Tag Archives: Alzheimer’s passivity

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

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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. 

NEW COUCH; OLD PRE-ALZHEIMER’S ANGER

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If the idea of showing anger against someone cognitively impaired makes you uncomfortable, you might want to stop here. 

I am not about to talk about the resentment and frustration all caregivers feel at times. I am about to describe the kind of red-hot “Drop Dead!” fury that used to wash over me in my pre-Alzheimer’s marriage, usually over seemingly small issues that represented bigger, unspoken rifts. Over our first 35 years of marriage that fury rose up a lot in both Ralph and me, whether expressed in his ugly shouting or my snide passive aggressiveness. He was unapologetic about his “my way or the highway” attitude. I fought for equal power in our relationship, usually without success (although he might disagree), and spent a lot of waking hours seething against him. 

After Ralph’s diagnosis, his personality, perhaps even his character, changed. His enviable physical and mental energy dissipated. So did his unpleasant authoritarian belligerence.  While I often bemoaned his post-diagnosis lack of interest in the world around us and my need to think for both us, not having an often-more-than-equal partner but also has its advantages. Yes, I miss his companionship, but I enjoy his current appreciation of my caregiving and my willingness to make choices for him. His passive disinterest has meant that after years of fighting his decisions and usually losing or resentfully accepting them, I have been learning to trust, even relish decision-making on my own. 

That is, until THE COUCH.

Specifically our new living room couch. 

In the past our furniture always had a somewhat masculine quality. Rustic. Practical. Brown, lots of brown (excepting the blue green chaise lounge I bought myself as a sixtieth b-day present but ended up sharing with the dogs). His choices made sense in our farmhouse, but the city house we’re in now, with its 19th century New Orleans architecture, calls for a different, dare I say feminine approach. 

Or this was my rationale behind THE COUCH. Sick of brown and dark and masculine, I told myself that after all, Ralph and the dogs live in the kitchen/sunroom and our bedroom with occasional forays to Ralph’s “office” created just for him in the garage. Bedroom and office contain the very masculine, very brown furniture we brought with us, while the sunroom is currently a hodgepodge with one comfortable chair in which Ralph sits. 

The kitchen/sunroom in one side of French door we keep closed. On the other side is the living room, a basically empty space although Ralph and I agreed to put in inexpensive bookcases and rug from Overstock.  I also ordered the kind of probably impractical couch I’ve always wanted: slip-covered, off-white, soft cushioned (Ralph always ruled strongly against loose pillows on furniture). I actually think I talked to Ralph about the couch, but maybe not. I assumed he would not care. After all, he and the dogs never come through those French doors. 

I ordered in April and after some minor drama—a dark gray couch with weird arms arrived initially by mistake and had to be returned—THE COUCH arrived at last two days ago.

Ralph let me know his opinion immediately. He began shouting in a voice I had not heard in years as he stomped between the kitchen and the living room and I responded, not shouting but with cold-blooded rage: 

That couch looks like a white elephant in there.

I like it.

What did you pay for that thing? It looks cheap. Like it’s slip-covered.

It is slip-covered. I wanted slipcovers.

I can’t believe you spent that much.

You have no idea what anything costs.

What were you thinking choosing this?

This was what I wanted. You’ve chosen things lots of times against my wishes.

What did I ever choose?

Oh Please.

(silence as I start counting up the much bigger decisions that he no longer remembers bullying me into but I suddenly do in stark relief) 

Well, I hate it.

Well, I’m not sending it back.

Well it’s a piece of sh…

F… You.

Ralph disappeared into his bedroom. I fumed my way through preparing dinner. He reappeared and started in again with pretty much the same refrain. By the third repetition, I knew what to expect but was still mad. I didn’t care that he was cognitively impaired. I just hated him and his way of letting me know I was an idiot, of making me doubt my judgment. The way he made me feel small. 

I went to bed feeling more like a wife than I normally do these days. And guess what? I didn’t like it a bit.

