Welcome to Thoughty Thursday! This is the day of the week that y’all get to be privy to whatever thoughts are kicking around in my brain.
Today, the caregivers are on my mind.
I have some experience with the process of taking care of others to the exclusion of myself and I’m watching close friends go through the process now.
There’s my critique partner who’s supporting a son with lymphoma and an online friend who’s fighting a workman’s comp suit while trying to save her home. I have another friend whose son is a such a high-functioning autistic that he doesn’t qualify for the services he needs. AND she was just diagnosed with MS.
In short, I’m watching people struggle.
It’s not just women who find themselves in the position of being caregivers by any means, but I’m seeing a trend amongst the female caregivers I know:
These women forget to give themselves permission to set the load down periodically to care for themselves.
I just saw an interesting book on Amazon by Jai Pausch, the wife of Randy Pausch, who many of us remember as the author of The Last Lecture. Jai’s book, Dream New Dreams – Reimagining My Life After Loss, looks like a must-read for the caregivers of cancer patients.
The author would like health professionals and society as a whole to be more
“concerned about the people who struggle to carry the medical burden while also
meeting everyday demands.” She sees the need for a “network at every oncology
clinic” to assist those who are trying to manage complicated cancer care at
Jai and Randy were lucky to have concerned family and friends, a good
income, and access to the excellent physicians. However, not everyone is so
fortunate. There are too many relatives of cancer sufferers who feel isolated,
bewildered, and overwhelmed with responsibility. Jai asks, “Who will care for
This issue isn’t limited to cancer. There’s all kinds of caretakers.
- Parents of special needs children who are fighting for services and emptying their bank accounts to help their kids.
- Children of aging parents, who are discovering how difficult it is to find cost-effective assistance and care.
- Those on their own who are struggling to overcome medical issues that seem insurmountable.
The wear and tear of providing this kind of ongoing support for a loved one takes over your life (as the caretakers among you know). It will suck the joy out of your daily existence if you allow it. Forward progress is slow and the all-around guilt is crushing.
My experience as a caregiver:
I lost my mother when she was 65 and I was 35, after fighting her medical issues for five years.
Five years of illness and repeated hospital visits…
Five years of major setbacks and new hope for recovery…
Five years of side effects that were worse than the medicine…
Five years searching for a doctor who would listen and be a proactive part of her team.
They were the longest five years of my life.
I don’t have a magic answer for you caregivers, only an encouragement to:
- Reach out to others in your position. Especially with the internet, there’s no reason to suffer alone. Even 8 years ago, when my mom passed, there were resources and support groups that we found on the internet that were a tremendous help.
- Take time out for yourself each day. Even if it’s only 15 minutes with a book or a quick walk around the garden, you will feel better if you do something for yourself. The person being cared for loses perspective with all the pain and agony they’re enduring. In my experience, they rarely mean to be selfish of your time, they’re just SCARED.
- Allow others to help. Many caregivers have people in their circle that will help if asked. They are wringing their hands off to the side of your own personal hell, wondering if there’s something they can do. It’s hard to stop and explain to them what’s needed, but that doesn’t mean they can’t sit with your loved one while you run errands or take a bath.
In my humble opinion, as someone who has worked professionally with the people providing support and as a part-time participant in my own mother’s care, it falls to us to protect ourselves.
The caregivers need to carve out a safe space for themselves so their spirit doesn’t get sucked out by the care they give to others.
Do you have experience being a primary caregiver for someone in a high-need situation? Were there strategies you developed that helped you stay sane? What advice would you offer to others in the same situation? Enquiring minds always want to know these things here at More Cowbell!