I picked up the phone and called Marjorie the social worker at Woodlawn acres to give her an update on my conversation, or to be perfectly honest, evasive, phone call to the Administrator who gave me ‘political speak’. I told Marjorie that he didn’t even listen to my concerns as a family member or as my Mom’s voice. I was becoming undone and I had no idea what I was going to do. Marjorie mentioned that her phone had not stopped ringing since the news was given to the family members.
‘That’s good, right?’ I asked.
‘Yes, but as of right now, nothing has changed, the unit is still a go’, she said.
‘Marjorie, I said with my voice cracking, do you think I should go to the press?’
‘Whatever works. Some of the family members also mentioned that they are going to call the local Toronto TV station to see if that will help’, she said.
‘Okay then, I will call my husband, he works as a photographer at the Toronto Sun and I’ll ask him his thoughts’.
‘Good, and thank you so much for fighting’, she said.
‘Ha, don’t thank me yet, let’s see how this plays out and I’ll keep you updated’, I said quietly.
We said our good-byes and I hung up the phone.
I wanted to cry and my mind was racing. I thought for a moment about those Residents who didn’t have any family or designate. Who was their voice? The staff at the facility did not want this to happen; yet, they couldn’t do anything to stop it for fear of their jobs or at least, repercussions from Management.
I was not a ‘rock the boat’ type of person. I liked everything to be sunny and happy at all times. I hated confrontation. Now I was thrown into something I couldn’t, or thought I couldn’t control. I had brief flashbacks of Mom’s Alzheimer diagnosis. I couldn’t control that either.
I took a deep breath, slowly picked up the phone and called my husband at the newspaper.
‘Photo department’, the person answered.
‘Yes, Can I please speak to Mark, it’s Paula’.
‘Hey Paula, how are you?’ the other person on the line said.
‘Fine, is Mark there?’ I asked again, as I was slowly wearing down and felt a tear trickle down my cheek.
‘Yep’ he said on the other end of the line as he yelled, ‘Mark, Paula’s on the line’.
After the ‘Hey, what’s up?’ from Mark, I explained what had happened over the last couple of hours, from the phone call alerting all family members about the ‘suspected SARS unit’ to be opened at the day program attached to Woodlawn Acres, to the calls with the Social Worker and finally the call to the Administrator. I was exhausted and losing my train of thought as I repeated my conversations with both the social worker and Administrator.
‘You want to talk to a reporter?’ he asked.
‘I don’t know, I don’t know what to do right now, what do you think?’ I asked.
‘I will get one of our reporters to call you, it can’t hurt’, he said. ‘It’s your Mom’.
‘Okay, give him this number to call’ I said.
My co-workers continued to cover the reception area while I stayed in the Manager’s office; they supported me 100% and wanted me to see this through. It seemed like an eternity, waiting for the call, but in reality it was only 15 minutes.
My co-worker ran back to the office and said that the reporter was on line 2.
‘Thanks’, I said hesitantly.
‘You go get them’, she said with a smile.
‘I’ll try’, I said forcing a grin on my now aging face.
I’m not sure how long the interview lasted. I’m not sure what questions were asked. I’m not sure how I came across, as an angry bitchy woman, or as a concerned family member. I do know that I repeated over and over…
‘In this case, the residents don’t have a voice; they can’t say, we don’t want this, especially those suffering from Alzheimer’s disease, like my Mom.’
And that was it. The call was over. Would it be enough? Would the paper think it was newsworthy? Would this ever end?
I called Marjorie and let her know I spoke to a reporter.
‘Is there anything else I can do?’ I asked.
‘Paula, you’ve done ample, I can’t thank you enough’.
We said our good-byes and my day at work was now over.
It was now completely out of my hands.
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That evening I was watching the news and noticed a story on Woodlawn Acres on the local Toronto TV station. Wow, I thought to myself, way to go! Although I had felt completely alone this afternoon, other family members had also picked up the ball and ran with it! I couldn’t have felt happier. It appeared that we had worked separately, yet ended up together advocating for our loved ones. I now knew what the word ‘pride’ meant. I was incredibly proud of the ‘family member community’ that I broke down and cried. The tears were not tears of sadness, but of joy. Maybe we were going to win this one after all!
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The next day I waited to see whether the ‘suspected SARS unit’ would materialize at Woodlawn Acres. I didn’t have to wait long. By the end of the day the unit was scrapped.
We had won! The family members and those who lived at the home who were able to communicate their concerns, banded together for one cause and WON!
My interview with the Toronto Sun reporter appeared in the April 10th 2003, Toronto Sun newspaper in which they had also called the Administrator for comment.
It went like this;
‘Relatives of patients in a York Region long-term care home are outraged at the province’s plan to turn an adjacent adult daycare centre into a SARS treatment centre.
‘I’m angry’, Paula Bilz said yesterday after hearing a centre for suspected SARS patients may be opened at Woodlawn Acres*. Her mother, Anne has been a patient at the facility for four years. Like many residents at the centre, the 69- year old has Alzheimer’s.
Bilz said recent news that 2 elderly patients died during a move from their Oakville residence to make room for SARS patients only makes the situation more upsetting’.
‘The Residents don’t’ have a voice; they can’t say we don’t want this’.
The regional director of the long-term care and seniors branch of the York health services department confirmed yesterday that an observation unit for suspected SARS patients was being considered at Woodlawn Acres.*
It would be set up in an area adjacent to the main building that has a separate ventilation system and entrance, officials said.
‘We’re not 100% sure that (the safety precautions) work’, Bilz said. ‘We don’t know because they don’t know’.
Facility name changed .*
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And that was that, or was it? Now it was reported that the unit was only being ‘considered’. Someone was not exactly telling the truth. Was I mistaken? Was the Administrator blurring the lines? I called Woodlawn Acres to confirm my suspicions. I was right, the unit was going to go through, but when management was bombarded with questions from the press, they caved.
Does it matter that the lines were blurred? Only in my deepest heart, but what really matters is that we (the family members) did it! We fought hard in the little time we had, and made a difference. Were we penalized? Were our loved ones penalized? Emphatically, NO!
We had one thing in common, our loved ones health and care.
This was a lesson for me. Advocacy does work, especially when it is done with all the best intentions.
I thank all the family members who fought alongside with me, during those 24 hours!
This was the start of a new me. My life would never be the same again.
© 2014 Paula Bilz. All Rights Reserved.
*SARS would ultimately claim 44 lives in Toronto and 800 around the world. Scientists later determined the coronavirus was most likely transferred to humans from civet cats, a raccoon-like animal that is a delicacy in some parts of China. Nearly one in 10 of the nearly 8,100 probable SARS patients worldwide died — a very high rate for a disease.
*Sat Mar 02 2013 Toronto Star story entitled SARS, 10 years later: One family’s remarkable story By: Amy Dempsey GTA
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