Of course since then, Ralph has not mentioned The Couch. And my own anger is gone.  I’m aware that his lingering low-grade crankiness comes from a combination of an earache and taking him off his anti-anxiety medicine. Ralph is still lethargic but more on edge. I’ve already contacted the doctor. 

This little blow up was a reminder, though, not to sugarcoat what our marriage was before Ralph’s diagnosis. I am committed to caring for Ralph; but with or without Alzheimer’s, ours was always a difficult, imperfect relationship. Maybe all marriages are; just the specific problems differ.

Ralph and Alice Move Just In Time to Stay In Place–Comic Relief in the Time of Corona

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Moving to a new city in the middle of a pandemic with a physically frail, cognitively impaired husband may not have been the wisest decision I ever made, but it was the only one available.

We’ve been here almost a week and every day has been crammed with incidents that make for fear, anxiety, but also a surprising amount of laughter. Problems that would be minor in normal times loom larger when they can’t be fixed in the foreseeable future; problems that would freak me out in normal times seem humorously trivial now. What follows are just a few of the highs and lows of Alice and Ralph’s misadventures because I’ve already forgotten the rest; there have been so many.

THURSDAY  We arrived much later in the afternoon than I’d hoped but with Ralph and the dogs in better spirits than I’d expected. Workmen were still here finishing the dog’s fence and putting locks on doors before heading into c-virus hibernation. The bedroom, bath and kitchen were ready though, and Ralph lay down oblivious while I met for two hours with our contractor. He wore what looked like a futuristic gas mask as he led me through the rest of the house pointing out all the work that would have to wait until who knows when. Around 8pm I woke Ralph to share a microwaved frozen pizza –fortunately my daughter had stocked our kitchen with food to make sure I was not tempted to shop.

Close to the front lines herself as a nurse practitioner, she’s very protective of her father and me. Ahead of the government, she has mandated absolute isolation: o grocery shopping or even taking the dogs on walks. And because she works at a health clinic, she and everyone in her family, including babyRalph, are off limits. I go to bed wondering if coming to New Orleans was a huge mistake.

FRIDAY   I’m up with sun telling myself optimistically that it’s a new day. I can’t wait to try out our new white and shiny shower (with a doorway big enough for a wheelchair if that time comes). I turn on the spigot. It falls into my hand. I call my contractor who forgot to tell me he’d ordered a new spigot that would be put on later today. No shower obviously so I get dressed.  Oops, I seem to have left the bag with my underwear and socks in Georgia. I am laughing as I text about my “crises” to friends.

Ralph doesn’t mind skipping a shower; he is remarkably happy lying in bed with the dogs nearby.  But to avoid contact with the plumber in the afternoon, I drag Ralph to sit in the kitchen where he watches through his window as two guys finish a few exterior tasks before leaving for the duration.

“Why are they wearing masks?”

“The virus.”

“Right, The SARS thing?” SARS it will remain in this house.

My daughter checks in from work at the clinic where her boss has just described their work as ‘staring at a freight train heading full speed straight at you.’

A bit rattled, I put a pot on the stove to start dinner listening to a news report that mentions the governor’s new regulations about social contact. Click click but no gas. I light matches. No gas and no gas smell. I take a breath and text our contractor although I know he’s had nothing to do with the stove, which came with the house. I quickly teach myself my first lesson in how to use the intimidating microwave that also came with the house.

SATURDAY   We’re schedule to get WIFI/TV this morning but given the governor’s order limiting work to essential services, I am not sure the installer will show, or if I want him to. He shows. I follow him around at a distance with a bottle of disinfectant. It’s exciting to have TV and WIFI. I fire up my Mac no problem, but when I try to turn on my business computer, it doesn’t recognize my password.  I start to panic. All our finances are locked in the computer. I take a breath; the tech guys who helped me set the password days before we moved (who needed a password on a farm?) aren’t available until Monday. I face the reality that there’s nothing I can do and that if necessaary I’ll bookkeep by hand the way I used to as long as necessary. The good new remains Ralph.  He’s forgotten all about his back pain, also that he was sick last week. He willingly sits outside with me to drink our morning coffee. He doesn’t miss the farm one iota.

