Category Archives: Alzheimer’s Spouse Issue

IN AN ALZHEIMER’S RUT AND I’M GLAD

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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

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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

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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?

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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?

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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. 

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

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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

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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.

Living Between the Cracks as a Caregiver

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Lola has not adjusted to the switch from daylight savings time so last week I started a new regiment. I fed the dog at 5:30 am, was at the pool at by 6:20 and home by 7:40 to bring Ralph his coffee and pills. 

I do not think of myself as either disciplined or a willing early riser, but midweek as I was kicking slowly down the length of the pool on my back, I realized that this schedule was actually perfect and also a metaphor for how I was learning to handle my life in my newest normal by finding personal time between the cracks, even if the crack is at dawn or ten pm.  

Then this Wednesday a child in my four-yea-old grandson’s pre-school classroom tested positive for Covid. Everyone in the class was (understandably) required to quarantine. Because the kids are so young, the school is not letting kids return for two weeks although once a child tests negative at five and seven days he can be around others. Since Four-year-old Ralphie’s one-year-old brother is not vaccinated, the family has divied up. Baby, Papa and teenage sister are staying at their house while Ralphie and his mother are with me. Both parents are working full time. So I have been spending my days masked, like Ralphie, playing hours and hours of his version of The Christmas Elf and of Christmas Day (A lot of the same small household items end up under the tree and in stockings and I get to express great surprise, O a coaster!)

Yes, three days in and I am already exhausted

Ralph, on the other hand, is very happy having Ralphie around the little he sees him. He must be masked when in the same room so has been spending a lot of time with Lola in his room.Since I am basically not leaving the house—no swimming and no socializing over coffee, that’s for sure, also very little time for my editing and writing work— he also has me at his beck and call, albeit my attention is divided.

The cracks in my metaphor have temporarily all been spackled. And yet as I look forward to the time ahead when our schedule re-normalizes into whatever normal may be in two weeks or two months, I have a sense of how to approach my time—I’ll grab what I need when I can, feel not an ounce of guilt for grabbing but also accept the limits. 

Ralph’s Newest Test Scores-Not Great

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Ralph went in for his annual mental check up last week.

Ralph was first diagnosed with MCI (Mild Cognitive Impairment almost eight years (eight years!) ago. At the time his personality and interests were what they’d always been despite his memory issues. I remember being angry in the months (years?) before his diagnosis, thinking he never remembered what I told him because he wasn’t paying attention, or even less attention than he used to. Getting an actual diagnosis was almost a relief for me—having a name to excuse Ralph’s behavior, at least in one area. He was upset, anxious and scared, but as I kept reminding him, MCI, stood for MILD impairment.

For years Ralph was what one of his former practitioners called her Poster Boy for Alzheimer’s Care: year after year he avoided the cognitive and behavioral slide statistics predict. While I noticed subtle changes—slowing down, turning inward, growing passivity—his actual memory skills held pretty much steady from year to year. Then last year’s tests showed a slip from MCI to Mild Alzheimer’s. Still, MILD, I reminded myself. 

I knew we were lucky yet I have sometimes felt a tinge of resentment when friends, family members, and even professionals didn’t notice the changes I saw. Was I imagining things I something wondered.

At the check up Ralph and I are interviewed/tested separately. Despite having noticed, and written posts about, more recent changes in Ralph—his growing lack of interest in talking on the phone; a drop in his problem solving that shows up as confusion managing minor tasks he used to handle adeptly; and some loss of memory about the far past—I told Dr. K. that despite what I’d noticed, I didn’t expect his test scores to drop. A moment later Dr. S. came in and dropped a small bombshell: Ralph, who has dropped a point a year at most in the past, dropped three points on the 30 point MpCa scale this year, moving from Mild to Moderate Alzheimer’s.

Knowing the numbers doesn’t really change anything. They just acknowledge the changes I already recognized. But I do find myself thinking in new ways about the future and how my needs as a caregiver are bound to change. The last six months of hip and back issues that impede my own mobility—I hope temporarily–have colored my thinking. Last week I was in something of a funk, wondering if I should sell our house, the one I moved us into barely 20 months ago and spent a huge amount of energy renovating. I thought about elderly high-rise living, a place with a memory wing of course. But today, I am more upbeat. There is no knowing the timeframe in which we will be adjusting. All I can do is adjust day to day. So, the other day, after he suffered an anxiety attack while I was having a quick dinner with a friend—fifteen calls I in the space of half an hour inside the restaurant and several more calls after I talked to him because he couldn’t remember what I’d just told him—I bought a white board. Not to remind Ralph to keep to his routine, which would be a waste because he wouldn’t remember to check off activities once he did them, but to make sure he can see in writing where I am at any hour of the day. He loves it.  

