All posts by MCI Alice

Living Between the Cracks as a Caregiver

Lola has not adjusted to the switch from daylight savings time so last week I started a new regiment. I fed the dog at 5:30 am, was at the pool at by 6:20 and home by 7:40 to bring Ralph his coffee and pills. 

I do not think of myself as either disciplined or a willing early riser, but midweek as I was kicking slowly down the length of the pool on my back, I realized that this schedule was actually perfect and also a metaphor for how I was learning to handle my life in my newest normal by finding personal time between the cracks, even if the crack is at dawn or ten pm.  

Then this Wednesday a child in my four-yea-old grandson’s pre-school classroom tested positive for Covid. Everyone in the class was (understandably) required to quarantine. Because the kids are so young, the school is not letting kids return for two weeks although once a child tests negative at five and seven days he can be around others. Since Four-year-old Ralphie’s one-year-old brother is not vaccinated, the family has divied up. Baby, Papa and teenage sister are staying at their house while Ralphie and his mother are with me. Both parents are working full time. So I have been spending my days masked, like Ralphie, playing hours and hours of his version of The Christmas Elf and of Christmas Day (A lot of the same small household items end up under the tree and in stockings and I get to express great surprise, O a coaster!)

Yes, three days in and I am already exhausted

Ralph, on the other hand, is very happy having Ralphie around the little he sees him. He must be masked when in the same room so has been spending a lot of time with Lola in his room.Since I am basically not leaving the house—no swimming and no socializing over coffee, that’s for sure, also very little time for my editing and writing work— he also has me at his beck and call, albeit my attention is divided.

The cracks in my metaphor have temporarily all been spackled. And yet as I look forward to the time ahead when our schedule re-normalizes into whatever normal may be in two weeks or two months, I have a sense of how to approach my time—I’ll grab what I need when I can, feel not an ounce of guilt for grabbing but also accept the limits. 

Thanksgiving and an Anniversary

Yesterday was Thanksgiving. It was also Ralph and my 44th wedding anniversary. And although the flowers I received—from myself—are lovely (and to brag a little more, I made the vase they’re in during my glassblowing days), I did not expect much celebration.

The day before yesterday I’d begun to write a post  with the line, “One of those I’m at my wits end moments”, and assumed my mood would continue. My anxiety has been increasing for weeks, in part because of Ralph’s diagnosis, in part because I have taken on more work deadlines than I should have, and because my ongoing sciatica has drained my patience just as Ralph’s neediness has increased. Ralph’s constantly repeated questions and inability to grasp or retain simple concepts have irritated me to the degree they used to in the early days of his MCI, before they became the wallpaper of our lives. 

My wits were pushed to their end over a dog issue that I cannot seem to resolve: Lola’s almost daily, sometimes more often than daily disappearances, and Ralph’s resulting panic. Lola, now upgraded to the center of Ralph’s life since Zeus’s death, is a lovely, loving terrier; but if left alone in the fenced back yard off our bedroom, she sometimes finds a way under the house. Because the house is in the process of being painted and some plumbing work is also going on in the crawl space under the house, controlling access is a problem; we keep closing off vents and holes and she keeps finding new ones. 

Each time Lola disappears, we follow the same routine. Ralph comes to me distraught that Lola has gotten loose and run off. I tell him she is probably under the house (sometimes, we can actually hear her), but he begs me to go search the neighborhood. I drive around and never see her. I come back and remind him she is probably under the house. He doesn’t remember that she has that habit and argues there is no way she could get under the house because he has blocked all entries. I suggest he open an entry wider because I suspect going down and in through some tiny opening is easier than climbing back out. Finally Ralph agrees and five minutes later Lola appears. 

The first time or two this happened, I was as concerned as Ralph. Now I realize Lola is not going anywhere. That she cannot escape to the street once she is down there. I also know we cannot block access to the crawl space until improvements are complete and workers are gone. Until then, when Lola goes out, someone needs to stay with her. That would be Ralph or me.  And there lies the problem since Ralph is always in the room when Lola wants out, and I often am not.  

On Wednesday morning, Lola disappeared, Ralph freaked out, I did my obligatory drive/search, Lola then showed up, and I explained to Ralph that he had to stay with her. He agreed. I wrote it on his white board. He read it. He promised he’d remember. 