The washing machine is the next thing I can’t get to work. I text the contractor, thinking to myself I can hand wash from now on if I have to.  The contractor face times with me. First he figures out why the stove is not coming on and that there no way for me to get it fixed for now. Oh well, I have an oven, a microwave, and a George Forman grill, plus an electric teakettle; I’ll get by. As for the washing machine, once we check the breakers, my contractor has me snake my arm with the phone around the machine so he can see behind. It’s unplugged! Twenty minutes later I find my bag of underwear. I am ECSTATIC.

SUNDAY (or maybe it was still Saturday, my days are beginning to run together) My daughter calls. Her boss at the clinic has tested positive. Telemedicine is going into place. Did I mention my daughter is pregnant?  I am sick with ANXIETY.

I do not tell Ralph.

He is oblivious. Physically he’s back to what he was before his hospitalization, but mentally he’s made a shift. It’s subtle, a matter of passivity more than memory. If I don’t give him a plate or a cup he doesn’t eat or drink. If I don’t order him into the shower (now working and lovely), he stays unwashed.

MONDAY  I am about to call the tech guys about my computer but give it one last shot punching in every combination I can come up with. It turns on. Maybe anxiety had me typing in wrong letters the other or maybe I have a sticky key. I don’t know but I’m not turning that machine off any time soon. I have a relatively pleasant day avoiding the world outside. I do editing, I work on a writing assignment. I unpack more boxes. I’m more relaxed than I have been in a month, but being in this new environment and out of our old routine forces me to see more clearly how much my relationship with Ralph has deteriorated as a partnership. The silence.

TUESDAY  After looking out my window and realizing that I am looking into my neighbor’s bathroom at an inopportune moment, I figure out how to hang some impromptu curtains. I am proud of myself, becoming someone who solves physical problems. I also solve a problem concerning Ralph’s prescription drug insurance. All before 10 am. But I’ve been so busy I haven’t checked on Ralph, assuming he’d call me on his cell if he needed me. I go to the bedroom where he is fine, but his phone is dead. No charge even plugged into a working outlet. I call Verizon, am put on hold, then on call back status during which time I take a quick shower. Finally a technician comes on. It takes us five minutes to fix the problem. I think to myself that I’m glad I’ve sent up a landline for Ralph to use in an emergency. Of course now I need to order an actual landline phone.

WEDNESDAY Here we are. Ralph in his realm downstairs, me up here doing work and texting friends. I’ve been entertaining my friends with daily blow-by-blow accounts of our foibles. The humor may be only skin deep—it feels flimsy in retelling here—but it is what works to pull us through.  And oddly, Ralph is almost an inspiration. He’s so damn relaxed!  I am trying to stay relaxed too, by worrying about only those issues I can actually problem solve, like cooking rice in the microwave. Or the fact that Ralph’s phone just died again.

Alzheimer’s Shrinks Ralph’s World and Ralph

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I have been focused a lot recently on my reactions to Ralph’s slide along the Alzheimer’s continuum. But after a weekend apart, I am struck anew how much Ralph’s world has changed.

His memory seems to be holding, at least as far as facts are concerned. Not that it is good or anything like normal, but it remains generally on the same plateau it’s sat on for a while now. He repeats himself; he asks the same questions over and over. He remembers certain details from a conversation and obsesses on them. And he repeatedly forgets not only conversations but also what might seem large basic facts. While I was away he spoke on the phone to a friend who was disturbed that Ralph seemed to think I was home. “He’s never seemed confused that way before,” she said to me with concern. His forgetting can seem like confusion, but really it is not. When he called me to ask me to pick up some dog food (which I had forgotten to do before leaving for the weekend) and I joked that I could get the dog food in New Orleans, he laughed and admitted he’d forgotten and then went on with following his daily routine “life list” perfectly well.

But while he has remained on this memory plateau, the sands have been shifting beneath him. The lack of memory has changed who he is.

