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Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 15:42
Thank you, Mr. Chair.
Distinguished members of HUMA, thank you for allowing me to participate in the valuable work that this committee has been tasked to undertake.
As you know, I'm Mary Oko. I'm appearing before you today as a family member whose mom is currently at Copernicus Lodge, a long-term care home located in Toronto, Ontario. I'm also the chair of the Family Council, representing the families who have loved ones living in the home. My mom, Wanda Oko, is 95 years old, and has advanced dementia. I come before you to share how my mom and I were impacted by COVID and how I think we can make things better for our seniors moving forward.
I'll start by giving you some background.
During wave 1, my mom's home was fortunate not to have any COVID outbreaks.
During wave 2, my mom's home was hit pretty hard. Twenty-two residents died of COVID, and 100 of 200 residents and 85 of 300 staff were infected. Many residents are still suffering. Their health has declined; many who were once walking and independent now need walkers or wheelchairs or are bedridden. My mom is one such casualty. Before the lockdowns, she was walking; now she is bedridden, and during the lockdown she developed a stage 4 bedsore on her tailbone the size of a golf ball that will likely never heal. She didn't get COVID; however, she suffered due to the lockdown and other restrictions implemented under the guise of keeping residents safe.
Today I will share three concerns that have deeply affected me and my mom.
The first one is insufficient staff support for my mom. My mom has lived in long-term care for nine years. Because of poor supports provided, I felt compelled to hire, at my own expense, a care assistant who helped her with mental stimulation, exercise, feeding, and some outdoor excursions. In addition, I visited her twice per week to help with these and other activities, such as dressing and hygiene. Without this added support, my mom would not have continued walking or maintained mental engagement.
When COVID hit, my mom's care assistant and I were locked out of the home. When I was allowed back into the home in September 2020, my mom had declined because our extra care had not been available. She had stopped talking and she was less engaged. During the wave 2 lockdown, she received no access to exercise and was not able to leave her room. My mom is now bedridden and needs the assistance of a lift to move her from bed to wheelchair.
Assistance with feeding has always been an area where staff shortages are most obvious. Prior to COVID, my care assistant and I helped with my mom's feeding. During the wave 2 lockout, staff shortages and a lack of family support resulted in my mom eating poorly and a decline in her overall well-being.
As my second point, my role as a caregiver for my mom was not considered. Given there is a lack of staff to provide the level of care tailored for each resident, the staff always welcomed my help when I came to see my mom. They also valued that I could quickly identify issues that needed the attention of staff, or in some cases needed to be escalated to the doctor.
When COVID hit, I, like many families across Canada, was shut out. I was reduced to video meetings. At these meetings, my mom didn't acknowledge my presence, as she is better when I'm holding her hand and talking to her.
During wave 2, when families were once again locked out in the midst of our outbreak, as I mentioned earlier, my mom developed a serious bedsore. In pre-COVID lockdowns and restrictions, I could have had access to my mom and worked with the staff in addressing any issues she had. Families were not allowed to help when the home badly needed our support.
Lastly, my mom and I, as her power of attorney, were not properly consulted in decisions that impact my mom. We consider Copernicus my mom's home and not just an institution. Since my mom has advanced dementia, I have always been involved in the discussions and decisions relating to the level of care provided to her. COVID changed this situation. Especially, during wave 2 my mom and I as her power of attorney were not included in some of the decisions that were being made that impacted her level of care.
As an example, on December 14, two residents tested positive for COVID on my mom's floor, and then nine, again mostly on my mom's floor. This led to a decision to confine over 200 residents to their rooms 24-7, many in areas where no active cases existed. This decision was made based on meetings held between Toronto Public Health, the Ministry of Long-Term Care, Unity Health—which is the hospital that's partnered with our home—and the Copernicus management team. Residents and families of residents being impacted by such decisions were not given a voice at these meetings.
Any other patient in our health care system is given the benefit of consultation in decisions that impact their health. During COVID, as it relates to COVID, no such consideration is given to seniors living in long-term care or to their power of attorney. Why is this considered acceptable?
How do we fix this? Here are my four suggestions.
