Susan Beaudion is a proud mother of two teenagers and she wants to care for them and give them as many opportunities as she can. But it’s been very hard to do that lately and because Susan needs her kids to help with when home care workers don’t arrive for scheduled visits: her teenagers help her getting dressed and helping her onto the toilet. That’s the reality for the 43-year-old woman who has had multiple sclerosis for 23 years and uses a wheelchair. Susan is supposed to get help from WeCare Health Services four times a day to help her get up in the morning, dressed and go to bed in her Beaumont home.
But ever since Aug. 1 when We Care signed a new contract with Alberta Health Services Susan has not had home care workers show up for several shifts. On Monday night her scheduled help did not show up and she had to put herself to bed. Other times she relies on family and friends for help. “Any transfers to the toilet, or meals were done by my kids who are teenagers,” she says of a recent Sunday when her help didn’t show. “But they should not have sole responsibility of their mother's care. They helped me to get into bed that night.”
Susan says the problems started when AHS changed the We Care contract. Since Aug. 1, We Care home care workers are not being fully paid for mileage for visits in non-Edmonton towns. We Care employees now have to pay for a significant portion of operation a vehicle out of their own pocket. “Before the August cutbacks I had three regular homecare workers that did above and beyond what was needed,” says Susan. “They became my friends and they treated me with dignity and respect. They have left because they could not afford to stay. They had to find other jobs because they had bills to pay too. They all loved their jobs before the cutbacks.”
We e-mailed Don Fraser in the Edmonton We Care office twice for him to comment on the missed visits. E-mails were not responded to. Mr. Fraser is welcome to respond at the end of this blog post.
Susan says sometimes the We Care office calls her to say nobody comes. Sometimes not. And that leads to confusion: One day Susan was called and said nobody would be filling the shift. Then, someone did arrive 30 minutes and helped her but nobody came for the rest of the day.
Susan says it is very mentally taxing just not knowing who is coming and when. “I am exhausted! Trying to always try to cover for the lack of care I am receiving. Trying to keep a house going with minimal care when I receive it. This has totally affected my plans because I need to have my friends and family stop just being family and friends to become being caregivers. We can't have fun and socialize but now they have to help me, too.”
Susan continues: “My home does not feel like a home with complete strangers coming in and out. Daily it is changing. Having the same caregivers come regular is so important because you form a trust with that person. It takes time to tell them (someone new) and showing them, and then in return receive minimal care. It is like asking a complete stranger to do something personal for you, (and) you don't want to.”
Susan has reported the missed visits to her case manager. Her case manager is upset with the situation and has recorded the information. “I am hoping that more people that speak out that this will be rectified. I think they (We Care) are going to have to pay their staff better which includes travel especially outside the city,” he says. “I am feeling so frustrated with this that I don't know what else to say. I guess before I felt like a contributing person in society and now I feel like I am trying to exist.”
(Cam Tait is a semi-retired journalist who has cerebral palsy and uses home care in Edmonton)
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