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A Healing Vacation for Caregiver, and Maybe Caregivee

 

The last few weeks definitely created a change of pace in our lives. After I came home from my hip replacement surgery, I was basically unable to do much of anything for several days except walk, with a walker, to the bathroom and the kitchen table. My daughter took over for the next week—she organized and cooked meals, kept Ralph on his schedule and trained him to sleep in an upstairs bedroom, made me rest and then rest some more.

When my daughter went back to work, my son came for the next eight days. He maintained a similar routine although by then I was moving a lot more, in bed less and transitioning from walker to cane. He set up an office for me downstairs and solved myriad computer issues I’d been having. 

Both son and my daughter prepared elaborate, surprisingly delicious meals that took into account my new low-sodium blood pressure diet. They spent lots more time talking with me than I usually get. They brought me hot tea before I asked. Meanwhile, the post-surgery pain was much less than I anticipated, requiring only Tylenol and muscle relaxer. I listened to books on Audible, binge watched the television my son had set up in the downstairs bedroom and did my very easy physical therapy exercises. 

In other words I not only got a new hip but enjoyed a rather luxurious two week stay-vacation. 

As for Ralph,  he got to sleep later than I usually allow, didn’t have to clear the dishes after dinner, and—not that he talked to them very much—definitely enjoyed having our son and daughter hanging around. In fact, he still has not quite ire-adjust to the fact that my son isn’t here, asking several times daily, “Where is J. Has he gone back to New York?” But any change in routine is  difficult for Ralph, even small tweaks in what time he eats dinner, so he also became slightly discombobulated, slightly grumpy and more than slightly anxious.

For the last week we have been back on our own. I still use a cane outside but am walking cane-free around the house. When asked, Ralph loads the washing machine and dryer for me because I am still not quite able. And he carries in groceries that I cannot lift. But otherwise I don’t ask for much more because, frankly, it is easier to do most tasks myself even at half energy. Since stairs are something I do only with care, I still make him sleep upstairs but still let him sleep later than I used to. He has made his own adjustment. He asks me daily how my leg is and wants to chat more. Or maybe I am just available more since I can’t escape upstairs to my office like I used. (He has interrupted me repeatedly as I’ve been typing just now.). He’s actually agreed to walk around the block with me once or twice; we move at about the same pace for now and have about the same stamina, although I hope for my sake that will change.

What I have realized over these weeks is that I am lucky. I have a new hip that means I will be able to resume a more active life that includes walking, shopping, visiting museums, etc. I have genuinely supportive children. And to speak in bare practical terms, l can pay someone weekly to do a light clean and change of bed linens (no small thing since this is one activity I cannot imagine doing at the moment and know Ralph can’t). 

Most important, I have been reminded that all in all  Ralph is still holding steady, still able to function within his narrow parameters, as defined by our yard and his limited daily routine. His Alzheimer’s related limitations can be annoying, but they are not yet seriously debilitating. I want to make use of this time, once my leg is healed and my energy is back to normal, because it may or may not last.

ps. Shortly after posting this, I misplaced my cane and guess who found it–Ralph!

Alzheimer’s Weather Has Arrived in Time for Xmas

“Do you have the AC on?”

“No it’s 72 degrees on the thermostat”

“It’s freezing in here.”

“You might try putting on a sweater.”

“Why is it so cold.”

“It’s only 65 degree outside.”

“That’s cold.”

“It’s December. Christmas is in four days.”  

“It is?” (Our house has two Christmas trees and an advent calendar the grandkids come and mark daily)

“It was not this cold last year.”

“Yes, you complained last year too.”

“No I didn’t.”

This conversation has actually occurred in some similar form for years, here in New Orleans but also before at the farm. One of Ralph’s earliest symptoms of cognitive loss was his weakening sense of time and another was his sensitivity to the weather. In the summer he complains of the heat unendingly—while often wearing a flannel shirt. And in the winter, he cannot get warm—while ignoring the sweaters in his closet.

I have not always been as patient as I could be during these repeated conversations, but I finally have made an adjustment in our lives that might help. After resisting covering our beautiful old French windows for selfish aesthetic reasons, I have ordered solar shades for the room where Ralph most often sits. And meanwhile it will be warming up here in time for Christmas, although the temperature might not stop Ralph’s discomfort or this conversation.

