Category Archives: Alzheimer caregiving

Mourning Friends’ Deaths–A Startling Blip in our Alzheimer’s Routine

Alzheimer caregiving, Caregiver/Spouse Issues, , , , , , ,

I haven’t been posting much lately because our life with Alzheimer’s has been sloping so gently that there is little about Ralph’s situation I haven’t already discussed. However, last weekend was a noticeable blip on the static screen of our physical and emotional schedule.I continue to ponder the experience and what it says about Ralph and me now.
In November Ralph’s oldest friend Jim had died in Atlanta. Ralph and Jim met in high school and although their lives had moved in somewhat different directions, the two remained friends and saw other regularly over the years, at least until Rick’s cognitive decline, along with our move to Nola, made Ralph less interested in keeping up with anyone. Somewhere along the line he lost Jim’s phone number, but during the height of Covid I messaged Jim through Facebook suggesting he call Ralph. I didn’t hear back directly but asked Ralph frequently over the next few days if they’d talked;. One afternoon he nodded, “Yes, we talked this morning,”  but showed no memory of or interest in the conversation. Thinking back, I could kick myself for not checking his phone right then and saving Jim’s phone number  I did neither, big mistake. When Jim’s distraught widow contacted us to say he’d died, I was the one who talked to her at length, but Ralph was visibly shaken Ito a degree I had seen only once before—when my father, whom Ralph loved from the moment they met, died

I tentatively brought up attending the memorial scheduled for January. Jim’s widow made it clear it would mean a great deal to the family for Ralph to  take part. I have learned (the hard way) not to  push Ralph into activities—even those I think would be good for him—and to let him set the pace. But Ralph seemed enthusiastic. “I wouldn’t miss it for the world.”

Of course as the day approached Ralph’s enthusiasm waned. He’d forgotten we were going, only sporadically remembered that Jim had died. Still, he passively went along when I reminded him the night before and again Friday morning that we were driving that day to Atlanta for the Memorial Celebration at Manuel’s Tavern the next afternoon. 

Manuel’s Tavern, a bar known as a gathering spot for liberal and leftist activists was a fixture of Ralph and Jim’s youth as political hell-raisers. In fact both were banned from the bar at different times. (I don’t know why Jim was; Ralph was banned because he foolishly brought his mother, whom I’ll  euphemistically call a character, and she got into a fight with another patron.) Jim had stayed politically active; Ralph had become a entrepreneur, even briefly flirted with libertarianism before returning to the liberal fold. Except for Jim, he had lost contact with his old comrades. 

During the eight hour drive Ralph veered between “I am dreading this” and “I wonder who will be there” He tried to dredge up names of old (literally) radicals from the sixties, most of whom I didn’t know since I met Ralph in the early 1970s while we worked at an underground paper called the Great Speckled Bird. Aside from Jim’s family, the only people I knew we would be seeing were Ralph’s first wife and her husband; I’d been emailing with her. I was beginning to wonder if I’d made a mistake dragging him so far. Then we checked into a small hotel in what used to be a flop house in our old neighborhood and discovered the hallways were lined with framed covers of the Bird. It was an eerie beginning.

The memorial celebration itself was intense but meaningful. The first thing we saw walking in was a prominently displayed picture of Jim as a young man, a photo Ralph had taken. Jim’s widow acknowledged in her speech how much it meant to her that Jim’s oldest friend had traveled so far to be there. Ralph nodded and murmured agreement as she and Jim’s sons discussed Jim’s life. And when one of his sons brought up the influence Jim’s mother Noreen had had on all their lives Ralph teared up. Noreen had been like a second mother, introducing him to ideas and conversations, but more important giving him the emotional support, 

he’d never had in his own home. After the speeches he talked to Jim’s widow and two of the sons at length with graciousness and heartfelt emotions. This was a Ralph I seldom see, and frankly seldom saw before Alzheimer’s.

“I wouldn’t have missed this for the world,” he said as we walked to the car. I was deeply moved.

