Alzheimer’s is something that has been coming up a lot lately. This post is a lot of little stories and thoughts about the disease…
Black friday will mark a year since my grandmother passed away. She had alzheimer’s and, by the time she passed away, had lost all ability to talk, adequately used the restroom, and feed herself.
Alzheimer’s is a bitch.
But as hard as the disease is for those who suffer from it, I think it is harder on the people who are care-takers. Children watch the parents that they loved and respected forget who they are, where they are or how to use basic body functions. Alzheimer’s is one of the most frustrating illnesses an elderly person can have so they along with their families are not a welcome sight at nursing home facilitates, rather viewed as a burden.
Care-takers, those children of patients who find themselves in the decision-making role, often without the help or consent of their siblings, are running themselves ragged. They are constantly torn between: -what is best for my parent, -what can I afford, -I have to update everyone in my family any time something changes.
Care-takers deserve double honor.
What is scary about Alzheimer’s is that there is compelling evidence that it is genetically linked. Practically, this means that a care-taker can expect to pass this burden onto their children as they begin to lose their mind and abilities slowly.
I’ve heard it said (rather crudely) that Alzheimer’s is the alcohol of the mind. As you slip further into it you lower your guard, lose your filter and begin forgetting things. This brings out more of who you truly are at your core.
If this is true, my grandmother was always afraid. When I was sixteen-years-old I was visiting my grandparents in their small home in northern Arkansas. I sat in a wooden gliding rocker while my grandmother sat on a couch that was older than I was. We both stared at the television, set in a wood-grain case that probably weighed as much as I did.
This was somewhat of a ritual when I visited my grandparents, which we did about twice a month. I would hang out with grandpa for a while and talk fishing and hunting then I would sit in the living-room and watch Soap Operas with my grandmother as she filled me in on what was going on.
“Who are you?” she said after I had been sitting with her about fifteen minutes.
“I’m Coleman… your grandson…” I was confused.
“Are you here to rob me?” she asked, straight faced. Her eyes were fixed on me from behind her thick bifocals.
“No. Just watching tv with you.” I said.
“Okay, but I am watching you.”
This was more and more the tone as she slipped further away. The nurses were after her. The doctors were after her. Other people were stealing her things. She was a very paranoid lady. That was always sad to me.
But for all the awfulness that came with her disease, there was good too.
My grandmother had held a grudge against her sister for over 50 years. My mother, nor her sisters had ever met their aunt who resided in Presque Isle, ME. They knew she existed, but that my grandmother hated her and hadn’t spoken to her in fifty years. That is all.
One day, long after she had forgotten me, my mother and even my grandfather whom she had been married to for over sixty years, my grandmother walked into the room. “I need to talk to Paige.” After doing some digging, they found a number, and in the last days of her life my grandmother would call her sister and talk often.
The disease takes away things that are valuable: memories of your kids, your dignity, your mind. But it wipes indiscriminately awful things that we might have been trying to forget or submerge under out own power but were unable.
The disease took my grandmother, but returned her to a better place with her sister and when my grandmother passed, a relationship had been restored that would have never been redeemed without it.
My friend Jay called me the other day. Her grandfather is a great man who did so much for her growing up. He was a kind and gentle man who loved Jesus and his family so much. He is in the hospital now, and is losing the ability to ingest food, even from a feeding tube.
Her mother, like mine, is about at wits end and is getting ready to make the awful decision of shutting off machines, removing tubes and letting him die slowly but peacefully.
(See what care-takers have to deal with? That sucks!)
Jay is 700 miles away and can’t get back in time to see her grandfather again before he dies. I hate that for her because my situation was similar: stuck far away, broke, with no way home to be with the people I cared about in all of this.
I hate that.
A woman came in to Pier1 the other day looking for anything non-breakable and shiny. Beads, some necklaces, a bracelet are some of the things this woman found. Most of it, tacky jewelry. I asked what it was for and she told me that her mother was in the nursing home with Alzheimer’s and that seeing things like this really excite her mother.
“It is literally the same look as when you hand something like this to a kid.” she said. “Her eyes light up, she laughs, she plays, she twirls.
She is happy again when she has things like this, so this is what I am picking up. I just like seeing my mom happy.