow myself to get angry or be depressed occasionally (that’s an easy one); to stop being manipulated into feeling guilty (that’s a hard one, no manipulation required); to accept affection, and appreciation; to protect my individuality.

But in talking to others in the trenches, I find I am not alone in feeling that, even with a Bill of Rights posted one my wall, it is not always clear what taking care of oneself means.

One example: Back when Ralph and I were first dealing with his diagnosis, I loved reading about Alzheimer’s Wife’s quick trip to Paris at https://alzheimerswife.wordpress.com/?s=paris, especially since I took a similar two day trip myself. Now my daughter is about to have her first baby and I will be traveling alone quite a bit to help out (I am dragging Ralph with me when the baby arrives but he’s made clear that he does not want to leave home more than absolutely necessary). I want to go and look forward to Nana-ing, but I find myself as worried about the arrangements for him as excited about the actual travel.

The ying and yang here is the question–Do I let myself relax into the slow down, or do I try to squeeze in some activity that ends up putting more pressure on me. My resolution for the new year is to work on finding the answer, for my sake, but also for Ralph’s because he is definitely happier when I am.

But you know how resolutions usually turn out.img_0154

(PS—Happy New Year…I’ll let you know if disinterest in grandfatherhood lasts when there is a real baby for Ralph to hold in his arms)

MOWING A PATH INTO NEW TERRITORY

 

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Last week, at my request, my younger brother flew down from Pennsylvania and spent two full days on our John Deere tractor bush-hogging our fields.

That I had to ask my brother, or anyone, to come represents a turning point. Two years ago, already diagnosed, Ralph spent every day for months mowing the same fields to have them pristine for our daughter’s wedding. A year ago, he was still mowing regularly. But he has not driven the tractor since last spring. And over the summer the wheat/weed mixture grew higher than an elephant’s eye.

I asked during our last Emory Brain Center check up if Ralph should quit mowing, and was told mowing was fine. Although he has stopped driving most places out of fear of getting lost, his motor skills are fully operational.

Ralph’s problem was not ability, but motivation. About every two days we discussed the fields. I’d ask him if he was sure he was up to mowing. He’d say yes…yes but he was too tired or had a stomachache or it was too hot out or too chilly so he was planning on starting tomorrow. Then tomorrow would come and we’d have a similar discussion.

This is the pattern that the spouse part of me has had the most difficulty accepting. I was supposed to be the procrastinator in our relationship, at least in non-emotional areas. I was the one who put off unpleasant chores; Ralph was the one whose mantra was BE A CLOSER, who taught his kids by example to follow through and get the job done because he always did. Not anymore; each time a situation comes up, from helping to clear the dinner dishes to mowing the fields, I want to believe him when he agrees so pleasantly to do whatever I’ve asked. And then of course he never does and I become increasingly frustrated, mostly at myself for falling into the habit of depending on him.

As usual, over the last few weeks the reality slowly seeped into my brain that for whatever reason—because he simply forgets or lacks the energy or has unspoken anxiety about his ability to remember how—Ralph was never going to mow those fields.

And the only person I know with tractor skills is my youngest brother who has always shared with Ralph a love of machines—they spent a joyous summer over thirty years ago taking apart three elderly Triumphs to build two refurbished ones. But over the last thirty years the relationship between the two, once extremely close, became increasing problematic. In fact several years back tensions intensified to the point that the two of them got into a physical altercation during a family wedding.

Of course Ralph doesn’t remember the altercation and has only a vague recollection of there ever being any tension. And my brother has been more than happy to patch things up. He has visited several times recently while passing through. I called and asked if I could pay his way down to help. He agreed immediately.

I told Ralph my brother was stopping by on his way to a business meeting in Florida and suggested maybe we could Tom Sawyer him into helping out around the farm. Ralph thought that might be a good idea and was remarkably unsuspicious on the first morning when my brother voiced an interest in mowing. For the next day and a half my brother mowed and Ralph sat on the porch.

