Sep 26, 2011

A Caregiver’s Story About a Husband’s Room and a Place That Provides Peace

This room did not happen overnight. It took me a long time to begin to transform what was a bare and institutional feeling space into what it is today.

By Mary Gazetas

A Caregiver’s Story About a Husband’s Room and a Place That Provides PeaceWhat does it feel like when I walk into my husband’s room in a residence where he has been living now for over two years?

Believe it or not it feels okay as I cross the threshold into Aristides’ Alzheimer’s world. It’s like entering a place that is safe, a room that is now his home, and mine too.

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I see fresh flowers on the broad window sill, sunlight pouring in and he is peacefully asleep. He’s very relaxed lying back in his wheelchair, covered with a small hand made rug, He is beside a window that looks out into some trees that are beginning to change their colour as yet another autumn arrives.

Is he dreaming? I don’t know. What I do know is that on most days he appears to be far away and is not aware anymore of the comings and goings of the seasons that I use to mark the passing of this long journey.

Near where he is sleeping is a colourful abacus and a wooden box filled with blocks that he gave to his son Michael at least 40 years ago. And now it is his toy - something for an 81 year old former teacher, designer, author and educator to touch and play with.

On the walls of his room are large pictures, art posters, plus images of him at a younger age and more photos of who his three children are. Who I am. Who he was. And who he is today. I take portraits of the ‘now.’ One day I asked him who was that - pointing to a recent image of himself. He told me that was “the bread man.” No small wonder he may have forgotten what he looks like. He hasn’t looked into a mirror for a long time.

A Mexican tin dove hanging on a string and several fabric mobiles move gently in the breeze that is coming in through the open window. Behind his wheelchair are two small bookcases filled with some of his favorite art, theatre, film and philosophy books. He can’t read anymore nor appreciate the works of painters he used to love. There are also three of his books he has written which draw a blank for him. Sadly, any kind of intellectual stimulation has been silenced by his Alzheimer’s.

On one of the shelves sits a small Japanese teapot, a blue tea tin and several cups. During the rainy winter months, when it is too wet to get him outside into a wonderful large park with a lake next door, we stay inside and have tea together. I use an electric kettle to do this and always, always we have to have a treat. For months the treat was either Japanese oranges, grapes or cut up pieces of apple. And chocolate covered biscuits or cashews.

The treats changed this summer when he began to have difficulty chewing and swallowing. Soft wafer like cookies and chocolate covered cranberries are the norm these days. Gone is the jar of almonds beside his bed and the box of oat cakes that used to be near his radio/CD player.

This room did not happen overnight. It took me a long time to begin to transform what was a bare and institutional feeling space into what it is today. Part of the reason it took time was because for the first few months after he had been admitted into this 24 hour critical care residence (after having spent 40 days in an acute care ward at the local hospital) - was that I was still stunned. Aristide’s sudden decline in June 2009 came out of nowhere. And I was totally unprepared for what had happened to him and how our lives were now very different.

After a few months, I began to adjust to his new home with the help of my family, a grief therapist and a wonderful staff of nurses and care-aides. In time, I took a social worker’s words, “this is your home too.” to heart.

Hugo, our Portuguese Water Dog, well actually Hugo has become “my” dog because my husband has no idea who the dog is anymore which I think puzzles Hugo. My husband can’t say my name but he definitely knows who I am. He is still there which makes me happy and I like to think the way his room is decorated has helped significantly.

I leave notes for Aristides on a white board. The messages often serve as prompts for the care-aides to engage in conversations with him. They can be about anything. Such as, “We went into the park.” “I will be away for a few days.” “I brought you blueberries for your oatmeal.” “Love Mary and Hugo boy. “

Much to my amazement now and then, Aristides will do a pen ink drawing. I’ve been told his drawings are very typical of a person who is living in the late stages of this disease. Repetitive lines zigzag across the page mixed in with wispy, sketchy kind of marks. I’ve kept all of his drawings and many of them have been pasted into a journal I started in the summer of 2009 - a journal to record this fascinating journey

Aristides has a roomy bathroom which he’s unable to use. On one wall is a larger-than-life Matisse poster. On the other walls are more blown up photographs. Thank goodness for the super cheap enlargement prices at Costco! The bathroom has become an unplanned storage room. Leaning against one wall is a stepladder from home that I brought in because me and some friends were painting murals in a bath tub room down the hallway.

On a box is a basket of locally grown garlic I’m selling to the nurses and care-aides who love garlic as much as me. I spend a lot of my volunteer time not only at the residence but at a community farm where veggies are grown for those living with hunger. I left a note for Aristides telling him I don’t think he’d mind what his bathroom has turned into.

It ‘s not easy some days going into the residence. I miss our conversations together. The conversations can be very one-sided. And lonely. So we communicate in new ways. Through touch, gesture .... a few words at a time coming out of me. I’ve learnt to not ask so many questions because for him to try to find words can be tiring.

What cheers me up is the room I’ve made. The amazing friendships with other family members, other residents, and many of the staff. His room has become like a sanctuary - it’s comfortable and he’s safe in there. It’s a place that honours who he is, mixed in with love and memory.

When it’s time to leave (I never use the good-bye word) Hugo jumps off the bed, I gather up what may need to be taken home, give my husband a kiss and let him know I’ll be back very soon. I put on some music and make sure he has things to play with in front of him. I begin to walk down a long hallway toward the elevator. “Elevator Hugo.” Words that signal we’re leaving Arisitdes’ world behind.

Mary Gazetas is an artist, writer, volunteer who lives in Richmond B.C. Canada. Four years ago 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. Since then, Mary has continued to learn more - especially in the context of how to provide the best care in a residence environment.

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Original content Mary Gazetas, the Alzheimer's Reading Room