On March 14th, I received a phone call advising that I would no longer be able to enter the nursing facility where my mother has resided for just over a year. This action was expected due to COVID-19 and its effect on the elderly. I made arrangements to do window visits, at a time convenient to them. Every morning, I have visited my Mom communicating through a window. The great staff either hold a phone to her ear or put it on speaker phone so I can try and converse with her.

Initially, I supported the lock out. However, as time has gone on, it has become abundantly clear that COVID-19 will remain with us. About a month ago, I began questioning the effect and rationale of the lock out, as I have seen with my eyes and heard with my ears, the deterioration that this long term lockout has had on my Mom from a physical and cognitive view. Conversation is now very limited and the only time I receive a smile is when I sing the song “ You Are My Sunshine” totally out of tune. I do apologize to the staff for that!

I asked to be considered an essential visitor, that request was denied by Arnprior Regional Health, to keep the residents safe. As well I was advised, they consider, that my Mom’s medical condition is stable as she has not dropped on the palliative performance scale. I disagree and maintain that she has definitely deteriorated.

Ontario Premier Ford has brought in the Army, students, school staff. These are total strangers who do not know our loved ones. They will not, for example, know to bring your family up in conversation which helps loved ones remember their family. My sister advised when she did a video call that my Mom no longer recognized her.

I struggle every single day now with having had to place my mom in a facility that would then lock out family support for months at this stage of her life. I truly believe that there is an emotional/psychological component of health care that has been overlooked in this pandemic. In Ontario’s 2005 Pandemic Influenza plan preparedness, the Ministry of Health and Long Term Care wrote “complete closure of visitation is not recommended as it may cause emotion hardship to residents “ (page 41). The lack of contact with their support care person is especially traumatic for those with Dementia. At this stage of our loved ones life there must be a balance between safety and quality of life. To deny a resident the support they need from their care partner is cruel and inhumane. I am not an infection vector and will go above and beyond to keep my loved one and other residents safe.

The horrors of the deaths of loved ones in long term care across Canada needs an inquiry. The signs were there from Europe and first cases in B.C. that immediate action was required. Instead systemic long prevailing issues were suddenly more exposed. Each death matters and we have to do be better.

There is a quote from Sally Knocker, who thinks person-centred care for Dementia matters more now than ever before: “Is it not our ultimate goal as care providers to preserve quality of life, not just life itself?” To me, quality of life for my Mom means the presence of family support through her end of life journey.

I realize my view may not be the view of others and that is OKAY as we are all on different journeys. I hope one day soon, the health care system will recognize the contribution of family care partners in their loved ones lives, and allow us to find the balance between safety and quality of life.

Susan M.