All posts by MCI Alice

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.

Marking Ralph’s Alzheimer’s Six Years In

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Ralph usually has his annual cognitive check-up in July, but not this year. Because of Covid we have yet even to meet with our new neurologist.  After several rescheduling, our telemed introductory appointment is now set for the end of August and obviously won’t include intensive testing (at least I hope not—Ralph testing by phone would be a nightmare; zoom is going to be challenge enough).

Gauging where Ralph sits on the continuum these days is not easy. Between his hospital stay and slow recuperation, the long preparation for our relocation, the actual move one day before Louisiana went into quarantine, our new home/life under Covid, and Ralph’s anxiety in adjusting, not to mention my own, I have lost perspective. 

Last year’s check-up was uneventful, so uneventful that I wrote no more than a sentence about it in my journal. I had been concerned that Ralph seemed a little fuzzier in daily interactions but he scored pretty close to what he’d scored the previous years. We were assured he was maintaining a steady but unusually slow progression.

By then I was already house-hunting, and our practitioners felt we were moving at exactly the right time, with Ralph was still able to adapt and adjust to a new place.  I remember discussing that I should teach him the route to the nearest stores and coffee shop, then make sure he carried good, explanatory ID and introduce him to storekeepers and others in the neighborhood so they’d know his situation in case he got lost on a cigarette run. 

Fat chance. In the five months since we moved here, Ralph has taken one brief walk with me three blocks around the corner and back. Cigarette runs are unnecessary because he has forgotten smoking all together, thank goodness, and he has absolutely zero interest in leaving our porch. He has been to dinner at my daughter’s house once, seen his internist once and been to a hospital lab for blood tests once. Otherwise he has been in the house. We did spend a week away with my daughter’s family at a house with a pool to escape the heat, making no stops on the way and never leaving the house once we arrived saw how few others were wearing masks; Ralph enjoyed watching the rest of us splash around though he didn’t dip a toe in the pool himself, preferring to follow his usual routine of wake, eat, nap, eat, nap eat, bed.

But does his increased inactivity mean anything under the circumstances. He seems to function fairly well as long as he sticks to his rote routine, which is not that different than it used to be. The big change is swapping in BoyRalph visits for cigarettes, a clearly positive change. 

The less positive changes are all in the gray, hard to decipher margins.

He has never returned to a life list. He had been getting sloppy about following it and then he was so out of it during his recuperation from the blood infection, and so helpless.  Now I don’t trust him to mark thinks off. Or remember where the list is Or maybe the truth is that I find it easier to give him his pills myself, to tell him to shower, to track his meals that I would to nag him about the list plus the actual behaviors it tracks. He can still make a sandwich for himself at lunch but often asks me moments later if he’s eaten yet. I’ve also taken over feeding his dogs, a minor chore he used to like but never thinks about now. I worry that I’m coddling him, but then I try to stretch his world by asking him to do a minor chore like takeout the recycling and he gets slightly but noticeably befuddled.

He hasn’t paid attention to the world for a while, but now he seems to have lost his visual acuity a certain ability to react and judge. I’ve been filling bookcases the last few days and he doesn’t notice the difference between objects arranged on a shelf or placed there helter-skelter to get out of the way. In some ways those shelves are like his thought process, a random organization of discrete thoughts. He doesn’t always button his shirt correctly–true, neither do I on occasion, but then I am mortified; he could care less. 

But I need to take into account that everyone’s memory is worse these days. Everyone is a little depressed and a little disconnected.  A little spacier than usual. A little sloppier. Where does Covid Brain stop and Dementia begin? 

Thinking about that way, I tell myself that nothing I’m describing here about Ralph sounds that much worse than a year ago. But it is worse. I just can’t articulate or even pinpoint the deeper shift–a letting go, a deterioration. Not only of remembering but in comprehending. Conversation is gone which is sad. More depressing, so is my trust in his reasoning, in his ability to care for himself, to think clearly. Less than a year ago, I was able to leave him with his life list for days at a time. Now I am afraid to leave him alone in the house for more than an hour or two.  I’m afraid that is a marker more important than any test. 

Caregiving Times Two–Sometimes More is Better

 

I’ve been away from the blogosphere lately. No crisis, thank goodness. It’s just that my caregiving has taken a not unexpected but time-consuming turn.

For the ten years my mother resided with us, I  lived in the middle of that sandwich cookie analogy about middle-agers caught between aging parents and growing children. Now I find myself in a somewhat different care-sandwich between  74-year-old spouse on the Alzheimer’s spectrum and an intellectually curious about everything  three-year-old grandson. Ralph and BabyRalph—oops BoyRalph or he’ll be affronted—are the two sides my life and increasingly the filling too.

I am not complaining, believe me. I’m just amazed that someone who as a girl never played with baby dolls or wanted to be a nurse let alone a mother, has ended up filling my hours competently nurturing.

