Pandemic exposing cracks in home-care system, family says
Mary Chaly's family has struggled with poor communication, equipment snafus
Mary Chaly began her career as a nurse, then became a case manager for seniors receiving home care in Ottawa.
Chaly, 78, now finds herself on the receiving end of the home-care system, a system her daughter says is broken —and has only been made worse by the current pandemic.
"It's kind of heartbreaking to see now that the system has changed quite a bit and we don't feel like we're getting — she's getting — what she needs," Betsy Chaly said.
In the five weeks that the Ottawa family has been taking care of Mary Chaly at home, they say they've encountered poor coordination and communication with the Champlain Local Integration Health Network (LHIN), as well as problems securing proper equipment and life-sustaining food packets.
The experience has left them frustrated, and worse, has put Chaly's health in danger.
WATCH: Betsy Chaly on deciding to care for her elderly mother at home.
The breaking point
Mary Chaly has dementia and suffered two strokes in the past year, leaving her unable to talk, walk or feed herself. She now receives her nutrition once a day through tube feedings.
Since October, Mary had been living at Ottawa's Saint-Vincent Hospital, a continuing care facility. Before COVID-19 hit, Betsy Chaly and her father, Cherian Chaly, toured seven different long-term care facilities in the east end of Ottawa to find a new home for Mary Chaly.
Then, in March, all nursing homes went into lockdown and long-term care was suddenly no longer an option.
While the family believes she was getting good medical care at Saint-Vincent, the lockdown meant she was no longer getting the personal care from her family, who had to suspend their daily visits.
"The breaking point for us was about seven weeks into the COVID situation when we were FaceTiming with her [and] she started to cry," said Betsy Chaly through tears of her own. "It just broke our hearts. It looked like she was pleading to us."
On April 30, Mary Chaly's family decided to bring her home.
The problems began when they realized, just before her first weekend at home, that they'd been provided with the wrong kind of food packets for her daily tube feedings.
"The pharmacy said they can't provide us with the right food until the Monday, so I had to chase around to try to find food for my mom," Betsy Chaly said. "Saint-Vincent's came through and gave us some extra packets of food to get us through."
We are so happy to have mom at home and we can see her and we know that she is OK ... but we need the system to work with us.- Betsy Chaly
The next problem was with the tubes used to get food into Mary Chaly's stomach, equipment provided by the LHIN. First, the wrong tubes arrived. Then the correct replacements failed to come up at all.
"I called about a week before it looked like we were going to run out and I wasn't hearing back from anybody," Betsy Chaly said.
She sent frantic emails to all the organizations involved in her mom's care. Then she sent one to her MPP, Stephen Blais. She said Blais got in touch with the head of the LHIN, and eventually the proper equipment arrived.
Raising the alarm
"I had to raise the alarm bell," Chaly said. "It's not the way it's supposed to be. It can be so much better. We are so happy to have mom at home and we can see her and we know that she is OK ... but we need the system to work with us."
The Champlain LHIN would not comment on this specific case, but said it "constantly strives to improve the timeliness and quality of care for patients and families receiving home and community care services, and we take client concerns very seriously."
Chaly said when her mom worked as a home care manager, her role was to help coordinate between clients and services. But she said that role no longer exists.
"Now, there seems to be so many different parties involved. The LHIN is responsible for some things. They hand off certain things to different service providers, who hand off certain things to other service providers. So it's very confusing," Chaly said.
WATCH: Betsy Chaly says the local health-care network doesn't provide her family with adequate support.
Call for action
Dr. Saskia Sivananthan, chief scientist and medical officer at the Alzheimer Society of Canada, said the problems with nursing and home care have existed for years.
"The pandemic just broke it opened even further," said Sivananthan. "We're getting a lot more distress calls from caregivers who are asking, 'What do I do? Where do I go?'"
Sivananthan, who is currently part of a COVID-19 and dementia task force, said they're identifying the gaps and developing solutions "immediately and quickly."
"I strongly think that there needs to be a federal level of common standards that need to be in place. The Alzheimer Society is here to support them in doing that. There are not common standards now," Sivananthan said.
The Chaly family can't wait for new studies, commissions or standards to be put into place.
"The LHIN, the ministry need to hear from families who are at home, and really hear the issues and the challenges that we're facing. We really want to make it work," Betsy Chaly said. "I'm tired. My dad's tired. My son's tired. There's a lot going on. It's exhausting."