Sparked by Words

Posts tagged ‘odd behaviors’

The Minefield of Alzheimer’s

No one steps into the world of Alzheimer’s with aplomb and grace, knowing just what to do. We lurch into the minefield of a war without possibility of victory or truce, pleading for an advocate to help us avoid stepping on bombs. Then we find that only surrender is possible, only blood on the sleeve. Yet on the battlefield of this disease there is a way to dismantle the bombs.

 

We who are the family of those who suffer try to placate and offer solace, but we are also victims. There is no manual with step by step procedures. Yes, there is information, and you should avail yourself of all you can find. But it is likely to show a huge blank in just the area where you need advice, because the person we love is not a perfectly fitting cube in a bin.

 

If we are very, very lucky, one person steps up and says, “Let me help you find a safe way forward.” I had the comfort of that person’s presence, someone who showed me strategies for dealing with behaviors I didn’t understand and a parent I didn’t recognize, one who didn’t recognize me. Now I strive to be that person for others. I am no expert, not a professional in the field, but am good at directing. If you have questions, ask, please. I can show you the way.

 

You will still sob and raise your fists, you still won’t sleep at night. But you will bring joy to the person you love and sometimes you will both laugh. It will be those moments you live for.

The end is tragically assured but the journey is everything.

 

 

Just a thought 53

 

 

Image of aged woman courtesy Max Pixel

Image of aged man courtesy of Pixabay

 

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Rage and Reason

Candace asks for another cookie and when denied because it’s so close to dinner time, she wails the annoying cry recognized the world over as brat syndrome. She’s two and a half years old, and her self-centered demands come with the territory of preschoolers.

James also asks for another cookie and when denied because it’s so close to dinner time, he lets off with a string of foul language demands. He’s eighty-seven years old and his unfiltered anger comes with the territory of one who suffers from Alzheimer’s disease.

Candace will grow up to become an engineer or a software developer or an astronaut. James* was a Major General in the United States military, and worked at NASA developing critical rocket defense systems. I sobbed at his memorial because I’d never gotten to know the brilliant man in his prime and only met him when the disease that eventually killed him had reduced him to behaving like a toddler.

You may think that Alzheimer’s only affects those with a low IQ, or who eat like sumo wrestlers, or who lie around on the sofa all day clicking the remote and guzzling diet sodas. It doesn’t. It’s an equal opportunity monster that drags victims from every demographic and forces them into the pit of loss of executive function. Loss of every human function. When we discuss the disease, we’re talking about traumatic brain dysfunction moving people backwards. We forget their achievements and focus on the bathroom problems, the odd clothing choice problems, the inability to communicate effectively problems. We focus on the problems because they are always front and center.

Pearl walks out of the dining room, her purse stuffed with essentials like socks, a scarf, comb and brush, and bedroom slippers. She has only taken a bite of her lunch but now stands at the reception desk of the community residence where she lives insisting that her daughter is coming to take her home. The receptionist reminds Pearl, for the fourth time (the seventh, the fourteenth) that her daughter went home after visiting in the morning. Pearl curses the receptionist, declares her daughter doesn’t love her, and wants to phone the police to complain about the service at this awful place. I ask if she’s had dessert yet. When her eyes open wide at that word, I lead her back to her seat and encourage her to take a bite of her meal, promising that she’ll have ice cream soon. She’ll be up in another minute or so, back at the front desk demanding to phone her daughter and insisting she doesn’t live at this place. I know she does – she’s my mom’s roommate.

Gladys’ hair is coiffed in a silver cap of curls, her jacket and slacks are highlighted with a string of glass art beads, her pedicured toes peak out from open front silver flats. She was a model when younger and walks with grace. A few days ago she mumbled unintelligible speech to me and I answered with pleasantries suited for any occasion. I wasn’t prepared when she quickly got up from her chair, cast me a look of fury, grabbed my coffee mug, and tried to throw it at me. I managed to hold on to the mug so only a tiny bit of the hot brew splashed on another resident. Her husband has told me she owned her own business for more than two decades and made decisions that her employees complied with.

Melvin wants to go to the bank. He’s concerned about his taxes and shows me his briefcase. Inside are a blank yellow legal pad and two pens. He asks if I know the bus schedule so he can be on time. I take his arm and lead him to the table where a jigsaw puzzle is half put together. We sit down and find a corner piece and two other pieces that fit together. When I leave five minutes later, he’s peering intently at the puzzle and holding pieces in each hand, trying to figure out where they fit. His briefcase sits on the chair next to him, his taxes forgotten. He used to be a high school math teacher much beloved by his students.

This is the everyday world of Alzheimer’s sufferers. It’s a realm of behavioral inconsistencies – from intelligence to gibberish, from reason to meltdown, from joy to confusion, anger, and rage. Those of us who love them, family members and caregivers, struggle to engage and care for them. We try not to raise hackles, to antagonize, to remind them that they should “know better.” It’s we who must know better. We sons and daughters, husbands and wives, have become their parents and bosses. We hate the job.

I will always remember James, the man who was involved in our space program at NASA. The man who had become a child by the time I met him but who always greeted me with a smile. I remember all of the men and women who once were someone else.

 

*James, like all the residents whose lives I’ve presented here, is based on a real person whose true identity I will not reveal.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s inflicts on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are sixteen years of assisting my mom through the labyrinth of this illness.

 

 

Photo of pier and ocean courtesy CCO Creative Commons, not requiring attribution