I began my other care-giving job, watching my adorable, but high energy demanding grandsons both under five. Usually I pick them up after pre-school at three and keep until one of their parents gets off work at 4:30 but Thanksgiving break meant I had them at our house most of day. When I got back after taking the kids home, Lola was missing yet again. We went through the routine. She showed back up, while I was dealing with the IRS, or rather trying to get through to a human person because the website was “unable” to verify my account for a refund. 

I was much less patient with Ralph this go round. I don’t think I yelled at him exactly, but he said I did. So maybe my voice went up a notch before I stormed off to make his dinner, which he ate with no memory of Lola disappearing or me raising my voice. My memory was less forgiving.

I went to bed thinking that I didn’t like—no I hated—always being responsible, always being caring, always putting someone else first. I didn’t want to be a wife or a mother or even a grandmother.

Then came Thanksgiving. My friend M to come over to share a very unconventional Thanksgiving with Ralph and me: Asian dumplings in broth from our favorite restaurant Luvi’s, my homemade cranberry sauce, M’s homemade pecan stuffed squash, and my knock out Tres Leches for dessert. M and Ralph don’t know each well, but she’s a natural extrovert and made him comfortable. 

She also likes to sing and asked if he’d like to join her on guitar. He said no, but as we sat and chatted, he suddenly pulled out his guitar. The next thing I knew he and M were singing Willie Nelson’s Crazy. Then while M looked through for a song in Ralph Dylan collection, Ralph started playing Mr. Tambourine Man, singing the rather complicated, twisty lyrics from memory. M and I were astounded. Soon the three of us were trying to thinking of more songs. We ended clobbering Yesterday and reminiscing about our first times hearing the Beatles.

So when M went home, Ralph actually agreed to watch the Beatles documentary Get Back on TV. It was the first time we’ve sat together sharing an actual experience in I don’t know how long. And this morning he remembered and discussed how Paul came across versus John. Furthermore, we actually agreed

Thanksgiving indeed. 

Ralph’s Newest Test Scores-Not Great

Ralph went in for his annual mental check up last week.

Ralph was first diagnosed with MCI (Mild Cognitive Impairment almost eight years (eight years!) ago. At the time his personality and interests were what they’d always been despite his memory issues. I remember being angry in the months (years?) before his diagnosis, thinking he never remembered what I told him because he wasn’t paying attention, or even less attention than he used to. Getting an actual diagnosis was almost a relief for me—having a name to excuse Ralph’s behavior, at least in one area. He was upset, anxious and scared, but as I kept reminding him, MCI, stood for MILD impairment.

For years Ralph was what one of his former practitioners called her Poster Boy for Alzheimer’s Care: year after year he avoided the cognitive and behavioral slide statistics predict. While I noticed subtle changes—slowing down, turning inward, growing passivity—his actual memory skills held pretty much steady from year to year. Then last year’s tests showed a slip from MCI to Mild Alzheimer’s. Still, MILD, I reminded myself. 

I knew we were lucky yet I have sometimes felt a tinge of resentment when friends, family members, and even professionals didn’t notice the changes I saw. Was I imagining things I something wondered.

At the check up Ralph and I are interviewed/tested separately. Despite having noticed, and written posts about, more recent changes in Ralph—his growing lack of interest in talking on the phone; a drop in his problem solving that shows up as confusion managing minor tasks he used to handle adeptly; and some loss of memory about the far past—I told Dr. K. that despite what I’d noticed, I didn’t expect his test scores to drop. A moment later Dr. S. came in and dropped a small bombshell: Ralph, who has dropped a point a year at most in the past, dropped three points on the 30 point MpCa scale this year, moving from Mild to Moderate Alzheimer’s.

Knowing the numbers doesn’t really change anything. They just acknowledge the changes I already recognized. But I do find myself thinking in new ways about the future and how my needs as a caregiver are bound to change. The last six months of hip and back issues that impede my own mobility—I hope temporarily–have colored my thinking. Last week I was in something of a funk, wondering if I should sell our house, the one I moved us into barely 20 months ago and spent a huge amount of energy renovating. I thought about elderly high-rise living, a place with a memory wing of course. But today, I am more upbeat. There is no knowing the timeframe in which we will be adjusting. All I can do is adjust day to day. So, the other day, after he suffered an anxiety attack while I was having a quick dinner with a friend—fifteen calls I in the space of half an hour inside the restaurant and several more calls after I talked to him because he couldn’t remember what I’d just told him—I bought a white board. Not to remind Ralph to keep to his routine, which would be a waste because he wouldn’t remember to check off activities once he did them, but to make sure he can see in writing where I am at any hour of the day. He loves it.  

