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

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

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.