A Hot Mess
It's all a hot mess during our caregiving experience.
“A hot mess.”
That’s how a family caregiver described the health care system during a presentation I gave last Tuesday on the six caregiving stages at a caregiving event hosted by Southern Illinois University.
The following day (Wednesday), I gave a presentation on difficult family dynamics to a group of discharge planners at a hospital in one of our Chicago suburbs. It struck me that the term “hot mess” could be applied to our family systems. The department head of the discharge planners shared with me that they have a zero tolerance policy with families and will remove aggressive family members from the hospital. At the close of the presentation, I asked, “Are you encountering more difficult family members than you have in the past?” They all nodded in agreement.
The following day (Thursday), I facilitated a conversation with two family caregivers who shared their experiences trying to get the correct diagnosis and treatments for their carees. “Hot mess” could describe their experiences working with insurance companies that make us jump through hoops and health care teams who often ignore our expertise.
I think about family caregivers living in this hot mess of uncaring systems, aggressive family members and intolerable conditions. We’re at our breaking points but can’t break. If we break, so does our caree.
So we live the hot mess day in and day out.
What a mess.
(Image by 12019 from Pixabay.)
Resources
Our Caregiving Mentor and Professional Listening Artist programs are available for a Pay What You Want price point through May 2. I want to train as many Caregiving Mentors and Professional Listening Artists as possible. Caregiving Mentors volunteer to connect with family caregivers about once a month to offer support. Caregiving Mentors can support family caregivers in their workplaces, their communities and through our online community, CaringOurWay.com. Professional Listening Artists provide a safe space for individuals to release their worries and stressful days. Professional Listening Artists offer a valuable, accessible service at an affordable price.
Check out these stories in the media about the caregiving experience:
The Hidden Costs of Unpaid Caregiving on CBS Mornings
Millions of American Kids Are Caregivers Now: ‘The Hardest Part Is That I’m Only 17’ from The Wall Street Journal
Want to know more about the six caregiving stages? Join me for a free one-hour overview of our caregiving stages on April 29 at 1 p.m. ET.
How has your caregiving experience impacted your spending habits? Tell us in our survey. We'll share initial results during our workshop, How Will We Care? on April 30 at 1 p.m. ET.
Zero tolerance, indeed. Thank you for your work in helping them see just how frustrated and terrified we are in dealing with systems that have 'zero tolerance' while often failing to see us and our needs. It is a hot mess during caregiving.
THIS: 'I think about family caregivers living in this hot mess of uncaring systems, aggressive family members and intolerable conditions. We’re at our breaking points but can’t break. If we break, so does our caree.
So we live the hot mess day in and day out.'
So true, Denise! This is what I read on the forums in the UK, EVERYDAY' I'm blessed that right now, our days are easier. Boring and routine are heavenly.
When we were caring for Dad, we were well beyond breaking point - hypervigilance, eggshell-tension, months were one long day lit by the blue lights of ambulances and red lights of heart machines.