Tag Archives: Alzheimer’s Association

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

Alzheimer's Spouse Issue, , , , , , , , , , , ,

[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.

What Is Normal Anyway?

Caregiver/Spouse Issues, , , , , , , , , , , , , ,

people_in_the_park_204264 Is this the couple  Ralph and I are becoming? Jaunty hats and sensible shoes? Would it be so bad if we were them? Don’t they  look  happy and normal? But what is normal?

As I look at the life Ralph and I share now, I can’t help wondering.

When he was first diagnosed with relatively advanced Mild Cognitive Impairment, Ralph was in his mid-sixties and considered young to be jumping on the Alzheimer’s escalator. Now he is approaching 70 and those  symptoms—fogginess, lack of energy, loss of short-term memory, disengagement—that seemed so out of keeping with our peers a few years ago fall more comfortably into the gray area called “the aging process.”

And after all aging  is normal and even desirable  (the alternative being death) although it hits us each differently. For example, I called Ralph’s oldest friend the other day; the two have drifted out of touch over the years but Ralph still talks affectionately about Jim and I thought reconnecting  and reminiscing would be nice for them both to do while Ralph still can. Jim was excited at the prospect of re-connecting with Ralph but we couldn’t actually talk until  he put in his special hearing aid for phone use.

In that moment it occurred to me as it has before that while Ralph remains on his plateau of not-quite-Alzheimer’s-yet, his issues are not radically different from other men his age, at least according to what I hear from the women my age who live with them. So many of my friends complain that their husbands are slowing down faster than they are, that they no longer want to travel, that they’re becoming stay-at-homes, that they are more passive than they used to be, that they need to be cared for, that they require a lot of patience.

And we women have our own issues, or at least I do. The sleep issue—never more than six hours and often less, with the resulting sense of dull tiredness and desire for an afternoon nap. A nap for God’s sake! Ugh. The driving issue—is my driving getting worse or am I just more nervous? The concentration issue—much harder to turn off the wifi and buckle down (although maybe this problem will go away after election day). And of course the fashion issue—not that I ever dressed fashionably or learned to use make up but nowI either look as if I’m trying too hard or not hard enough.

The thing is, I still do feel younger, still want to fight aging, while Ralph has embraced it. Our day-to-day life has fallen into a frankly pretty comfortable pattern set largely by Ralph’s needs and wants. The pattern scares me because I find it enticingly easy to fill so much time dealing with minutia concerning managing Ralph’s care, our finances and our household, especially since my social life has actually expanded as Ralph’s has contracted. If this is this my new normal, it is not all bad? But I worry, where is my zest for the intellectual and creative ambitions that have always defined me before?

In a weird way I am almost heartened personally by the current election season in which two of my peers slug it out with vigorous, and in one case even brutal, energy (although I’m not saying their “normal” is the one I want). I want to believe I can still find that kind of passion and energy in myself. But maybe not, and maybe that’s okay.

Sorting out what is normal under my circumstances, or what is normal under any individual’s individual circumstances, is not easy, but it is where I find myself.

(PS. Last nightI asked Ralph, as I always do, if he’d talked to anyone during the day. He said no. I checked his phone. There was Jim’s number at the top of received calls; evidently they’d talked for over half an hour.)

“Younger Adults With Alzheimer’s Are Key To Drug Search”–My Greatest Hope and Fear

Support and Research, , , , , , ,

lifestyle dementia technology multitasking

I realize there is much controversy about how money should be spent on Alzheimer’s research—whether more funds should go to a cure or go to prevention. Self-interest has kept me hoping that research finds a way to prevent Ralph from the currently inevitable slide into more serious dementia, yet I also have told myself that preventing Alzheimer’s from affecting masses of others is the more altruistic approach.

Then I read the article,“Younger Adults With Alzheimer’s Are Key To Drug Search,”  . Focusing on a 37-year-old woman diagnosed with Alzheimer’s, it claims that testing for certain Alzheimer’s genes could be a crucial part of the research to prevent Alzheimer’s:

“Until recently, people who inherited this gene had no hope of avoiding dementia and an early death. Now there is a glimmer of hope, thanks to a project called DIAN TU  that is allowing them to take part in a study of experimental Alzheimer’s drugs.