As for the holiday itself, I am not sure how it will go. Now that I’ve adjusted to Ralph’s move into “moderate” Alzheimer’s, I recognize that that this may be a period in our lives that I will be nostalgic about someday because while Ralph’s cognition may be diminished, he is also undemanding; as long as I don’t set expectations too high, our day-to-day life is not that demanding —as long as Ralph’s routine is not disturbed and he can stay within its narrow confines. But Christmas is going to disturb his routine big time, 

My son and son-in-law are arriving tomorrow with their negative tests in hand. So are my sister and her husband. Everyone is coming, despite the new covid risks, largely to see Ralph, not sure where Alzheimer’s will have taken us by next Christmas. This year will be in untraveled territory enough. As recently as two years ago, our last full scale celebration, Ralph was tstill he center of our big, raucous Christmases, while I cooked and cleaned in the background. 

Now all he wants is to be left alone and he can’t remember that it is December even as I ask him to water the Christmas tree. My guess is that even when the family gathers, he will prefer not to participate. 

And that will be okay too. 

MUSIC AND MEMORY LOSS (AND STRENGTHENING?)

I have finally found an organized activity for Ralph that he not only will attend but actually seems to enjoy. The Ochsner brain clinic has started a research project on the value of music therapy for Alzheimer’s patients, and when a spot was offered, I jumped on it. 

Before our first session, Ralph was clearly nervous and bit leary, as he is of anything medical. I kept assuring him he would not be having cognitive tests or any shots, and he seemed to believe me, but he was more doubtful when I said he would have fun. I wasn’t sure myself.

It was awkward at first. We met Meredith in a typical, very small medical examination room that did not seem conducive to a creative musical experience. Meredith was young and blond, non-descript behind her mask, as we were. We made the usual small talk, and as usual, Ralph kept turning to me to answer questions for him while I sat slightly apart trying to keep quiet and make him answer for himself. Almost grudgingly he told Meredith he played guitar a little and that he was partial to Bob Dylan. I might have (definitely) interjected there, saying he’d played seriously as a kid and had interviewed major country and folk musicians as a journalist in his youth. She nodded mildly and I thought to myself She’s too young and tentative for this to work.

Then she pulled out her guitar and began to sing. CRAZY, the Patsy Cline classic written by Willie Nelson. It may seem an odd choice, given Meredith was singing to a man with what is labeled dementia, but who cares. It turned out that even masked Meredith, who got a degree at NYU, can really belt out a song. And how crazy was it, in a good way, when Ralph almost immediately began to sing along unprompted. He knew almost all the words. At the end she clapped. And so did he. 

She asked if he’d like to play her guitar. Hesitantly he started Blowing in the Wind, then gathered some steam and it was her turn to sing along. She pulled out more songs. She played the guitar but gave him drums to improvise with. They sang and sang. Of course he didn’t remember all the words, but who would. Meredith was genuinely enjoying Ralph. When she introduced some rhythm and memory exercises, I held my breath waiting for him to resist, but he went along like a trouper. And coincidently days later I heard a science report the the research shows statistical evidence that playing music helps cognitive function, particularly for those with Mild Cognitive Impairment or in the early stages of Alzheimer’s. Ralph’s diagnosis has held in early Alzheimer’s so he is the perfect candidate for this “therapy.”

At Meredith’s request, Ralph now takes his guitar him. As I push him to get ready each Friday morning,  I do have to remind him how much he enjoys the sessions and he looks at me grumbling I do? But once he’s there, he’s fine. Usually now I sit in the waiting room because I think letting him have this magical hour alone is probably better, but I did sit in again the other week just for fun because listening to the two of them harmonizing with the voices and instruments as Meredith guides him along is  like a mini concert.

Still, as lovely as this new experience has been, it is also bittersweet. Rick’s relationship to music has changed. Only 19 months ago when Ralph and his oldest son pulled out their guitars at Christmas, Ralph could play one song after another as if one song reminded him of another, some well known, some obscure. It was as if his cognitive impairment dropped away.  That is not exactly the case now. When I ask him to play at home, joking–Serenade me while I cook–he usually says he’s too tired. And if I push and he gets out the guitar, he clings to Blowing in the Wind. It is the one song he’s comfortable with now. Without Meredith sitting beside him, he struggles to find the chords and words. Meredith is giving him a playbook and I hope that will help because at the moment he doesn’t seem willing to try other songs on his own. The diminishment is almost more apparent. 

Almost, but Ralph’s joy each Friday hasn’t. 

Which raises a reality I think about a lot—that Ralph with his cognitive impairment seems happier than he ever was without it, and than I am living with him a lot of the time.

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

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

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

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

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

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

Or it did.

