Sherrie’s Caregiving Story

“I promised my sister that I would be an advocate for caregivers.”

My sister often said, “For over 12 years, I was never asked by a doctor how I was doing while being a caregiver to my husband.”

This statement will forever be etched in my memory.  

Over the years, my sister always had a look of weariness that seemed to indicate things were too much to bear. She was a caregiver to her husband who was diagnosed with a chronic illness. While she remained his primary source of support, both their lives were changed forever. My sister managed doctors’ appointments, emergencies run, family updates, research on chronic illness, and dealt with her husband’s unmanageable chronic pain. She was living a life of uncertainty and had a constant feeling that weighed her down.

It was hard for my sister to accept their new reality. Their plans to travel after retirement was no longer attainable, their day-to-day life no longer included activities like going to a restaurant with friends or watching a movie together. Although, she tried to find new interests like joining a choir, and learning to play instruments, she still felt unrest and fatigue. 

In 2019, my sister was diagnosed with stage 4 adrenal cancer. Feeling that caregivers are under-supported; her goal was to write a book to share her caregiving experience to help others. She was very determined on finishing her story, but her health suddenly deteriorated. Before my sister passed away, she gave me the gift of her writing. 

As I sit and read my sister’s writing collected over several years, there are some common themes that leap off the pages: fear, guilt, anger, trapped, helplessness, anxiety, sadness, unpredictability, worry, emotional pain, restlessness, wanting to escape this new reality and a loss of the life.

I wished I had listened more, and I promised her that I would try to be an advocate for caregivers in her honour.

My sister’s wish list:

• Health Care Providers can ask the caregiver how they are doing/coping 
• Health Care Providers can offer resources to caregivers (ie. OCO website; caregivers are too busy and often feel overwhelmed to get resources for themselves)
• Regularly talk to other caregivers that understand what you’re going through and can offer advice or be a compassionate listener. 
• See a mental health professional for strategies in dealing with stresses and emotions of this ever-changing role.
• Ask someone outside the immediate care circle for ways to help and organize priorities. 
• Keep an eye on your physical and emotional health. If it feels like too much, it probably is. Take time away for yourself, even if it’s just for a few hours.
• Caregiving can be all-consuming; take care not to lose yourself and your identity. 

My sister and I had a very close relationship, and I knew she valued my support and role as a listener. But as I reflect on my sister’s caregiving journey, I realized she would have benefited early on from connecting and sharing with other caregivers to discuss her stress and concerns about her responsibilities. I believe a team approach is needed in treating the patient while recognizing and supporting the caregiver’s needs throughout the health journey.