Yet fifteen minutes later, when a friend we met for dinner asked him about the afternoon Ralph shrugged, “A waste of time; nobody talked about 

“I wouldn’t have missed this for the world,” he said as we walked to the car. I was deeply moved.

Yet fifteen minutes later, when a friend we met for dinner asked him about the afternoon Ralph shrugged, “A waste of time; nobody talked about Jim.”

Since then he has not mentioned our trip but every so often asks either  “Who died again? Or “So what did Jim die of?”

Meanwhile, the night after the ceremony I learned that my oldest friend, whom I’d known practically from birth since our mothers were best friends, had finally succumbed the cancer that he’d been fighting for over a year. It was not a surprise, but his widow sounded disconsolate. And today, as I was writing this post, I was interrupted by by my phone beeping—another close friend calling to say her husband had died unexpectedly two days ago. She described herself as numb.

Death is obviously on my mind.  But not only death. Also the complexity of marriage, the complicated grief of the widows.  And the complicated maze my marriage has become, the rare but real glimmers I get of Ralph’s true self punctuating the gray twilight he inhabits most of the time. And how confused my own feelings become.

IN AN ALZHEIMER’S RUT AND I’M GLAD

Alzheimer's Spouse Issue, , , ,

Ralph is fine. I have been slow to post lately, but not because of any crisis. Just the opposite. Our life might be too boring to describe.

            In the first few years after Ralph’s diagnosis of Mild Cognitive Impairment, I watched every change he experienced, observing my own reactions as well. Every day was new, not necessarily in a good way but new nonetheless. I rushed to record for future reference the evolving “new normal”s, dots that graphed  Ralph’s route from MCI into Alzheimer’s

            That urgency has dissipated. Ralph’s life is altering more slowly for now. His set routine has not varied for months. The morning pills, the coffee, the book reading, the radio, the dog, two afternoons of playing music plus a little practicing here and there when I push him, early dinner at home, a little reading, sleep. If anything we have been in a rut, but ruts can sometimes be a good thing. At least we have found a rhythm that is working. 

We do not do a lot together the way other couples our age seem to. Ralph doesn’t watch TV, he is loathe to take even a short walk, he doesn’t enjoy eating in restaurants so socializing with more than a few people. I find I tell him less and less about the friends I’ve made since we moved, the activities that involve me. But there have been exceptions. When his son visited from California with two of the older grandkids, Ralph had a ball, playing music and coming out to eat several times. 

We actually took a short driving trip to visit his old fishing buddies and their wives for three days. Ralph had his limits, preferred to stay alone rather than sit with the others on the beach at times. But he had a wonderful time while we were there and held his own in telling well-worn fish tales. Of course, he forgot the trip as soon as it was over, even as we were driving home. What I think he loved best in fact, was the actual drive—sitting in the passenger seat, having my undivided attention and listening to oldies on Pandora. He even agreed to take a detour on the way home to drive through an arts community I’d heard about. It was the kind of place I’d love to walk around and explore on foot, but I knew that would be pushing Ralph’s envelope to far. And that was fine. I envision more short driving excursions, maybe with a stop here and there, maybe not.

The thing is, now that life has been tailored so closely to Ralph’s needs, I feel less strain. (At least about him; there is still the world to worry about and my own neuroses.) Ralph seems if anything less demanding, maybe because I’ve accepted his level of need.  Life feels oddly peaceful. 

Of course the last time I felt this calm about our relationship was about 12 years ago, just before his memory started to go obviously downhill and our world turned upside down. But for now I’m going to wallow in our rut for all it’s worth.

Facing Caregiver Burnout

Alzheimer's Spouse Issue, , , ,

This has not been an easy summer for me. The physical issues Ralph and I each faced were one thing, but I also found myself a bit overwhelmed.

For one thing, I found myself dividing caregiving energy between Ralph and my grandkids. The summer is difficult for working parents and I was needed more often than usual as a babysitter. I adore the two boys, but at five and one they are a handful. And while Ralph loves the boys too—and they certainly love their “Bop”—he is not helpful. If anything, I have to be on guard,  aware of those rare but unfortunate occasions in the past when something they did ticked him off and he reacted at their level, like an angry child. 

