As the first nursing home and assisted living facility residents get their COVID-19 vaccines, I feel like I’m seeing a little light at the end of the tunnel. I’ve been quiet on the blog this year because I’ve felt speechless – empty of any information, advice or even reassurance I could provide the millions of caregivers doing a hard job during the most difficult of times. I felt helpless as I watched the deaths mount and read story after story of isolation and disconnection.
But even while this national catastrophe has been playing out, Daughterhood has been carrying on and changing in important and interesting ways. We still get lots of questions and emails from our website visitors, and they are asking the same questions they’ve always asked. These are always some variant of: Where do I go? How do I start? It’s amazing to me that blogs I wrote 3-5 years ago are still being read and used.
Under the leadership of Rosanne Corcoran, our Daughterhood Circle leader in Collegeville, PA, the Daughterhood podcast has continued to grow a loyal and expanding group of listeners. Rosanne has interviewed some really interesting people like Carol Bradley Bursack (Columnist, author, blogger and consultant on aging and caregiving issues) and Teepa Snow, one of the leading educators on dementia and the care that accompanies it).
Our community of Daughterhood circles continues to meet. These circle meetings have moved to a virtual setting, and like so many others, we’ve learned that there’s a benefit to our community members of not having to get in a car and drive. The circles continue to grow and expand. The leadership of those circles also now meets regularly over zoom. Something we wouldn’t have attempted a year ago.
Our first and founding Daughterhood Circle, in San Diego, celebrated its fifth anniversary in 2020 and the San Diego leaders organized a phenomenal two-day event over zoom and asked me to share my thoughts about Daughterhood, where we have been and where we are going. It was an incredible opportunity for me to reflect on how much I’ve learned from our community and the connections we’ve formed. I talked about our history and our future as a community and as caregivers.
I’m sharing it here with you now because, despite all of the challenges and unrest, I think we’re all hoping 2021 will bring needed change as well as a chance to reflect on what has happened and how to move forward. I would love to hear from you. How do you think about your history and your future at this moment in time?
In the Beginning
On January 5, 2015, I wrote, for the first time, about this concept that I had just started calling “Daughterhood.” A name that came to me literally as a gift. From the conversations I had in 2014 I wrote about 3 things that stood out to me as common to the caregiving experience.
- It’s Invisible! I talked about how so many of us play a critically important but invisible role in our families, communities and societies. And that the invisibility of it makes everyone who does it feel like they’re all alone.
- It’s Overwhelming. I talked about how the complexity of navigating all of these different systems, and all of the work there is to do requires an MD, an MBA and a JD. It takes a lot of time, derails careers, disrupts parenting and marriages.
- It’s Heartbreaking. There’s no preparation for shifting from being cared for by your parent to caring for them and the desperate need to preserve dignity.
I posted this on LinkedIn. There was no website yet. There was no Daughterhood yet. But the response was strong and validating – “How did you know how I was feeling?”
What happened then was really quite magical. I became “we” – Susan Rowe and couple of other people that I had been talking to about this all sort of pitched in and we put together a website. The consensus of my little team was that I should just keep writing and keep going. So, I wrote some more. I wrote about the feeling of failure. How hard it is to make decisions with so much at stake. How no amount of effort ever feels like enough, of how you can do so much and still feel like you’re failing. I wrote that sometimes you have to give yourself permission to just put one foot in front of the other. That it’s important to realize you’re dealing with a broken system and how the problem is with the system – not you.
At that point we set up a newsletter in the hopes that there would be a group of people who I could send these ideas and thoughts to and possibly build a relationship with. I remember the first people to sign up – included my mom, my cousins and aunts. At first, we had maybe 5 people, but it was great. We set up a Facebook page and more people found us and then came to the website and signed up and pretty soon our newsletter started growing. And growing quickly. One day I looked up and we had 1,000 people signed up! To be clear, it was never viral. Caregiving stuff doesn’t go viral, LOL. But it was organic, and I realized we were on to something here.
Using my experience in the healthcare system I wrote about all it’s complexities. I started writing about Medicare and Medicaid, my areas of expertise. How to manage a hospital stay. What is Medicare, Medicaid – I struggled to make these understandable. More people signed up! Within just a few months, we had several thousand people signed up to get the information.
Daughterhood Circles Are Born
Then that spring, the magic came together again. Karen Van Dyke and Christine Lee, two amazing women living in San Diego, got in touch with me. They had been thinking about these invisible warriors in their community. Women taking care of family members who didn’t really have anywhere to go or an outlet to talk about what’s happening. They liked what I was saying and thought we might work together. We wanted to help people in in our community, but we wanted to do it differently. We didn’t want it to feel like a support group we wanted it to feel like kind of a …MOVEMENT. This is when – really – Daughterhood as a movement was born. Today when people ask me what Daughterhood is, I tell them simply it’s a community of people with shared experiences providing care to their family members.