The project also could have a huge payoff for society, says Dr. Randall Bateman, a professor of neurology at Washington University in St. Louis. “It’s highly likely,” he says, that the first drug able to prevent or delay Alzheimer’s will emerge from studies of people genetically destined to get the disease.”

I hope Dr. Bateman is correct. But I can’t help thinking about Alzheimer’s in purely personal terms. And really, the pros and cons of the research were not what came to the forefront as I read the story.

All I could think about were my kids. Basically the Alzheimer’s gene is the monster in the room that has scared me too much to acknowledge out loud.

I doubt I am alone in this avoidance. I’ve noticed that children, most of them already grown, receive only passing mention on many spouse caregiver sites devoted to Alzheimer’s. And the heroic children caring for their parents with Alzheimer’s are so busy writing about their concern for those parents that they never mention fears about their own future.

But the genetic connection of Alzheimer’s within families does exist as this article, and many others make clear [“Alzheimer’s Disease Genetics Fact Sheet for the NIA”,   ”Alzheimer’s genes: Are you at Risk?”,    and a variety of scholarly studies.

The thought that Ralph’s and my kids may be at high risk for developing Alzheimer’s is horrifying.

But the thought of them getting tested horrifies me too. There are all kinds of genetic risks my descendents already face. Cancer, heart disease, and diabetes to name a few. Do they need to be burdened with the certainty, or even the likelihood of Alzheimer’s? I am someone who would rather not know my future (or the future of those I love, especially if that future is going to happen once I’m not around frankly). But my kids are not me. Eventually each will decide what course he or she wants to take.

While I certainly wish Ralph had not developed Alzheimer’s, we are adjusting day by day. In fact, I am fast reaching the point of not quite remembering what life was like before. Alzheimer’s has become central to our life as husband and wife, or as the ever wise Alzheimer’s Wife  recently posted, “part of the bargain.”

The kids didn’t buy into that bargain. But they eventually they may have to own it. It’s not fair, but it’s life.

“In The Zone”

Alzheimer's and the Arts, daily life with MCI/Alzheimer's, , , , , , , , , , , , , ,

Ralph took his first art class in twenty years this afternoon.

He agreed to go only because our physician’s assistant Stephanie gave him a “written prescription” to take art lessons during our last visit to the Memory Center at Emory.

Ralph has always been a natural draftsman, and in his thirties he took courses from a couple of relatively renowned artist/teachers who gave him real encouragement. Then life got in the way and he didn’t stick to the art. He always said he’d take up the painting again once he retired. But that was before he was diagnosed with (not so) Mild Cognitive Impairment and he has not touched a paintbrush since.

So when he told Stephanie that he had his paints all set up in his office in the barn and was going to paint soon once he had things organized, I probably rolled my eyes. He does go to his office to “straighten and organize” most days, but really he sits and smokes and talks to the dog. I am glad he has somewhere to go and be comfortable. I certainly don’t care that the office will never be organized, but I do fear and sense the mental atrophy setting in.

Like everyone involved with dementia and cognitive issues, I am aware of the benefits of art therapy. [For those interested there is a documentary, “I Remember Better When I Paint” worth checking out as well as numerous articles and essays to be read on-line.] But Stephanie and I knew better than to push that angle with Ralph, who shies away from that word “therapy”.

Instead Stephanie blamed human nature, explaining in the nicest way possible that if Ralph didn’t take an actual class he would never start to paint on his own. She told him that he needed the class to jumpstart and structure his time. (She also prescribed a weekly night out for dinner or a movie, but following that direction has proven harder for reasons I’ll explore another time.) What he would hear as nagging from my mouth became sound advice  when it came to Ralph from an authority figure who also happens to be attractive and charming.

Fortunately, as Stephanie agreed, Ralph doesn’t need to be in a special class for the cognitively impaired. He just needs a class period: A time and place on his schedule; plus an environment with other students good enough that he takes the class seriously but not so good that they intimidate him. Not an easy situation to find in a small town, but two friends separately recommended the same art teacher who has been working with a group of adult students for several years. We talked. I assured her that Ralph was not a beginner, but I also felt obligated to acknowledge Ralph’s M.C.I. just in case something came up. I assured her that no one in the class would be able to tell he had a memory problem. I could hear her hesitation, but she agreed to let him in.

Since I told him that I’d signed him up he has asked with anxious frequency what day the class was, where it was, how long it was, what he had to take to the class, who would be at the class and how good were they at painting.

