Heather Morrison says being asked to be someone’s representative on a Representation Agreement is like being asked to be a Godmother: “It’s an honour.”
Heather has been a representative on three Representation Agreements. Her friend Wendy asked her to be her representative when no one in her family was willing to do it. “She needed someone to be there for her,” says Heather. “So I became her representative and there was also a monitor named on the Agreement. It was only a few months later when Wendy became very ill and confused, and she was unconscious for the final two weeks before she died. But we had talked a lot about the kind of treatment she wanted — she wanted to be free of pain and comfortable but she didn’t want any extraordinary efforts made to keep her alive — so I was able to speak for her.”
Heather says that the hospital was very accepting and respectful of the RA and of Heather as Wendy’s representative. “Her Representation Agreement was on file at Vancouver Hospital and it became part of her chart. I was always allowed to stay in the room and I was included in decisions. I could call her doctor or nurse or social worker at any time to discuss her care. Decisions about her care were guided by the knowledge of what Wendy would want.”
It is a big responsibility to speak for someone, Heather admits, but “I was just carrying out Wendy’s wishes. We had talked about it so much that I never felt that I was doing it alone. I always felt that I was doing it with Wendy. It was a privilege to hold that trust. It’s a special relationship, a whole different level of friendship to be able to do that for someone you care about.”
That is one of the reasons that it is so important to draw up your Representation Agreement while you are well, Heather points out. “The Agreement needs to be made out while you can think about what you want to be done and can discuss it with your representative. That’s what I want for myself — someone who knows what I want and who I trust to be my go-between, my representative when I can’t do it for myself.”
Heather is also the representative for her friend Jeanette Andersen, past-president of BCCPD (now Disability Alliance BC), who she met 27 years ago when they were in adjoining beds at Pearson Hospital. Like Jeanette, Heather has used a ventilator for the past 27 years and, when Jeanette was taken into Emergency earlier this year, Heather was able to help the staff on duty understand the special needs of someone who uses a ventilator. “Jeanette was conscious, but she wasn’t able to convey any information. I was able to stay with her and I knew what she needed and what she wanted. Her brother is also one of her representatives, so she had two people who know her really well who could speak for her.”
Heather is also a back-up representative for a friend who was recently diagnosed with cancer. His sister is his first representative, but she lives in the Okanagan. “So he knows there will always be someone who knows what his wishes are about treatment.”
Heather emphasizes that this is the most important role of the representative — to see that the person’s wishes are carried out. “I used to tell Wendy when we were talking ‘I’m your human tape recorder — tell me what you want to be done.’ This goes for my representative in my Agreement, too. She knows what I want. Her religious beliefs, her own ideas don’t enter into it. She’ll be guided by my wishes.”
It’s never too early to set up a Representation Agreement for yourself, says Heather. Put it in place while you and your representatives have time to talk about all the different aspects of what you would like done if you were to need help or if you were to become incapacitated. Do it before there is the stress and distraction of illness.
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