Now that school is back in session, my caretaking life is less splintered but I am still coming to grips with two other realities. 

One is that Ralph is showing small but revealing signs of slippage. His memory of the past has become muddier, while the newest memories slip more quickly out of his grasp. Repetitive conversations are certainly not new, but he not only forgets but can’t quite unravel facts and idea as they’re presented. And his capacity to manage his daily life has weakened. He used to make himself a sandwich for lunch every day. Then it became necessary for me to tell him to have lunch. He’s never hungry unless I remind him he is (although so far he still remembers his desire for daily beer). Now I simply make his lunch. Feeding the dog used to be the one responsibility I could count on Ralph fulfilling. Now I feed the dog. I also make sure Ralph showers. And recently I realized that he puts back on his dirty clothes if I don’t make sure they’re in the hamper and clean clothes are at the ready. 

But these changes are not noticeable except to me. He continues to make reasonable, even charming  small talk with friends and strangers. And he is physically healthy. I know many other caregiver-spouses facing quicker, steeper descents, so I feel a little guilty complaining about life with still easygoing, still more or less functional Ralph. 

But this summer, I felt depleted, less up to managing the daily grind of care. I have felt more lonely. And tired, the reason I have not written much here until now. I think I am coming out of a season of caregiver burnout.

I/We have been dealing with his cognitive impairment for ten years now. Ralph was diagnosed in 2013 but showed very clear symptoms a year earlier.   Those early days were highly stressful; although Ralph was able to do so much more than he can now, his capabilities FELT jarringly diminished compared to what he was like before. Words like cognitive impairment and dementia sounded horrific and terrifying. Gradually we adjusted of course. I began to recognize that one day’s new normal would only last for so long before the next level of new normal set in. I adjusted as one set of skills after another disappeared, grass mowing, driving alone, driving at all, playing Jeopardy with the tv, watching tv. I learned to tamp down impatience and to lower expectations. I depended less and less on Ralph for practical help or for meaningful interaction until somewhere along the way we reached the tipping point where Ralph became completely a dependent and I became a caregiver more like parent than spouse. 

Over these years I had moments of resentment and sorrow, but also of affection and connection. I also worked hard to maintain my identity. And I felt plenty of support; it didn’t hurt when others told me what a great job I was doing. Most of the last ten years, I’ve been basically in a pretty upbeat state of mind, and kind of proud of my ability to cope. 

But sometime during this strained summer (perhaps exacerbated by unending heat and rain), my inner resources shriveled. I just felt worn out. I saw my life narrowing with Ralph’s. I felt angry and alone. 

I can write this now because I am feeling better. All it took was a weekend in front of the computer doing bookkeeping of all things. Working with numbers took my attention away from everything else. This morning as I swam my early morning laps, I swished my arms through the water and suddenly realized I felt better, refreshed. I came home and called some friends to reconnect. I chatted with Ralph and stayed relaxed. Halfway through writing this post, I made his lunch and chatted with him some more before making sure he showered. And I still feel good.  Hope it last at least a little while.

An Alzheimer’s Swap: Less Memory, More Fixations

Alzheimer caregiving, Alzheimer's Spouse Issue, , , , , , , ,

tags

Ralph can’t find his belt. Everyday.

I’m at the dining room table doing my morning’s bookkeeping when the phone rings. It’s Ralph calling from the bedroom, forty feet away.

Have you seen my brown belt?

No.

When was J here. He must have taken it. J is our son and Ralph has decided that anything he’s missing has been taken by J

J has been gone for two weeks and you wore it yesterday.

Well I can’t find it. 

I walk through the kitchen to the bedroom and find the belt in Ralph’s closet.

The next night I’m watching tv in our bedroom after dinner when the phone rings.

It’s Ralph calling from the den where he’s been reading.

Have you seen my belt.

Weren’t you wearing it all day.

Well I can’t find it. J must have taken it.

