This line from a song has always resonated with me, even before I became a care partner and lost my Dad to cancer.
Often I reflect on many of the paths that my life has taken and how a good number of the decisions I made were driven by fear. Fear of physical or emotional pain, fear of change and the loss of what I had or who I thought myself to be, fear of the unknown…
When I reflect on the journey of caregiving, from the moment the call that Mom has fallen or Dad has cancer is received, all the way through trying to muster the courage to go through the boxes filled with evidence that they lived, and no longer live...despite the stronger emotions of grief and duty, there’s fear.
No matter how much I wish it weren’t so, I’m convinced that the notion of caregiving, either needing it or needing to give it, and no matter how hard we try to convey through our actions, words, the steps we take to protect our loved one, and ourselves...fear is present.
Drawing from his experience as a hostage negotiator, the author of Never Split the Difference, Chris Voss, often talks about facing fear. In hindsight, being a care partner felt like I was negotiating with a universe that held my Dad’s happiness and well-being hostage.
Voss writes that “everyone is scared and underneath that they are angry.” Yes, that was me. I was angry with myself for not knowing what to do, say, or even be that would make Dad feel better. I was angry at him for accepting he was dying and not wanting to live longer for me. I was angry at the system because I was constantly having to make decisions or take actions that I felt ill-equipped for or had risen up without warning or notice.
I was angry...but really I was scared. “The quickest way to calm fears” Voss says, “is to call them out.” In the caregiving space, I think it’s incredibly important to talk about the fears. Yet, who among us, particularly in the throes of caregiving, has the emotional energy to express these fears when we’re so tired of trying to manage the new normal that comes with being a care partner?
I was scared and angry and I didn’t give myself the time or space to deal with these emotions because I wrapped myself in the armor of “doing” so that I wouldn’t have to feel. And by not feeling, I would often be overwhelmed. Overwhelm would lead to anger and we now know that anger is the underlying emotion behind fear. For me, all this pent up emotion led to my Scarlett O’Hara declaration that I didn’t want another daughter to feel as I did when caring for my Dad.
That declaration led to my founding Caregiven. Caregiven simplifies all the things that need “doing” in caregiving, so that care partners can focus on their emotions. We talk about streamlining the administrative tasks so care partners have more meaningful time with their loved one.
What we really intend to do is remove the very real care partner fear that they are forgetting something vital, the fear of being surprised and unprepared, the fear of running out of time or not making most of the time they have left. The fear that their loved one will not have a good death or live to the last, and that they, the care partners, will have regrets that they couldn’t give that to their loved one.
As I said, fear permeates every aspect of caregiving. And not just for those rising to the occasion and giving care. It grasps tightly to those facing their final years.
In building Caregiven I’ve spent a number of hours in retirement communities, aged-care centers, and at sessions where a speaker has been brought in to talk about end-of-life planning. Fear is at the heart of these conversations. The fear of being a burden to a loved one. The fear that their loved one won’t honor their wishes. The fear that they will lose control over their own medical care and ultimately what happens to them.
My Dad had these fears. In spades. So my family, his medical providers and I collaborated with him so that he had the peace of mind to know that we understood his wishes and we would honor them. Chris Voss would have been proud.
Ultimately, my hope is that we eliminate fear in caregiving so that individuals and their care partners can make the right decision with the information they have, that align with what they want, whether that’s to live as long as possible or to die at home in their own bed.
This is what we were able to give my Dad. And this is what every care partner can achieve. I believe that. I believe that fear is the heart of love. And that by recognizing the fear, we can move more fully into the actions that truly show our love. The way our loved ones need to be shown during this extraordinary time.
We're in this together...