The Brain Tumour Foundation of Canada recently released their first Caregiver Handbook.
The purpose of the book is to address the specific needs of caregivers when caring for a loved one with a brain tumour.
Over a year ago I was approached to conduct interviews and write the background stories of four caregivers.
My background in public relations and role as a care partner to my husband Adam made me an obvious candidate for this role. For over 3 1/2 years we have been battling glioblastoma, an aggressive form of brain cancer.
I was given four individuals to interview: Theresa, Kyle, Laurie and Karen. Each with their own individual experiences and sound advice to share.
With this one major thing we have in common, we all approached our involvement in the book as hoping to help those who are newly diagnosed and feeling lost.
Theresa and her father were very close. In 2001 he passed away from glioblastoma.
At the time of his illness, Theresa was only in her mid-20s and stepped into the role as his caregiver and advocate.
During her teary recollection she told me about the need to take time off of work to help him and her family cope.
"Being a caregiver was all-consuming," she says, and following her father's death she suffered from post-traumatic stress disorder, insomnia and the inability to focus.
Theresa offers advice to those caring for a parent or loved one. Some of her tips include: the importance of getting respite, accessing a support group and ways to put the patient first.
On a holiday, Kyle and his wife were sharing with one another how they felt "things were going so well" and then she discovered a Grade 3 anaplastic astrocytoma.
Surgery, radiation and chemotherapy followed but the tumour came back a year later. She could no longer care for their young son and Kyle took on the role of primary family caregiver. Working and managing his family and household took a huge toll on him.
He offers tips such as: the importance of developing systems for meals and outsourcing tasks; keeping a journal; and seeking help for yourself.
As a mother to a child who had a brain tumour, Karen recounts the additional stresses that she managed while caring for her daughter. "It was a time of crisis for us," says Karen. "In addition we have another child who we also needed to consider."
Karen offers tips such as: "take help from others" and "practice responsible googling" for research. Her daughter now lives a healthy life and is giving back to the Brain Tumour Foundation through her own fundraising.
Laurie's husband is living with a brain injury which he experienced following surgery. She offers her perspective for finding happiness outside of the brain tumour bubble.
"The first year didn't allow for much time to engage in anything outside of the world of appointments," says Laurie. "Over time I worked to do more activities outside of the house to maintain a sense of self."
She emphasizes the importance of finding a hobby, accessing counselling services and finding happiness to get through the bad days.
And for my own contribution to the caregiver stories, I emphasize to newly diagnosed caregivers that they need to build the best team around them. This includes medical, neighbours, family and friends. They can all help you in different ways and be there for support.
As cliché as it sounds, "Caregivers need care". Feelings of isolation, rage, sadness and exhaustion are common to all of us. We need to maintain our mental and physical health in order to be helpful to our loved one.
And we all have drawn on the resources provided by the Brain Tumour Foundation of Canada for either virtual or in-person support. By connecting to this community, we are reminded that we are not alone in this fight.