Escapes from the nursing home

At 60, I'm not the youngest one here, but while my body is in serious disrepair, my mind fills me with hope

MADELEINE VALLEE

From Wednesday's Globe and Mail

Nursing homes are not just for the elderly. At the one where I live, there are people in their 40s. I've been here eight years, and at 60 — compared to the 40s crowd — I feel like a dinosaur.

There's fairly high turnover of staff and residents here. Staff move on to other jobs. Residents die.

Staff try to make it homelike, but it still feels like an institution. Anyone wanting to work in a nursing home should first spend a week in a wheelchair, then a week wearing nothing but a urine- and poo-filled diaper.

They might also consider spending a few nights in a nursing home to get the full flavour of what goes on. There is loud talking, laughing and noises of all kind. One night, a resident peered down at me when I was trying to sleep and asked if I had seen Susie. Susie is a relative of hers who occasionally visits. These are my neighbours now — the deranged, the confused and the often tender-hearted.

There's no epicurean cuisine here. Food is basic, but plentiful. Residents are encouraged to drink lots of water, milk and juice. In the dining room, anything goes. Residents spit, fart, scratch their private parts, vomit and pick their nose. And if it's too warm, they take off their clothes. This has its benefits — now I know what I'll look like at 80. Some come to eat sans dentures, and if utensils don't work, fingers will. They blow their nose on anything within reach.

I haven't always lived here. I used to have a vibrant and interesting life. I had passionate love affairs, travelled, and even lived in a cabin on top of Vancouver's Grouse Mountain in the 1960s. I had my own apartment. I had a cat. I had friends and a fun social life.

Then, in my 40s, tests revealed I had a vascular malformation in my brain stem. It had to be removed because they tend to bleed and cause a mess. The best way to remove it was to burn it using radiation.

Radiation only partly worked; there was still enough vascular malformation left to cause further damage.

Things were okay for a year, and then all hell broke loose. I had a delayed reaction. The right side of my body, including my head and face, went numb, and as a result I became unsteady. I sank into a wheelchair and am still there. I have a severe speech defect. It's a huge strain to talk. It's hard to talk and hard not to talk, if you get my drift.

There is little communication between my brain and the rest of my body, except to register pain. My right hand, arm, shoulder and upper back feel as though they are encased in a tight elastic band. And I suffer from a constant and intense dizziness.

I also have oscillopsia — a fancy word that means the nerves in my eyes oscillate (up and down, in my case). That, too, causes pain. The best way to deal with it is by keeping my eyes closed. I think and move very slowly these days. If I try to move fast, I inadvertently spill, hit, splatter, break and drop. At least the tinnitus I had for three years went away.

So my mind is alive and kickin', but my body is in a state of serious disrepair. I'm trapped in some weird and wonky physical case that used to be my body — and about every day I feel like screaming, "Somebody get me the hell out of here"

I don't sleep much. I spend much of my days listening to radio and to audio books. I entertain the odd visitor, but not for long as trying to engage in a conversation is exhausting. A while ago a friend brought me an old computer, and I now spend 15 or 20 minutes a day slowly pecking at the keys with the shaky index finger of my left hand. It takes me a long time to write a sentence.

I'm mostly a silent observer here, trying not to rock the boat but trying to get needs met at the same time.

Like the weekly bath. Whether it's a shower (a fancy word for hose) or the tub, it's an awful experience. Because I'm so unsteady, I have a tub bath. It's safer. I can't take my clothes off and I can't climb into the large tub by myself. I certainly can't wash myself. Being ministered to by a near-stranger is something I may never get used to. When you become a resident in a nursing home, you leave your privacy and dignity at the door.

When I need to go to the bathroom, I pull a cord and wait. Eventually, someone comes. A lift is found, I'm strapped in, lifted off my wheelchair and placed onto the toilet. When I'm done, someone cleans me up and I'm hoisted back into my wheelchair.

The same thing happens when I go to bed. At about 9:30 p.m., an attendant aided by a lift positions me in bed, on my back. Because of my numbness I can't move. I spend a long time on my back, but sleep very little. I think. I worry. I wish for morning. Around 8 a.m. a Good Samaritan finally rescues me.

I believe that my situation, though serious, is not hopeless. The damage is not irreparable. If I had the financial means, I could walk and talk again. I believe that in this global village, there's a way for Eastern and Western medicine to work in tandem to help me get out of this dark tunnel. I have a mantra that goes like this: accept, survive and don't give up hope.

I don't get many visitors — it's not the kind of place that makes people feel comfortable. But I'm not alone. Every day, hope is sitting beside me in my wheelchair. And when I'm awake in the middle of the night — listening to the groans and screams of my fellow residents — hope is sharing the pillow with me, reminding me I won't be here forever.

Madeleine Vallée lives in Vancouver.

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