Last week, you told me why caregiving is so hard. You wrote about its relentless pressures, its never-ending demands and the lack of helpful, effective resources.
What strikes me is that you all commented on the different systems you have to manage — payer, provider, medical, health care, family, financial, nervous. It’s the systems that make caregiving so hard.
You said:
“We are always trying to stay 5, 10, or 1,000 steps ahead of the diagnosis and the broken system(s), while simultaneously attempting to stay in the present and live our lives. I feel like I am constantly redirecting myself from running around like a manic woman back to my son and just ‘being’ in his presence.” ~ Sara Clime
“For disabled kids – medical professionals don’t know how to care for our kids and treat them as less than.” ~ Jaclyn Greenberg on Linkedin
“I will add that they see us ‘in service’ of our carees BUT don’t always want to include us as part of the care team when it come(s) to sharing information and making decisions.” ~ Felisha Norrington on Linkedin
“I would add: providing updates about the LO to family and friends and fielding their responses and infinite advice, suggestions and questions. It’s enough to make a caregiver never want to pickup a call or respond to a text or email.” ~ a member of our community, Caring Our Way.
“We feel guilt at our reaction(s) – as we are not the one who is ill, we are the lucky one, we don’t deserve to feel aggrieved. And this is misplaced guilt – of course we deserve to be seen in our own suffering. Our lives have changed beyond recognition too.” ~ Dr. Rachel Molloy
It’s the Systems
Your comments illustrate what needs to change in terms of the focus of our caregiving researchers and program leaders. So much research and so many programs assume your burden comes from the relationship with your caree. I don’t mean to imply that all relationships between family caregivers and carees are always loving or even include love.
But none of your comments indicated that your caree creates burden for you. It’s the systems. And yet, programs try to solve that problem — that the relationship causes you burden — rather than understand that managing and navigating the systems absolutely exhausts you.
If you reach out for help through your local Area Agency on Aging, for instance, you may complete a common tool called the Zarit Burden Index, originally developed 46 years ago. If you want to enroll your caree who has dementia in Medicare’s GUIDE program, you complete the Zarit Burden Index. When you complete the scale, you answer a series of questions about your relationship with your caree. Your result indicates your presumed level of burden.
None of the questions ask about the burden you carry because the systems are siloed, short-staffed, disorganized and difficult to navigate.
The Index also misses another source of stress for you: you miss your life. In our ongoing stress survey, we ask about your stress and its source. The number one choice selected is “I miss my life.” Yet, the Index doesn’t take the impact of caregiving on your life into account.
When you take the Index, you never get to name the source of your stress. The Index assumes it for you.
If you don’t feel stress within your relationship with your caree, the Index assumes you are not burdened, which means you may not receive the services you need. In the GUIDE model, if you score low on the Index, you may not qualify for more support and for respite. The overwhelming stress of coping with your family’s denial about a caree’s diagnosis, the decisions around safety relating to driving and living situations, and the adjustments you make in your life are not measured.
Advocates in our space have work to do, especially by demanding we pivot from labeling the caree as the burden to naming our real burdens and then to effectively solving the burden all the systems place on us.
The emotional toll is often still overlooked in the programs and services offered to help family caregivers. Medicare added a benefit to train family caregivers on hands-on care. But none of you indicated you need this kind of training. So many of you talked about the emotional toll.
Where’s the Medicare benefit to provide emotional support for us? (Our advocacy campaign to tell Medicare we need this just ended. We’ll keep beating the drums for this kind of needed support. We start with advocating for an emotional support benefit with Medicare in order to then advocate that other insurance providers follow.)
Right-Now Resources
Your comments add so much weight to our work to get you better support and reimbursed for your caregiving hours. While we haven’t yet made the changes we need, we have some resources that may help right now:
- Use our free tools, and join us live. We’ve built free tools for the parts of caregiving that may be difficult to think through alone, like creating a Family Emergency Plan. The Caregiving Leave Planner helps you consider when to take time off from work and which benefit, like Family Medical Leave or paid time off, to use. See them all here: Caregiving Resources & Tools
- If you’d like good company while creating your plans, then join us for our free monthly meetings, including one to build your Family Emergency Plan with us in real time. Join us here: Free Monthly Planning Meetings
- Work with a Certified Caregiving Consultant. A CCC transforms their lived experience as a family caregiver into a coaching career. They’ve completed 115 hours of specialized training to help you navigate the experience: the decisions, the systems, the fatigue that comes from doing all of it at once. If cost is a barrier, a CCC-in-Training can offer pro bono support while completing certification. Find a consultant here: Care Coach
- Know the value of what you do. You do the work of the systems without being reimbursed, making you the only system without a reimbursement rate. Our calculator helps you put a number on your scope of work. When you generate the value of your work, you also help us to advocate for reimbursement and better support for family caregivers everywhere. Calculate yours: Know Your Value.
- Join the Caregiving Listener Project. On November 21, we’re gathering to listen to you share more about why caregiving is so hard. Your experience, in your own words, becomes part of our advocacy efforts. Learn more here: Caregiving Listener Project
- Write your representatives. Tell them why caregiving is so hard for you and what resources you need but can’t find. Systems change when enough of us say the same true thing at the same time. Representatives are listening. Senator Gillibrand, Ranking Member of the Senate Special Committee on Aging, asked for a report on the value of unpaid work. While it’s clear so many still don’t get our scope of work, they are thinking about it, which means we have an opportunity to help shape what could become policy.
Thank you for all you do every day. The work is relentless, the pressure is intense and the stress accumulates. Yet, you do this hard work 24/7, 365 days a year.
We need to do better by you.
Resources
- We regularly write six-word stories on CaringOurWay.com, our online community. This week, we’re writing about our despair during caregiving. Write with us.
- Image by Gerd Altmann from Pixabay
