Cancer Caregiver Needs Overlooked for Too Long [Guest Post]
This is a guest post by Marcia Donziger, the founder and Chief Mission Officer of a wonderful website called MyLifeLine that lets you blog, schedule help, learn about your condition and more. Check it out here.
Last month in Denver, I experienced the CancerCon Conference for the first time. Hosted by Stupid Cancer, hundreds of young adults fighting cancer gathered to meet, make new friends, share stories, learn about resources and discover they were not alone.
I was asked to facilitate a workshop on peer support for caregivers – the spouses, parents, children, siblings, significant others – those taking care of patients at home 24/7.
My colleague, Jill Mitchell, Phd., led the session with me. Jill is an oncology social worker at Rocky Mountain Cancer Center in Boulder, Colorado, and a long-standing member of the MyLifeLine.org Oncology Advisory Council.
Fifty participants attended our session and the room was full. Do you know what surprised and impressed me the most? Ninety percent of these participants were men, specifically husbands caring for wives with cancer.
These men looked battle-weary in the aftermath of cancer hitting their homes. Yet they were brave – ready, willing and able to be vulnerable and share fears with each other in our group setting. Not your stereotypical expectation of men!
We began the session by asking what the biggest challenges were. The answers weren’t surprising:
- Fear of losing their loved one
- Loss of control of their lives
- Cannot see what the future looks like
- No time to take care of themselves
- Financial burdens
One man had a “deer in the headlights” look, absolutely terrified of this horrific world that cancer brought down his fiancé. One week after he proposed to his girlfriend last summer, she was diagnosed with ovarian cancer. She is 26, and is now newly diagnosed with a second type of cancer.
Another man shared that his wife is in remission, and it’s even harder to be a caregiver after the medical treatment ends. As a man, he said he needs to fix problems. During active treatment, he was busy and productive – driving her to the doctor, assisting with treatment decisions, monitoring medications, making meals, and more. Now that her treatment is over, he is feeling lost and doesn’t know how to help her through the emotional tidal waves that still come across her. He overcompensates by helping her in the “wrong” ways, which causes significant friction in their relationship. He is frustrated that treatment ended and their life is not back to normal.
When I asked the group what did work in helping them over hurdles, here are some responses:
- Support from other caregivers who have been there
- One combined outlet for information and guidance
- Family getting involved to help with daily care needs and help with kids
- Remembering that “every day is a new day”
- Open communication about personal struggles related to caregiving
- The chance to get away for a few hours
- Healthy distractions – it can’t always be about cancer
One man’s cry for help was, “I need my friends and family to recognize that I need time for myself. I need them to volunteer to take over, so I can take care of myself too.” Every other person in the room nodded emphatically. Yes, they need a break! It’s exhausting; it’s draining; it’s often thankless work.
Caregiving is one of the most important ways we show love to those important to us. There’s no big paycheck, medal or award. We know our loved ones would do the same for us. It’s what we do for love.
Leading this session reinforced my belief that caregivers are the unsung heroes in the fight against cancer. It’s time to take notice of the caregivers in our lives. Thank them, give them a day off or bring them a meal. Anything makes a difference. They need to know how appreciated and loved they are too.