This morning I reflect on how it felt to me to be a caregiver. I would do it again because it was the greatest gift I could give. I would however change a few things to better support myself.
I went into my caregiving with my eyes open, love in my heart, hope for a cure and my husband next to me to raise awareness together. I came out broken, empty, defeated and lost.
The first year was my honeymoon year. The year we moved into our dream home Cliff built. He was home from work and puttered around the house. A trip to Disney with the kids, camping a family year of memories and small changes with mobility and weakness.
Maybe this is why no one sits down with you to explain what caregiving really feels like in the midst of it. I would have been horrified and paralyzed.
Year two to four were intense, ever changing and life changing.
We joined a drug study out of Montreal. A monthly trip to the clinic to try a new drug. Was he on the drug or placebo. We dropped out after a year. He had progressed to a wheelchair full time in that year. A 16 hour day to do the round trip. We found it to demanding. We both hoped his participation helped. He was changing weekly. Trying to troubleshoot the changes, adapt our routines and introduce more help. Our family was no longer the four of us, there were PSW’s to support his care while I was at work. Our daughter started counselling because she had worry in her tummy, could not stay focused at school. Appointments to Child Development to see if she had a learning disability. She was only five when her dad got sick.
My husband losing control of his ability to move, speak, swallow. His frustration and anger and some days he lashed out at the one he knew was not going anywhere, me. I am trying very hard to be the glue that keeps us all safe and well. Pulling in the health professionals to support my husband and the kids. I had become the master of the family that was rocking this journey from the outside.
I pushed down any fear, emotion, guilt, anger that arose. There is no time for that. Funny thing, at some point you have to release the pain. I would find places to cry quietly so no one would hear. I wanted to run away some days. Some days I wanted to run into the woods and scream at the top of my lungs or punch a tree. There was so much I was trying to hide.
I was so focused on caregiving, working, family I was some how surprised when I hit my limit. I was the voice and strength for my husband and kids. I had no voice for myself, I was silent.
Year five and six were terrifying, life changing and raw. I had to face the reality no more full time caregiving. My husband admitted to LTC. I was devastated, quilt ridden the most important promise broken, you can die at home. I was now a failure.
I had to make a decision to seek out support and do the intense work to regain my emotional, physical health while part time caregiving and working and raising our children. If I didn’t, how would I navigate my husbands death, the grief and support my children through their loss.
I often sit and wonder how my caregiving experience would have been if in the very beginning I was counselled on the demands of caregiving, the importance of self-care and emotional support from the beginning. The routine would have been part of my caregiving role because it was introduced as a part of the health plan for us both. Would I have avoided hitting the wall, caregiver burnout, loss of myself. I guess I will never know.
I do know that caregivers matter, they need a voice and support.
From this place of love I published my workbook. The tool and companion through every stage. It might be just journaling while in the most intense stage. The worksheets when caregiving is less demanding or in the grief, healing stage. It is how I am giving back and hope in some small way the ability for caregivers to keep their voice strong