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.

Alice Travels While Ralph Stays Put

Last weekend I took my first trip out of town since our move to Nola, flying to NYC to visit my son. Just two nights away. In the past two nights away was a no brainer. I used to take one week vacations occasionally and for about a year I came here to Nola once a month to help after infantRalph was born. I’d type up Ralph’s life list so he could check off items as he accomplished them. I’d leave plenty of food for him prepared in the fridge and ready to microwave. A friend or two might drop by for a visit if possible, but I knew he’d be fine on his own as long as he had his list. When I’d call him, he’d be perfectly happy and when I got home, he usually had the kitchen clean—a chore he seldom performed when I was home. In the months before we moved, I’d noticed Ralph was not quite as up to handling things alone so I didn’t go for more than a few days at a time, but Ralph could manage well enough with minimal interference as long as I called to check in.

Now things are different. I’ve had to abandon using our life list several times in our daily life together. Ralph can’t remember to mark it and then then doesn’t know if he’s performed a chore or not. He has not fed the dogs in the morning for over a year now. I’m not sure he can make coffee. He’ll take a shower and put back on the dirty clothes he’s been wearing for days. Almost daily, he asks me if he’s had lunch–sometimes he has and sometimes he hasn’t. If I’m not around he often won’t bother to eat or at most he’ll grab some popcorn or make a peanut butter sandwich, no matter what food I’ve left in the fridge (forget frozen meals or even frozen pizza). So if I am going to be gone for a meal, I now fill a plate and leave it on the counter where he can’t miss it. He no longer drives of course. He certainly won’t pull out his guitar without prodding. And I do go out, or to my office for long stretches; our interactions are basic and limited but throughout the day I pop in and out of his sitting space prodding him to perform small chores like putting his cup in the sink or brushing the dog or practicing on his guitar. He needs interaction, even a little marital bickering. The longer he sits alone, the more his mind drifts into a vacuum.

Bottom line, he can’t be left alone even for twenty four hours.

So I arranged with one of our good friends, I’ll call Hero here, to come stay with Ralph—thank goodness for frequent flier miles—while I was gone. Here is one of the few men in Ralph’s life who has tried to keep up with Ralph and I told Ralph Hero was coming because he wanted to spend some guy time with him. 

Who is coming again?

Hero.

Why?

To see you. You’ll have a guys weekend while I’m away.

Where are you going

To NY

Did you say Hero was coming?

Yes.

Did you ask him to come. 

No  (a lie but I wasn’t ready to tell him) He’s coming to see you. And it is convenient since I’m going away.

Where are you going.

To NY. 

Who did you say is coming again

We carried on variations of this conversation numerous times a day in the week leading up to Hero’s arrival. One one hand, I wondered if I should have put off bringing up the trip as long as possible; one the other I wanted to soften Ralph up to the idea. And I think that actually worked.

Hero arrived the night before I left. We all went out to dinner, and made it into a festive reunion. Ralph wasn’t thrilled to go, but he had a good time.

In the morning he didn’t remember that Hero was here or that I was leaving but that was okay.

Hero drove my car to take Ralph to his music lesson. They went out to dinner with my daughter and her family (she had offered to stay with Ralph but Hero really did want to visit), they went to the fancy grocery store and bought a prepared shrimp dish for another meal—I can never get Ralph to shop with me, but I admit I don’t try that hard because he makes shopping a bit more difficult and I’m in a hurry—and on Sunday morning they went to the WWII museum.

We have talked about going there for years, but Ralph has always backed out at the last minute even though he is one of those baby boomer men obsessed with WWII. Again I probably never pushed as hard as I could. But Hero wanted to go and made the extra effort to get Ralph there.

They stayed for FIVE HOURS.

And that evening they came together in the car to get me.

Ralph had a busier weekend than he’s had since Christmas of 2019. (I had a great weekend too, by the way.) 

And when he told me that Hero was “a great caregiver,” I realized that Ralph is ready to accept the idea of at least a temporary caregiver, that he recognizes he needs help. As willing as Hero is to return, I can’t depend on him or friends or even family for the long run. Today I mentioned to Ralph that the next time I go away, a friend who is a nurse here will be checking in on him two or three times a day and may stay over night with her puppy. I told him that she is young and attractive and that I’m having her over to meet him soon.

Are you going to pay her? he asked.

Yes I admitted after a brief wavering pause.

Good.

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.

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.

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

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

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

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

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

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

Or it did.

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

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

“Is that important.” 

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

“Who was he running against?”

“Trump.” 

“Oh yeah. Who’s winning.”

“We don’t know yet.”

“Is this the primary?”

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

“I wasn’t really paying attention.” 

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

“Remind me who’se running.”

“Biden and Trump.”

“Oh yeah. I don’t remember voting.”

“We mailed in.”

“Oh yeah.” And he’s back to sleep.

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

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

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

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

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

Ralph’s New Support System, And Mine

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

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

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

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

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

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

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

Waiting as a Way of Life

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

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

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

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

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

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