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.

Signing Wills While We Still Can

So this week we had an outing: to a lawyer’s office to sign our wills. 

We drew up wills in Georgia years ago, before Ralph’s diagnosis, and a few years ago we updated the wills, to account for the reality that if I were to die Ralph could not handle the responsibility of being an executor or trustee. He agreed and we made the necessary tweaks. But Louisiana laws are slightly different so I was told to have the wills reviewed and updated yet again.

I find messing with wills—getting my head around the face that my death will actually happen and has to be prepared for in legalistic and monetary terms that may have emotional import and fallout I won’t be able to undo—unnerving. The first time I signed one, without Ralph with me for some reason, I became so unnerved that afterwards I wondered around the parking lot in tears for about an hour unable to locate my car (ah, the days before clickers).

In those days I worried how I would manage if Rick died first. How I would manage finances and make business decisions. Also, how I would do emotionally,  the loneliness and helplessness I might feel. I don’t need to worry about any of those issues anymore because I face them everyday now.

Instead, especially since turning 70 in a Covid world this year, my concern is how Ralph will fare if I die first by some ironic fluke of fate. So while I’ve procrastinated about a lot over the last few months—finding a dentist, hanging pictures, starting an exercise routine, getting involved in organizations to support issues that matter to me, etc—I did find a new lawyer here who has worked with me to finalize our Louisiana documents.

I didn’t confer ahead of time with Ralph this time around. A day or so before our appointment I told him we had an appointment with the lawyer and explained the small changes I was having her make. His only concern was how he’d get cash if I weren’t around; he keeps a $20 bill in his wallet along with one credit card, although he goes nowhere without me and has not purchased a thing since we moved to Nola. I told him one of the kids would take him an ATM machine, which he has never learned how to use, he was satisfied.

The morning of the appointment Ralph asked numerous times which doctor we were going to and I had to remind him each time that we were going to a lawyer concerning our wills and the reasons why. Doing so was important because our new lawyer wanted it to be clear in front of witnesses that Ralph understood what was going on.

And once we were in the lawyer’s office Ralph was fine and at his most charming chatting about our move and asking the lawyer questions about growing up in New Orleans. He signed the required codicil with a clear understanding what it said. 

But then the lawyer brought up the Power of Attorney that I already had in Georgia but we needed to extend in Louisiana.

Ralph looked at the papers in front of him. 

His Covid mask covering his facial expression, he announced rather loudly, I don’t want Alice having Power of Attorney for me. I don’t trust her with my money.

The lawyer looked up startled. Well, more than startled. I saw what looked to me like panic in her eyes.

He’s kidding, I said to the lawyer putting as much jovial smile into my voice as possible behind my own mask..

You can’t kid like that, I said turning to Ralph, trying to keep my tone light. 

He’s such a joker, I said to the lawyer. Ralph making a joke meant Ralph was mentally competent right? 

Right. 

Ralph chuckled, pleased with himself for scaring the poor woman.

The lawyer laughed with relief. 

Ralph signed his name.

Well, that went well, Ralph said as we descended in the elevator afterwards.

Twenty minutes later he settled into his chair at home and looked at me.

Remind me again, where did we go today

IN EARLY ALZHEIMER’S AVOIDING ONLY GOES SO FAR

This stage of living with Ralph’s Early Alzheimer’s has become something of a blur. There is so much sameness; so much less, well less drama. 

Ralph is calm and comfortable. And I’m used to, even sanguine doing everything practical that needs doing—appointments, bills, cleaning, cooking, planning. Basically thinking for two—and even used to the conversations we have over and over. We don’t analyze or discuss the situation any more the way we used to when he was first diagnosed. We avoid confronting the facts I suppose.