So while I would define his forgetting for the moment that I was not in town as a memory problem, not a confusion problem, I have seen him confused, and I think he is more prone to confusion than he used to be. When he can’t remember, he grows anxious, and when he grows anxious he has even more trouble remembering. A spiral top starts spinning. Similarly, sometimes he can’t grasp what I’m trying to explain because his anxiety about not understanding twists him into an emotional knot. (And I realize that when I talk to others now, I tend to over-explain out of habit, but that’s another subject.)

He is also fearful–in part because his weakening memory leaves him uncertain from moment to moment, but also because he’s become a person with a very limited world and like many confined to limited worlds he has a fear of the unknown.

And hand in hand with fear is a sluggish passivity, a disinterest in what lies beyond the immediate scope of his memory . He has less and less physical, mental or emotional energy to engage with others. I have noticed that his sister and oldest son, both of whom  used to talk to Ralph frequently and enthusiastically, seldom call now. And I understand. It is hard to talk to someone who only wants to repeat the same few conversations over and over. Patience wears thin. People have their own lives to get on with.

Of course, I often resent and feel trapped by Ralph’s limitations myself. But today I am sad–for Ralph and for how his identity is being chipped away in small but steady increments. Does he know? I’m not sure. It feels as if I were watching the act of sculpture in reverse—the vibrant image of a man being returned to stone in slow motion.

The Zest Deficit– Cognitive Impairment is More Than a Loss of Memory

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I spent last weekend in NYC, visiting my son and old friends, going to restaurants and museums, carrying on lively conversations about politics, art and philosophy. I came home five pounds heavier but energized, reminded that there was a world out there and I was part of it.

I almost added to the above paragraph, “Also guilty” because that has usually been the companion feeling when I enjoy myself without Ralph. But I am not sure I did/do feel guilty. Pre-Alzheimer’s spectrum Ralph would have wanted to share that energy, would have been jealous that I was getting to have experiences without him, would have missed me, would have made me feel guilty. Ralph as the person he is now does not feel as if he’s missing anything when I go out into the world without him. He is thoroughly content to sit in his “office” or in his porch rocker or at the kitchen table as long as his dogs, his cigarettes and either his beer or coffee are nearby. When I walk in the door, he is glad to see me but more interested in returning to his chair or to bed.

Still having been gone a few days having fun, I wanted to offer a nice meal to Ralph last night. I asked if he’d like anything special for dinner. I am a pretty good cook, and Ralph used to have very definite ideas of what he liked to eat and very large appetite. Eating was always one of the bedrocks of our relationship. We shared an enthusiasm for trying out the newest, most cutting edge restaurants in any city we visited. For choosing the most exotic and/or spiciest choices on any menu. And for experimenting at home with made up recipes.

“Whatever is easiest,” Ralph said last night, as he has said every time I’ve asked lately.

No suggestion I made could draw any enthusiasm. So I threw some leftovers together and was done with it.

We woke this morning to a beautiful fall day. Dry but not too dry, a few clouds in the blue sky, a slight wind ruffling branches still full of green leaves, the temperature in the temperate 70s. The perfect day for a walk.

I asked Ralph if he’d like to take one with me.

“Not really.” He wasn’t being mean. He just wasn’t interested.

Ralph used to walk every day. I was the lazy one he had to drag along.

Along with a loss in memory has come what I can only call a loss for the zest Ralph used to take in life’s small pleasures. Yes, witnessing this change makes me sad, but I have to acknowledge that Ralph is not sad. He is content. I am the one who feels discontent. When I throw a slapdash dinner together or skip a walk for lack of a human companion—and I do both with more regularity than I like to admit—I feel that I am letting myself be diminished, or more honestly, am diminishing myself. It scares me how easy I find it to sink into the featherbed of sloth. Am I using Ralph as an excuse or is Ralph’s condition wearing me down? I’m not sure, but the fact is that my new normal is the color gray. (In fact, I actually found myself thinking last night that I wanted to reupholster the living room chair in gray fabric.)

The New York weekend reminded me that highs are still out there to experience. Of course, so are lows. For Ralph, he’s found peace in passivity as his world shrinks. I have to decide whether I let my world shrink too.

Meanwhile, I think I’ll take that walk with Lola the dog now.

