Tag Archives: Ochsner Dementia and Brain Health care

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.

Ralph’s New Support System, And Mine

Alzheimer's Caregiving Issues, , , , , , , ,

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

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

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

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

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

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

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