The term “end of life” has taken on new meaning in recent weeks as I witness my dad's erratic, but inexorable decline. Not new *meaning*, new *meanings*. Just when I begin to think I have made some peace personally, I find myself having to deal with my sister’s very different perspective. Even though all three of us are on the same page vis-a-vis Dad's care and comfort, his living will and DNR directive, even the smallest decisions can blindside us emotionally. Take the purchase of Depends. Did I buy them because I got tired of washing Dad's entire wardrobe every day, or was horrified by finding him in his chair, wet and with his pants around his ankles? Or did I buy them because it was the rational next step for his comfort and care and to preserve just a bit more dignity in a process that is, admittedly, about Loss (ours), and losses (his)?
I feel I am watching the end of Dad’s long and productive, albeit imperfect, life. I sense a full circle back to the basics of life in its infancy where the purest love is communicated in the act of feeding, cleaning, keeping watch, and interacting as able. I am totally awed by how much he still wants to live and how fierce his will must be, as his lungs and his heart are definitely not doing the job now. In contrast, my sister sees only death and rails at the deterioration of body and mind and our inability to do anything about it. The lack of control is literally maddening; she is angry. She doesn’t think he (we?) should have to go through this. At times like this, I don’t think I want her in charge of the world.
And this is probably normal. Ann Neumann, a Hospice volunteer in New York City who blogs about religion and end of life care on [Otherspoon], writes, “I guess the most important thing I've learned about family dynamics surrounding a death is that emotions are particularly charged in such a way that even easy decisions are proxies for the lifetime of relationship history. Everything is profound, from buying Depends to getting the will in order, from deciding what's for dinner to assisting with medication. Everything, every act of caregiving, can cause emotional outbursts or frustrations. . . . So if you and your sister have a tiff over what dad wants for lunch, understand that it's not about lunch but about how the two of you are working out your history with him and with each other. And realize that most of it doesn't matter. So long as he's getting what he needs and you two are getting by, let the small struggles and frustrations go.”
Let the small struggles and frustrations go. Make peace, either with end-of-life or with death, make peace. How wise.
“How we characterize the aging experience is how we will address it,” Stephen McConnell, Acting Director of the [Aging Program] of the Atlantic Philanthropies, told a class of reporters during the Age-Boom Academy Ann Neumann and I attended at Columbia University last month. Surely the same holds true for the end-of-life experience: how we characterize it is how we will address it. And yet, despite the different ways my sisters and I may see Dad’s last days, we are addressing them much the same way -- with love, generous care, sadness, support for one another, and only the occasional second-guessing. I am most grateful.
Still, this is tough stuff, even though we have a reasonably conventional family and Dad has all the paperwork (his will, living will, medical power of attorney, and directives) in order. We’re not muddying the waters with clashing cultures or faiths, stepmothers, or greedy heirs. We don’t even have a medical emergency. It’s just Life. And Death. And our most profound (and messy) emotions.
*P.S. Just in case you do not have your living will and medical directives in order (and up to 75 % of the U.S. population reportedly does not, despite a requirement that hospitals receiving Medicare funds inquire and/or request one), [here’s] what’s involved. *
*Do your family a favor. Take care of it -- today.*
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