health

COVID-19: What I’ve Learned from Outbreaks at Mom’s Personal Care Homes

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It’s no secret that personal care homes have been severely affected by the COVID-19 pandemic. News stories from across the country highlighted significant flaws in the care and management of nursing homes in the early stages of the pandemic. This resulted in numerous outbreaks in several homes throughout the country with tragic outcomes.

Since the news first broke about the inadequate care in PCHs that led to the widespread outbreaks in many homes in 2020, there has been a very guarded and cautious approach at almost all long-term care centres to make sure these tragedies don’t happen again.

As the world opens and society goes back to pre-pandemic normalcy, long term care facilities keep many restrictions in place in an attempt to protect the residents.

For-Profit Care Home COVID-19 Restrictions

In the first, for profit care centre Mom was admitted to, the administrator proudly boasted their facility had the strictest COVID-19 protocols in the province. When mom first arrived at the centre, she was quarantined for 14 days, a standard practice with nursing homes. After the quarantine period, Mom was only allowed two designated visitors, my brother and I, to visit her. We had to take the home’s mandatory COVID-19 training session to see her. If we didn’t attend this session, we were not allowed in the building. Visitation was only allowed every second day Monday to Friday between the hours of 11:30 am to 1pm and 4:30 to 6:30 pm. We were screened upon entrance and forced to wear masks and face shields during our visit. If we didn’t follow the protocols, we were not allowed into the building. Her stay at this for-profit place was not during a public outbreak. In fact, public case counts were on the decline and society had already eased almost all of the public restrictions.

After the first month, she was allowed to see other friends and family. Visitors had to book an appointment and were restricted to visiting Mom in a room on the main floor. Staff monitored closely, often walking into the room during the 30-minute visit to ensure all visitors kept their face shields and masks on. Visitors who didn’t follow the rules were not allowed back into the building.

Despite the overly strict protocols in place at the profitable PCH, they had two separate COVID-19 outbreaks among patients and staff during the six weeks Mom stayed there. Sadly, one patient died during the second outbreak.

Government Run Centre’s COVID-19 Protocols

The government run facility my mom and sister are currently residing in now also has strict policies in place. Two people are allowed to visit at a time between 11 am to 7 pm weekdays and 9 am to 5 pm weekends. Visitors can only visit with their loved ones in their rooms or outside in the home’s enclosed garden. Visitors are screened upon entering the facility to make sure they are not symptomatic, exposed to COVID, travelled recently out of country or told to isolate. Masks are mandatory.

Three weeks ago, two residents on one of the three units started to display COVID symptoms.  The PCH went into immediate lockdown while they tested the residents. Family, friends, and outsiders were not allowed to visit the facility and residents were isolated to their units and rooms only.  It was soon confirmed that the two individuals had COVID and the facility has been under lockdown ever since.

Despite the strict lockdown policies put in place immediately, the virus spread. So far, eight people have contracted the virus from two different units.

Mom has COVID

Mom is one of the eight. She started displaying symptoms a week ago and was tested immediately. The second test confirmed she was COVID positive.

We worried about her having the virus because she is older and has comorbidities. COVID is one of those viruses that is unpredictable. We’ve had COVID in my house and know friends, family, and coworkers who have had COVID. While there are standard symptoms of the virus, everyone reacts differently so you don’t know from one person to the next how the virus is going to affect them in the short and long term.

Mom received excellent care and after a few days of severe symptoms, started feeling better. It’s been a week now since her first symptoms and while she’s still weak and has minimal appetite, the worst of the symptoms have passed. 

Closure and Spread of the Virus

Despite the closure of the government run PCH to the public, the virus has spread to two separate units. It has gone from two possible cases to eight confirmed and two possible cases. The PCH has less than 80 people residing there so, while the case counts seem low, the population is also lower than most facilities.

COVID and My Sister

My sister, who resides in the same home on a different unit, has not contracted COVID-19 thankfully. It has not made its way to her ward to date. With her severe health issues, we worry about how the virus would affect her.

A Few Observations About COVID-19 Protocols

Despite the strict COVID-19 protocols that personal care homes have, both facilities have experienced outbreaks. While my mom and sister were not in a nursing home during the height of the pandemic, my sister was in and out of hospitals since March 2020. The difference in restrictions between hospitals and nursing homes is noticeable.  While personal protective equipment and screening were still in place, visitation rules were not as strict.

While I agree that residents in personal care homes must be protected, I wonder how effective the strict restrictions are in actually keeping the virus out. In both facilities, it was not family and friends that spread the virus. The public was banned from visiting the nursing home three weeks ago as soon as the first two residents showed symptoms of COVID. Yet, despite the lockdown, the virus has spread to two out of three units. Eight residents out of 80 have contracted the virus and two were symptomatic as of three days ago.