I make sure he has his coffee and pills in the morning and that he showers and changes his clothes (every other day at least). I check in on him randomly through the day to make sure he has eaten lunch, that the dogs have been let out and brought in before they bark, that he has books to read, that his two beers appear from their secret hiding place when he asks, that he accomplishes small chores like taking out the garbage and picking up dog poop in the yard when asked. He likes the sense of accomplishment; I no longer ask/expect more. He still takes an occasional walk with me if prodded. We always have dinner together, always with a radio on to hide our lack of conversation. 

And sometimes we listen to a music program (sometimes the same show repeated on different nights, but Ralph doesn’t notice). These are our most engaged, lively times, but Ralph seldom listens to a whole show before wandering back to the comfort of reading in bed.

So our life repeats itself day after day. Boring but Easy. Asking little and not really paying more attention than absolutely necessary, I go through the routine of our days without the anxiety that used to roll over me daily.

But last night I had to notice.

First Ralph surprised me by asking about our upcoming trip back to the farm to get his tools. Now the tools, or the fact that the farm’s current owner threw them out with all the other junk in the storage shed so they are gone for good, are a topic of frequent conversation. But last night Ralph wasn’t asking about the tools; he was talking about a trip he believed was planned, was sure I’d told him we were going very soon for a visit

He accepted my response, that no trip was planned and that in fact no trips were planned because of Covid. But I could tell he was confused in a different way than usual. He had not forgotten something, or even misremembered.  He had created an idea out of the blue. I was thrown off kilter but let it go. 

A few hours later I came into the bedroom a little before nine. Ralph and the dogs were tucked. By rote I checked that the door from the bedroom to the back patio was locked. It wasn’t. 

Which was strange because Ralph is an obsessive stickler for doors being locked. Now that we live in a city, locking all the doors has become one of Ralph’s repetitive behaviors, like rubbing his hands, and drinking his beers. 

“Ralph, you didn’t lock the door?” I said in casual surprise but without concern. I always check the doors myself anyway, a bit of a stickler myself these days. 

“I thought I did,” he said, and then added. “You better check them every night. I can’t  trust myself to remember.”

Avoiding only goes so far. Those five words broke my heart. 

Ralph Can Still Surprise ME

Like everyone, I have been reeling from the surprising events of the last week. But in the midst of national mahem and fear, Ralph offered me a lovely surprise I didn’t expect. As I left the house Thursday morning to help with grandbabysitting, I mentioned that we would need to put the xmas tree outside later.  Then the day got away from me. I periodically checked in on him ( I think although I was so tired from  staying up most of Wednesday night glued to CSPAN, that I’m not sure), but didn’t get home until late afternoon. The sun was already setting and getting out of the car I consciously dreaded having to get Ralph to help me drag the tree out to the curb in near darkness. Instead I walked into the house and discovered an empty corner where the tree had been.

“Didn’t you tell me to take it out?” Ralph said looking up from his book.

“Yes, I guess I did but,” I didn’t finish the sentence. “I really, really appreciate this, “ I kept repeating instead. And I did. I made him an especially nice supper and made an effort to sit with him longer than usual afterwards. It was such a rare treat, to have a request followed. Not to have to repeat myself multiple times until I gave up and did it myself, or to have him sort of do what I asked but in a way that required me to step in and redo. I felt as if I had been given a rare, totally unexpected gift. 

I also felt a bit sad, that Ralph performing such a basic task made me jubilant, at least for an hour or two.

A Low Voltage Covid Christmas Feels Just About Right For Ralph

It’s been over six weeks since I last reported on Ralph and me—the longest I’ve ever gone—not because so much is happening or so little, but because I have not been sure what there is to say. We are treading water though in separate pools. I find myself living increasingly my own life. The few friends I’ve made despite covid are single women. I care for my grandkids at their house. He’s not lost more ability

Ralph, now adjusted to his new meds and his docile covid self, spends most of his time sitting in a chair reading by the window in our sunroom. He seldom uses the phone and the conversations are shorter and shorter. He likes quiet, his diminished interest in listening to radio logical since he really hasn’t listened to what he hears for a while. Getting him to take walks is harder and harder. He rarely bothers to walk the extra steps to his “office.” Ralph still likes the almost-four-year-old’s almost daily visits, but pays him barely a moment’s attention before he’s back to his dogs and his books. He reads voraciously, anything I hand him, the longer the better. He says he truly enjoys the reading although he acknowledges that he retains nothing the moment he puts the book down. And he reads quickly—funny, since pre-diagnosis he was a slow reader who retained ever single word and nuance—so it is hard to keep him in books especially since going to the library is not something I’m doing during Covid.

