The Hardest Caregiving

At this blog we talk a lot about caregiving and cancer. We also talk about caregiving for an aging parent and caregiving for a loved one with dementia. I’ve never liked the idea of a hierarchy of suffering. I have always hated that talk of, “man with no shoes meets a man with no feet” which always feels like a way to shame someone’s pain. When we suffer we suffer. When caregiving is hard it’s hard.

So when I read Emily Rapp’s new book I had to keep challenging myself on this, “no hierarchy” idea. Her astounding memoir is called, “At the Still Point of the Turning World” in this book Rapp writes about caring for her son Ronan after he is diagnosed with the always fatal, always terminal Tay-Sachs disease. He was nine months old. He would not live past three years.

But Rapp took on that very hierarchy fallacy in her story. She talks about the way that we-- and even she—have a tendency to measure suffering, grief and death: what’s worse: an old person versus a younger person, an adult versus a child. But Rapp, who is fully entitled to say, “I win; I have the worst caregiving role” does not play that card. Rather she uses her story to show all of us what it’s like to fear and to suffer, to anticipate death and then to grieve...and she shows us most stunningly how to have a life that while not joyful, also includes joy while she is Ronan’s mother and caregiver.

I know this may not sound like the book you want for spring break or the beach—but it really is. Rapp is so smart and so literate and so personal in detailing exactly what a howl of pain is like that you want to stay very close to her and say “Thank you for letting me know about this intimate part of being human.”

In a late section of the book Rapp describes a workshop she attends on “Being With Dying” to prepare herself to be with her toddler as he dies. She shares this lesson:

 “At Upaya they taught us that to be fully present with a person who is dying you must have a strong back and a soft front. Most of us live with the reverse. We are outwardly defensive, and because we resist compassion we are actually weaker.”

Please take a look at, “The Still Point of the Turning World” by Emily Rapp.

Step Cancer

I am not alone. One of my worry what-if’s has to do with the fear of John’s cancer returning (Is it correct to say it’s gone? In remission? Hibernating? Officially you can’t say cured until five years but with colon cancer five years is half a miracle.) But with that recurrence a fear that I have is how that will play out with his kids. They opted to not be part of his life during the first year of cancer—they missed the surgery, recovery, recuperation, chemo, the pump and the ugly side effects and the skin, hair, feet, mouth, sleepless nights.

Now they are slowly—ever so slowly --returning to his life so if cancer comes back what role will they play? That little nagging bonus fear has given me some great hours of useless distraction. But shame being what it is I hardly wanted to admit I was having anticipatory resentments. But whoa—life lesson learned again: no one is ever the only one who has an experience!

In the Winter 2009 issue of CURE magazine there is an article called: “Uncertain Obligations: When Adult Children Care for Parents and Step Parents Who are Ill.” And there it is. Questions of divorce and blended families and how cancer and chemo become the acid test—the chemo test maybe?—of how successfully a family has blended –or not.

The author, Jo Cavill, writes about adult children reluctant to care for a natural parent because of divorce, unwilling to care for a step parent, the stress and strain between adult children and a new spouse sharing caregiving and the fights about both being the caregiver and not wanting to be the caregiver, and the supplementary issues raised by divorce and cancer: who makes medical decisions, how is money spent and who gets the money—if there is any left after cancer treatments—after the parent dies.

This is one of the best pieces that CURE has offered. It’s right in there describing real life and the scary realities of Love in the Time of Cancer.

Walking in a Winter Wonderland

I’m making a list and checking it twice, and thrice and even nine times: his kids, my kids, his ex and mine. I wonder about all of this, and things like holiday traditions? What are his? mine? ours? Memories: his, mine, ours? The holidays add tension. I feel sad about relationships lost and fear about the complexities in this one as we add kids and expand our circle. Will we make it to a summer wedding, or cave in to their demands and criticism? I keep wondering.

Now, like the sign at the mall, my heart says, “You are here”.

Lost in the upbeat melody of what seems like an innocuous holiday song are these incredibly poignant words: “To face, unafraid, the plans that we made.”

Walking in a winter wonderland.