Moment of Reflection: Where We are On Our Alzheimer’s Journey

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Last week I had the opportunity to speak on a panel about caregiving in to a group of nurses and nursing students at Emory University in a conversation titled Lived Experiences in Coping. The other two members of the panel, the wife of a man with Parkinson’s and a woman who has MS, were actually nurses themselves so I was a bit intimidated at first, but I think I held my own (although I fear I went beyond my 15 minute time limit). And it was a fascinating morning as we shared perspectives and answered questions from the professionals who asked over and over what they could do to improve the care experience.

As valuable as the meeting was, what was most useful to me was the preparation. In the invitation to speak I was asked to discuss how we arrive at Ralph’s diagnosis, and how the news and illness trajectory have affected my and Ralph’s lives.

Not surprising questions or ones I haven’t thought about in the past, but ones I have avoided thinking about for a while. I used to take stock regularly to keep perspective, but lately it’s been easier (i.e. less scary or anxiety producing) just to rock along day by day without considering the long picture and the implication Being asked to talk at a symposium forced me into that area of necessary discomfort.

So what I jotted down:

Diagnosis came in 2013. Before that I didn’t want to think his memory problem was serious in part because his failing memory coincided with a personality change I liked. In fact I realize that for those few pre-diagnosis years we were in a SECOND HONEYMOON—he was less angry than he had been as a younger man and a sweetness emerged that he had not shown before. If he was secretly stressed, I didn’t choose to notice.

Then for maybe six months before the diagnosis, Ralph went from forgetful to what I found at the time annoyingly inattentive. I thought he wasn’t paying attention when I had to repeat things over and over. And he was often argumentative at night, so we went to bed angry at each other, but while I’d wake up still angry, he’d wake up denying there’d been any friction the night before. But still we were closer than we’d been for years.

Then his memory tripped him up more obviously—I have written about the fishing trip that made him realize something might really be wrong because he couldn’t keep up with the other guys—and he saw our family doctor who sent us for tests. Ralph and I were convinced he had Lyme’s disease.

Between taking the tests and learning the results we went from honeymoon to LIMBO. In real time I am only talking about a month or two from test to first diagnosis and another three months until we saw Dr. Lah at Emory’s Brain Clinic. But the period felt much longer—one of those crucial moments in time that stretches as if time has slowed down to allow for the heavy significance. We didn’t know much about Alzheimer’s. We were both anxious. Neither of us knew exactly what to expect but we were talking about it A LOT. I remember a car trip, six hours talking away, feeling oddly close as we faced an uncertain future together, both of nervous but open and oddly upbeat. The ride was actually kind of fun.

Then we got the diagnosis and went from Limbo to PURGATORY. One day he was one person, the next he was someone else. Not that his condition changed, but one it was NAMED, it was much more scary. Suddenly he was terribly, terribly anxious and suddenly I felt the need to limit plans, to take over his business (and close it), to act as a buffer between Ralph and all the people who didn’t know he had an actual condition that was causing him to act certain ways. Purgatory lasted for a long while. He seemed to slip dramatically and then, once he began his drug regimen, he regained some ground, only to slip a little more over time. His memory did not get worse—it was already terrible in the first tests—but slowly other aspects of the Alzheimer’s spectrum showed up, like passivity, lack of time awareness, loss of sense of direction, withdrawal from the world, and a general malaise along with the frankly beneficial loss of memory of all arguments and disagreements as he embraces those with whom he had fallings out. My symptoms as caregiver also showed up—greater impatience and loneliness balanced by a kind of desperate energy and new to me gregariousness as well as moments of patience I didn’t think I could manage.

For a while now, we have been on a PLATEAU. Ralph has been holding steady more or less. Some days he’s more with it than others. But I can’t really see much difference from week to week.

The big difference is in expectations. It’s not that I have bad ones. Or not exactly. I have none at all. The rule of thumb is that Alzheimer’s progresses, but the rate is so varied that I have no clue how it will progress in our case, what route it will take or how long. But I do know that when we move from this plateau, the next stage will not be good.