Sarah Kaplan

I became a caregiver to my husband Carlos in an instant. It was a normal day in 2017 until Carlos collapsed on our way into a grocery store. It took several weeks to find out that he had an infectious disease called toxoplasmosis of the brain. What’s more, the medication he had been prescribed had interfered with a previous kidney transplant and put him in renal failure and on dialysis. That made him sick for a long time.

My caregiving journey has come with many challenges and has taken a significant toll on my mental health. Caring for my husband has been an experience for us of connection to each other.  But the lack of coordination of care has been devastating.  Once we left the hospital, communication between his many specialists fell apart and it was left to me to figure out how to care for him, without any clear directions or the years of medical training received by hospital staff. It all fell on me! I had to learn how to perform significant medical tasks, while also trying to navigate the system.

Caregivers do so much work behind the scenes. I’ve kept Carlos out of the hospital during many illnesses but I am never recognized for this. Most doctors don’t even acknowledge my presence when they walk into an appointment. I like to say that the most important change for caregivers would be to have a “visibility cloak.”

After several years of managing his care, advocating and coordinating programs and services to support Carlos’ progress, the toll on my health was too great and I had to retire in 2021. This was another factor that negatively impacted my mental health, as I felt forced to leave a career I loved. However, it was too much to do everything on my own. I was feeling burnout and like many caregivers, was diagnosed with post-traumatic stress disorder (PTSD) from the lack of support for Carlos and myself.

Since my retirement, I’ve become much better at protecting my mental health and being more present. It is easy to get ahead of yourself and focus on the unknowns. I try to only worry when we know there is something to worry about. I have had to learn that being a caregiver is not my only identity. Yes, it I do care for Carlos but I’m also a mother, an adventurer, a writer; I am many things. It took me a long time to state that with conviction.

I do think I have an opportunity to help make things better for caregivers. I have always been interested in continuous improvement in health care. That’s what I did as part of my career, including a caregiver awareness initiative at our local hospital where I was a healthcare professional for over 20 years. The most important change I would like to see is that caregivers are formally included as part of the healthcare team.

But caregivers cannot do it alone. We are busy providing care and managing our other responsibilities. I am so glad to be connected to CCCE. The Centre is well positioned to lead this advocacy work leveraging the experiences, knowledge and expertise of caregivers across the country. Their support for caregivers in getting their voices into conversations where change is happening, particularly in the healthcare system, will have a profound impact.