She's dying horribly, a prisoner of the rules

Feb 25, 2008 04:30 AM

Joe Fiorito

If you were planning a party, Cynthia Xavier would be the first person you'd call; her eyes are bright, her smile is quick, she makes friends easily.

She can't come to the party any more.

She is dying.

At the moment, she lives in an apartment in Scarborough, out where the birds sing in the hedgerows. She can't see those birds unless they fly past her window. She can no longer get out of bed.

I paid her a visit the other day. When I rang from the lobby, she buzzed me in and invited me into her bedroom.

She was sitting up, wearing a silk shirt, fuchsia in colour, with a matching scarf; perfectly elegant, and immediately intimate: She said, "I'm being paralyzed, very slowly, over time."

She has Lou Gehrig's disease or, if it isn't precisely that – the doctors are unclear – then she has the next worst thing. The symptoms started eight years ago. Paralysis is rising through her body as surely as if she were being swallowed whole.

The daily problem?

She gets some nursing care at home, but 14 hours a week is nowhere near enough. And that's the rub – she wants to live and die on her own turf, and on her own terms. She does not want to move into some charnel house of a nursing home.

But if she has to move – and there will come a time, and it will come sooner rather than later – then she would prefer to live in an attendant care apartment, so she might maintain a measure of independence while she still can; a place where she might keep the opportunity of painting landscapes, at least until she loses the use of her hands.

You think it would be imperative, given her needs, for health care authorities to find her such a place. Think again. She has made the calls and sent in application forms; nothing doing.

An irony: one of her neighbours needed an attendant care apartment a while back; she helped him fill in the forms. He was accepted. She still waits.

A cruelty: she used to be a hairdresser. "I trained in London. I taught at a school with 18 salons." She has not had her hair washed in weeks.

Nor has she had a bath for some time now, because there is no lift on her bed, nor is there a lift in her tub, and she has not been able to get these lifts installed, and the rules for her caregivers state that lifting and lowering a person in and out of bed and bath is a two-person job, and she gets one worker at a time.

In the past, said Cynthia, "I used to get a bath once a week. I could get into the tub but not out; even then, to get me out they would call the firemen or the paramedics."

Indignity? No, outrage.

She retains a hairdresser's breezy intimacy. She raised her bed sheet discreetly and I saw that her legs have withered into twigs and her feet are clenched and curled.

She lies, day and night, on an absorbent pad because she can't get to the washroom by herself, and she can't always wait for her caregivers to arrive.

Read that sentence again.

Imagine if it was you.

She said, "I can't get my ironing done. I need my eyes checked. My glasses are no longer the right prescription. I can't get out to get fresh air.

"And I need a dentist. I have a broken tooth."

Cynthia Xavier is a prisoner of the health care system, living on death row. No, sorry. Prisoners have it better.

Joe Fiorito usually appears Monday, Wednesday and Friday.

Email: jfiorito@thestar.ca

http://www.thestar.com/GTA/Columnist/article/306588