First is national standards for long-term care. Comparing what was happening in my mom's home with other long-term care homes in Toronto or in other provinces, I note there is a lack of consistency in how our seniors are cared for in many areas, including staffing levels, COVID testing, and IPAC controls.
No senior should ever feel that they are discriminated against based on the city or town they live in, the province or territory or the type of home they choose to live in. We are all Canadians, and our seniors should be treated fairly and equitably from coast to coast to coast.
Second, never lock out families. Families serve an integral role in the level of care provided to our seniors. We know our loved ones, and we can and do work with the homes to provide the quality of care our loved ones need. Until adequate staffing levels are addressed and funded, it is essential that families not be denied the right to improve the quality of care and indeed the quality of palliative care for our loved ones who live in long-term care. My mom and our seniors will always need their family for love and support.
Third, raise the profile of family council. During COVID, the Family Council at Copernicus Lodge was a strong voice speaking for their residents. The Family Council pushed for the resumption of regular bathing and showering, demanded increases in mental stimulation and activities and so much more, but family council members are unpaid volunteers, and it is a real challenge to attract and retain members, especially when we are not listened to by well-paid management and health care agencies.
Lastly, a resident voice at the table is needed. In any discussions that impact the health and well-being of the residents, their voice and/or the voice of the power of attorney who represents the resident needs to be included.
I beg you to never silence my mom's voice.
Thank you.
View Rosemarie Falk Profile
CPC (SK)
Thank you so much, Chair.
I would like to thank both of our witnesses for their contributions to our study today as we look to better support Canada's seniors as we navigate beyond this pandemic.
We know that the COVID-19 pandemic has underscored and exacerbated shortcomings in our long-term care homes. Unfortunately, it is our seniors who have paid the highest price for these shortcomings. Regardless of where they live, every senior has the right to age in dignity. Every level of government has a responsibility to take action.
Ms. Mary Oko, I want to thank you for your vulnerability and your willingness to advocate on behalf of your mother and, ultimately, all seniors.
I don't want to see an “Ottawa knows best” approach when it comes to national standards. Ms. Oko, I'm wondering how important you would think or believe it would be to not only have the provinces and territories at the table when it comes to discussion of national standards, but also to have frontline workers, seniors advocates and caregiving organizations.
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 15:56
I feel that it has to be a collaborative approach. You need to have many people at the table, and definitely frontline workers.
Here in Ontario, we have a very strong registered nurses association that's been a very strong advocate and proponent for the quality of care that residents should be having. Individuals like that and advocacy groups should also be at the table, and also there should definitely be representation from the residents and from the families of those who cannot speak for themselves.
I agree that what I'm proposing in terms of national standards does touch upon what Kathy was referring to. My idea is that regardless of the type of home a senior chooses to live in, long-term care is just one option of many. There should be consistency across the country. It's been very frustrating for me and for many families—I have friends in other parts of Canada, and we compare notes—how disparate the quality of care is for our seniors. It was almost as though we were in 13 different countries instead of one country.
View Rosemarie Falk Profile
CPC (SK)
I do want to take note of your remarks.
You made mention of families and how important it is to not shut them out. From my background and experience of having worked in a medical facility, when it comes to people who are being hospitalized, I know how important it is to not fall into that institutionalization lull. It's something that you referred to when you spoke of your mother not having that constant stimulation every day.
I think what's so important is how much our families do in the caregiving role. It's not just that they're actively doing things, but they're also advocating. Family members and close friends—the ones who go and visit loved ones—are the biggest advocates and sometimes the loudest voices. I wanted to note that I think those activities are really important and valid to mention.
With regard to staffing, in my role as shadow minister for seniors, I've heard a lot of testimony on staffing shortages. In your experience, how have staffing shortages impacted the quality of care that you've seen, specifically for seniors in long-term care homes?
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 15:59
The biggest example is the fact that my mom has a stage 4 bedsore. When it happened, it was in the three weeks while the families were being locked out. The home and the various people at the table knew that we had a shortage of nurses, specifically of registered nurses, so it wasn't like 200 people were in their rooms and we miraculously had a huge contingent of extra staff to help provide that level of care for each of these residents. They had to make do with the staffing levels that they had, even with the use of agency staff. The problem with having agency staff is that they don't know the residents very well.