For the first few hours, my brother thought Ralph seemed pretty much as he remembered but that has time went on there were increasing signs of Ralph’s memory lapses and his less definable personality change from Get Things Done Man to Ho Hum Whatever Guy—when a tractor hose broke, Ralph’s response was ‘We’ll deal with it tomorrow’ until my brother reminded him that he was leaving tomorrow and needed to mow today. But the two of them hung out together and generally had a lovely time.

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Boy those fields look great. Maybe we could get him to come back and mow a couple of times a year.” That’s Ralph talking not me. Over the last couple of days, he has made this suggestion a lot.

 

Does Ralph realize the mowing visit was a set up? I don’t know and am not sure I want to ask. We may have found our way into new don’t-ask-don’t-tell territory where we don’t acknowledge but accommodate ourselves to Ralph’s limitations while maintaining his dignity. Or perhaps I am kidding myself about his awareness.

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.

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

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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…

Alzheimer’s and The Downsizing Decision, So Far Deferred

Driving to the recycling center the other night, I was listening to NPR when a story came on about a man with Early Alzheimer’s. Naturally my ears perked up.

Journalist Greg O’Brien has been chronicling his advancing Alzheimer’s in a series of reports called Inside Alzheimer’s. For those facing their own or a loved one’s Alzheimer’s, especially in the early stages, this series from NPR is worth checking out. A range of subjects are covered from telling the kids to hallucinations, to caregiver anger. Not all the topics may be relevant to your situation but you’re bound to find one that connects.

For me it was definitely the piece the other night. Greg and his wife have decided together that it is time to sell their home on Cape Cod and downsize before his condition deteriorates. Greg talked about packing up with the help of his kids and about the pleasure of finding mementos that vividly brought back to life the family’s past.

As Greg talked, I knew Ralph was sitting at home on the porch listening to NPR and I worried how the story would affect him, wondered if he would compare himself to Greg. Because frankly I was comparing them—the same way I compare Ralph to all of my on-line friends who write such articulate blogs about the early stages of Alzheimer’s.

You are all so strong, so wise, so likable in describing your struggles.

I admit, I can’t help what I know is an unfair thought process: wishing Ralph could be more like you and push himself to live life to the fullest. Of course, I know that I am being unfair. It is as if I am asking Ralph to get over this cognitive glitch, as if he it’s his choice, so he can start remembering and I don’t have to be so responsible.

Greg’s involvement in deciding to sell his home was really hit me because I really don’t know how I am going to get Ralph to leave our farm. And the time is approaching. I spent the morning looking at real estate. I am thinking of moving us, at least part-time to New Orleans where my daughter and her new family have relocated so we can share childcare with Ralphcare.

Ralph knows this, sort of. Sometimes he can analyze the pluses and minuses with helpful perception. Sometimes he thinks spending time down there is a great idea. Sometimes he looks at me as if this new idea, which he is sure I’m presenting for the first time, is nuts.

This possible move of ours is the biggest  financial, emotional and logistical decision I have had to make since Ralph was diagnosed with MCI/Early Alzheimer’s. It affects both of us.

[I would love to hear how those of you in similar situations have decided when a change in housing is necessary–whether it’s been a matter of downsizing, moving into special housing, or even living apart–and how you handled the decision-making.]

Personally, this is the kind of decision I used to let Ralph make. I would offer my advice, would influence his thinking; but for all my feminist posturing, I preferred the more passive role—that way when things went wrong I didn’t have to take the blame.

Well those days are over. Women taking responsibility for our lives is great in theory, and probably in practice–I will explore the definite advantages of feeling empowered in another post soon. Right now I can’t remember what they are. All I am feeling is that I have no choice but to take on the power of decision-making for the two of us, and after a lifetime of back-and-forth compromise (mostly my compromise that I often resented), holding that power can be scary and lonely.