I’m sure there are more small innovations to come, and more anxiety.

Ralph loses his best friend—Alzheimer’s and grief

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Ralph’s beloved 17 year-old lab died last Monday. It was time. But getting Ralph to realize it was time proved a challenge.

For the last eight weeks Zeus had been on a steady decline. When we returned from the family beach vacation in early August, our regular dog sitter admitted she had worried the whole week that Zeus might die on her watch. He had been so much frailer than in the past and was having what she thought were mini-seizures. 

Our vet explained they were not seizures but neurological problems that affected controlling his back legs. Acupuncture would help but not solve the problem. About the same time a gaping wound appeared on Zeus’s hip. It turned out to be a bed sore. The vet, whose own lab had succumbed not that long ago to a similar combination of ailments, warned us that the bed sore was going to be very hard if not impossible to treat, not only because it was an internal infection but because how do you stop a dog from lying down, especially one who can barely stand up. Zeus began weeks of intensive treatment—lasers, oral and topical antibiotics, acupuncture, and a huge bubble bandage that could only be changed by a professional. I was administering his various doses at home and taking Zeus to the vet office several days a week, no small task since he had to be carried into the car. Ralph helped with the lifting but he couldn’t really keep up with the dog-nursing.

At first Zeus seemed to hold his own, more or less. But the hurricane evacuation took its toll. The bandage fell off. The wound festered. The legs gave out. And by the time we returned, Zeus was basically unable to stand without being righted by human hands. 

We did another round of laser/acupuncture/antibiotics/band aids. I could tell Zeus was not getting better, and when the vet warned that if Zeus did not improve this go round we would have to discuss “quality of life” I was ready. In truth, I am not a dog person by nature and my patience was strained. Not to mention that poor Zeus was increasingly incontinent, shedding profusely and smelly.

I reported back the vet’s remarks to Ralph.

“I am not killing my dog.”

“No one is talking about killing.”

“Would you kill me?” 

When I next took Zeus back to the vet, I brought Ralph with me. Covid era vet visits take place in the parking lot. Ralph was chatty with the vet until she said there was no improvement and used the dreaded phrase “quality of life.” Ralph went dead silent. 

“I am not killing my dog,” he repeated once we were back in the car and throughout the evening.

I scheduled another appointment. This time inside the vet’s office for THE TALK. Ralph listened as the vet described how hard it was for him to put his own dog down. Ralph nodded and seemed to hear the vet’s explanation that Zeus was not getting better. 

But as soon as we were alone, Ralph asked, “So is Zeus getting better?”

“No, he is not going to get better.”

“Well, I am not killing my dog.” 

We reached a compromise: We’d revisit the situation in two weeks. That was a Thursday afternoon. 

The process so far had been grueling. I was constantly on edge, expecting Ralph to explode in fury and fear. I also resented that I was caring not only for Ralph but his dog. And I was aware that Ralph saw the parallels between his own infirmities and his dog’s every time he asked “Are you going to kill me?” 

On Friday, Zeus was definitely weaker and even Ralph noticed the way he whimpered at times. By Saturday, Zeus was unable to untwist his back legs. 

Ralph struggled with Zeus, let him lie down and turned to me.  

“Ok, as long as I don’t have to be there.” 

With his blessing, I called the vet and made an appointment for Monday morning. 

For the 36 hours Ralph was as weepy as a man who doesn’t know how to cry can be, frequently wiping the edge of his eye with one finger.

But on Monday he was surprisingly calm when he carried the dog like a child  to the car for his final trip to the vet. Then he went back inside the house as I backed out the driveway. When I got home, alone, he asked for the details. I described Zeus’s calm comfort at the end. 

Since then Ralph occasionally says he can’t get used to Zeus being gone. He asks me if I think we did the right thing. He asks me to remind him “What was wrong with Zeus again?” and “How old was Zeus when he died?” I tell him.

“Oh, you know 17 is very old for a big dog,” he always explains to me then, as if I’m the one who needed convincing. 

And I nod, thankful I gave Ralph the time to come to the choice on his own.