Jul 5, 2013

I’m Here, I’m With You ... It’s Okay I’m Behind You

These walks in the park are always a rewarding way to visit with him. What’s hard though is how he can’t see me when we’re moving.

By Mary Gazetas
+Alzheimer's Reading Room

I’m Here, I’m With You

Sometimes while visiting my husband I find myself staring at his wheelchair. His chair is where he spends a huge part of his day in the residence. I notice that the tires have begun to take on a worn look. Maybe “used” is a better word.

He can’t propel himself with his feet. So when he’s moved it’s always somebody that is pushing him from behind.

And it’s me who does the pushing to get him outside into the fresh air, into a beautiful park next door on most days throughout the year.

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I estimate his chair has logged at least 500 miles, if not more, doing these outdoor excursions together.

I love it when I see that the outside returns with us into his room. There can be pine needles, bits of grass, wet earth, crunched up maple leaves tracked in as reminders of where we’ve been. Earthly substances that are for me a nice contrast to his somewhat sterile, stuck inside world.

On the back of his chair is a canvas bag that used to hold things such as an apple, a sharp leatherman knife, plastic bag for Hugo the dog, treats, a water bottle and paper napkins. I used to love to sit on a bench with him facing me and I’d cut up an apple to share.

But we had to stop the apples when chewing became difficult this summer. The bag is also used to carry now and then “snitched” flowers back to his room - one rose stem, or one large hydrangea bloom. In the winter - a sprig of the best ever smelling witch hazel.

One day another resident, dear Lottie, found the knife! She was caught red-handed with it wheeling down a hallway telling care-aides she was going to go up the hill to go shopping. After that I had to be way more careful as to where I hid the knife that I don’t use anymore.

These walks in the park are always a rewarding way to visit with him. What’s hard though is how he can’t see me when we’re moving. One thing I do is talk quite a lot over his shoulder with my head bent down. I like to think he knows I’m there .... I know he can’t see me. But he can hear me carrying on a one-sided narrative.

“ ... there are a lot of weddings in the park today. Over there is a beautiful bride and groom ... wow, dressed up like a fairy tale princess and prince. They’re posing for photographs. Let’s go wait on the bridge and we can look for fish ... maybe we even might see a turtle. Or Hugo will chase a rabbit.”

He usually responds in one or two words when I say, “doesn’t the sunshine feel nice.”

In the winter of 2010 when I was down in the Californian Anza Borego desert on a much needed break camping with my twin sister, I got an e-mail from my son, Michael who had taken his father out into the park.

I had a wonderful visit with Dad today. I related several stories about some Kurosawa films, including Dersu Usala, and the time we saw it together in Calgary when I was about 10 at the little art house cinema, and during the description of the film, quite out of the blue, he blurts out "that sounds like a Kurosawa film" as I'm describing the shots and story.

I must say I got quite teary on the bridge as the ducks were paddling about in a grand old dance.

How good does that get for a response from his father! Me thousands of miles away knowing everything was okay.

As caregivers we have our own ways of trying to engage.

Recently I read an article written by Ian Brown who writes for Canada’s Globe and Mail newspaper. He is the author of The Boy in the Moon, and describes conversations with his severely disabled son (who has CFC) confined to a wheelchair as they walk down a street in Toronto.
“ I lean down and push the chair with my elbows, so I can talk in the ear hole of his soft foam helmet. ”Look Walkie,” I say, “look, the white micro-miniskirt is back. Or: “That Hungarian butcher has had that same side of meat hanging there for a year - let’s never eat in there.”
I say all sorts of things, whatever comes to view. I am pretty sure he understands none of it, rationally. But he knows we are having a Conversation, and he knows he is on one end of it. The wriggling, blasting laugh of pleasure our yakking always gives him reminds me again and again how important it is to make that gesture - to engage another, to try to reach the Other, no matter how remote the likelihood of any return or result or reward.”

Beautifully put words that apply to those living in the Alzheimer’s world too.

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