J has been gone for weeks. 

I turn my head to glance into the bathroom and see the belt hanging on the towel rack.

The phone rings in my car as I’m about to pull out of the driveway on my way to the grocery store the next morning.

Have you seen my belt.

Obviously misplacing a belt is no big deal and only a notch away from losing a cell phone or reading-glasses as I do all the time. What disturbs me is not the losing but Ralph’s unshakable certainty that someone, specifically our son, has taken the belt. 

The stolen belt is Ralph’s current fixation, but there have been many others—his broken tractor back when he was actually still able to operate the tractor, the tools we left behind when we moved, the whereabouts of our savings, and on and on. In each case he rubs at the problem like a worry bead and blame becomes the only explanation that soothes him. Luckily, so far, he has never turned his blame spotlight on me even when, as in the case of the tools, I was probably the culprit. 

While his list of fixations has been lengthening and taking more and more of his mental space, Ralph’s overall grasp of memories has weakened. I am not talking about the short term stuff everyone associates with Alzheimer’s. Yes, he repeats conversations over and over; and yes, he often can’t remember if he’s had lunch or fed the dog or brushed his teeth.  But he also has increasingly less grasp on those older memories I expected him to be enjoying now.

We’ve all heard that people with Alzheimer’s are good at reminiscing about their past. Well not Ralph. Although he’ll still occasionally ask about an old friend, he seldom connects a story to the name any more. He has several fixed stories in his head from the past, some of them a bit off kilter. (Remember when we used to listen to Leonard Cohen regular program on NPR? he’ll ask regularly.) And beyond the boundaries of those fixed stories lies a memory desert. There are so many tales he used to regale me with about his childhood and his life before we met that he no longer remembers. I am pulled up short with shock each time he looks at me blankly when I bring up the time he did this or that. What must that blankness feel like from the inside?

It now occurs to me that maybe I need to see Ralph’s fixations as mental oases that offer him subject matter to mull over and talk about and fill an emptiness he must find scary. I will try but I can’t promise I won’t still get annoyed when the next phone call comes and I have to defend innocent J.

WHAT HAPPENS WHEN THE CAREGIVER NEEDS CARE?

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

Ralph and I are about to enter new territory, at least temporarily.  And for me at least it will be a new kind of balancing act, mental and physical.

Next week, exactly two years to the day since moving here and one year since I began a cycle of accelerating pain in my left leg and backside, I am getting a hip replacement.  

The good news is that hip surgery is usually very successful and I am thrilled that there is a solution to stop the pain and give me back most of my old mobility. 

But every time the doctors describe what I will not be able to do during the recovery, I wonder how Ralph will fit into the picture. I will be the one heavily dependent on others for around two weeks and then have limited mobility for awhile—i.e. no bending more than 90 degrees, limited household chores, etc., depending on how quickly my body recovers. At that point I should be able to manage my own needs fine, with a little help, but will I have the energy to manage Ralph’s too? And I certainly can’t count on him for help. 

Arranging my own immediate care has been easy. My son came last weekend to prepare the house, putting a TV in the bedroom for me, cleaning my car and moving furniture. My daughter, a nurse practitioner, is taking a week off to stay with me. When she goes back to work, my son will come back until my post-op check up. Reorganiing after-school care for my grandkids—I usually pick them up every day and keep them until their parents get off work—was not my problem but has been taken care of, fingers crossed.

As for Ralph, we are entering uncharted territory. He is clearly nervous, when he remembers the surgery is coming. Typically, his biggest concern is whether he might have the same problem. He also says he will do whatever I ask him to help. I have already taught him many times, each time it is the first, how to load the dishwasher and feed the dog. Actually the dog, who is learning to sleep in Rick’s office instead of the downstairs bedroom with Ralph, where I have re-installed myself to avoid stairs, has adjusted very well.

