When I Needed a Caregiver – Part II

Jessica Mattila, MSW, LCSW

Since I started writing these articles in September 2024, I have been reflecting on my cancer diagnosis and treatment and the parallels it shares with the caregiving journey our clients (and countless millions across the world) have undertaken. 

The diagnosis – whether it be cancer, dementia, or an acute event like a stroke - carries weight and signifies a change from what a person was and the life they imagined onto a different trajectory. I am not trying to simplify all diagnoses as going on the same journey; I am grateful that with an early diagnosis and continued treatment, my chance of a cancer recurrence is less than 10%. I struggle with the unknown. “What if it comes back after all, anyway?” But that’s for another article. An expected life trajectory shift is significant and comes for us all. 

 As a caregiver or someone needing care, I hear about all the decisions that need to be made. Who are the helpers? Will they provide emotional, planning, fiscal, and physical care support? Will the help be long-distance or at home? How long can their support last? 

After the weight of the diagnosis had settled in, it was time to plan for my surgery and recovery. I have one younger sister, who is my ride-or-die best friend. Without hesitation, she agreed to fly out from Arkansas, where she lives with her husband and two small children, and stay with me for two weeks. 

I thought about how much time I wanted to take for medical leave and many other choices for my care. As a caregiver or someone needing care, I hear about all the decisions that need to be made. Who are the helpers? Will they provide emotional, planning, fiscal, and physical care support? Will the help be long-distance or at home? How long can their support last? 

I had never had surgery before, and I had never had a body part or organ removed. I was exploring uncharted territory. 

Caregiving parallels other types of major life experiences like partnerships and child-rearing. You can read about others’ experiences to your heart’s content (and it helps!), but you will never truly know how you'll handle a challenge or role shift in life until you embark on it.

I was surprised at how calm and slightly euphoric I felt the day of my surgery. I had shed so many tears leading up to that day that I think my body released endorphins to give me a little peace before the big event. Here, I feel a slight shift in my experience with that of a typical caregiver. I had an event to pragmatically and emotionally prepare for – a mastectomy. After a diagnosis or an acknowledgment that someone’s cognition has shifted beyond an age-related way, it can be a challenge to round up support and awareness for the journey ahead. I had a time and date planned, and my body would forever be different – a clear signal that I would need support!

In the next article, I’ll delve into the disorientation and vulnerability I felt after the surgery – and how the caregivers in my life helped me stay tethered and grounded to my new reality.