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.