Ralph’s adjustment may be trickier. He functions best when he can stick to his routine of eat-read-nap.   I am worried that after the first weeks, once I am back on my own yet not back to full strength, I won’t have the patience to keep that simple routine running smoothly. Intellectually I know the details will work themselves—his pills, his beers, the laundry, unloading the groceries, defrosting the stews and casseroles I have pre-frozen—but I have been obsessing because there is something deeper bothering me.

It showed up last week when I had two scares. One was over my blood pressure, which was worrisomely high when I was checked at a pre-op appointment. When I checked it again the following day the numbers were even higher, dangerously high, so high I was advised to take an extra dose of my blood pressure medicine and then when it stayed up high to go to an emergency room. Which I did, driving myself after telling Ralph I was just going to a doctor’s appointment. He barely looked up from his book. Fortunately the numbers dropped and I was home to make dinner. And the numbers have continued to drop so my surgery is still on. 

One probably reason for the high numbers was an attack of high anxiety over the second scare: I was told that my surgery date was going to be changed causing all the plans I’d put into place to be scratched and leaving me alone with Rick and barely able to for five days. Fortunately my surgeon stepped in and said my family situation made schedule changes impossible.  But for a while there, I was petrified. Even writing about the possibility gets my pulse rising. 

The reality is that caregiver spouses have very little leeway. I want to relax into my recovery, and I will try—have books and movies at the ready—but part of me will be worrying about Ralph as much as I’m worrying about myself.

PS. As I wrote this I remembered that a less than a year after Ralph’s initial diagnosis I fractured my right ankle on black ice. Ralph was still driving then and actually drove an hour on his own to meet me in the emergency room. He drove me back to the hospital for surgery on the ankle weeks later and was a huge help in general during my five months off my leg. His reaction and behavior were in sharp contrast to his unhelpfulness, born out of fear and discomfort, when I had a mastectomy ten years earlier. Ironically, MC/Alzheimer’s has made Ralph a person who wants to help but has also ended up robbing him of that ability.

Alzheimer’s and Assisted Suicide: Why Can’t I Read Amy Bloom’s Book?

Alzheimer's Spouse Issue, , , , , ,

By now most people reading blogs like mine, about caring for a spouse with Alzheimer’s, have no doubt heard about In Love: A Memoir of Love and Loss in which well respected author Amy Bloom writes about supporting her husband when he decides that he would rather die than live with the disease. It is the kind of book being praised on NPR and Goodreads. I gather the book is beautifully written and has deeply moved the readers who read and reviewed it.

I have not read the book. Actually, I have barely read/listened to the reviews, although I did more or less make it through the first one I saw in the NY Times earlier this week. From that quick skim through, I know that Bloom and her husband were deeply happy before his diagnosis of Alzheimer’s, that he decided he would prefer to die than go through the changes Alzheimer’s was going to make in his identity, and that he and Bloom were very united once he made his decision. 

I have no ethical problem with the choice they made. I believe that everyone’s quality of life decisions are individual. Ralph and I have signed our living wills. I witnessed my mother’s declining years up close and personal in my home as she enjoyed being alive less and less. I wished, and still wish, she had died sooner than later (like my father who died of a heart attack in the hospital the night before he was to be given a diagnosis of cancer, probably bone, for the excruciating pain he’d experienced during the previous month).

Yet reading about this book has flummoxed me (ok, creeped me out is what I really feel but was a little shy about saying out loud)? I have not been able to think straight about my reaction. My thoughts keep sliding away. What is it that has repelled me like the wrong side of a magnet? 

Well, number one, the idea of Ralph choosing to end his life right now is so completely foreign to me that I can’t get my head around the concept. As I’ve written here before, he is completely happy with his life—I write this sentence in a waiting room while he has his weekly music therapy; in half an hour he will come out humming Leonard Cohen’s Halleluiah or The Eagles’ Hotel California and keep humming in the elevator and in the car home.  