I’m sure there are more small innovations to come, and more anxiety.

Ralph loses his best friend—Alzheimer’s and grief

Ralph’s beloved 17 year-old lab died last Monday. It was time. But getting Ralph to realize it was time proved a challenge.

For the last eight weeks Zeus had been on a steady decline. When we returned from the family beach vacation in early August, our regular dog sitter admitted she had worried the whole week that Zeus might die on her watch. He had been so much frailer than in the past and was having what she thought were mini-seizures. 

Our vet explained they were not seizures but neurological problems that affected controlling his back legs. Acupuncture would help but not solve the problem. About the same time a gaping wound appeared on Zeus’s hip. It turned out to be a bed sore. The vet, whose own lab had succumbed not that long ago to a similar combination of ailments, warned us that the bed sore was going to be very hard if not impossible to treat, not only because it was an internal infection but because how do you stop a dog from lying down, especially one who can barely stand up. Zeus began weeks of intensive treatment—lasers, oral and topical antibiotics, acupuncture, and a huge bubble bandage that could only be changed by a professional. I was administering his various doses at home and taking Zeus to the vet office several days a week, no small task since he had to be carried into the car. Ralph helped with the lifting but he couldn’t really keep up with the dog-nursing.

At first Zeus seemed to hold his own, more or less. But the hurricane evacuation took its toll. The bandage fell off. The wound festered. The legs gave out. And by the time we returned, Zeus was basically unable to stand without being righted by human hands. 

We did another round of laser/acupuncture/antibiotics/band aids. I could tell Zeus was not getting better, and when the vet warned that if Zeus did not improve this go round we would have to discuss “quality of life” I was ready. In truth, I am not a dog person by nature and my patience was strained. Not to mention that poor Zeus was increasingly incontinent, shedding profusely and smelly.

I reported back the vet’s remarks to Ralph.

“I am not killing my dog.”

“No one is talking about killing.”

“Would you kill me?” 

When I next took Zeus back to the vet, I brought Ralph with me. Covid era vet visits take place in the parking lot. Ralph was chatty with the vet until she said there was no improvement and used the dreaded phrase “quality of life.” Ralph went dead silent. 

“I am not killing my dog,” he repeated once we were back in the car and throughout the evening.

I scheduled another appointment. This time inside the vet’s office for THE TALK. Ralph listened as the vet described how hard it was for him to put his own dog down. Ralph nodded and seemed to hear the vet’s explanation that Zeus was not getting better. 

But as soon as we were alone, Ralph asked, “So is Zeus getting better?”

“No, he is not going to get better.”

“Well, I am not killing my dog.” 

We reached a compromise: We’d revisit the situation in two weeks. That was a Thursday afternoon. 

The process so far had been grueling. I was constantly on edge, expecting Ralph to explode in fury and fear. I also resented that I was caring not only for Ralph but his dog. And I was aware that Ralph saw the parallels between his own infirmities and his dog’s every time he asked “Are you going to kill me?” 

On Friday, Zeus was definitely weaker and even Ralph noticed the way he whimpered at times. By Saturday, Zeus was unable to untwist his back legs. 

Ralph struggled with Zeus, let him lie down and turned to me.  

“Ok, as long as I don’t have to be there.” 

With his blessing, I called the vet and made an appointment for Monday morning. 

For the 36 hours Ralph was as weepy as a man who doesn’t know how to cry can be, frequently wiping the edge of his eye with one finger.

But on Monday he was surprisingly calm when he carried the dog like a child  to the car for his final trip to the vet. Then he went back inside the house as I backed out the driveway. When I got home, alone, he asked for the details. I described Zeus’s calm comfort at the end. 

Since then Ralph occasionally says he can’t get used to Zeus being gone. He asks me if I think we did the right thing. He asks me to remind him “What was wrong with Zeus again?” and “How old was Zeus when he died?” I tell him.