So for Christmas Ralph received from me a mixed box set: War and Peace and The Brothers Karamazov. Should keep him until at least February. For Christmas I received from Ralph whatever I felt like buying myself, and I didn’t stint. I am wearing new pants, shirt, and sweater as I type.

The thing is, Christmas more or less brushed by Ralph this year. In the past, even and maybe especially since his diagnosis, he looked forward to our blow out Christmas celebrations with a childlike anticipation. But this year he was oblivious, which was just as well since there was no blow out happening anyway. I debated whether to bother decorating our not fully furnished house, but ended up pulling out my boxes of Santas. I bought a tree already on a stand so Ralph didn’t have to mess with it. He said it looked nice, once, and never glanced at the tree again. Which was fine with me. The almost-four-year-old grandson loved my Santas and also could stand for ages in front of the tree deciding which ornaments were his favorites. I spent evenings sipping tea in front of the tree alone with David Sedaris.

Xmas eve morning Ralph looked up from his reading to ask why I was carrying a pile of presents out to the car.

“Christmas”

“I thought we did Christmas.

“No we did Thanksgiving last month. Now it’s Christmas.”

He nodded and returned to his book, no further questions asked. But he came along that afternoon to eat Chinese take out with our daughter’s family, our watered down version of our usual Xmas eve blowout. He was patient but bored and missing his dogs so I drove him home as soon as he finished eating, then returned alone to hang out finishing preparing for Santa’s visit.

The next morning I brought Ralph coffee early because I was dying to see the grandson’s reaction to receiving the present Santa was bringing, bright yellow digger.”

“Anything on our schedule today?”

“It’s Christmas morning.”

“I thought we did Christmas already.”

“Last night was Christmas Eve. We’re going over to open presents.”

The three-year-old’s Christmas joy was so infectious that it even perked up Ralph who parked in a chair where we brought him food and gifts to open.

The next morning, it was chilly when he got up. I suggested he wear his new flannel shirt and vest.

“What vest?

“The one you got for Christmas.”

 “When was Christmas?”

 I know someone reading this is thinking, how sad. But the thing is, Ralph is very content from moment to moment. And frankly, thanks to an increasing ability to compartmentalize and ignore, so am I. At least for now.

Weather Report: Alzheimer’s Winds Rise From Mild to Moderate During Political Hurricane

So between a hurricane which knocked out our power and the new grandbaby and an election that has yet to be settled, I have been adjusting to another new reality, less dramatic but personally profound concerning Ralph.

When we met with our new team at Ochsner’s brain health center, the neuropsychologist, Dr. S., was wonderfully tactful.

“You have been doing really well holding steady and now have shifted from mild to moderate.” 

That was all he said about the day’s testing before moving on to discuss…well I kind of tuned out at that point. Ralph didn’t register anything of concern and I registered it all too well.

Basically we are at that tipping point I have been expecting. And yet now that the level of cognitive decline is officially changed, it feels less dramatic and specific than I thought.

Or it did.

A news alert on my phone bolted me awake early this morning.

“Biden is ahead in Georgia.” I shrieked to Ralph.

“Is that important.” 

“Very,” I am quivering with excitement to share.

“Who was he running against?”

“Trump.” 

“Oh yeah. Who’s winning.”

“We don’t know yet.”

“Is this the primary?”

“No, it’s the election. You’ve been listening all about it on the radio.”