It’s hard not to question the effectiveness of the policies since the virus is still getting into the facility and spreading despite strict restrictions and lockdown policies. If personal care homes want to protect their residents from this and other viruses, I would like the care centre to re-evaluate their policies and create guidelines that protect those residing in the homes without isolating and segregating them from their loved ones.

When Mom first contracted COVID, she commented how, even once she’s better, she won’t be going home. That was heartbreaking to hear. Like many residents, she mourns the life and home she has lost. For those of us who have never been forced from our homes, it’s hard to understand the grief that comes with moving into a healthcare facility. We take our life for granted without truly realizing how easily and quickly we can lose it.

After Mom’s test confirmed she had COVID, her roommate was moved to another room almost immediately to protect her from the virus. While understandable, I question why the nursing home staff reacted so quickly to protect a resident from the virus but did not take the same response to protect my mom from abuse.

As I wrote in my last blog, my mom was verbally and physically abused by a roommate in both care homes she stayed at. In both situations, staff heard and saw the abuse but did not do anything until my brother and I threatened to call the police. Despite zero tolerance policies in place at personal care homes, staff did not respond in either situation to protect Mom until we threatened police involvement. Yet they quickly and strategically protect residents from the COVID-19 virus. I find the difference in their response between a virus and abuse shocking and inexcusable. I’ve tried contacting the home’s social worker to further discuss this but so far have not spoken to her.

Closing Thoughts

I have observed firsthand how personal care homes respond to COVID-19 through my family’s own personal experiences and those experiences shared by friends and colleagues who have loved ones in care homes throughout the city and country. I appreciate and respect the attempts to protect adults residing in personal care homes from the COVID-19 virus, but, after seeing how easily and quickly the virus gets into care homes and spreads, despite the rigid policies, I question how effective those restrictions really are.

Not only has the virus spread despite the lockdown, but the restrictions also affect the mental, emotional, and physical health of the residents. Aside from being separated from their loved ones, residents are not allowed to leave their rooms so they can’t visit with each other. Because they can’t leave their room, they are not allowed a weekly bath or shower nor do not get their physiotherapy or reactional activities. They just sit alone in their room. Mom has a TV and phone, and my sister has her phone. That helps break the monotony of the day. However, many residents don’t have devices, so they just sit.  I don’t need a degree to recognize how unhealthy that is.

I’ve also noticed the stark difference in the type of care residents receive in homes. I’m grateful for the immediate and aggressive medical care Mom received when she was first diagnosed. It made a significant difference in how she felt during the worst days and her recovery. I have seen this not only when my mom got COVID, but also in my sister’s ongoing care since she has moved into this personal care centre. Without question, the medical care is fantastic. But the same cannot be said for their rehabilitative care response to their own policies around abuse. As both places have stated, they do anything unless family get involved and say something. That’s not acceptable.

Mom never contracted COVID living in her own home. She had control over where and when she went out, so she could control her own level of risk and exposure. She has no control over the risk factors in the nursing home.

As someone who believes that not all senior’s should be automatically panelled into a personal care home when they lose their ability to live independently, I believe that this is yet another reason why we as a society need to develop strategies of care so senior’s can remain in their homes and communities for as long as possible.

Getting older should not be a life sentence into an institution. Other countries have implemented changes in housing and home care so seniors can stay in their home and community for as long as possible. There are proven benefits to keeping people in their homes and out of care centres.

My province is working on implementing change. I will continue to do my part to advocate for change in our current system for our aging population.

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I’m a Mixed Bag of Emotions Over My Sister Moving to a Personal Care Home

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Mixed emotions

My sister moved into the personal care home on Monday. I’m happy to report everything went smoothly and she’s feeling good about the change.  She was discharged from the hospital at 10:00 am and transferred to the care home where her husband met her to complete the admissions process. Once alle the paperwork was finalized, administrator, helped her settle into her new room and meet her roommate and some of the staff.

Like many care homes here, there are less single person rooms than shared rooms available, so most residents share a room when they are first admitted. Once someone moves into the facility, they are put on a waiting list for an individual room and eventually moved.

As a new admission, my sister is also on a mandatory 14-day COVID-19 quarantine period. She can’t leave her room for the next two weeks, but people can visit her. I went to see her later Monday afternoon to see how she was doing.

I haven’t seen her since early July, so it was nice to finally sit and chat in person again. Between my own busy schedule, visitation hour times, COVID-19 restrictions that are still in place in certain wards and facilities, and distance from the hospitals to my home, visiting her wasn’t easy.