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

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

“Is that important.” 

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

“Who was he running against?”

“Trump.” 

“Oh yeah. Who’s winning.”

“We don’t know yet.”

“Is this the primary?”

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

“I wasn’t really paying attention.” 

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

“Remind me who’se running.”

“Biden and Trump.”

“Oh yeah. I don’t remember voting.”

“We mailed in.”

“Oh yeah.” And he’s back to sleep.

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

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

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

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

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

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.

How Is Ralph Adjusting?

 

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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.

NO MORE NORMAL

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Since Ralph was released from the hospital for a bacterial infection, Ralph and I have been living a miniature version of the chaos the larger world is experiencing.  Without going into details, he has been more or less bedridden, getting up for the bathroom, occasional meals (though mostly eating in bed), follow up doctor visits and his daily infusions.

Meanwhile we sold our farm and I turned 70. Both events should have been moments to stop and reflect, but reflection will have to come later. I was too busy packing, working, and caring for Ralph. As for Ralph, he witnessed the sale without emotion—he had to be at the closing to sign off—and didn’t really notice my birthday at all.

So for two and half weeks we’ve muddled along living in a bare house we no longer own—a friend stayed with Rick and got him to his infusion while I did a fast drive down and back for the scheduled furniture move. The plan was that Ralph would finish his antibiotics and get his final doctor check out Monday and we would drive to Nola on Thursday (Tomorrow as I write this).

Meanwhile the corona virus began to spread. But we have been more or less isolated anyway so not paying a lot of attention. There was talk among my friends whether to go to lunch for my birthday/farewell gathering on Saturday. Four of us went for dumplings and fist bumped goodbye. We all were still joking then.

But by Monday no one I the country was joking. But while most people were concentrating on the virus, Ralph and I were focused more narrowly on his back. Saturday, the morning of my birthday Ralph had begun complaining of a backache He doesn’t remember doing anything to himself and I witnessed nothing unusual. But by Sunday morning he was in serious pain that only got worse.

On Monday at our appointment with Dr. P. we learned the blood work from Sunday showed a small rise in his white blood count we hoped had to do with Ralph back pain. Dr. P suspected an injury rib and sent us for an x-ray. He also sent us for more blood work this morning so he’d know the results before we leave tomorrow.  But he wasn’t worried.

So when everyone was hunkering down to self-isolate we were zipping very slowly from one medical office to another. At home Ralph slept, of course, as I packed up the leftovers that couldn’t be moved until the last minute.

Well there is no broken rib, but the x-ray showed inflammation in Ralph lung. (And yet, the nodules in his lungs three weeks ago are still present.) Not a lot of inflamaton and only in a small corner but too much to discount completely. The blood works shows his white blood count is back to normal but some other measure, I didn’t understand what, is higher than it should be. Although he has no symptoms, Dr. P. mentioned the possibility that Ralph might have pneumonia. His voice was almost too calm. I responded with equal, fake calm. Pneumonia is not a good thing to have ever, but right now if you’re a 73-year-old man with early onset Alzheimer’s, it is a particularly not good thing to have.

We are still leaving in the morning. After talking not only to Dr. P. but also to our doctor/friend Andy and our nurse practitioner daughter in Nola, the consensus is to go. Ralph has medical appointments scheduled there. We can self-quarantine one place as easily as another. And we can’t keep camping out in someone else’s house.

I am by turns crazed and sanguine. Since no one is seeing anyone, leaving friends feels almost anti-climatic. As if I am not leaving the world I’ve inhabited since I was 21 years old. Ralph, on the other hand, is blasé. When his back hurts it hurts, when it doesn’t he can’t remember it ever did. His cognitive impairment, has not bounced back to its old plateau. His life list is out the window. He can’t remember if he’s eaten, if it’s morning or afternoon.  If I say something about a virus, he looks at me struggling, and then his face lights up. “Oh, you mean about “Sars. Is that a problem again.”

Our little personal drama feels very important and scary to me of course, but we are really quite lucky. Actually all of us are. We are in our own homes (or will be) with decent food (and toilet paper) available. We have a supply of water, working utilities. We have means to communicate and be entertained.

Ok, I am not this cheerful, but it’s worth a shot.

OUT OF THE HOSPITAL AND BACK INTO ALZHEIMER’S QUESTIONS

 

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The good news:

Ralph got out of the hospital on Friday afternoon seven days after he was admitted, once the infectious disease lab was able to pinpoint the bacteria and determine which antibiotic he needed. By the time he left his white blood count was back to normal and he had a sense of humor back. The nurses loved him.