“I wasn’t really paying attention.” 

“Well it’s up in the air. People are very nervous.” 

“Remind me who’se running.”

“Biden and Trump.”

“Oh yeah. I don’t remember voting.”

“We mailed in.”

“Oh yeah.” And he’s back to sleep.

Living through this crazy election with Ralph really points up the oddness of living in a marriage with someone on the Alzheimer’s spectrum. 

Ralph listens to NPR all day while sitting in his “office.” Ralph spent his first 64 years a deeply political animal, even as he veered from socialist to libertarian to Hillary fan. Many of our marital battles centered on political disagreements (masking perhaps deeper psychological/emotional issues we weren’t ready to face). Certainly family dinner conversation focused on Ralph’s take on the news of the day. 

Yet now, as one of the most important elections of our lives unfolds from one excruciating moment to the next and my anxiety level has ratcheted up from eating everything in sight to losing my appetite all together, Ralph is oblivious. And the divide between us feels all more acute.

He knows the names. Biden Trump. “Is this Trump’s first or second term?” He likes to ask. But it matters to him no more than the weather. Actually the weather matters to him much more. 

Over the last few days I have texted and spoken to friends and family in a constant sharing of mutual anxiety. I have certainly not felt alone. But increasingly, Ralph is although I’m not sure he notices. 

Ralph’s New Support System, And Mine

Since moving to Nola in late March, the one worry I’ve continued to have has surrounded Ralph’s Alzheimer’s care. I feared that six years at Emory’s Brain Health Center, surrounded by physicians on the cutting edge of research, had spoiled us although. There were drawbacks to Emory: Neither Rick nor I will miss the three-hour round-trip trek from our farm every visit (a drive that kept Ralph and me from participating in support groups and activities Emory offered); and as Emory’s client load grew, I sometimes felt a little lost in the shuffle. But I knew Ralph was getting topnotch treatment, and it concerned me that while our providers in Atlanta encouraged our move to Nola, they knew of no similar providers in Nola to recommend.

Finally a friend with medical connections recommended one neurologist at Ochsner Hospital who specialized in dementia, but he ended up too busy to see us. Instead, the neurology department assigned us another doctor we knew nothing about. But we needed to see someone since almost 18 months had passed since Ralph’s last “annual” cognitive check up. I scheduled Ralph into a virtual appointment at the end of August—a mistake on my part since Virtual does not work for Ralph who has enough trouble with doctors in person and refuses to (can’t) use any newfangled phone or internet technology. The neurologist asked the right questions and was perfectly pleasant but did not make a real connection with Ralph (i.e. Ralph decided he didn’t like him). I had already silently accepted that Ralph’s Alzheimer’s care would be less extensive going forward; I told myself that, aside from the annual testing, I no longer needed lots of professional input since I was the one in the trenches monitoring Ralph’s daily functioning. So when the doctor said he would schedule Ralph’s cognitive testing, I assumed with equanimity that that’s all it was—testing.

I was pleasantly surprised yesterday to discover I was wrong. It turns out Ralph’s testing was actually the first step in becoming part of the “Care Ecosystem” for brain health at Ochsner. We met with a neuropsychologist who bonded with Rick over dogs, a nurse practitioner who came up with a change in Ralph’s prescriptions that sounds promising, and a Care Team Navigator who says she will be checking in by phone with me on a monthly basis or as needed. Wow! on that last one. I thought outreach support only happened in other countries with better health systems in place.

According to the handout I received, Ochsner’s goal is “to personalize the Care Ecosystem for each patient and caregiver.”  I’m not sure why the program is not better known, but my guess, from the high level of enthusiasm on the staff, is that it may be relatively new.

I am going to do more research on exactly how the program works differently from what Emory offers and will be talking to our navigator more tomorrow. For now I am enjoying my relief that Ralph will be getting good care, and only a 15 minute drive away. And my relief tells me there is something else I was wrong about–for all my declaring that I didn’t need professional support, I did and do. I left the clinic feeling so much less weight on on my shoulders and in my heart.