As I drove to the care home to visit Mom first then my sister, I felt relieved that the rollercoaster of frequent hospital admissions and discharges she’s been on for the last 30 months is finally over. Now that she is in a more permanent place, my sister will finally have the stability, routine and ongoing care that she’s needed for a long time. It’s a relief knowing she won’t be going through the endless turmoil that was jeopardizing her health and life further anymore. Before this admission, every time she was rushed back to a hospital after a short stay in her home, we never knew if she was going to live or die. There were many stress filled days of uncertainty and fear. Knowing that part of hers and our journey was finally over was a positive thing.

But as I sat talking to my sister, grateful that she is still here and finally where she needs to be, I also felt a deep sense of sadness that I didn’t expect. I’ve been so focused on trying to make sure she received the ongoing and proper care she needs, I never thought about what that would actually look like.

And now, here we were, late Monday afternoon, sitting in the care home room she would now call hers and talking about the day’s events, personal care items she still needed, what we could get to personalize her side of the room, and her ongoing health issues. As I sat look at and listening to her, all I could feel was complete sadness.

Adding to my sorrow was her physical appearance. She doesn’t even look like the sister I’ve known all my life anymore. Disease and continued poor health, the permanent effects of the strokes, and the side-effects from the medications she is on have changed her appearance and physical abilities drastically. Her face and body are swollen from the fluid retention, her hair needed to be cut, her fluid filled arms lay limply across her wheelchair tray and the ravages of the last few years have aged her far beyond her years. It’s hard seeing someone so young, she’s only in her late 50’s, in such declined state.

As I sat there listening to her slowed speech, I couldn’t help but wonder if at a subconscious level, she regrets the decisions she has made. My sister’s health decline is completely self-inflicted.  As I mentioned in my last blog, she and her husband spent most of their nearly 30 years’ marriage living a horrible lifestyle where exercise and healthy eating were almost non-existent. The decades of eating a horrible diet of processed and fast food almost daily has taken its toll on both of their health.

But if I’m honest, asking even her subconscious would likely be fruitless. My sister has known for years that if she continued to neglect her health, she would suffer the consequences. I remember talks we had about the importance of maintaining a healthy diet and exercise regularly was when she was first diagnosed with diabetes 20 years ago, but her response was always “I know, I know”. She would never take mine or other’s concerns seriously.

When she first started having health problems several years ago, doctors warned her of the more serious consequences she would face if she didn’t take better care of herself. She still didn’t listen and, after years of the same poor diet and lifestyle habits, it’s finally taken its toll.  

Denial and the belief that ‘it will never happen to me’ are strong dictators that have far too much influence on many people’s lives and my sister is no exception. Thankfully, she is finally in a facility that will regulate her diet. For that, I’m very grateful.

As I sat there talking to her, I remembered the last trip we went on three years ago and the trips we wanted to go on in the future. I remembered the shopping trips, family gatherings, dinners, and get-together’s she used to enjoy. I remembered how much she and Mom used to enjoy going to play Bingo every week and her dogs that she adored but had to be rehomed due to her declining health. I remembered the happy, lively person she once was. That person is gone. She will never enjoy a life of independence and choice again and that realization filled me with a deep sorrow. It’s such an unnecessary loss. I can’t even begin to imagine losing everything I love so much about life.   

But for all the relief, gratitude, frustration, worry, stress and sorrow that I have and continue to feel, there are many emotions I don’t feel. I don’t feel angry, bitter, resentful or disgusted at my sister or her unhealthy life choices that resulted in her current situation. But I also don’t feel sympathetic or pity for her circumstances either. I know she’s done this to herself and no warnings, words of advice or supports changed her behaviour. She’s living with the consequences of her decisions, she is reaping what she has sewn and it’s just sad.

As I adjust to having two family members in the same personal care home, I’m filled with many mixed emotions. From relief that my mom and sister are both safe, happiness that they can finally see each other again, gratitude that they are both still here with us, to resignation that they both are now living in a personal care facility, helpless to stop these changes, and sadness for the lives of independence, good health, and freedom of personal choice in their own home and community are forever gone.  

Age vs Need in Personal Care Home Admissions, A Personal Experience

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I got a phone call Friday from my mom’s personal care home to inform me that my sister has now been accepted and would be moving into the facility on Monday. In a couple of days, and within the span of less than six months, we will have two family members living in the same care home.

The difference between the two situations is very notable. Mom had a stroke last December. It affected her right side as well as her short term and work memory.  Last March, the medical staff at the rehab hospital she was admitted to deemed it mandatory that Mom spend the rest of her life in a personal care home. Their rationale was that her short and working memory impairments made it too unsafe for her to live in her apartment without 24-hour supervision.