View Rosemarie Falk Profile
CPC (SK)
There's a rapport with that, right, when you have that relationship? You know what they like, what they don't like and how to communicate, and that goes a long way.
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 15:59
A lot of my advocacy is not to attack the staff. The staff have done the best that they can, but they're in a no-win situation. The funding levels and staffing ratios are completely inadequate to provide the level of care that our seniors need, especially in long-term care, where the average age of seniors is 80. Many of them have dementia, and they need specific types of care.
View Rosemarie Falk Profile
CPC (SK)
This is where I'm also leery. I know the government has talked about bringing in new penalties for caregivers. This is what I'm not okay with, because if we have residents who live in a home and there isn't the capacity—there are staffing shortages—I don't think it's okay to penalize somebody because they physically cannot do the workload. There clearly is a staffing issue.
I also wanted to make a note about mental health. Could you share at all, in your experience, how seniors you've witnessed have been impacted? How has their mental health being impacted, living in long-term care throughout this pandemic?
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 16:01
Again, my mom was engaged and she was talking. She's not talking now. With many of the other residents, it was disheartening to watch those who were mobile and conversable. They are now less so than they were. They now need assistance with feeding. They need to be engaged, or they can't engage and you try to talk to them and they're confused, because they were also getting mixed messages.
During the lockdown, in my mom's home many of the residents were kept in their rooms 24-7. Even the ones who tried to get out of their rooms were constantly being told not to and being pushed back into their rooms. Once things started stabilizing and the residents were allowed to go out, they were petrified. They stayed in their rooms, and the staff would turn around and say, “Well, the residents don't want to come out.” They had been trained not to come out. They had so many negative messages that now they stayed in their rooms, but that just increases their isolation and their decline.
View Kate Young Profile
Lib. (ON)
View Kate Young Profile
2021-06-22 16:02
Thank you very much to both of our witnesses today. That was gripping testimony, especially from Ms. Oko, hearing about her experiences with her mother and what she had gone through.
My father died in a long-term care facility eight years ago, before COVID. Knowing the challenges that he faced in a long-term care facility, even that long ago—things have only gotten worse and worse through COVID—I really do feel for you, and can't imagine what it must have been like.
You talked about wanting to raise the profile of families and this idea of having a family council for people to listen to the concerns of residents.
Do you think that should be regulated as a part of long-term care standards? Is that needed, or is that something that the families of residents themselves have to really push for?
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 16:03
In response to that question, I feel it needs to be regulated. In Ontario, it is part of the Long-Term Care Homes Act. However, in B.C.—I have friends in B.C.—there is no such act and there is no such thing as a family council. What families have had to do, my friends included, is come together and create their own quasi-family council groups through Facebook. Families were connecting to provide support and share resources.
Even in Ontario, where it's regulated, the idea of a family council is not always respected within ever single home. There are some homes that work very well with a family council, and then there are some homes that do not want to work with a family council. They feel that they don't understand it. They feel that it's just extra work. They feel that they're doing what they need to do to take care of the residents.
Again, the majority of the residents who are in long-term care have some form of dementia or cognitive disability. Even though many of the homes have a residents council, they cannot effectively communicate on behalf of themselves, because they're in fear that if they speak out too negatively, there will be ramifications imposed against them.
I have families within my own family council that are afraid to speak out because they feel that the quality of care their loved one will be getting will decline.
View Louise Chabot Profile
BQ (QC)
Thank you, Mr. Chair.
I thank the witnesses.
The Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities is conducting this study on the realities experienced by seniors during the worst of the pandemic. However, some of the issues were already there, long before we began our work. We can discuss the living conditions of our seniors in a comprehensive way, from a financial, social or health perspective.
Ms. Oko, unfortunately, many seniors in residences are experiencing a situation like yours and your mother's. The same thing happened in some Quebec facilities. I would not lump all public seniors' care facilities together, because we also saw some good examples and good practices during the pandemic. However, the pandemic snuck up on us, and every province took steps to deal with it, to the best of their abilities. At times, it was painful for seniors, their loved ones and their families.
