By Marlene Moorman
Marlene Moorman is a retired Registered Nurse from Saskatoon, Saskatchewan.
Most of what I know about long-term care (LTC) is from my personal experience and through my friends’ stories and efforts in the Saskatchewan LTC Network. Although I worked most of my career in labour and delivery, I did work in a LTC home in the early 90s and have some positive memories of that experience. My “go to” back then for figuring out how to relate to the residents was, “what if this was my mom or dad?” It gave me a degree of insight and made me more understanding. At that time, I didn’t think about it too much but as time passed, my family’s need for LTC became immanent.
I remember Mom saying to me, “I want to age gracefully,” when she was in her 70’s. What a loaded statement! My parents did age gracefully—downsizing to an assisted living condo before they really had to and moving back to the city where I lived as well. It was an ideal situation us all. Shortly after turning 90, Mom became very ill and spent about 6 weeks in the hospital recovering from sepsis and pneumonia. She also had congestive heart failure and was palliative once she left the hospital.
Making decisions about LTC is never easy—in fact I think I can safely say it is always complex. We were so pleased to get Mom into the care home attached to the condo where my parents lived. My Dad spent the days with her, and I was able to spend some time there most days. For Mom, “palliative” was 11 months. During that time, my dad started showing more signs of dementia. Mom saw the changes starting in Dad before I recognized them. Over the next couple of years Dad grew more and more forgetful and would often say “my head is just so mixed up.” I was able to drop in on him daily and it seemed that we had a handle in him aging at home, until we had a planned family vacation in February 2020.
With no one able to see him daily, we put Dad in a respite bed in a facility in my sister’s hometown. Although he was a bit apprehensive about it, he was agreeable. Two weeks later, when we got home after our vacation, he had lost all his memories of having another place. This was home for him now, and he went from respite to resident. Dad was content. The facility was lovely, and it was still complex for me, because I had a 2.5 hour drive to go see him—an adjustment from the 5-minute drive I was used to.
I bet you know what comes next—Covid-19. Unable to go into the facility, we would do window visits. If you haven’t had the pleasure, imagine trying to have a conversation with a person who is confused and hard of hearing over the phone, through a window, in a prairie wind. Each conversation was and still is consistent. He would say “I have a funny question to ask, but where’s Mama?” We try to talk about the good memories, and not focus on current events, because it’s hard for him to realize how much he forgets. Each time I stood at his window he would say “I just don’t get it, no one is sick in here!” He wanted us to come in, but that couldn’t happen. Even leaving a gift or his mail proved to be difficult, as there is a holding period, and I couldn’t tell if it ever registered for him who the gifts are from or why he received them.
When summer came and outdoor visits were allowed, it felt like Christmas. Still, there were challenges, because it makes no sense to his mind that we had to stay 6 feet apart, especially since he has trouble hearing. Some days he would back me up across the yard as he kept trying to get closer! For a time, we could visit indoors, but in a sterile room just inside the doors with only a card table and two chairs. I appreciate that this would facilitate easy cleaning, but it does nothing to facilitate conversation and evoke memories. Each conversation was still the same, answering questions that still bother him, like “Where is Mama?”
As time went on, we have been able to arrange Zoom meetings that the staff help Dad to access. This has been a great improvement, and the questions have changed a little bit. Now my siblings and I are each asked where we are, and there is general marveling at the wonders of technology. This is a highlight of my week—occasionally we are even treated to my Dad playing his guitar and singing for us, and for a moment I can see the Dad I miss so much.
Our health authority standards here in Saskatchewan state that family presence is allowed for residents whose needs are not being met, or that are deteriorating, but our governments’ restrictions don’t recognize this. Dad’s cognitive scores have shown clear decline, but because he is otherwise healthy and independent, we still stand on the other side of the window or the other end of the Zoom call.
Loss of cognition, health, mobility, friends, and independence is hard enough. I truly believe it is unjust to take away family support too if there is someone to give it. I think this can only be accomplished by rewiring our thinking about LTC. We need to view LTC not as a home, but as their home. Part of that is finding the balance between love and risk management. Personally (and I realize I am fortunate to be retired) I would practice a very careful lifestyle and comply with all PPE requirements at Dad’s home to be able to hang out with him. To sit with him in his room, and share stories, and coffee and hugs, would be amazing—I would be there in a heartbeat. I am hopeful that with vaccinations happening now, it will become a reality soon, but this lost year must never be repeated.
So, how do you find support when you are in a situation like this pandemic? For me, getting involved with a group of people who care about the situation was key. The Sask LTC Network has been a lifeline, with other family members, clinicians, researchers, and trainees working together to provide evidence and experience-based strategies to inform LTC stakeholders. We believe that fostering strong resident, family, staff, and decision-maker relationships is integral to the pandemic response and recovery process. Even though I know most of these people only on a computer screen they have become important in my life and there is solidarity and hope knowing there are others who care about the same issues I face.
Overall, we need to be willing to step outside our comfort zones and be part of the change. I have been all too willing to watch others do the work and nod or shake my head at their efforts, but I think the time has come to help build a better framework for the future of LTC.