But really, it’s a movement – and I say that because… what we found is that, once we launched the first circle, and started talking about it, we noticed that others were “moved” to do the same. There is something about this “Daughterhood Circle” thing that reaches out and grabs really talented and amazing people to devote time and energy to starting circles, leading and serving their community. It’s really a beautiful thing that pulls us together. A nourishing community that gives us a sense of belonging that has somehow been conveyed out to the larger world. A community that people are moved by and want to be a part of.
And the way we know this is really a grassroots movement, is that it has its own momentum. We have NO funding. There’s no advertising, to speak of, no corporate sponsors, no “revenue model.” It’s just caregivers responding to the moment that we’re in collectively and individually, and desperate really to make meaning out of it.
Of all the things I’ve learned in the last five years, what’s been really the most striking is the momentum of this movement.
When you look up the word momentum, you’ll see it means “force gained by movement.” In the early days of daughterhood I worked SO hard spending hours and hours writing blogs and working on getting circles going – all the while ringing my hands and feeling like I wanted it to get bigger and faster – but at a certain point I just had to let go and just let it roll along on its own – I realize now that all the work put in was kind of formed into a little ball that we sent rolling down the mountain and we just watched the miracle grow and now here we are – Daughterhood has become a movement – a movement about our collective need for coming together, sharing information and reassuring each other about everything you experience.
We now have 24 circles operating in about 16 states and Canada. With the pandemic, we’ve taken advantage of zoom and now launched a national Circle.
What’s this Movement About?
This movement is about meeting our collective need for coming together, sharing information, reassuring each other that we’re not alone, forming a brain trust and a force for change. There is an almost unspoken feeling that we all just “get” that something is missing — in our society in how we go through these last phases of lives and how our families go through them with us. That something HAS TO CHANGE.
For a movement to have momentum, the participants need to have a) passion and b) a shared set of experiences. One of the most striking things about being in community with caregivers all over the country is just how similar the emotional and tactical experiences are. Regardless of sociodemographics, political orientation or geography, we are all unified in our challenges and in our suffering.
- We all worry about making the right decisions
- We all struggle to manage ancient, primal and fraught family relationships
- We all struggle to balance our loved ones’ desire for independence with our concern for their safety
- We all feel – at some point – completely overwhelmed by the situation we’re in and what it demands of us
- We all feel like nothing we do is enough; that we’re failing
- We all experience so much frustration trying to navigate bureaucracies of healthcare, insurance
- We all wonder – in the beginning – where do I start? What do I do?
- We all worry about money – in some way, shape or form. Are we going to have enough? Are our parents going to have enough? Who’s going to get it? How do we protect it from the government? How much will be left? I’ve come to believe that money is the root of so much of our worries.
- We all want to take better care of ourselves, but we don’t know how, and we feel guilty for how bad we are at it. We all worry about what all of this stress means for our old age
- We can all recite the Medicare alphabet Parts A, B, C, and D
- We all miss our friends
- We worry about how our caregiving is affecting our kids, our work or our marriage.
- We all feel guilty. All.The.Time. We really want to be able to say “no” without feeling guilty
- We struggle to set priorities and stick to them.
- We all want to quit.
- We don’t have enough help.
- We hate trying to figure out home care, assisted living and nursing homes.
- We’re all challenged and frightened by the many faces of Dementia
- Most of all, and very paradoxically, we’re all united in our feeling of being all alone. As Jessica Ravitz wrote in her article for the Washington Post, “While new mothers are showered with love and often share a path well-lit by friends and neighbors, the road is often dark and hard to navigate when it comes time to mother their own mothers, or any relative for that matter.”
The Future
We’re now at a point as a society, where every single person who is turning 65 tomorrow has a 50/50 chance of at some point before they die needing somebody else‘s help with the basic activities of daily living – and about a 15% chance of being in that situation for five or more years.
This is a new phenomenon and what it means is that this new road we’re traveling isn’t well lit or well paved. There’s no light to guide us as we bounce along in our little cars all by ourselves. We’re on our own because as a society, we haven’t yet created a “system” set up to serve the care needs of older adults. We NEED a system!
We are sitting here at this juncture of history when the political forces and the social forces and the health care forces are all coming together to drive change. We’ve formed a community of people that are clearly moved to be in community with each other and to do something different – to see that the suffering of the next generation of caregivers be less than they experienced.
Society has to change, and we have to change at Daughterhood to help make that happen. We’re going to kick of 2021 with a fresh approach to content – more talking and sharing, taking advantage of what works in virtual communication, opening up to the international community. In practical terms that means continued podcasts and webinars, a new virtual national daughterhood circle and tapping into the expertise of our leaders for guest blogs and webinars.
There’s no question that 2021 will be a year of moving forward, of new challenges and new beginnings. Through it all, Daughterhood as a community will continue to move forward together not alone. And that makes all the difference.