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.

Social Isolation is Nothing New in Alzheimer’s

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Week 2

Everyone—and I mean everyone in the world right now—is sharing an experience in common. We are all members of the community of isolation.  We all use our phones and email to reach out to each other, to family, to friends, to people we haven’t talked to in years. We are so glad to hear each other’s voices, but frankly there is less and less to say. “What’s new?”  “Nothing much.” “The weather’s [fill-in-the-blank]”  “I’m watching [fill-in-the-blank]” “I cooked some [fill-in-the-blank]” The calls are getting shorter. They are more and more like my conversations with Ralph have been for months, years.

A truth that has dawned on me this second week in c-hibernation: Living as an Alzheimer’s caregiver has made adapting to living in the time of Corona easier than it may be for others. Those of us who are caregivers, like those of us living on the Alzheimer’s spectrum, have grown used to an approach to day-to-day life that prepared us for this time of grim uncertainty.

We know monotony and repetition, we know the feeling of limbo and the sense that things will probably get worse, we know the slow drip of dread. We also know how to deal with a reality we can do nothing about but can mitigate with small daily behavior.

We know how to problem-solve when the problem is amorphous and how to live in close quarters with another person we can only control so far. We know how to subdue our darker instincts—the annoyances and irritations that build into furies so easily. We have learned how not to lash out.

 

Now that Ralph and I are more or less settled into our new home (ignoring the dozens of boxes that aren’t getting unpacked because there’s nowhere to put the contents until we get shelving, which could be a long while), we are living a life not so different from our life before c-hibernation.

Every morning Ralph asks the same question,” Anything happening today?” and everyday, no matter what I answer, he follows exactly the same routine: breakfast, sit with the dogs while reading, a nap, lunch, a nap, sit with the dogs reading, supper, reading, sleep. Maybe there’s a little bit of exercise thrown in, and a shower, if I push.  But this is the same routine he’s followed for a long time. Meanwhile I follow my own routine of editing, writing, and managing what’s left of our real estate business Sure I can no longer take Ralph-breaks by escaping on errands or see friends, but I get about the same amount of exercise, I talk and text with friends incessantly, I watch the same bad escapist TV.

The big difference in our lives is that Ralph no longer smokes cigarettes. Oh, and his beer count has dropped from four a day to zero. The cessation of smoking was deliberate; once they saw lung damage, the doctors who previously said to let Ralph smoke, said no more. Ralph stopped cold turkey during his hospital stay and has not asked for a cigarette since. As for beer, I am not sure what happened, except he lost the habit. Habits are what guide Ralph’s day and once one is interrupted, it is out of his head. He is drinking a lot of milk instead. In solidarity I have stopped drinking Coke Zero, but my shift is only marginal, to diet-ginger ale. (I figure the ginger is good for me, right?)

So our new life—the city house that replaced the country farm as well as the new community restrictions on socializing or eating in the restaurants I was so looking forward to patronizing—is pretty much the same as our old life. Maybe quieter but also maybe healthier. I am strangely content, which of course makes me a little guilty. Except one thing I’ve learned in Memoryland is just when you start to feel at ease in your situation, the unexpected happens and usually not for the good.

TRUST and CAREGIVING

Ralph and I are back into a routine after our rocky summer and landed on another plateau of what is normal. The changes I noted over the last months have set don’t bother me so much. And there has been a positive development. Ralph now plays music not only in his therapy sessions but also once a week with a neighbor our age who has been teaching himself the harmonica. The neighbor and his wife are newcomers to Nola and have become what I never expected Ralph and I to have again—couple friends. While our two husbands play music together, we two wives share a glass of wine around the corner. Having  witnessed Ralph get agitated at an unfortunate outing to a restaurant, the couple seem undaunted, particularly since we usually meet in our sun room where Ralph is much more at ease and therefor his most cognitively alert, charming self.  

So Ralph is happier these days, as am I. So I take more time to ponder the larger issues.  And what I find myself thinking about lately is trust. Trust in a marriage is always an issue. Trust as a caregiver spouse brings up another complexity altogether. 

In our pre Alzheimer’s marriage, we had a lot of problems but trust was not high on the list. We never cheated on each sexually. Even when we hated each other, we used up too much emotional energy in our relationship to have any left over for others. Our general modus operandi was to argue, sometimes with alarming openness. Several friends whose marriages fell apart after seeming much calmer than ours have said maybe being so openly angry at time saves Ralph and me. Maybe?  Ralph was nothing if not straight forward and vocal, sometimes loudly vocal, in his views, but I could be secretive, nursing grievances and fears I couldn’t bring myself to share. As we bickered our way toward making decisions together, I didn’t always trust his judgement and he often ignored mine. What I did trust in those days was Ralph’s competence. If he said he could fix the plumbing or make the business deal, I believed him.

Well now the parameters have changed.

Ralph really has no secrets—he says whatever pops into his head, loving or nasty—but he also has no judgement. I have had to teach myself not to trust him to do anything. I can’t ask him to chores because 1., he won’t remember that I asked and 2., if he does remember he’s likely to mix things up. His once amazing mechanical aptitude in shot, he can’t read directions, and he has no capacity to problem solve.