 

The bad news:

The bacterium was rare and hard to pinpoint because it came from the mouth of dogs. Since the onset of his MCI, Ralph has had an obsessive need to scratch at the dry skin on his hands, to the point of breaking the skin, so it is likely the infection came from a lick for one of his two best friends.

 

Other bad news:

Ralph has to receive intravenous antibiotics daily until March 16 and because I know my limitations as a nurse, I am not attempting to give them at home. Instead, I will be driving him to get them at the infusion center at the hospital every morning. Our plans to move to Nola on March 5 are obviously delayed.

 

Other good news:

  1. 1. We get to wake up to this view again; since Ralph can’t climb upstairs at this point, I moved the guestroom bed down.
  2. 2. I have learned to ask for help and have received it from so many people. Friends will come stay with Ralph for two nights so I can go to Nola just long enough to meet the movers and set up furniture as originally scheduled. An other friend will bring the dogs down in his truck—actually what was until today Rick’s truck because I have arranged to sell it to him, one large chore off my list!

 

Both good and bad news:

  1. 1. Ralph is happy about the sale and shows no happiness about no longer driving; I am torn between being glad Ralph is not putting up an unpleasant fight and sad that one more part of his identity has been chipped away.
  2. 2. Ralph has stopped smoking cold turkey because a cat scan showed tiny nodules on his lungs that could either be a result of the infection or pre-cancerous. He will have a follow up CAT scan around the 16th to see if the nodules have shrunk. Meanwhile the doctors told Ralph no smoking and he agreed. Of course he doesn’t exactly remember but he continues to agree every time I remind him. And he is not showing any major symptoms of withdrawal.
  3. He also has not asked for a beer, which is good, but then again he has very little appetite in general, which is not so good.

 

Beyond Good or Bad

Ralph’s bout with physical infection has given me a lot to think about as I try to evaluate how much being on the Alzheimer’s spectrum might have affected his physical health and how this physical crisis might affect the progression of his Alzheimer’s.

According to medical people, being on the Alzheimer’s spectrum probably did make him more vulnerable to illness and/or caused his reaction to be more extreme. It certainly made it harder for me to detect something was seriously wrong with Ralph. I am pretty sure the signs of the infection would have been obvious sooner in someone without Alzheimer’s; after all what might seem abnormal in others—sleeping too much, inattentiveness to one’s physical state, lack of appetite, mental withdrawal—seemed almost normal if exaggerated behavior in Ralph. And he never articulated that he was feeling sick.  I don’t feel guilty that I didn’t catch on sooner; if anything I feel lucky I caught on when I did.

What concerns me more now is the ambiguity of his condition now. I have talked about adjusting to “the new normal” as Ralph and our relationship change. Now Ralph is very changed. The no smoking, no beer, no driving are in their way shocking changes. I have professed to wish for them, yet now I see them as scary sign posts if permanent. IF–I suspect Ralph’s taste for beer will return and a fight over smoking may loom in the future.

What I don’t know is whether this physical crisis will have a permanent effect on Ralph physically and mentally. That he is incredibly weak at the moment is to be expected while recovering from a major bacterial infection and while taking strong antibiotics. But I don’t trust he will bounce back. He cannot hold onto the memory of having been sick, has already forgotten the hospital, cannot remember he has an IV portal in his arm.

(In fact as I was writing this he got out of bed and wandered in to where I am typing.

What are you doing I asked.

I need to go to the store for cigarettes.

Remember, you’ve stopped.

Why?

Because of the CAT scan. They found nodules and said you can’t smoke any more.

Oh, I forgot.

And with that he wandered back to bed).

I don’t know if being weakened physically will cause him to lose ground cognitively.

I do know that our relationship has changed, at least for now. I cannot make even the small demands I did ten days ago. I bring him his pills. I feed the dogs and care for them. I tempt him with snacks every few house because he will skip eating unless I remind him. I stand at the shower to make sure he keeps his arm dry. He has no interest in the world or the people in his life. He wants me nearby as his guide—each time the nurse asked him what year it was, he looked at me to give him the answer—but we have almost no conversation. And while I might leave him to go to the store or run a few errands, I cannot imagine leaving him overnight with a life list to follow. The life list is on hiatus.

I assume some of his strength will return. But this episode has exposed his fragility and vulnerability. Also how far he has drifted from the Ralph he used to be. Whether the decline is in the last week, whether it’s permanent, or whether I just didn’t notice before remains to be seen…