Category Archives: Alzheimer caregiving

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.

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.

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.

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.