As for the cognitive testing itself—I’ll need another post to digest the results.

PS A funny typo I caught just in time: The title almost read “Ralph’s New Support System, and Mind”

Waiting as a Way of Life

Waiting for a possible hurricane or tropical storm while also  Waiting for the new grandbaby while Waiting for the election while Waiting for Ralph’s new cognitive testing while Waiting for the next news bombshell while Waiting for the insurance inspector who maybe forgot to call and cancel while Waiting for redelivery of a replacement for whatever was mis-delivered for the house(wrong rug, wrong couch!, wrong toilet seat, etc.)

Waiting has become my way of life as it has for so many others in America these days, especially as the election approaches. 

But really, I’m a lot less anxious than I would expect.  For better or worse I seem to be adjusting to living in a present that is also a waiting room for an uncertain future. 

As for Ralph, he feels less uncertainty these days. He’s been reminding me of Winnie the Pooh lately, perhaps the result of too much grand-mothering on my part, but also because like Pooh, Ralph inhabits a limited, slightly unreal world. Yes he worries endlessly about small matters (Oh Dear Oh Dear says Winnie the Pooh)  but basically Ralph and Pooh both assume they’ll be taken care of, by Robin and me.  And as long as he stays put in his world, Ralph is not simply happy. He is completely functional because he faces no demands beyond his capacity. He feels competent because he’s not asked to test himself. In fact, since the move his life has simplified. There is no check list of what he must do. He drinks the coffee I bring him at seven am along with his pills. He wanders between his bedroom and his new “office five steps across the patio;” if anything life has become easier because at the farm he had to walk across a small field or drive a loop of dirt road to get to his office. He sits in the office with the radio or lie on his bed reading whatever book I’ve give him. Sometimes he reads the same book twice back to back with the same pleasure of vague, faded familiarity I feel when I begin a book I last read thirty years ago. He naps. While I cook dinner he drinks his two allowed beers  in the sunroom off the kitchen sitting in his new favorite chair with a pleasant view of a garden. He eats his nightly nutty buddy after dinner with the same gusto Pooh has for honey. Then without fail, he puts the our dog Lola in her cage and locks the bedroom door to the patio—the two chores for which he maintains responsibility—and gets in bed. Sometimes he reads a little, sometimes he goes straight to sleep. 

Each day includes, or is mostly, long empty spaces. But he doesn’t notice. And as long as I don’t ask for him to break the routine, he is easy in his mind. If I break his physical or mental routine, he gets rattled. His brain snags on a details he asks about over and over. That is most of our discourse these days, my re-explaining the answers to questions he can’t let go.   But most of the time, when he is contentedly in his routine, we don’t talk. I wonder, what is he thinking and feeling but I don’t ask the way I used to because I sense he no longer wants to think or perhaps feel that hard.  He doesn’t want to analyze or examine himself the way he used to enjoy.  He certainly doesn’t want to analyze politics or world crises. He doesn’t want to know they exist.

So life between us is easier. At least as long as I stay within Ralph’s mental framework, as long as we talk about the weather and I don’t analyze or examine myself too much. It is tempting not to push myself, to relax into waiting room empty headedness (that lack of responsibility I used to luxuriate in until my name was called at the dentist’s office or my flight began boarding in the airport lounge). But then I talk to a friend about a problem she is facing, or I read an article about racism and my brain comes awake.  I must enter back into the complexity of my world to stay mentally alive, while Ralph must stay in the simplicity of his own.

Changing my Alzheimer’s Mantra

If I’ve been in a funk lately (and really, who in the United States, hasn’t), it’s been partly because I’ve had trouble adjusting to what I have been in the habit of calling “the new normal”. I see signs of his cognitive deterioration— not only deeper memory gaps but the shuffle in his walk, his disinterest in showering, his more frequent vacant frown—but what also continues to deteriorate is our caregiver/caregivee spouse relationship.