One on hand, Ralph has been on a more needy plateau since his illness. I am personally handing him his daily pills and doing chores like dog feeding that he used to enjoy. I am learning to lower expectations of what I ask of him in general. On the other hand, the time and energy I expected to expend on grandmothering after our move to Nola has expanded because of Covid and will probably expand further when BoyRalph’s baby brother arrives in a few months. For now I am watching BoyRalph at least five mornings a week, through lunch until his nap. (When he wakes up, his teenage sister takes over until a parent is free.)

We spend most of our time at my house with Ralph and the dogs. At first both Ralph was a little standoffish around his grandson, or maybe shy, but bonding has occurred over their shared love of peanut butter sandwiches, nutty buddies and the dogs.

Although I can’t leave one with the other because I don’t trust either’s judgment, caring for BoyRalph has actually made caring for big Ralph much easier.

Now BoyRalph gives Ralph’s day structure, the way cigarettes used to; only this structure is positive. I leave our house every morning by 7:30 after bringing Ralph his coffee and pills.  When I return an hour or so later with BoyRalph, Ralph is almost always up and eagerly waiting. And although he wanders back to his room at times, he is engaged. He’ll even join us for Candyland.

The Ralphs’ relationship is symbiotic.  Ralph is the grown up, but he’s also childlike in a way that draws BoyRalph out, and BoyRalph has energized Ralph. Even when they argue, which they do, there are no hard feelings. BoyRalph is quick about wanting to make up while Ralph’s memory deletes BoyRalph’s misbehaviors anyway . Moments after BoyRalph has stormed off yelling “You’re not my best friend anymore” or spent time in time out for being too rough with the dog, Ralph will turn to me to say, “He’s such a good boy.”

Yesterday BoyRalph actually got Ralph to do participate in an activity that I feared he’d discarded. The two of them stood, or sat, at separate easels in Ralph’s new “office” in the garage working and humming for about an hour. And both finished works of art (before BoyRalph got mad that he couldn’t squeeze out all the red paint and hid behind the easel).IMG_1193

I’ve felt my share of resentment over the last few years about how Ralph’s cognitive impairment has affected my life. Now keeping a three-year-old drains my physical energy as well as limiting my time for everything else. But grandmothering BoyRalph has taken the edge off some of the loneliness I feel as Ralph’s caregiver spouse. No, it’s more than that.  As I finally admitted to myself the other day, the joy I receive from my relationship with BoyRalph is what I want right now. And it’s a joy Ralph shares. The first real sharing we’ve experienced in a long while.

TRUST YOUR GUT

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In the last twenty-four hours I have heard from two friends each in crisis with a loved one and uncertain how to proceed. Both were going through that awful self-questioning I’ve put myself through to many times.

“Is something bad happening?”

“Am I overreacting? Is it just the dementia?”

“Maybe I should wait and see?”

“Should I call an ambulance?”

“Should I call the doctor or not?”

“Should I tell (whoever has just called to chat) what’s going on?”

“Is it my imagination?”

“What is going on?

The answer is simple and impossibly hard:

Go with your gut. Trust your instinct. Don’t worry if you’re wrong.

I have asked each of these questions, at least once all of them together.  I have worried that I was over- or under- reacting and then afterwards have berated myself for not acting sooner or for acting too quickly.

But in each case I ultimately trusted my instinct. Sometimes I trusted it more than other times and sometimes my instinct was more right than other times, but it was never entirely wrong.

 In hindsight, I can say definitely that there is no definite right or wrong.

This is the advice I want to imprint in my brain, and yours: When facing one of these horrible moments we all will face, TRUST my/your INSTINCT and DO NOT BLAME my/yourself whatever the outcome.

“Does It Get Easier or Harder?”

Does it get easier or harder? asked my friend Jane, who writes the daily blog MemoryforTwo. Her husband is where Ralph used to be a few months, or is it years, ago.

Not having a memory is not so bad, Ralph said to me last night as he watched me wash the dinner dishes. (He doesn’t remember that a few years before his Alzheimer’s diagnosis, perhaps presciently, Ralph half-jokingly founded the Lower Expectations Society after therapy helped him realize his demanding nature worked against happiness. LES became his battle cry every time something went wrong.)

In a way it has become easier, in that I have accepted the reality. I answered Jane. But life keeps narrowing.

I remember when I was going through what Jane is now. The daily shock to my system with each change in Ralph I had to face and learn to accommodate. Who is this man? I’d ask myself.  How do I explain him to others? How do we go forward? It felt like being knocked down by one wave after another breaking against me. I’d stand up back up only to be knocked down again. Now the water is deeper; I am at the spot in the water where I can still stand but where the waves are not cresting. 

 Ralph is not typical. His diagnosis was six years ago. By now most people on the Alzheimer’s spectrum have moved further along from MCI deep into Alzheimer’s. Ralph’s slide has been so gradual that I feel boring when I describe our life now. The vise we’re in is tightening but slowly enough that we barely notice.

So acclimating has been dangerously easy. Ralph, originally so anxious and frightened by his memory loss, has been content for a long while. And as more and more memory holes appear, he becomes only more passive. What do I need to remember when I have you? he also said last night. I had a flash of anger; after all I was washing the dishes while he sat watching, just as he had sat watching me prepare dinner.  