And even when he was first diagnosed and overwhelmed with some combination of anxiety and depression, suicide was not part of his mental vocabulary. His memory was shot but his mental acumen was still intact. We were both petrified at what the future would hold, petrified for different reasons. He was just petrified to have me out of his sight in case the rest of his memory went suddenly. He wanted to be taken care of. I was petrified at the responsibility I was taking on; I imagined life with an angry, anxious cognitively declining man and my heart rattled in horror. If he had brought up preemptively ending his life, I very possibly might have been open to it. (Pre-diagnosis, there were plenty of times I wanted him not dead exactly, but completely out of my life.) Then he went on his meds, his anxiety decreased while his memory declined at such a gradual pace that I needed to write this blog to keep track.

Ralph is definitely not the same man I married. I gather loss of identity was deeply concerning to Bloom and her husband, whose name Brian Ameche I keep conveniently forgetting. But while Amy and Brian had only been married twelve happy years, Ralph and I had been a couple for close to 40 years when he got his diagnosis. Over those decades we had both gone through identity changes. I felt I had already been in several marriages as the dynamics between us shifted. Who held the emotional upper hand travelled back and forth between us, occasionally landing at oases of shared affectionate unity. Our worldviews diverged, mine growing more optimistic, his less, and our political leanings became a more divisive problem than Alzheimer’s—I really hated libertarian Ralph of 2003. As for personal identity, gregarious, charismatic Ralph became loner Ralph long before the slightest overt evidence of cognitive decline and I slowly lost my social insecurities and became, however briefly, something of a social butterfly. And all this was before Ralph and I went into counseling in our mid-fifties and discovered we could get along after all. 

Which is to say, the new Alzheimer’s Ralph is as real to me as all the other Ralph’s I’ve been married to. And is certainly as real to Ralph. He has no interest in the man he used to be, has no interest in his old interests. He has no sense really of having “lost” much. He is living moment to moment and, as I’ve said, is as happy as he’s ever been.

So why does a book about a man who made a different choice trigger me so.  

Perhaps because the Ralph who does not miss his past also does not worry much about his future. Those fears have been repressed or blocked or just are beyond his scope. I, however, do think about the future. I do worry about unspeakables like diapers and loss of speech, of bedsores and hallucinations. I worry but sometimes—and this is the uncomfortable truth—sometimes, I wish they’d come already, that I was freed from togetherness limbo.

I know that is not the emotional thread of Bloom and Ameche’s story, but it is my emotional thread, and one that can tie me knots if I let it. So reading a book like In Love is not for me, at least right now. But of course, with Alzheimer’s there is only imagining what tomorrow will bring. 

Small Difference Radiate Out in Our Alzheimer’s Marriage

Alzheimer caregiving, , , ,

Sometimes it is the smallest moment that is the most clarifying about what my life with Ralph has become.

This morning was absolutely beautiful weather, sunny and warm in the early seventies. Shirtsleeve weather.

I ran my early morning errands and did some work in my office while Ralph and Lola were, I thought, comfortably ensconced in his office.

But when I came down to check on him, Ralph was lying on his bed in his coat, shoes, and wool cap underneath the wool thrown rug.

“I’m freezing.” 

“The thermostat says it’s 71, and anyway I was out early and amazed how warm the air felt.”

“No, it’s not warm at all.”

I opened my phone to the weather app and showed him the temperature.

“Look, 72.”

“Your phone is wrong. Go feel the air.”

I opened the bedroom door to the back patio. Still sunny and warm.

“Close the door. Don’t you feel that breeze?”

“You’re being ridiculous. If anything, it is warmer outside than in this room.”

“I know, this room is always cold.”

“Well, why don’t you get up then and come in the other room. If I open the new shades the room the sun will pour in and will really heat up the space.”

I recently installed these solar shades, which Ralph has loved because they keep the room warmer in winter than it used to be by creating a strong layer against the cold. But in warmer weather like today’s, the shades block the sun to keep the room from getting too hot. But that if that’s the heat he wants, I’d just roll them.  I was quite proud of myself for having created such an easy solution to our ongoing weather issue.

“No,” Ralph said quite emphatically bursting my bubble. “Now I have made myself comfortable, I’m not moving.” 

“Suit yourself. But you really should not lie on the bed all day.”

“Why not?”

