Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…
I originally posted this six months ago on March 29. In the ensuing half year, things have NOT gotten better. The closed doors of the care facility my parents lived in have NOT opened; in fact, as of today, the total number of cases and deaths from COVID19 for the age group my parents were in (+80) are: 1987 cases; 324 deaths.
For the sake of comparison, the WORLD death rate from COVID19 is 4%; for Minnesota, the death rate for COVID19, for my parent’s age group is 16%...that’s a death rate of 1 in 6…They lived on a floor with 25 rooms, some with husbands and wives, so there were roughly 37 people there.
Statistically, six of the residents would have succumbed to COVID19…
When the governor of Minnesota, the state I live in, announced that Sheltering-In-Place was going to be mandatory, I had a sudden image of what the COVID-19 pandemic would be like for Mom (who had age-related dementia) and Dad (diagnosed Alzheimer's in 2014).
It wasn’t pretty.
All long term care facilities have closed their doors, allowing employees only to enter and leave. Mom and Dad lived in one moving in 2015, starting in assisted living. They could come and go as they chose, but as Mom’s health deteriorated, she stayed in more than she went out. Finally, she’d broken down so far that we convinced them both to move into Memory Care – because they provided Hospice Care and there was a good chance she was going to need it.
She died in 2016; dad followed three years later.
Toward both of their ends, there was a lot of delusion, a lot of imagination, a lot of confusion that only increased until they each went to meet their maker. That confusion was about normal, everyday things – meals, times, years, seasons, objects…
When I think of trying to explain the COVID-19 global pandemic to them, it gives me a headache. Especially when with Dad, I would be bound to explain it every single day – like how to work his TV or his phone or his clock...or that Mom had died weeks/months/years earlier – and he would forget twenty minutes later and call to tell me his TV wasn’t working or he’d lost his keys or his wallet.
How are families dealing with it?
“‘He hears the news, knows that routines have changed, sees that kids and grandkids are home from school or lost a job, but ‘coronavirus’ and ‘COVID-19’ don’t register.’ It can be heartbreaking and difficult to explain this pandemic to your loved ones and know what to do.”
And what happens when the facility shuts down to visitors? I can’t imagine what I would have done if I couldn’t have gone to see Dad two to seven times a week! (I would have drawn on the assurance that my siblings would take care of him. He was fine when I went to South Korea for four weeks to see my son, daughter-in-law, and grandkids. Dad had been stationed in Japan during the Korean Conflict, so he had an anchor to place me as “away”.) That might have helped during this time as well – explain that I’ll be away and will call as I can…
“It’s important to communicate changes that may cause anxiety or upset a person living with dementia. If you are unable to visit, let the person know. Set up a plan and create a new habit. This will help them to grow accustomed to new changes. Reassure them that you will keep in touch in other ways. The reasons why you can’t visit will be secondary and can be explained simply if needed.”
And the whole “Wash your hands; wash your hands; wash your hands” thing?
“Walk through the process with them, saying each step at a time…Use your hands to model what needs to be done and use a soothing tone…Since frequent handwashing can dry out skin, keep a moisturizer on hand, especially because older loved ones may already have delicate and fragile skin…Accept that people will touch their faces and just do the best you can with distractions.”
All in all, anyone reading this whose parents have Alzheimer’s or other dementias, you have my deepest sympathy. If you need to talk, you can leave a message. I'd be happy to be a shoulder to cry on...
Resource: https://www.health.state.mn.us/diseases/coronavirus/stats/covidweekly39.pdfImage: https://upload.inkspire.org/uploads%2F1503370874800-Alzheimer-disease-patients.jpg