On the other hand, he trusts me completely, a trust I am not sure I deserve. He assumes I will do what is best for him. I try but trust is a burden. I make sure his daily needs are met, but sometimes I hide in another room when I know he’d like my company. Sometimes I say I am going to run an errand when I am actually having lunch with a friend, or even our daughter. 

And I no longer discuss with him any issue of substance, for instance tax issues, business decisions, or whether we may need to move to a different living situation in the next few years.  He has no idea that I have been looking into options and I have no plan to tell him until such a move in imminent. I know that closing to keep difficult problems from him is largely for his benefit and that discussing decisions would have no actual benefit. He has no capacity to think through or even follow and would only be upset. But I also feel a bit uncomfortable with power I suddenly can wield over his life.

Facing Caregiver Burnout

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.

Getting Back to the Old-New Alzheimer’s Normal

So today is the first day in a little over three months that Ralph and I are back to something resembling what I used to call our new normal but I guess is now our old normal.

First I had hip surgery. For two weeks Ralph was thrust out of his bedroom and his routine. My caregiving kids made sure he had coffee, beer  and his pills daily, but he had to climb stairs for the first time in ages and he had to feed the dog every morning.  He also got to spend more time than usual with his grandchildren. He seemed to thrive.

Just days after  I was up and about, and our lives seemed back on track, Covid struck. The first week we had the the grandkids staying with us while their parents isolated. Then Ralph got sick. He was never dangerously ill but as I wrote about then, having Alzheimer’s made Covid that much more difficult. He was very weakened.

It took days after he was over the actual virus before he could be coaxed up for meals or to sit with the dog at least for short periods. And he was definitely mentally fuzzy, the same way he’d been after his illness two years ago. Then after only a few days of being upright he was back to bed stuffed up and red eyed. My daughter the NP said it was allergies, but fearing he’d had a Covid relapse (and petrified it could be some version of long Covid, which in combination with Alzheimer’s would promise a bad future for us all) I put my mask back on. Fortunately a Zyrtec/Flonase combo kicked in immediately. He tested negative

Unfortunately in a few days I started feeling ill, took a home test and was bright red ]positive. Ralph was still not wanting to get up. As soon as I saw the results, I cooked up a pot of soup, knowing the next few days would be rough. It’s one thing to care for someone sick, it’s another to feel ill yourself but have to care for someone. 

I am lucky because I never did get very sick, but I don’t think I was exactly what you’d call a loving caregiver. I made sure he had his pills and his meals—and his beer—but otherwise he was on his own. Not that he minded. I wasn’t nagging him to get up and about.

I have been out of isolation for two days now. And this morning Ralph went back to music therapy for the first time in close to a month. Last night he asked for a new book to read, again the first time in a month. 

So maybe we are returning to the old normal. 

But I can’t help thinking that ten years ago neither physical nor mental problems were on Rick’s radar, or mine. I had a busy social and creative life. Ralph was revelling in his life as Mr. Outdoorsman, mowing and caring for his cattle on a daily basis, going on fishing trips with his buddies every chance he got. As an empty nester couple we were actually getting along and planning—fantasizing as it turns out—all kinds of adventures.

That life, that normal, is not coming back. 

Covid with Alzheimer’s–UGH

Yep, Ralph got Covid. And luckily it has not been life threatening. But the last few weeks have been “interesting” to say the least. In part because Ralph was the last to fall from our family outbreak:

Several Thursdays ago (I’ve lost track of time) Granddaughter A had her high school graduation Ralph did NOT attend the ceremony or celebratory dinner. I did, along with her three parents and various other relatives. It was a lovely day. Over the weekend A attended graduation parties, then spent a special evening with my daughter and son-in-law 

That Monday A tested positive. Not terribly sick.  

On Tuesday my daughter tested positive. Very sick but went on anti-viral meds which helped

On Wednesday my son-in-law tested positive.  Very sick but went on anti-viral meds which helped

On Friday the one-and-a-half year-old tested positive. Not too sick, but he couldn’t really tell us.

On Saturday Ralph tested positive. Very sick. But like the baby, he really couldn’t articulate well.

Everyone but the baby is fully vaccinated. Everyone but the baby masks. The two left standing, five-year-old  mini-Ralph and I, are still wearing masks around each other; we’re basically not allowed to be around anyone else in the family until tomorrow. 

The thing is, Ralph had not been anywhere, and once A was positive, precautions wen into high gear—masks, washing, and quarantining. Over and over I told Ralph to stay in his room and never never to leave it without wearing his mask. The only people he came in contact with at all were me, Mini-Ralph and the baby since  they had to stay with us once their parents and sister got sick. And I don’t think he was ever around them for more than a few minutes at a time before I shewed him back to his lair. But Ralph did wonder out of his room unmasked occasionally. While I always caught him it was not always immediate and those few minutes mattered. That baby who was not masked was the innocent culprit. He is too hard to resist. I know I snuggled him. And Ralph must have too. But I was never unmasked. That might be the difference—or it might be pure luck.