I am beginning to perceive the stages of my Alzheimer’s caregiving in a new light as I look back at each new normal.

  1. Those months (years?) before the diagnosis when no one in the family wanted to takes his memory lapses seriously. How at first we teased and joked until it stopped being funny. How annoyed I’d get at him for not having paid attention to what I had just said. How sick I got of hearing him tell stories over and over. How angry it made me that every morning he worked up claiming no memory of screaming at me the night before for no good reason, certainly none he remembered.  
  2. My secret relief after his initial diagnosis that I hadn’t been imagining a problem. His heightened anxiety led to heavy smoking his doctors said to ignore for the time being. The diagnosis was all we could talk about. And it was still not something I was about to talk about with anyone but my most intimate friends. The future seemed scary but also unreal. Everything felt extreme, heightened. High anxiety but also high adrenaline rush.
  3. Ralph’s new calm once the meds kicked in and the adrenaline rush that had been carry us subsided. His cognitive changes slowed. The problem was mostly memory. Stories told and retold immediately, questions asked over and over, names forgotten, his difficulty following the plots on TV or at the movies, a withdrawal from conversations that only I noticed—all were issues that I struggled with but they did not interrupt the flow of my daily life. Or his, since he still enjoyed puttering and painting class and walk. We adjusted to the altered dynamic in our marriage. He happily/passively went along with decision I made. I still felt resentment but I learned to manage it. His mood and personality softened. Although small changes occurred I thought of our life as the new normal, an ever so slightly slanted plateau. And since five years passed in this state, with small ups and downs—like we were on the kiddies’ rollercoaster of Alzheimer’s—it was easy to become complacent.
  4. Late last fall, the roller coaster took a sharper angle, not so dramatically that I grabbed any handlebars, but enough that I knew my days of leaving Ralph alone more than a day or two were over. The list I kept for him to keep up with daily chores (take pills, feed dogs) grew to include more items (shower, eat lunch). He stopped watching TV. His smoking intensified. Our conversations were limited in private, but he was still charming around other people who found his lapses odd but almost endearing. He seemed sanguine about our coming move.
  5. Then came his hospitalization. Another adrenaline jolt. From his initial severe disorientation that I first assumed was a total slip into Alzheimer’s to the day he came home weak and dazed through four more weeks of daily treatment I wasn’t sure how much of his disconnect, let alone physical weakness, was the result of his infection. I surprised myself, how patient I could be. Once we moved, he grew daily stronger, his appetite improved (at least he wanted his nuttybuddies again). By then Covid quarantine was in place. His isolation and the general isolation everyone was experiencing converge.  And I was so busy with moving in, helping with my grandson, keeping up with editing clients who suddenly had time on their hands so were writing more, that I didn’t pay as much attention to Ralph as usual except when I asked him to do some small task, like taking out the garbage or moving boxes, that he then messed up to remind me each time that I should have known better.
  6. So, here we are, post adrenaline surges–while I share in the national trauma, the result is closer to malaise than adrenaline. My energy, like Ralph’s, has been drained over time.
  7. I suspect Ralph’s recent spurts of belligerence are partly in reaction to my emotional distance: Without that earlier adrenaline rush, I find it hard to generate genuine emotional interest in Ralph as he is, with so little we can share. Not only does a hard edge sometimes creep into my voice, but worse I can seldom generate more than a lukewarm, dutiful tone. Too often I think, why bother trying to explain what will immediately need to be explained again, why tell a joke?

But I also suspect he is also reacting to his own sense of his situation. The anger reared up when he went briefly off his anxiety medication. Now he’s back on a prescription, but he’s not back to the passive contentment that has served him well. I studied his face as he was eating dinner last night, the crease between his eyebrows, the grim set of his jaw, the vacant stare at his plate. He looked angry but was otherwise calm enough. As usual now, we ate in silence with NPR news in the background. He no longer articulates feelings he’s having, let alone thoughts or ideas and I no longer press him. And I am not finding it as easy to get used to the changes as I used to.

