I read another article yesterday morning about the devastation during caregiving: Caregiving for my mom and my husband didn’t just drain our savings. It ended my career.
Does a caregiving experience determine if you become a Have or Have Not?
I think we all know that answer.
I’ve been working the past few months on a series of articles about how we spend money on research that doesn’t matter, how we define the experience incorrectly, and how we need to value the work of family caregivers.
A few weeks ago, someone responded to one of my article, writing, “Who is this for? I don’t get what you’re doing.”
When I get a question like that, I pause. I ask myself: Who is this for?
It’s for us — so we don’t fall into the gap and land on the Have Not side. Family caregivers work. They deserve to be reimbursed for that work. Reimbursing family caregivers keeps them on the right side of the gap. Reimbursing family caregivers keeps a local economy growing.
I then ask myself: Am I the right one to make this case?
I think I am. I’ve been supporting family caregivers since 1990 and launched one of the first online caregiving communities in 1996. I’ve been here since the beginning of this movement and through its evolution.
As the movement grew, I also lived it. I helped my dad for almost 20 years. Eight of those years also included caring for my mom. I didn’t study the family caregiver experience from a distance. I was inside it — managing the impossible, carrying the weight, and showing up the next day to help others do the same.
I know we have not moved the needle in how much support and help family caregivers receive.
Last week’s article in The Wall Street Journal told the story of a daughter’s determination to keep her parents safe — an impossible situation handled with creativity, love, and sacrifice. Two leaders in our space used that article as an opportunity to demonstrate their own expertise, posting on LinkedIn about the article as a vehicle to really just talk about their work.
Neither posted in a way that engaged with the family caregiver whose story made the article worth reading. They referenced the article as a way to push forward their own expertise rather than to talk about these difficult, impossible situations family caregivers face. Honestly, I couldn’t help but wonder after reading their posts: Did they actually read the article? They serve family caregivers yet couldn’t bother to actually read about a caregiving experience.
I also spoke this week with someone new to my world. He shared his perspective from leading a marriage support organization. From his experience, he believes family caregivers feel well-supported by their spouses. He shared that spouses provide a loving, steady presence through the hardest moments of a caregiving experience.
But I am a Have Not from that perspective. I didn’t have a spouse during my caregiving years. I had siblings who did what they could. But I was alone a lot.
I also coach caregiving spouses who feel just as alone; their marriage feels different now, and they experience that loneliness in a profound way. A spouse in the house is not the same as a spouse who understands the pressure, the stress, the uncertainty, the worry, the grief of caregiving.
These three recent conversations share a partial picture. Each person brought something real. None brought the full, robust experience of what family caregiving actually is — in all its stages, its fatigues, its impossible choices, and its profound loneliness.
That’s missing from leadership in our space. Not intelligence or intention. Wholeness.
We deserve leaders who carry the full picture because the family caregiver’s experience is never partial. It is total. The support they receive should be too.
The leaders who drive discussions, policy, and support in our space have not done the hard work of understanding the full family caregiver experience. We deserve leaders who have. With those leaders, we can do the work that keeps family caregivers away from the dangerous gap between Have and Have Not.
I often worry that my readership isn’t large enough to make the impact I want. That the words don’t travel far enough. That the case I’m building doesn’t reach the people who need to hear it most.
But not having a large enough readership doesn’t mean I shouldn’t try.
I have to try. I have to put the need for better support out into the world.
I have.
Perhaps that’s another meaning for Have. Not just financially. Not just relationally. But in purpose. In persistence. In refusing to stay quiet about what family caregivers deserve.
I am trying to be a Have in every sense of that word.
If enough of us can be on the right side of Have, then we keep family caregivers from falling into that gap that lands them on the wrong side. Everyone benefits when everyone is a Have.
Thank you for reading. Thank you for showing up every day to do your best, even on those days when you feel your best stayed in your past. Thank you for always trying.
Help Me Make the Case
I’d love your help as I build the case for reimbursing family caregivers. Tell me:
How your caregiving experience impacts your spending. Our five-minute survey captures your experiences with how a caregiving experience changes your personal economy.
How much your work is worth. When you calculate your value as a family caregiver, you provide us with the insights that help us effectively advocate for and about you. The calculation takes less than 5 minutes and you’ll leave with your own insights into your worth and a social media card to share. When you share your social media card, be sure to share your story.
Resources
Insurance Check tool — I built out a tool that helps you determine if insurance will cover supplies and equipment. It joins our 22-tool library that helps you find your stage, create a budget, and name your caregiving fatigue.
Community impact calculator — Want to know what it costs your community when family caregivers don’t get the help and support they need and stop spending within their communities? Calculate the impact.
Image by Martin McConnell from Pixabay.
My partner is an elder millennial (he and I were both born in 1982). He is a full time family caregiver who has already given ten years to caring for his mother with Parkinson’s. The majority of his mother’s retirement was stolen by his abusive older brother, leaving them / us in a very challenging financial situation. (Im a mid senior professional in the nonprofit sector who has been in a three plus year search for a new full time role during a fraught and exceedingly competitive time in the sector. I currently am earning far below my worth in a fractional role and intermittent consulting projects. Before he became a caregiver, my partner’s only experience was in retail, local bookstores. He’d just finished his MFA in creative writing and was planning to take a job at a publishing house that he had to give up for caregiving. For the last couple of years, he has received a small amount of compensation through a state program, which helps a bit. In addition to insecurity around survival needs, the financial situation has also greatly delayed or in some cases prevented investments that would’ve improved his mom’s care and quality of life … the exercise bike (finally got, years after he first wanted it), the pure wick to prevent UTIs, which cause significant cognitive problems for Parkinson’s folks (still only use intermittently because of the cost of supplies), adequate transportation to get to physical therapy appointments at a deeply respected mobility center (made it work on transit and Uber for one session but had to drop out partway through another), etc. If you asked Brandon, he would say it is the financial situation, and not the Parkinson’s, that has been their worst challenge. … so beyond his mom’s care, there is his own financial picture: unpaid student loans, ten years and counting of lost income and opportunity to advance in his writing career (currently scrambling to finish several books in the small gaps around care demands), time that he will absolutely never be able to make up, especially with his minimal resume.
Thank you for everything you do, Denise. We are fortunate to have you in our corner.