In any case,  Ralph’s Covid has been difficult for him because he doesn’t understand exact and has complicated life in general for the rest of us, especially my daughter the nurse practitioner who has basically banished me and Mini-Ralph to the second floor (a bit of a problem given I’m still not quite as strong as I’d like on my new hip) and taken over Ralph’s care.

Fortunately over her Covid symptoms (but still masked), my daughter has been sleeping on the living room couch and caring for Ralph while her husband, also post symptoms, cares for the baby at night. They are also back to their jobs, taking turns keeping the baby during the day using up PTO. (A is fine by now, and back at her job.)

Ralph went on the anti-viral meds as soon as he tested positive, but whether they are helping or not is impossible to tell. I haven’t actually seen him, except from a half closed doorway. I do talk to him regularly but 

  1. He doesn’t remember how he felt the day, or hour, before so there is no point of reference. He knows he’s sick but keeps forgetting it is Covid and will ask me what is wrong with him.
  2. He always has a cold this time of year and has been stuffed up for weeks and weeks—I was testing him regularly even before the family outbreak just in case. He is if anything less cold-like than he was, but he is thoroughly listless.
  3. He embraces his listlessness, which breeds more listlessness. So even as other Covid symptoms abate, his lack of energy continues because it always is there. His favorite activity is sleep under the best of circumstances.
  4. The anti-Covid medication gave him stomach issues that others I know also suffered but could deal. Ralph had more issues because he is so passive about his personal habits under the same best circumstances as above. Or because he had to stop taking some of his normal drugs.

I am taking over Ralph from my daughter on Sunday—and sending Mini-Ralph home to his folks. Ralph will be past the infectious stage by then, although masks will be worn. I am a bit nervous but also ready. I am also thinking that barely over two years ago, just before our move to New Orleans, he had to be hospitalized with a blood infection; afterwards his cognitive skills declined sharply and never full returned to their pre-infection level.

I am a little worried.

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.

A Healing Vacation for Caregiver, and Maybe Caregivee

 

The last few weeks definitely created a change of pace in our lives. After I came home from my hip replacement surgery, I was basically unable to do much of anything for several days except walk, with a walker, to the bathroom and the kitchen table. My daughter took over for the next week—she organized and cooked meals, kept Ralph on his schedule and trained him to sleep in an upstairs bedroom, made me rest and then rest some more.

When my daughter went back to work, my son came for the next eight days. He maintained a similar routine although by then I was moving a lot more, in bed less and transitioning from walker to cane. He set up an office for me downstairs and solved myriad computer issues I’d been having. 

Both son and my daughter prepared elaborate, surprisingly delicious meals that took into account my new low-sodium blood pressure diet. They spent lots more time talking with me than I usually get. They brought me hot tea before I asked. Meanwhile, the post-surgery pain was much less than I anticipated, requiring only Tylenol and muscle relaxer. I listened to books on Audible, binge watched the television my son had set up in the downstairs bedroom and did my very easy physical therapy exercises. 

In other words I not only got a new hip but enjoyed a rather luxurious two week stay-vacation. 

As for Ralph,  he got to sleep later than I usually allow, didn’t have to clear the dishes after dinner, and—not that he talked to them very much—definitely enjoyed having our son and daughter hanging around. In fact, he still has not quite ire-adjust to the fact that my son isn’t here, asking several times daily, “Where is J. Has he gone back to New York?” But any change in routine is  difficult for Ralph, even small tweaks in what time he eats dinner, so he also became slightly discombobulated, slightly grumpy and more than slightly anxious.

For the last week we have been back on our own. I still use a cane outside but am walking cane-free around the house. When asked, Ralph loads the washing machine and dryer for me because I am still not quite able. And he carries in groceries that I cannot lift. But otherwise I don’t ask for much more because, frankly, it is easier to do most tasks myself even at half energy. Since stairs are something I do only with care, I still make him sleep upstairs but still let him sleep later than I used to. He has made his own adjustment. He asks me daily how my leg is and wants to chat more. Or maybe I am just available more since I can’t escape upstairs to my office like I used. (He has interrupted me repeatedly as I’ve been typing just now.). He’s actually agreed to walk around the block with me once or twice; we move at about the same pace for now and have about the same stamina, although I hope for my sake that will change.

What I have realized over these weeks is that I am lucky. I have a new hip that means I will be able to resume a more active life that includes walking, shopping, visiting museums, etc. I have genuinely supportive children. And to speak in bare practical terms, l can pay someone weekly to do a light clean and change of bed linens (no small thing since this is one activity I cannot imagine doing at the moment and know Ralph can’t). 

Most important, I have been reminded that all in all  Ralph is still holding steady, still able to function within his narrow parameters, as defined by our yard and his limited daily routine. His Alzheimer’s related limitations can be annoying, but they are not yet seriously debilitating. I want to make use of this time, once my leg is healed and my energy is back to normal, because it may or may not last.

ps. Shortly after posting this, I misplaced my cane and guess who found it–Ralph!

WHAT HAPPENS WHEN THE CAREGIVER NEEDS CARE?

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?

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

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?

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.