I paused. There we were, two people whose body temperatures were totally incompatible, whose experience of the world around us not longer aligned, if it ever did. And neither of us was really in charge, because while in practical terms I made most of our decisions, every decision made revolved around him (not unlike when he was the obvious dominant head of the family). He is always cold, I am always hot. It’s such a small difference and yet…

I know all the reason I should have given, but I looked at him and shrugged, why not indeed.

Ralph’s Alzheimer’s Social Anxiety–or Mine?

Alzheimer's Spouse Issue, , , ,

Yesterday I held a garden party. A baby shower actually for a friend of my daughter. I had volunteered us as hosts after several glasses of wine at a dinner the three of us shared a few months back. We scheduled the shower, pre-omicron, for the first Saturday in January, but the virus messed up our plans so we rescheduled and started thinking outdoors if possible. Then threatening weather and heavier covid numbers forced us to reschedule again. And again. But the third time stuck. Beforehand Was very nervous how it would go. I didn’t know most of the guests and was worried the weather would force us either to cancel or move inside, not really an option under the circumstance.

By it turned out to be a lovely day, light sweater weather under clear blue skies. The scones and petit fours were tasty, the tea was hot, the Prosecco bubbly. As an added surprise, the mother of the mother-to-be who had arrived the night before from her home in Spain to stay for the next two months It was fun for both of us to hang out with a bunch of young women and each other. 

Ralph came outside for about five minutes to take a group picture and was absolutely charming. Otherwise he watched from his office window, a ghost no one but me and maybe my daughter even noticed. 

His reaction/behavior encapsulated much of his/our life over the last six weeks. Close friends rented a house near us for those six weeks. Except for the week I quarantined after my grandson tested positive, we spent a lot of time together, probably seeing each other at least every other day. Sometimes we cooked together here at my house. Ralph loved when they came by and after the first week of my repeating reminders that they were here for a long visit, he began expecting them to be here for dinner every night and asked me throughout the day what they were doing or where they were.

Around them he was fully engaged and extremely witty. But he did not come out to dinner with us even once. I would go through the motions of asking him to come, but he wasn’t interested and I never pushed. For one thing he hated the idea of eating outside, even with the gas heaters keeping diners perfectly warm, but mostly he just didn’t want the hassle. Even in the house, he wasn’t interested in sitting in our very comfortable, warm living room. To be with Ralph we had to sit near where he was enthroned in his chair. 

My friends enjoyed being with him at first, but the unequal footing on which Ralph and the husband in particular stood became difficult for them to navigate after a while. I could tell they began to find it a bit trying, or that Alzheimer’s mix of trying and funny, to spend longer periods of time with Ralph. And they never quite got used to (and why should they?) Ralph’s endless repetition of questions. (The truth is that their discomfort was kind of a comfort to me, and release valve. I also have to admit I enjoyed those dinners out without having to watch over Ralph.)

As the weeks past and there was talk of moving the baby shower, he became particularly obsessed and confused when any mention of it came up. He couldn’t remember knowing the mother-to-be, whom he has spent time with on several occasions. But more than that, he could not get his head around the idea that I was having a party at all. 

Why are you cleaning the yard?  

Why are you going to the bakery?

 Is it a birthday party?

 Who is coming? 

Who’s pregnant? 

Who is she? 

How do you know her?

Is it her birthday?

 And of course, Do I have to come? 

The conversational loop gathered momentum over time and became inescapable. And inevitably so did giggles and impatience to cut the evening short. Last night, post shower, he was still asking the same questions as our friends stopped in for their last evening before heading home this morning.

So here we are.  Ralph has taken to his bed to recover from his busy weekend although he has already forgotten there was a party. And I think he’s beginning to forget our friends were here too.

