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When no one cares

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My terminally ill mom wishes to be at home. She’s battled cancer for almost 10 years, and although she’s not ready to give up her fight, everyone else has given up for her. Our hospitals and government urge us to take our ill family members home, with the promise of assistance. I’ve had my mom home with me for more than seven months and have had to fight tooth and nail for any help. It’s a shame that instead of sitting and holding my mom’s hand, I’m kept busy fighting the system for assistance.

By the time I do get a moment with her, I’m too angry and frustrated to enjoy it. On a few occasions I’ve even snapped at her. She feels guilty that she’s being a burden, but she’s not my burden. My government is.

Caregivers should be allowed the time to enjoy the precious moments we have left with our ailing relatives. But I rarely get the chance.

My days are spent scouring the phone book for agencies to help or a dental program that can replace the teeth my mom has lost over the years from chemotherapy and recent radiation to her head.

There was a time when she didn’t want to eat. But now that she does, she has no teeth to eat with.

Then there’s the personal support from the Victorian Order of Nurses (VON). Sometimes they show up, sometimes they don’t. Sometimes they clean up after themselves, sometimes they leave more of a mess. Sometimes they jump for joy when they get to go home early because my mom is in the hospital. Sometimes they leave her dirty diapers outside in my recycling box for the world to see.

In March, the VON drastically cut our support hours back from 20 hours a week to 14. Calls to my local MP, Albina Guarnieri, and our prime minister’s office begging for help went unanswered.

On May 8 my mom was rushed to Trillium Mississauga emergency. She had a low-grade temperature for a week, with possible bladder and mouth infections. She also needed to be disimpacted. Because of SARS, I wasn’t allowed to go with my mom. I gave instructions to a nurse that a urine sample should be taken and blood work done. Sadly, neither procedure was performed. She was disimpacted and released.

When I asked why, I was told that emergency only deals with emergencies and that I should take her to a family doctor.

But my mom is bedridden and can’t walk. No family doctor is equipped to manage someone in a stretcher. I know. I’ve tried.

I was also told of a new hospital policy: I’d have to pay more than $100 for an ambulance to take my mom home. I didn’t have $100.

Two of my friends volunteered to help. We’d never done this before, and in the process we may have broken her cancer-riddled arm.

My mom and I have no family support system. It’s just her and me and the help of some of my friends.

Because my mom worked as a nurse here in Ontario all her life, her monthly pension is slightly greater than the amount paid by the Ontario Disability Support Program. Dentistry and other services are covered for welfare and ODSP clients. She isn’t eligible for either.

Her pension barely covers her necessities. There’s not enough money at the end of the month for hospital costs incurred. These things should be covered by our government.

I hear other stories of people struggling, just as we are. It makes me sick at heart.

I often worry about the elderly and sick who have no family to be their voice, no one to stand up for them to demand help. At least my mom has me.

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