“Oh, you know 17 is very old for a big dog,” he always explains to me then, as if I’m the one who needed convincing. 

And I nod, thankful I gave Ralph the time to come to the choice on his own.  

Post Script: Evacuation Return

Hurricane Ida did very minor damage to our home, blowing a turbine fan off the roof to create a small hole in the roof which we quickly fixed before the new rains came. And assuming we’d be back in a day or two, we had foolishly not cleaned out the fridge so it was a stinking disaster, but thanks to my daughter’s help it is clean and almost sweet smelling once again. In other words, I have nothing to complain about, especially compared to the suffering of others from this hurricane and from all the other covid and climate disasters the world is facing.

However, I inadvertently planted a red herring in my last post by mentioning the leak in my ceiling the day we left and then never telling what I found when we came home: A large chunk of my kitchen ceiling waiting for us on the kitchen floor.

Ralph had turned off the washing machine (but not the water heater as he thought, a mistake that didn’t matter in the end). The problem was that he didn’t notice that the hose that takes the water to the drain had come loose and disconnected from the drain. When my contractor Enrique–who has finished my renovation but now considers me his customer for life and actually contacted me during evacuation to see how we were– came by to assess hurricane damage, he not only took care of my roof but in five minutes reattached the hose securely. I spent the next day deep cleaning the kitchen, a strangely gratifying chore, and we’ll fix the ceiling once we know its all dried out. Of course, pre-Alzheimer’s Ralph would have figured out the problem before it got so bad, but I have to stop relying on that Ralph and start relying even more on myself (and, thank God, Enrique ).

Evacuation and Alzheimer’s–The Perfect Storm

When the City of New Orleans announces a voluntary evacuation before Hurricane Ida, my daughter, son-in-law and I have to make a quick decision whether to stay or go. We decide to go. 

But it isn’t easy finding somewhere within a six-hour drive with room for seven people, including a 4-year-old, a 17-year-old and a10-month-old. More problematic are the two dogs, especially Ralph’s beloved, aged lab Zeus who has been visiting the vet every other day for a combination of laser treatments for his bed sore and acupuncture for nerve problems that make standing on his own impossible. Not a lot of choices pop up:  basically one place, in rural Alabama. It costs twice as much as everywhere else and is in the middle of nowhere but it takes dogs.  We book it.  Then I explain to Ralph we are going. Twenty minutes later I explain again. And again.

Saturday morning I explain again. Ralph has his usual leisurely coffee in bed while I start a load of last minute laundry before running out to pick up my granddaughter who will be riding with us and the dogs. We get back to find soapy water falling through the kitchen ceiling from the washing machine upstairs. Because old habits die hard and Ralph was always brilliant at all thinks mechanical, plumbing and electrical, I foolishly send him upstairs to turn off the machine and see if he can find a cause for the leak while I quickly mop up the floor. He comes down and says he turned off everything. I don’t double check. We somehow fit both dogs on stacked dog beds in our hatchback and take off.  

The four-hour drive takes eight (most of the delay getting out of New Orleans itself), but Ralph is actually enjoying himself because, per my granddaughter’s request, we listen to Bob Dylan the whole way. As we are about to make our last turn toward the rental cabin Ralph notices a sign to the next town 10 miles up the road. 

“Moundville. I worked there on a dig when I was 20.” He seems more animated than I’ve seen him in ages although he can’t remember many details. “The mounds were huge,” he brags to my granddaughter who at 17 is less than impressed. 

Sunday the news from Louisiana is not good, but texts from friends still in Nola remain upbeat. The weather where we are is fine and we are in bizarre evacuation elation mode so all of us, including the dogs, pile back into our cars to visit the archeological site now called Moundeville Museum.  We climb the many steps of the biggest mound, even Ralph. He is a little disappointed that the mounds aren’t as big as he remembers and that the park’s upkeep is not pristine, but he loves that the park is named after the professor he worked under. 

By that afternoon he has lost track of Moundeville since he is caught up dog care. We need to keep the dogs out of the small not particularly dog friendly house as much as possible. We keep them on the small porch as much as possible. I have walked Lola in New Orleans, but Ralph is not used to walking dogs, or to using poopscooper bags, or in having to walk himself period. I take care of the medications Zeus is on, both oral and topical, but lifting Zeus up into a standing position is a struggle that kills my already problematic back. I constantly needle Ralph to help despite knowing better.