I’ve always told myself, Get used to the new normal. I’m dropping that refrain. It’s really just the for now normal. I I don’t think I’ll get used to, but I will adjust, and then adjust again.

NEW COUCH; OLD PRE-ALZHEIMER’S ANGER

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.

Cognitive Decline: When the process of acquiring information starts to fail

I’d like to blame the thick New Orleans heat for my recent silence but that’s not why my fingers have stopped typing. Nor is it the Virus or even my obsession with the current political battle for America’s soul, although they are troubling realities.  My malaise, while similar to what so many others are suffering these days, is less a reaction to current events and more a reflection of life with Ralph and the drip drip drip accumulation of Alzheimer’s impairment.

A life in which nothing changes. Everything keeps changing. Nothing changes. Everything keeps changing.  

Hard to believe, but Ralph was officially diagnosed over seven years ago, in 2013, and, as my daughter recently pointed out, we had begun noticing lapses when she was a freshman in college three years earlier. So Ralph is already passing the ten-year mark usually held up as a fatal marker on the Alzheimer’s spectrum. And by Alzheimer’s standards he is doing remarkably well in all the ways I’ve described here so many times:

The short and long term memory problems with which he was originally diagnosed continue but are only incrementally worse. Now the repeated three or four discussions center around the tools he wants to get back from the farm (not possible), around whether our older dog Zeus is too thin, around where are savings are invested and if they are safe. He still comes across charming to strangers, not that he’s interacting with strangers or anyone else these days. 

But there is something else going on, and I no longer believe strangers would miss noticing he has impairment. There is, if not a slight vacancy, a mental hesitation in his reactions. A disconnect between what I say to him and what he hears.

Trying to articulate Ralph’s current condition to a friend recently, I found myself stating that he has increasing difficulty “retaining information” which is different than his memory problems. I am not sure what I meant exactly in the moment but in intuitively it felt correct. Maybe retaining is not quite it either; maybe the problem is “intake of information.” What I have noticed is that when I make what seems to me a simple statement, he has sometimes has trouble taking in the meaning. He looks at me as if he can’t hear what I am saying—I have considered whether he has a hearing problem and plan to get him checked when it is viable although he seems to hear quite well. If I repeat myself more slowly I can almost see him struggling to get his head around the meaning. But the problem is that I tend to put too many ideas in a sentence. 

I.e.: 

This morning I said we had a doctor’s appoint with our new neurologist here and that it would be over the phone. 

“I have a new doctor? Who was my old doctor?” (straightforward memory issue).  

“Stephanie at Emory in Atlanta, but we’ve had to find a new doctor since we’ve moved.”

“So are we going to Emory today.” (not only memory but also comprehension confusion)

Or yesterday, I was on the computer he started asking me questions about his farm tools. 

“I can’t really talk now, I’m doing Shipt.”

“What do you mean Shipt?”

“I’m doing a grocery order through Shipt because I realized we’re about to run out of milk.”

He looked at me as if I were speaking a foreign language. Shipt? I should have thought before I spoke because I had thrown three concepts at him, at least two concepts too many. Not only does he not remember why I don’t grocery shop in person these days and becomes anxious when I remind him about Covid (Am I going to get it? is his usual, understandable refrain?) but he has not noticed that our life has been altered by the virus, and he cannot grasp the concept or the steps involved in using a delivery service. 

All I should have said was that I was making a grocery list. He doesn’t notice that the groceries come to the front door or that I go through a cleaning process. All he notices is whether there is milk, bread, peanut butter and beer.

These are tiny examples; the moments of disconnect are always tiny, and often much more subtle. But there are so many of them, each annoying and heartbreaking in equal measure.