Category Archives: Alzheimer’s Spouse Issue

Back Into the Fray: Adjusting To Ralph’s Alzheimer’s world as the Real World Re-0pens

In the first years after Ralph was diagnosed with MCI, I rushed to record all the nuances of his condition and my reactions. Lately not so much. The nuances have become…well repetitive: Ralph’s moments of clarity and confusion, my moments of impatience and remorse, his conversational loops, my problem-solving to work around his lapses. Intellectually I know there has been a slow deterioration but after six years, I don’t notice so much. My life is what it is. Even the last 18 months in a Covid world have made a minimal impact. The routine we inhabit reduces the impact of Ralph’s limitations. 

But a new wrinkle has cropped up:

Now that vaccinations have arrived, so have visitors. I’ve been worrying for months that the new house was too big for us, but it is suddenly the perfect size for the influx of friends and family members who love that’s we’re only a block and a half a block from the streetcar line. Our guest room has been booked for weeks and will be until mid June. I already have “reservations” for the fall.

I suddenly have company for eating, shopping and hanging out, even for watching TV, all the activities in which Ralph is reluctant to participate.

The issue I have to figure out is how to incorporate Ralph. How much to push him to engage, how much to let him be. So far the visitors have been folks who know him know him well and have known him both before and since his diagnosis so Ralph has been comfortable. 

Most recently my oldest friend—we met in preschool—and her husband stayed for five days. While we have seen each other for brief visits (and I have visited them solo quite often), we last spent this much concentrated time together barely a month after Ralph received his initial diagnosis of MCI when we met for a vacation in Savannah.  Back then Ralph was still very much himself in most ways. The only symptom was his tendency to repeat himself, so although our friends knew about the diagnosis they barely noticed any change. That is until he had a panic attack; the husband was alone with Ralph at the time and clearly shaken when Ralph became frantic to find me. His newly prescribed meds, including an anti-anxiety pill, had not yet kicked in and he was petrified and slightly disoriented.

This visit, there were no anxiety attacks. There was a moment at dinner the first night when Ralph did start to fixate on how long the waiter was taking to bring his drink and my anxiety rose because I sensed a loop starting to take shape. But the beer arrived and Ralph settled down before our friends seemed to notice.  Ralph was charming and chatty the rest of the evening. “

He’s better than I expected,” my friend’s husband said with obvious relief, a relief I shared.

The next few days we ate together as a foursome some of the time, and other times Ralph opted to stay in his chair with the dogs at his feet while I took our friends to explore the city. Ralph appeared to enjoy the company although each morning I had to remind him we had guests in the house and who they were. 

At one point as we were driving somewhere as a foursome, women in front, men in back, Ralph joked that the wives would some day be sticking the husbands in facilities once they were “out of it and incontinent.” Everyone laughed as if such a possibility was unimaginable. But I can imagine all too well. 

By the fourth day of being around Ralph, my friend commented on how hard caring for Ralph day in and day out must be. I appreciated her awareness even as I bristled with a certain defensiveness. “Oh it’s not that bad. I’m used to it.”

And I am used to Ralph as he is now, even comfortable with it as long as we’re just the two of us. But as I reconnect with the world outside our front gate, I find myself less and less comfortable. My challenge is now to find a way to give Ralph the comfortable security he needs while keeping myself invigorated and challenged.

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.

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

brain

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.