I remember when I bridled at the interchangeable use of Dementia and Alzheimer’s. This was back when Ralph’s diagnosis was MCI, Mild Cognitive Impairment, or may even slipping over in Mild Alzheimer’s. I clung to narrow definitions back then. The plaque build up his tests showed signified Alzheimer’s and served as my point of gravity. I could tell people, i.e. myself, that he had a specific physiological condition. I did not want him lumped into the big vague world of dementia. No, really, I did not want to think of him as “demented” as in the pejorative taunt “You are so demented.”
Now the boundaries between definitions matter less and less. While repetitive questions and conversations are annoying, Ralph’s memory loss feels routine except when a visitor comments and I recognize the behavior afresh through her eyes. As an echo to Ralph, or a habit I’ve picked up from him, I think I also repeat myself more.
As for Ralph’s general behavior, his passive has inertia has become, like the radio he listens to all day, the background noise of my own more active life. I come and go, I clean and cook, I talk on the phone and escape to my office, I mess with the grandkids. He sits and watches. We spend large swaths of time together in near silence.
I find I don’t really want more from him: I find most of our longer conversations, which occur while he watches me prepare his meals, deadening. He usually wants me to clarify some fact from our past that I have clarified many times before. As he gets entangled in what seems simple logic to me, as he repeats the same questions or commentary, I sense his desire to connect on the only wavelengths he has available. But I often resist, am short and evasive. I don’t want to face that he might be lonely and I could make him less lonely if I engaged back, if I were a little more loving and patient. A little less wrapped up in my own anxieties.
As for his dependence on me, it is really just another part of our routine I don’t notice anymore, especially when we are alone and I’m not comparing our relationship to others’.
Ralph’s condition is what it is, ever changing in small increments and this is the life we both lead, one I find myself adjusting to on a daily basis. I don’t have time or energy to worry about definitions now.
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 enjoyed his Christmas from what I can tell. He was not excited about going to my daughter’s house on Chrismas Eve, but he was totally involved in “surprise present” game in which Ralph opened a big cardboard box inside which LittleBoyRalph popped up pretending to be a mechanical toy with an off and on button—both Ralphs had no problem repeating the game over and over to everone else’s delight. Nor was he excited about Christmas dinner but then was charming. I was told by several at the dinner how “good Ralph seemed, better than I expected.”
I always hate those comments, well meaning as I know they are. And KG’s recent response to my last post definitely came to mind. What he wrote—“Others don’t see what I see”—really hit home. I am struck that there are elements of daily life with Alzheimer’s that don’t get discussed because they seems so trivial in the scope of things (the weather and certain small fixations like Ralph’s daily Nutty Buddy) or slightly embarrassing (issues of hygiene come to mind and my allowing Ralph nightly beers). I see the hitches in his most basic problem solving, his passivity (often a godsend frankly, like this afternoon when I had to drive our neighborhood streets aimlessly for an hour because I had a napping child in the backseat and Ralph was perfectly happy in the passenger seat), his social disconnect when he wanders back to his bedroom despite having guests in the room talking to us.
At the same time, I don’t think I pay the same degree of attention as I used to in the early days. I’m afraid I don’t note as carefully as I used to every small Alzheimer’s wrinkle as it crops up. I don’t worry so much about whatever new normal has arrived. Everything is normal.
I think I see Ralph as clearly as I need to. But then he still can surprise me. Ralph used to be something of an artist. After his diagnosis of MCI I found him an undemanding art class he attended weekly with great devotion for years, but then the teacher had to stop teaching and although I set up a studio-office for him behind our house here, he has not picked up a paint brush or pencil since we moved in. Until yesterday.He had found a blank artist pad I’d bought at the drugstore for LittleBoyRalph and sketched from memory our old dog house on the farm as well as some kind of fighter jet. He also wrote his name on the sketch pad to make clear it was his. It now sits between the cushion and arm of his chair. I am amazed at his initiative and his spark of pride, like a sudden blip on a flat graph line. I also wonder whether he remembers that the sketch pad, which he didn’t touch today, exists.
“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.
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.
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
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’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.
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 ).
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.
[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.”
“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.