But the truth is more complicated. As his short term memory worsens, I expect less from him. Our life together does narrow. But I am minding that less. In some ways Ralph is my excuse to relax into myself a little, to let go of some of the expectations that weigh me down with perpetual guilt–like why don’t I follow a stricter exercise routine or finish another novel. 

The truth is that I am getting more selfish daily. And I don’t mean that in a bad way.  I am typing from the turquoise chaise lounge in my new home office filled with books and pictures and a view of treetops and sky. I makes plans and decisions—how to decorate this new house, where to go with the family bubble for a covid-safe July 4 outing—according to my preferences. I cook dinners I want, and sometimes (this is a bit hard to admit) I keep a best bit for myself because I know Ralph is basically indifferent as long as he gets his nutty buddy for dessert. Of course he is always a major part of every equation: his safety, his personal comfort, his dogs’ comfort.  

I take what selfish joy I can for myself and give what comfort I can to Ralph. But I don’t bring up to him the truth I can’t get away from, a truth he has forgotten and I see no reason to remind him of–that his condition will get worse. And when it does, I don’t know how I’ll feel.

 

 

How Is Ralph Adjusting?

 

dogs reading

How is Ralph adjusting? That’s the first question I’ve been asked in most of my conversations over the last six weeks (i.e., since my last post; God knows where the days have gone). People, particularly that growing list of old, almost lost friends I’m back in contact with, are understandably concerned; after all Ralph has had to adapt both to a strange new house in a strange city and to the new strange reality of a world ruled by the corona virus.

The answer is simple. He is adjusting just fine.

In fact, he has been living pretty much the same life in our New Orleans house that he lived for the last six years on the farm: rising late, reading and hanging out with his dogs all day, drinking his late afternoon beers, dinner followed by a Nestlé’s Drumstick for dessert, asleep by eight at the latest.

In some ways the adjustment strikes me as almost too easy. Limitations suit Ralph all too well and so do the lowered expectations that have crept in. Since his hospital stay he never went back to following a life list. Instead, I do the remembering: I give him his pills in the morning and tell him to shower (checking the towel to make sure if I’m not around) and eat breakfast. He eats a peanut butter sandwich for lunch, actually sometimes for more than one lunch since he’s not always sure he’s eaten when I ask and better to eat twice than not at all. He spends pretty much the rest of the day “reading” in bed or sitting on the porch with his dogs. He no longer even thinks of smoking or driving. Or listening to the radio although there is one by his bed. He still drinks beer. But since he can’t drive and doesn’t know where all the closets are in this house, I control his intake in a way I couldn’t before. I put three in the fridge and when he asks for more, I explain I can’t because of the virus. In fact, I am thinking of switching to non-alcoholic beer to see if he notices. He eats whatever I cook for dinner while we listen to NPR or his preference Pandora; he no longer keeps up a pretence of an interest in the news and gave up on following television ages ago.

His main focus now, even more than on the farm, is on his dogs. They never leave his side and are all the companionship he seems to need. Although he and I have only the most basic conversations, I can hear him chatting with the dogs on and off all day. The dogs may not have the space they used to, but they seem satisfied with their yard and the ease of access in and out from our bedroom although happier with their constant attention and….

OOOPS. AS I WAS WRITING THE LAST LINE I HEARD A COMMOTION AT OUR FRONT DOOR. Ralph was calling the dogs frantically. He had forgotten my warning a few minutes ago not to use the door because our gate was open to let the men making a repair outside. Now the dogs were loose, about to disappear into the streets of New Orleans. I ran downstairs. I yelled unpleasantly at Ralph, What were you thinking?! as I flew past him to grab Lola the younger dog before she ran away.  In fact she was happily peeing under a tree just outside the gate. The older dog was merely confused, not unlike Ralph, wandering between house and sidewalk.

I admit that once all three were safely inside, I snipped at Ralph again when I realized his plan had been to sit on the porch with the dogs and a beer—it was not yet 1:30 as I barked at him. Of course, in the excitement he had already forgotten his unopened beer can on the porch anyway.  I took a breath and re-found my patient voice, then suggested he look at his cell phone for the time.

I didn’t know it was so early, he said amiably and went back to his room (officially “ours” but practically his and the dogs until the minor but stalled renovation can be completed on his “studio,” attached to the garage but entered through the dog yard and only steps away from our bedroom door). Peace is restored. He has also already forgotten my lost temper—no need for apology or forgiveness these days.

Whatever I was going to  describe ten minutes ago is forgotten as well. All I am thinking about now is how we used to argue about everything, how a small mistake or misunderstanding could unleash all kinds of larger angers. How ugly the temper flares could be, how cold the silences. I can’t pretend I miss the overt tensions that mushroomed so quickly between Ralph and me for years and years of our marriage. But I am not sure what to think about our lopsided relationship now. So much responsibility on my side, so much contentment on his. So much resentment on my side, so much loving dependence on his. I can’t say I envy him, but sometimes I do.

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.

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.