Spouse of dying woman angry he had to go to media to get home care

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This article was published 17/02/2023 (980 days ago), so information in it may no longer be current.

A woman who is dying of pancreatic cancer will begin getting publicly funded home care next week, but her partner, who had to complain to the media to get attention, said the help will come too late.

Eric De Schepper said Katherine Ellis should have been receiving home care since she left hospital five weeks ago, when she decided to have palliative care at home. The only care she has received was from the palliative program.

After finally talking to provincial officials late Thursday and Friday, De Schepper said home care personnel will start going to their residence as of Tuesday to help bathe Ellis, change her sheets, and be with her while he rests or pops out for a bit.

“It is outrageous I had to reach out to the media to get this,” the 58-year-old De Schepper said on Friday.

“We had a hospital bed delivered (Friday) with an air mattress which is a lot more comfortable for her. We should have had that weeks ago.

“I’m exhausted. I felt like I was all alone.”

Several individuals and families have contacted the Free Press recently to ask for help to get more home care.

Last September, Patrick Dram, who is a quadriplegic, said his lack of consistent home care resulted him being stuck in bed all day or confined in his wheelchair overnight when no one showed up.

In December, Leona Stahl said she had been stuck in bed since September because no one from home care had been there.

Both Dram and Stahl received more reliable home care services after contacting the newspaper, but for one Winnipegger it was too late.

In October, 44-year-old Sathya Kovac, who was battling the effects of amyotrophic lateral sclerosis, decided to use the Medical Assistance in Dying (MAiD) program long before she needed to because she wasn’t getting the level of home care she needed.

“I could have had more time if I had more help,” Kovac told the Free Press days before her death. “I felt like I had no choice but to end my life.

“MAiD is a last resort and, instead of helping people, they have this… life doesn’t end with less physical ability, it ends with less support.”

Ellis, 62, was diagnosed with Stage Four pancreatic cancer in November, and had to go to hospital in December after she went into diabetic shock.

She decided there was no point in undergoing chemotherapy because it would make her sick and wouldn’t extend her life.

De Schepper said they had no idea when they made the decision to go home that home care wouldn’t be available right away.

“I’ve been working 24/7 pretty much,” he said. “Katherine needs painkillers at 2 a.m., and 4 a.m. My life is virtually non-existent.

“I’ve been not just a caregiver, I’ve also been a nurse, a dietitian, a spiritual worker, a home care worker. I’m five to seven people at once. In the hospital, there were 20 different people doing everything I do myself.”

De Schepper said Ellis’ physical decline has been rapid.

“On Dec. 22, she was still walking around,” he said. “It is now Feb. 17 and she has maybe another two to three weeks.”

De Schepper said if home care had been around earlier, it would have given Ellis a better quality of life.

“I contacted the Never Alone Cancer Foundation and they provided us with $500 in funding for home care workers,” he said.

“On Feb. 15, the day after the 10th anniversary of when I first asked Katherine on a date, a home care worker came and spent three hours with her. She basically gave her a spa treatment.

“I was able to go out, and I had a burger. It was like a holiday. When I came back an hour and a half later, Katherine was lying in bed with a large smile on her face. That’s when I decided I had to make more calls for home care. It was quality of life she needed.”

A spokeswoman for the Winnipeg Regional Health Authority said they couldn’t comment on individual cases.

“We appreciate the frustration for clients and their family members (and) caregivers as we navigate these challenging times in health care,” she said.

“The WRHA home care program continues to see a shortage of staff. Efforts to reduce vacancies continue to be focused on improved recruitment, training and orientation processes for all positions.”

De Schepper said while the home care services that begin next week are welcome, it’s really too late.

“For Katherine, it won’t make much of a difference now, but I’m hoping her suffering and her experience makes a difference for everybody else,” he said.

“I don’t feel like I let her down. I’m helping her and helping others.”

kevin.rollason@freepress.mb.ca