My husband is living in the last stages of Alzheimer's. Clinically he’s a Seven.
By Mary Gazetas
Alzheimer's Reading Room
My husband is living in the last stages of Alzheimer's. Clinically he’s a Seven.
He’s in a home and he can’t walk, rarely talks, and he can no longer participate in organized activities.
Reading, writing or watching television disappeared over two years ago.
One question readers might ask is, “Gosh, Well Then What Can He Do?”
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Part of an answer is to share what I tell my children, my three grown children who live far away. When they check into see how their Dad is doing, I find a huge part of my response is to describe to them what he loves to play with.
He’s now playing with things that would amuse and keep occupied a 9 month old - a one year old child. I am no expert. Maybe it is even a younger age. I don’t know.
It took me awhile to realize how important it was that he had things in front of him to touch and move around. It was about a year ago when he could still more or less feed himself to a degree that I began to notice he loved to play with his food. I called it the “sand box.”
Anything close by his meal tray in the dining room became fair play. Things that were within reach and that he could see that were there to make him curious.
It was common to see him rip open paper sugar packets, pour his cup of milk into an another vessel or make a puddle to put his fingers into. Use his paper napkin to fold into a shape to cover a cup or a piece of uneaten food. Use his blue terry cloth bib to cover and hide things under. Activities most of us would associate with what a very young child likes to do.
Besides eating, the playing part was a large part of his meal experience as I sat beside him.
For him this was fun. So I never tried to discourage him despite some objections from the residence staff. To me, that kind of behavior indicated he was still curious about things. He wanted to play. He was bored! Why would I want to tell him it was not cool to do that.
Topic - Deeply Forgetful
I read that having a “rummage basket” close at hand was a beneficial method to keep people like him active.
I brought in objects from home that I hoped might be a connect for him. Things that maybe he might remember or be curious about.
Into the basket went objects such as his empty wallet, decorated wooden Easter eggs, pens, really small art books of his favorite artists, toy animals, a water gun, and hard boiled egg covers made of wool from my mother’s kitchen.
He didn’t seem that interested in those objects. Then one day when I showed up one of the care-aides had put the basket on its side on his table. Now he could actually see inside. What a difference!
Pasted on the wall above his bed is a care plan that describes to all the staff what I think is important re his level of care. No more parking him in his wheelchair by a wall after lunch with nothing for his hands to do. I call that place the “zombie wall.” Instead over time they now get it. After the noon meal, take him back to his room so he can sit beside an open window, with his bedside table in front of him, to place an assembly of toys to touch.
A few weeks ago it struck me he needed some new toys. I went to the local IKEA store children’s area and bought a set of stacking cups and another piece made of wooden thick rings to place on top of one another on a small pole.
They are now his favourites.
When I entered his room this afternoon he was wide awake, playing with all in front of him. Stacking. Grouping, Curious. And happy.
One of his care-aides told me another staff person had come into the room earlier and mentioned she had bought the same toys recently - toys for her one year old grandson. I wasn’t there for that conversation. But I did hear that there is a need to create an awareness that people like my husband have returned to a very early stage of a childhood from long ago.
Meanwhile, I am going to take the wooden stacking rings home to make the holes larger with my drill because he has trouble seeing how to get them to fit on the vertical pole. I don’t want him to struggle to do that. I want him to feel he is winning.
Is P L A Y important? You bet it is. The job of a caregiver is to figure out what is best for their loved one. There are no easy answers - it’s all about trial and error. Plus experimenting to see what might engage them, and what might not.
In Bob’s words - Welcome to the Alzheimer's World. We have to be playful and have fun too.
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Mary Gazetas was an artist, a writer, a volunteer who lived in Richmond B.C. Canada. At the beginning she knew nothing about Alzheimer’s. In fact she didn’t even know how to spell that word. At first she and her husband were overwhelmed by so much information available. Looking back it was a slow learning curve. Once diagnosed (February 2008) the progression of her husband’s Alzheimer’s was fairly slow until he went into a steep and sudden decline.Mary went to Heaven on April 17, 2012. Her words sing loud and true.
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