I call that place the “zombie
wall.”
By Mary Gazetas
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?”
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. May be 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 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 behaviour 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?
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 may be 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 favourite 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.
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.
(Source: Alzheimer’s Reading Room, 5 September 2013)
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