Monday we learn about the power situation in New Orleans and realize it could be a week before we can go home, not the day or two we expected. My son-in-law’s uncle offers us his lake house in northern Alabama for as long as we need it. We pack up and drive further north. The cabin is lovely, with a lake view and the internet connection my daughter and son-in-law require to work, but it lies on a dirt road miles from the nearest store. We feel completely cut off from the world.

My sense of adventure is wearing thin. And Ralph’s coping abilities are faltering. Adapting to change was never easy for him and since Alzheimer’s it makes him miserable. He has lost all sense of humor as the rest of us try to keep our spirits up. He keeps forgetting why we are not home, keeps forgetting where home is. The two-hour drive with him to the lake house feels much longer as he asks the same set of questions over and over. Fortunately the lake house has a screened porch where he and the dogs settle in away from the rest of us—unfortunately the steps from the porch to outside are too steep for Zeus to manage.

My daughter and son-in-law have to work, remotely, fulltime. The teenager and I help care for the two little ones. But Tuesday I wake up with a seriously bad cold and by Wednesday have lost my voice and my back has gone out. I am only semi-functional. Ralph meanwhile sits on the porch with the dogs. 

I manage feedings and meds but nag him to walk the dogs. “Where’s a leash” becomes his common resentful refrain. What I am asking of him—walk a dog, pick up its poop and throw it in the trash—is unrealistic. Ralph is too slow, too confused, too frail. I find myself lumping him and his dogs together in resentful annoyance. Evacuation makes it harder than usual to live with a grown man who does nothing for himself.

Then because he catches my cold and I feel guilty. He sleeps nonstop for the next two days. When awake, for the meals we bring to him, Ralph seems more confused than usual. It reminds me of how much ground he lost two years ago when he was hospitalized for a blood infection. 

By the weekend, all seven of us are exhausted. There is still no power in New Orleans and no assurance from the outage grid map when it will come back. Togetherness is getting old. The kids are cranky and Ralph is crankier. But by (our second) Monday, when my daughter’s power has returned and she leaves with her husband and the boys for New Orleans, he has started feeling better and seems to have settled in. He has abandoned the porch to lie in bed reading or napping with the dogs on their beds beside his.  But if asked he helps walk the dogs and even poopscoops, though he forgets what to do with the green bags which I find left in odd spots.

The next morning, the grid shows our power is back too, hurray. We, meaning my granddaughter and me, pack up for the trip back home while Ralph mostly watches. As we load the dogs into the car’s hatchback (where they are remarkably happy travelers) Ralph can’t quite get a handle on why we aren’t home. 

“Is the vacation over?”

Love In the Time of Covid: A Marriage Milestone Passes Ralph By

[Warning: this post is longer than usual but after all..

My son got married last Monday

I am elated. I am relieved. I am still anxious.

Marriage in the time of Covid is no picnic. In the weeks beforehand the wedding I struggled, wanting to be excited but worried about travel during Covid. I definitely botched how I expressed to my already nervous daughter my own concern about travel with unvaccinated grandsons. We had words. But once her pediatrician gave her a green light, I shut my mouth. We made it onto the plane as excited as we were tense, only to have the weekend get off to a rocky start once we arrived in NY.

The six of us traveling together from New Orleans, along with other family members and friends coming from elsewhere, had booked rooms in a well reviewed hotel in Brooklyn near my son JM’s home. Forget the reviews. As soon as we walked through the entrance, we knew we’d made a huge mistake. The place was a dump. Not only were the public spaces and bedrooms dirty, they stunk of stale cigarettes. And No One, including the desk clerk, was wearing a mask despite the prominently displayed sign stating that not to wear one was illegal.

Fortunately we checked out immediately, got our money back and moved into much better hotel—the clean and graciously run NU Hotel of Brooklyn (which I highly recommend). Everyone’s mood immediately improved. Of course, stress was inevitable. As more of our extended family gathered, family politics played out in small dramas —someone felt left out, someone became overly dramatic, someone behaved irresponsibly toward others, someone inadvertently stepped on someone else’s feelings. But by the brunch JM and his husband-to-be B held in their backyard Sunday everyone was getting along and I was enjoying myself, especially when I met B’s family, whom I immediately loved.  

