The Weariness of the Systems
The systems suck the life out of us.
Last fall, I realized that we navigate 17 different systems during our caregiving experience. I recently finally made the obvious connection between the 17 systems and their contribution to our caregiving fatigues
Last week, I led some great discussions about these 17 caregiving systems. Our interns from the Community Health Program at University of Illinois just completed training about The 17 Caregiving Systems included in our Certified Caregiving Consultant curriculum. The interns, Carlos and Lidia, effectively applied the concept of 17 systems to their own personal experiences.
I’m also working with three of our Certified Caregiving Consultants (Jennifer Richey, Barbara Corley and Diane Glittenberg) to deliver training to direct care workers and family caregivers in California through a grant from CalGrows Innovation Fund. Our training for the direct care workers and family caregivers includes The 17 Caregiving Systems workshop. Although direct care workers and family caregivers may experience the systems a bit differently, they both understand how much these systems drain our time and energy and resources and well-being.
I’m also preparing to be a part of a special event on mental health hosted by The Kennedy Forum in May. The event, Coming to Light, A Path to Mental Health Services for All, will be taped in May for broadcast on our PBS station in Chicago in September. The program also will be offered to the approximately 350 PBS stations across the country.
I connected last week with Elizabeth Evans from The Kennedy Forum to talk through the themes impacting a family caregiver’s mental health. Specifically, Elizabeth asked me: What are the biggest forces affecting caregiver mental health? She then shared an article she read last summer: His PTSD, and My Struggle to Live with It. The article offers incredible insights into the system fatigue we experience during caregiving. The author of the article writes of her experience as a family caregiver:
Everyone seems to agree that we are crucial to healing. And yet, we are asked to paper over the cracks in institutional support systems with strips torn from our own skin. Without adequate assistance, we are offered two equally unthinkable choices: Martyr yourself or leave.
and
I believe my PTSD was caused not by empathy, or by referred suffering or burnout but by living with someone with PTSD and an avalanche of daily, direct “small-t” traumas: impossible paperwork, the broken health care system, mounting debt, a constant exhaustion that fed isolation from family and community. My traumatic exposures were the fruit of institutional failures: Every time Jason was denied resources he needed to heal, I was left to pick up the slack.
Using this article as a reference, I walked Elizabeth through the various systems and the impact of trying to navigating those systems. Because we navigate all these systems and yet feel like we never really receive what we need, we also experience a variety of caregiving fatigues. We get tired of trying, cooperating, coping, grieving. It’s all just too much.
Elizabeth and I also spoke about the solution to the system fatigue which threatens our own emotional well-being. I suggested that we need an ongoing support system for family caregiver that begins early in the caregiving experience and continues after caregiving ends.
We need support for family caregivers that begins immediately when family caregivers:
realize something is wrong with a family member’s health so search for solutions that can only start with a diagnosis
become a constant, reliable presence in the hospital during a family member’s medical crisis
sit with a family member in a doctor’s office as the news of a diagnosis is delivered
advocate for a family member in the educational system, the community system and the health care system so their caree receives the care and support they need.
If we can intervene with immediate support for family caregivers that continues for the length of a caregiving experience, then we can ensure family caregivers receive:
guidance to learn how to work the systems
education about their rights within each system
information about coverage of services, supplies and equipment through payers and providers
a safe space to vent their day’s truth
an opportunity to talk out strategies and plans
support to figure out how to keep a life during a life of caregiving
referrals to programs that can help
coaching during a crisis, like hospitalizations, hospital discharges, and a caree’s medical event like a fall
plans to help with effective transitions between care settings
insights about palliative care and hospice care
meaningful conversations to talk out the challenges in order to hear what could help
support after caregiving ends.
In addition, if we can intervene with a team of professionals, including a Certified Caregiving Consultant and Certified Caregiving Specialist, then the family caregiver forms a relationship with a team of professionals who understand. Even better: The family caregiver chooses the Consultant and Specialist so she has a team that reflects her definition of the right support and help. Meaning, she could choose a Consultant who had a comparable caregiving experience or who comes from a similar family system or who shares the same culture. Or, she chooses a Consultant that offers all three commonalities — caregiving experience, family system and culture.
In addition, the family caregiver receives ongoing support and coaching from a team who understands that family caregiver’s specific situation. Rather than calling an 800 number to connect with a different case manager which requires the family caregiver to repeat the same story over and over, the family caregiver shares the story to the same team and then adds more details during every conversation. Rather than staying stuck in repetition, the family caregiver builds out a story with someone who has been living the story with the family caregiver. Just this (one team of professionals who stays with the family caregiver throughout the experience) is an effective intervention.
Until we have an effective intervention to support family caregivers, our systems will continue to break people already broken because a family member or friend had devastating, life-changing event.
It’s time to insert an intervention that actually works for family caregivers — the world’s largest health care company.
What challenges do you encounter navigating the systems? What changes would you like so that the systems actually help more than harm?
(Image by Pavlo from Pixabay.)
Resources
Our interns are seeking Spanish-speaking family caregivers for recorded interviews.
Our March Soul Break focused on providing a reprieve from running the hamster wheel.
Our Caregiving Master Class Bundle includes four classes (The Six Caregiving Stages, The Caregiving Fatigues, The 17 Caregiving Systems and The Family Caregiver’s House of Cards) that offer six hours of insights. Enroll for yourself for $179. Want your team to better understand the needs of family caregivers. Enroll your team of five or more for a discount of $149 per team member.
If you manage caregiving and career responsibilities, register to join us on April 29 for A Morning for Support for Working Family Caregivers.
Inspired to make a difference to support family caregivers? Register to join me on March 31 at 1 p.m. ET to create your caregiving impact.