Alzheimer’s and Dementia-I Finally Erase the Line

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

—————–—————- – – – – – – – – – – – – – – – – – – – – – – – – –

I remember when I bridled at the interchangeable use of Dementia and Alzheimer’s. This was back when Ralph’s diagnosis was MCI, Mild Cognitive Impairment, or may even slipping over in Mild Alzheimer’s. I clung to narrow definitions back then. The plaque build up his tests showed signified Alzheimer’s and served as my point of gravity. I could tell people, i.e. myself, that he had a specific physiological condition. I did not want him lumped into the big vague world of dementia. No, really, I did not want to think of him as “demented” as in the pejorative taunt “You are so demented.” 

Now the boundaries between definitions matter less and less. While repetitive questions and conversations are annoying, Ralph’s memory loss feels routine except when a visitor comments and I recognize the behavior afresh through her eyes. As an echo to Ralph, or a habit I’ve picked up from him, I think I also repeat myself more.

As for Ralph’s general behavior, his passive has inertia has become, like the radio he listens to all day, the background noise of my own more active life. I come and go, I clean and cook, I talk on the phone and escape to my office, I mess with the grandkids. He sits and watches. We spend large swaths of time together in near silence. 

I find I don’t really want more from him: I find most of our longer conversations, which occur while he watches me prepare his meals, deadening. He usually wants me to clarify some fact from our past that I have clarified many times before. As he gets entangled in what seems simple logic to me, as he repeats the same questions or commentary, I sense his desire to connect on the only wavelengths he has available. But I often resist, am short and evasive. I don’t want to face that he might be lonely and I could make him less lonely if I engaged back, if I were a little more loving and patient. A little less wrapped up in my own anxieties.

As for his dependence on me, it is really just another part of our routine I don’t notice anymore, especially when we are alone and I’m not comparing our relationship to others’. 

Ralph’s condition is what it is, ever changing in small increments and this is the life we both lead, one I find myself adjusting to on a daily basis. I don’t have time or energy to worry about definitions now.

Do You See What I See-the Alzheimer’s spouse refrain

Alzheimer caregiving, , , , , ,

Ralph enjoyed his Christmas from what I can tell. He was not excited about going to my daughter’s house on Chrismas Eve, but he was totally involved in “surprise present” game in which Ralph opened a big cardboard box inside which LittleBoyRalph popped up pretending to be a mechanical toy with an off and on button—both Ralphs had no problem repeating the game over and over to everone else’s delight. Nor was he excited about Christmas dinner but then was charming. I was told by several at the dinner how “good Ralph seemed, better than I expected.”

I always hate those comments, well meaning as I know they are. And KG’s recent response to my last post definitely came to mind. What he wrote—“Others don’t see what I see”—really hit home. I am struck that there are elements of daily life with Alzheimer’s that don’t get discussed because they seems so trivial in the scope of things (the weather and certain small fixations like Ralph’s daily Nutty Buddy) or slightly embarrassing (issues of hygiene come to mind and my allowing Ralph nightly beers). I see the hitches in his most basic problem solving, his passivity (often a godsend frankly, like this afternoon when I had to drive our neighborhood streets aimlessly for an hour because I had a napping child in the backseat and Ralph was perfectly happy in the passenger seat), his social disconnect when he wanders back to his bedroom despite having guests in the room talking to us. 

At the same time, I don’t think I pay the same degree of attention as I used to in the early days. I’m afraid I don’t note as carefully as I used to every small Alzheimer’s wrinkle as it crops up. I don’t worry so much about whatever new normal has arrived. Everything is normal.

I think I see Ralph as clearly as I need to. But then he still can surprise me. Ralph used to be something of an artist. After his diagnosis of MCI I found him an undemanding art class he attended weekly with great devotion for years, but then the teacher had to stop teaching and although I set up a studio-office for him behind our house here, he has not picked up a paint brush or pencil since we moved in. Until yesterday.He had found a blank artist pad I’d bought at the drugstore for LittleBoyRalph and sketched from memory our old dog house on the farm as well as some kind of fighter jet. He also wrote his name on the sketch pad to make clear it was his. It now sits between the cushion and arm of his chair. I am amazed at his initiative and his spark of pride, like a sudden blip on a flat graph line. I also wonder whether he remembers that the sketch pad, which he didn’t touch today, exists.