Like many people, I did not sign up to spend my days being a caregiver. I did not make allowances in my personal plans to be a caregiver. I did not even consider it when my daughter was diagnosed as a person with a disability. When my husband and I married, I said the words “in sickness and in health” believing that it was specifically for when we were in our old, old age.
Life takes us by surprise and when we love someone, be it a child, a spouse, a parent, a sibling, or a friend; we become what they need. I fell into the role of being a family caregiver. Respectfully, there are many people who make the choice to be the primary caregiver for their loved ones. Many people are fulfilled and find comfort in that.
I was not part of that group.
I was naïve when my daughter was diagnosed as autistic and having cerebral palsy. I thought if I learnt enough, worked hard enough, pre-empted conceivable and inconceivable issues enough, and did everything her education and therapy teams wanted me to do; Savannah would become a person who did not need as much support. Then I could pursue my personal goals.
That did not happen.
Although at twenty-six years old, Savannah has come a long way. She has levels of independence but not enough that she can be left alone for extended periods of time. She is unable to make important decisions by herself. She needs me more than I anticipated.
Still, I achieved some personal goals but often I had to lay my career, hobbies, and interests aside to help Savannah and care for her. Usually, that is not described as being a caregiver but simply mothering. And I loved that. All of it. Even more so when my younger two children were born, and they kept me busy. Mothering was my joy. My husband Michael was the primary breadwinner, and this rhythm suited us for a while.
Yet repeatedly like many families’ life happened. My husband was retrenched twice. At different times in our lives, one of the five of us, sometimes more than one, required medical care in a hospital and faced periods of recovery. We would have to repeatedly find the resolve to work out a new rhythm. After a time, even that became just how life was.
Most recently, my husband was diagnosed with long covid. He had the virus in 2020, and he just never recovered. This has made us feel more isolated than being a family to a person with a disability ever did. When a person has a disability, at least there is information or professionals to seek out for advice and help. With this diagnosis of long covid, we did not even have the vocabulary to explain what my husband was going through and its impact on myself and the children. With limited information available, it feels as if professionals are finding their way in the dark.
I feel the impact of Michael’s illness the most.
In our home with a person with a physical and cognitive disability, it took diligent organisation, physical stamina, and tons of patience to ensure that we helped Savannah to be supported as she needed without compromising the needs of the rest of the family. Our two busy teens, Talisa and Eli (thankfully Talisa is almost an adult), also need us in the same ways Savannah does, but they have the ability to be independent relative to their age and they can exercise self-direction and safety without us.
With Michael’s ongoing illness and complexities, I became his caregiver and his replacement for the children. I consider myself a caregiver to Savannah too because while I am still mothering her, to maintain some boundaries and to give her and myself autonomy, I find it easier to embrace the phrase “family caregiver”. I am still very much her mum, but when describing how we function “caregiver” works better.
Am I overwhelmed? You bet I am. BUT I am not overcome. I am not lost. I am not unsure of myself. I am not giving up all the parts of my life in which I find purpose and joy.
Why?
Because I knew how to pivot, and I knew what pillars I needed to have in place so that I could still carry myself and my family while continuing to engage in work that fulfils me and gives me joy outside of my family. I need both to be okay.
Join me at 8 pm this evening (06 September 2022) on the JoinPanda app where I will share how I learned to define that “balance” for myself. Simply download the app from Google Play (Android) or the App Store (ios), set up your profile and join my session. There are many other important topics being discussed too on a daily basis which are led by amazing people including mental health professionals. This is one app you won’t regret taking up space on your device.