As for the wedding itself…it was, as guests kept saying, “Magical.”

The perfect balmy weather helped. So did the beauty of Brooklyn’s Botanical Garden. 

Unlike at most weddings, a luxurious tea party reception occurred before the ceremony. A remarkably heterogeneous mix of multi-accented, multi-hued, multi-gendered  and multi-hatted guests mingled over tea sandwiches and sipped colorful fruity mocktails. Then ten or fifteen minutes before the ceremony guests began gravitating toward a long table lined with containers of dried flowers. 

The plan to have guests make bouquets had always sounded charming, but I worried ahead of time that few people would really take park. A waste of worry. Everyone, I mean every one present, did a bouquet. Suddenly we weren’t simply guests, we were participants, each of us carrying our flowers as we walked in pairs down a winding path toward the ceremony site to the strains of Leonard Cohen’s Halleluiah played by a string quartet of elderly Russians. Officiant Rabbi Gail continued our participation in the ceremony by calling for frequent group Amens. 

To to be honest, I don’t remember what we were Amening or many details from the service. I was too overwhelmed by the intensity of witnessing the joy and love emanating from my son and his beloved. I do recall the newlyweds led us back from the ceremony to  cake and dancing. But first came a series of toasts, heartfelt tributes to the love of the newlyweds and also their generosity toward others.  When my four-year-old grandson surprised everyone by quietly taking the microphone to make a final toast,  “I just want to say I love you guys,” there wasn’t a dry eye in the garden.

Also not in the garden was Ralph.

For months, Ralph had been in a loop of worrying.

What if some yayhoo attacks the wedding and I have to defend JM and B,” he’d say several times a day as if he’d been ruminating on his own.

Gay weddings are accepted now, especially in Brooklyn,” I’d remind him.

Right, ,” he’d say, then add, “I hate flying, but I guess I’ll have to,”

We’ll splurge and upgrade to first class for the flight.” 

Ok,” he’d sigh relieved until the next time he brought it up.

I did book first class and arranged for close friends to be Ralph’s wingman and wingwoman in NY. Other friends also offered to help keep him occupied and happy. I told myself I had things well organized, that Ralph would do fine. 

But when my son visited two months ago, he and my daughter took me aside and made me face reality: Ralph might or might not be willing to get on a plane, but walking from the gate to baggage claim was beyond him physically as well as emotionally. He could sit at home and chat charmingly from his chair, but in public spaces he was unpredicatable at best. In restaurants he often became impatient and argumentative and embarrassingly inappropriate around wait staff. Being with more than two people at a time unnerved him; given he no longer enjoyed visiting our daughter’s house for casual family get togethers, how would he do around 70 people. Strangers would be a problem. A bigger problem, though, would be all those people Ralph knew he should remember but didn’t.

Recognizing the obvious, I still hesitated. Perhaps my shallow self worried what people would think, how I ‘d have to explain.  It definitely wasn’t because I wanted him there. I knew I’d have a better time on my own. Of course that made me feel guilty—perhaps the real reason I waffled.

But once I spoke to the experts at Ochsner’s brain clinic and a social worker at the Alzheimer’s Association, I faced reality.

I asked Ralph what he wanted.

I don’t want to go.”

Usually I’d argue, but not this time. 

Okay, you don’t have to go.”

Can  you tell people it’s because I don’t fly anymore?”

Yes, that’s what I’ll tell them. Because it’s true.” At least part of the truth.

While the wedding weekend swirled, Ralph had a lovely three days in the care of the wonderful Michelle. A nurse practitioner friend of my daughter, she brought her dog to play with Ralph’s dogs, she drank beer with Ralph and let him have an extra nutty buddy after dinner. 

Where were you again?” He keeps asking looking at the mask I’ve been wearing while waiting to receive my post-travel Covid test results. 

At the wedding.”

What wedding?”

JM’s.”

Oh I thought that happened a long time ago. Did people ask where I was.”

I said you don’t fly.”

Well I don’t.” He nods. 

It was a lovely wedding,” I add though he hasn’t asked. 

And so another page has turned.

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.