They had to take action to protect seniors, including preventing their loved ones from visiting them, and you're absolutely right that isolation had a variety of effects. Thank you for your testimony, even though it was difficult. I feel it reflects the glaring testimonies of people across Canada, depending on the network.
On the other hand, I have to say with all due respect that I'm skeptical of one solution that you seem to be putting forward, which is national standards that would come from Ottawa to regulate what's done in each province. I could tell you about the countless standards that we have in Quebec for our institutions and the organization of health care. These are choices we have made, particularly with respect to the number of attendants per patient. I don't believe that can be governed by a national policy that would apply uniformly. I have a very hard time believing that it will fix the situation.
However, you mentioned something that we believe is important. You talked about underfunding with respect to personnel. So it's the underfunding [Technical difficulty] of the provinces, which have the skills to organize health care, because it's a provincial jurisdiction. So Ottawa has to contribute. The Ontario and Quebec governments had one request for the federal government: significantly increase health transfers so that the federal share of funding for expenditures meets the needs of the provinces so they can deliver services.
How do you feel about the position of the Ontario and Quebec governments and others? Does Ottawa need to make a bigger contribution?
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 16:13
When I made the suggestion about national standards for long-term care, my point was not that Ottawa would be dictating the quality of standards that would be imposed for each of the provinces. What I feel is that, yes, the federal government has an obligation to provide funding to each of the provinces, but they should also be working with each of the provinces, and why not use the best of what has worked in each of the provinces for the benefit of all Canadians who are living across Canada?
To your point, it is very different. As an example, right now I can go to see my mom, but I need to take a PCR test weekly, and I've had to do this since August. I'm fully vaccinated; my mom is fully vaccinated. In addition to the PCR test, I also have to do a rapid test, and then, once I'm in the home, I have to wear a surgical mask and a face shield. In Quebec, based on friends I've spoken to, there is no need to do a PCR test and there's no need to do a rapid test. All they have to do is wear full PPE. In B.C., they don't have to do a rapid test or a PCR test, and the only thing they have to wear is a surgical mask. Why is there a difference?
I'm at a point where, throughout this pandemic, if I could, I would have moved my mom from province to province depending on what was going on and working best for those seniors at that time. Why should I be in that situation? Why should families be put in that situation? We care, we love our loved one, we want them to have the best quality of care, and I feel that the provinces cannot expect to have a blank cheque providing funding to them without any kind of strings attached.
Each of you represent our various provinces, and I feel that each of you working as leaders can work with our provinces to try to find a solution that will be equitable and fair for all of our seniors across the country.
View Raquel Dancho Profile
CPC (MB)
Thank you, Chair.
Thank you, witnesses, for your testimony. I found it very heartfelt, and we could tell that pursuing better and dignified care that is compassionate and considerate for those in long-term care is very personal to you and a passion of yours.
Obviously this year we've seen that there is an incredible need. It really feels as though it's lifted the veil for Canadians to see how [Technical difficulty—Editor] with home care, as you, Ms. Majowski, had touched on, as had Ms. Oko with regard to long-term care.
I have a question for each of you.
First, Ms. Oko, in some of the answers to other questions today you talked about isolation and the impact on your mother's health. We heard something similar in previous testimony as well. One witness told us that there is a measurable decline in physical and mental ability for seniors in long-term care after prolonged isolation.
Also, I really appreciate how you laid out your remarks. There were the three problems and the four solutions. That was excellent. For the purposes of my question, could you outline a little bit further how you saw grave impacts from that isolation and potential solutions to that?
Mary Oko
View Mary Oko Profile
Mary Oko
2021-06-22 16:23
In the case of my mom, my mom was somewhat engaged. She did talk. When music was being played, she would readily clap her hands—not that she understood what was going on, but she had energy. Now when I visit with her, she sleeps most of the time. When she is awake, I can't get her to talk to me, or when I play music, she's just lying in bed. She's not engaged. I play-act. I have musical instruments. I play YouTube clips of polka music consistently while I'm dancing around the room. I can't get anything out of her. This is after just five months of isolation. I have good days and bad days, and a lot of days, unfortunately, they are bad: I'm there for maybe six or seven hours, and she's awake for maybe an hour. This is a woman who was walking with a walker in December.
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