If you have a story to tell, the most important thing is the story, not the form you use to shape it. – Poet Patricia Smith
Sometime last year, maybe February, I started a poem about my dad. I write poems about different things all the time. People I used to know, people I want to know, dreams, love, the moon. But I wanted to describe my dad for my dad. I didn’t know why I wanted to do it; I just felt compelled to.
Today, September 21, is World Alzheimer’s Day… On this day, every year Alzheimer’s organizations around the world raise awareness and challenge stigma about Alzheimer’s and dementia.
My dad, who is 82, was diagnosed with dementia, a neurological brain disorder, on January 4th of this year. It causes problems with his memory, judgment, abstract thinking, and other things.
In late 2018, and early 2019 we started noticing changes in his personality; he would get easily agitated and confused (dad is very laid back). Sometimes he would forget how to cook simple foods like eggs or where he parked the car (he has since stopped driving). But he also had a loss of appetite and would sleep more and more hours every day.
This was also around the same time I started trying to write that poem.
Alzheimer’s is the most common form of dementia, a group of disorders that affect cognitive abilities; intellectual, reasoning, and perceptive skills. It is not a normal part of aging or cognitive decline; it is about way more than just forgetting where you put your car keys.
The Fisher Center Lab at The Rockefeller University in New York City is one of the largest and most modern scientific facilities in the world dedicated to solving the puzzle of Alzheimer’s disease, according to its website.
It is their mission to understand the causes of Alzheimer’s, improve the care of people living with it, and find a cure.
Diagnosis
Dementia affects every person differently, but most will have a similar trajectory from the beginning of the illness to the end, according to leading authorities on cognitive disorders, and dementia. Agitation, irritability, being fearful, even in familiar places, are common signs of dementia.
As the months have gone by, mom and I have gotten used to certain things with dad. Due to the pandemic, private care had to cease with home visits, so mom and I tend to dad’s daily care, in between my job and his various doctors’ appointments. Four out of seven days are good days; he remembers that I’m his daughter, and mom is his wife. The other days are a variation of reminders, such as clocks in every room and a calendar on the wall that he can see.
It’s wild because though my dad sometimes does not remember which day of the week it is, he can recall stories about friends and family from the 70s and 80s.
Rachael Wonderlin, a Pennsylvania-based Dementia Care Consultant and author, calls this Timeline Confusion. On her podcast Dementia by Day, she says in his mind, those people are still around, though he has not seen and/or heard from them in over 40 years.
Again, dementia affects every person in a different way. My dad experiences mood swings and has mostly withdrawn from social gatherings. He uses a wheelchair because his legs have weakened over the last year, but he is still sharp with certain TV programs, celebrity names, movies, and especially food he likes and does not like. Just try giving him green beans! He has hated them since he was 9-years old and still won’t eat them at 82.
Alzheimer’s is a progressive disorder that destroys memory and leads to the degeneration of cells. We are aware of the long-term care that my dad will eventually need. However, early on mom and I decided that we’ll care for him together, for as long as he needs it.
There’s no way around it: Alzheimer's is a hard disease to understand. Sometimes dad will take a nap because it’s too exhausting to recall who we are. Then an hour or so later, he wakes up, and he remembers us. We cherish those moments of recall because we know there will come a day when he won’t remember us all.
So, we enjoy the good times, as often as they appear. We laugh. We watch movies together. We eat dinner and have desserts every day. We get on his nerves, this we know. But he knows we love him and that will never fade.
For more information on Alztheimers and dementia, please visit The Fisher Center for Alztheimers Research.