To give some history, six weeks after her stroke, Mom spent ten weeks at stroke rehab hospital where she participated in regular physical, occupational and speech therapy sessions. She learned to walk again using a walker, was working on improving her memory impairments and was strengthening the right side of her body while learning to write with and use her left hand more.

Yet, despite surpassing staff expectations with her improvements and accomplishments, the medical team informed us during the family planning meeting that Mom needed to be panelled into a personal care home. The professionals stated that her working and short-term memory loss made it impossible for Mom to live safely on her own.

As a family, we were devastated. We had fully expected Mom to go back to her own apartment and were planning the post-hospital supports that she would need. After we were told that she would need to move into a care home, we still tried to come up with alternative options so Mom could remain in her apartment. However, we were always met with resistance and refusal by the medical team. During one conversation with the social worker, I was told that I was not facing reality. She informed me that I needed to accept their decision that Mom needed to be in a care home because there was no other alternative.

I cried often. Having worked in personal care homes during my late teens and early 20s, I had vowed that Mom would never live in a care home. And now, several years later, I was helpless to stop it.

It’s also extremely hard on her grandsons. To know that they could never visit Grandma in her home again was difficult to accept. As grateful as we are that Mom is still with us, we mourn the life she has lost. As a family, we used to spend every Friday night at Mom’s. It was a ritual that we have been doing for years. But that’s another blog for another day.

My sister’s situation is different. Decades of poor lifestyle and dietary choices have caught up with her. In March 2020, my sister had her first stroke. Since then, she has had nine strokes. She also has Congestive Heart Failure and is in the early stages of renal failure and will eventually need dialysis.

There has been an ongoing pattern since her first stroke in March 2020. She’ll spend several months in a hospital. Once her health is stabilized, hospital staff discharge her home with homecare. She’s home for less than two months before ending up in a hospital again because she’s had another stroke or other life-threatening incident. Every time she is admitted, it is to a different hospital with different staff looking at different medical conditions and medications who then prescribe different treatments and medication changes. Once her immediate health needs are stable, she is discharged home once again. While these measures have resulted in short term stabilization, her health has steadily declined with each stroke and hospital admission.

This past spring, two years after this ordeal started, my sister had her eighth stroke while at home. She spent four months in the hospital. During her stay, she had her nineth stroke. The damage is very notable and permanent. She has limited mobility and requires full assistance for all her personal care including dressing, washing, hair and teeth-brushing and eating. She has difficulty speaking, memory and critical thinking impairments and is partially blind. She cannot change positions in bed, sit up, get out of bed, stand, or take a step without assistance. She requires a wheelchair to get around.

With all her ongoing health issues, my sister needs to be in a facility where she has 24-hour medical care. So during her family planning meeting during her last hospital stay prior, I spoke openly about her needs and requirements. Don’t get me wrong, I don’t want my sister in a personal care home and if there was another option, I would have been in full support of her living in the community instead of a care home. After all, she is only in her mid 50’s, she’s young.  But we have been living through this for well over two years. The current plan does not work. It has failed her every time. My sister, myself and the family realize that for my sister to live as long as possible and have the highest quality of life, it can only happen if she is in a place where she has round-the-clock care.

Despite my input and knowledge, the healthcare team at the hospital was determined my sister was going home to the same care plan. They had no interest in listening to our concerns and fully expected her family and husband to attend to all her needs. The social worker even asked why I couldn’t go to my sister’s place every day to help her. The fact that I have a full time job and my own home and family to look after meant little.

After my sister was discharged from the hospital, she lasted four days at home before being rushed to the hospital again. So, after two and half years of this roller coaster, my sister has been panelled for a personal care home. The social worker who was part of the health care team that was adamant that my sister go home received an unpleasant voicemail message from me.

There are very clear differences between my mom’s situation vs my sister’s. Mom was panelled immediately but it took well over two years and near death for the healthcare professionals to panel my sister. My sister’s physical and medical needs have always been greater than my moms. The other significant difference is age. Mom is 20 years older than her daughter.  

Our family has experienced firsthand the system’s ageism. Despite my sister’s more serious medical needs, the healthcare professionals would not admit that she needed more care than what was offered in the community. This is a very stark contrast to the care and planning Mom received. In her case, the healthcare team saw a personal care home admission as her only option and refused to discuss other community-based alternatives.  According to the Canadian Institute for Health Information, one in nine seniors living in personal care homes could have remained in their own home with the right supports system. As a family, we fully believe Mom was the one in nine.