He has not been asking with enthusiasm. His has been a litany of fears. On the drive to the class this afternoon—“Where is it again,” a moment of silence, “Where is it again?”—Ralph was such a bundle of nerves that I almost gave in and said he didn’t have to go. The gray, drizzly cold didn’t help; bad weather is always an excuse for Ralph these days.

But we made it to the parking lot and he did get out of the car with his supplies.

I sat with my motor running as he walked in, pretending to take a call on the cell phone. By then I was a bundle of nerves myself, the same nerves I remember suffering when each of my kids faced the first day of school. I watched through the window as he trooped into the classroom and walked up to the teacher to introduce himself.

“So how was it?” I asked when he came out two hours later.

I could tell he was in a good mood, but I was not expecting what a good mood.

“Once I got started I was in the zone,” he said and showed me the painting he’s begun. He can’t wait to go back…

How happy-making to offer a success story for a change.

OOPS

Caregiver/Spouse Issues, , , , , , , ,

So I was about to write about a little snafu caused by Ralph’s memory lapse the other day but then I had my own cognitive issue.

We received a less than friendly email from a neighbor who has been complaining about various issues. In the past when he has made requests we have always complied. This time he was mad because a dumpster on our rental property was not emptied on New Years Day. The email was sent to our business email address and to Michael, the guy who manages the property since we “retired”. In the past we have always bent over backwards to make him happy—hiring people to police the grounds, adding an extra dumpster pick-up day, acquiescing to his zoning requests to put in a swimming pool and build a wall. This time I was admittedly annoyed at the snotty tone of his letter and emailed Michael that I now wished we hadn’t offered so much in the past. Unfortunately I was emailing from my phone, was slightly distracted, and hit “reply all” by mistake.

The neighbor was not amused.

And I can’t blame my screw up on cognitive impairment. Wait, maybe I can.

As followers may have noticed I haven’t written here for a few weeks. Since Ralph was  functioning more or less as usual, I took a short hiatus, taking care of the essentials but not thinking quite so much about our situation–a small case of burnout.  And I am not alone.  Supposedly caregivers of Alzheimer’s spouses have a higher rate of anxiety that could impair cognition. http://www.alz.org/care/alzheimers-dementia-caregiver-stress-burnout.asp

The hiatus is over and I am feeling calmer about my life, but don’t tell anyone. MCI and Early Alzheimer’s have given Ralph his built-in excuse for life’s big and little screw ups . I need my own.

I Meet Another MCI Spouse

Caregiver/Spouse Issues, Support and Research, , , , , , , ,

We are a little early for Ralph’s third of five sessions in an Emory University study on visual aids on whether certain visual clues will improve memory retention for those with MCI/Early Alzheimer’s. (There are so many studies out there right now and they all need volunteer subjects. But not every patient qualifies to be in a study. MRIs are usually required and there are often other restrictions as well but it is worth going to the Alzheimer’s Association website to check out what studies are going on in your neighborhood.)

Ralph’s study is concentrated over a two-week period. Ralph says the “homework” aides the researcher has recommended don’t help but he has returned willingly enough. I don’t sit in during the sessions but I come alone for moral support and read old magazines in the drab but not uncomfortable waiting room.

This afternoon another couple sits down in the waiting room with us before Ralph gets called in. I size them up: both husband and wife are a little older than us, probably early seventies, casually but tastefully dressed, whispering and smiling at each other with just an edge of nervousness that says they are first timers. She is lively and chatty, he more passive. Like Ralph.

But a few minutes before Ralph goes off with his researcher, another researcher comes for the wife. The husband and I are left together with the dated magazines. As we begin to chat about the weather and the time it took to get to the building, I am dying to bring up the obvious—if both of our spouses are in this study, they must both have the same diagnosis—but I don’t want to intrude on his privacy.

Before I can stop myself the letters M, C, and I are out of my mouth.

Yep, his wife is about a month behind “Ralph” in the process, not necessarily in terms of her degree of cognitive impairment but in terms of when she was diagnosed. She is seeing Doc L’s partner. She has just started the same drug (donezepril) Ralph is on. Her husband’s not sure what comes next.

I am almost giddy as we start comparing notes. There is so much to talk about that I haven’t been able to share with anyone else. Our hour or two together in that dinghy room flies by. I doubt I’ll ever see him again. I don’t know his name.

But for the first time, I realize I am not alone