Tag Archives: Lewy body dementia

Separated from loved ones

My husband turned 60 yesterday. For months, we planned a big celebration in the desert. Friends were flying in from Michigan and Miami, three houses had been rented, we had reservations for 15 at Pappy & Harriet’s, our favorite saloon, in Pioneertown. For the out of towners, we had a week’s worth of activities planned: trips to Hollywood, a Dodger’s game, kayaking in the ocean, etc.

Then COVID-19 blew that all to hell.

Cancellations of birthday parties are small potatoes compared to the other consequences of the pandemic — to little things like economic collapse, depression, illness, death. I feel more sorry for all the poor teenagers robbed of their quinceanara parties than for Bud. I’ve been trying to focus on the positive in my writings because 1. there is so much anxiety and alarm out there already, and I feel no need to add to it, and 2. I know my family is incredibly privileged. We and everyone we know are healthy. Bud and I both still have incomes. We have a gorgeous panoramic view of the Pacific Ocean from our living room. Until this weekend at least, we could easily go to Cabrillo Beach — our front yard — and walk the dog, paddle, and swim if we wanted to brave the cold water. When the county shut down the beach Thursday, that was a knife in our hearts. But at least we can still look at it.

So it sucked for Bud that his party got cancelled, or hopefully, just postponed. But we made the most of it. We sneaked onto the ocean in our kayaks early in the morning, and enjoyed a beautiful paddle around Angel’s Gate lighthouse. After all, what better way to practice social distancing than to put the ocean between you and the rest of the world? Afterwards, we warmed up in our sauna, then took a nap. While we were sleeping, gremlins — actually, friends who were supposed to join us in the desert — tacked a big birthday banner to the outside of the house and left Bud a giant bottle of Jack Daniel’s, among other treasures. We made do.

One of the other reasons I’ve been relatively sanguine about life under lockdown was because I took a blow to the heart early in this whole mess, and I had to learn to cope. I was scheduled to fly to Wisconsin to visit my father in early March. A dutiful daughter, I was determined to travel even as flying seemed a sketchier and sketchier idea. Then, the day before I was supposed to leave — March 10, the day my son turned 17 — the nursing-home industry announced new guidelines restricting visitors to all facilities. Three months after I last saw Dad, I had to cancel my trip. I don’t know when — or if — I will ever see him again.

Dad has Lewy body dementia, a form of illness similar to Alzheimer’s but worse. His time left on this planet is precious. When I last saw him, in December, he thought I was his mother, if he “recognized” me at all. But still, he held my hand tight when we watched the Christmas carolers serenade his floor of the memory-care unit where he has been since November. He can’t communicate, or comprehend, but he can smile and sing — and snap and rage. He is still in there somewhere. You can see that in the video his wife sent of them singing “Happy Birthday” to Cole. At first he doesn’t understand what’s happening, but as Judy keeps going, his face fills with happiness and he tries singing along too. I played it for Bud yesterday.

It breaks my heart to think poor Dad can now  see no one but his caretakers at the nursing home, that these relative strangers feed him, clean him, dress him, put him to bed at night. He may not have known me, but he always smiles when he sees Judy and their standard poodle, Roi. He hasn’t felt the sun on his face in months and sleeps alone every night — if he sleeps, which he often doesn’t. It’s a terrible fate for the man who has always been there for me, through scraped knees and graduation and marriage and divorce and children.

I am desperate for this to be over, so I can see my father again. Once that’s possible, I’ll be on the first plane to Appleton. I pray he can hold my hand again. People who die of coronavirus die alone, because they are not allowed visitors. The separation of families during the time we need them most is one of the worst aspects of this terrible moment in time. Scott Simon wrote a powerful piece about this “consequence that’s harder to categorize” for NPR’s Weekend Edition on March 7.

I understand, of course, why nursing homes can’t allow visitors. I know it’s for the greater good, including my dad’s health. So I made my peace with the terrible cost of COVID a few weeks ago — weeks that already seems like an eternity.

Still, when I’m looking out on the Pacific, the ocean that my Dad grew up on and loved, I’m thinking about him.

 

 

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