Saturday, August 4, 2012

Caregiving, Celebrating an Unnatural Act

The message left by my friend wasn't good. While I was traveling, back home my wife suffered a freak accident. A large and ebullient puppy had careened into her at maximum speed, shattering her ankle in three places, and dislocating it for good measure.

When I made it back home a week later, I went from being the one who had the problem to being the one who wasn't forced to hop precariously around the house, who didn't have to function through a haze of painkillers, who wasn't dealing with bone fragments scraping against other bones for weeks before the swelling went down enough for a surgeon to safely operate.

Until further notice I am the exclusive errand boy, housekeeper, cook, and chauffeur at our place. I perform these duties with varying degrees of success. Errand boy? No problem, just hop on the bike and go. Housekeeping? I'll get to that at some point. Cooking, in spite of my ummm, unorthodox approach, has actually gone fairly well. I haven't served any rotten meat nor burned the house down. Chauffeur went OK, did the trip from the hospital home without suffering damage or inflicting it. Which, let's face it, is better than many fully able drivers can manage.

Fortunately, family, friends and neighbors have all figured out how precarious our situation is and provided us with companionship, meals, horse care etc. What I've learned from this is successful care-giving can largely be a matter of outsourcing the work to others.

There is a major difference between the light care-giving I am doing and what a caregiver for a person with PD goes through. I fully expect Pam to recover completely, or at least to a level where she can function well within the normal constraints of life. With PD or other progressive and incurable diseases, no matter what heroics the care partner can manage a patient still gets worse. I can only imagine the sad weight this must be to the one who must help manage this decline. By normal standards, you are automatically a failure, the patient is always getting declining. Parkinson's requires another measure of success, one that looks at how much comfort one can render to the patient, and how well you help them sustain their dignity.

This is a difficult job. But it is a deeply human thing to do. One of the many things that separate us from the other animals is the way we say "no" to nature. We have managed, through many slow centuries to soften the blows of the dog-eat-dog natural world in which the weak  succumb to the strong, who themselves naturally weaken as time passes and are taken down in turn. The flip side to the circle of life is the every-bit-as-real circle of death.

This is where we humans prefer to disagree. When one of us begins to lag, we do not leave them to be picked off by predators as one of the sick or the weak. We do not buy the explanation that this is "Good for the herd". Instead we reach for interventions like antibiotics, prosthetic limbs and surgery. These are just a few of the artificial measures we use to hold nature at bay, to hold on to what we hold dear.

The larger community often rallies around this unnatural activity,  providing backup through formal and informal networks. Our bulwark against our frighteningly violent, random and uncaring Universe is caring for one another. (At times we are even willing to extend this circle of concrn to other species as these fishermen do here for a drowning bear cub.)

Our acts of kindness are symbolic acts of rebellion against the cruelty of the natural "order". Viva la revolucion!


Patient-Online said...

Peter, I am sorry to hear about your wife's accident and injury. Best wishes as she heals and you care for her. Thank you for the well written explanation about caregiving related to Parkinson's, as a progressive disease. No one could have said it better. Dan

Peter Dunlap-Shohl said...

Thank you Dan. I trust from the fact that you felt good enough to comment that your procedure went well.

Best wishes,


Peter Dunlap-Shohl said...

D'OH! It finally dawned on me that you had been posting on your blog about how things have been going (as you might have gathered from the above post, I'm a wee bit distracted of late.) Having read several posts I am glad to know that it is improving your quality of life. I was surprised to read that you had so much pain, i remember none from my DBS procedure.

Adele said...
This comment has been removed by the author.
Adele said...

Peter, I have been thinking about all you've said here. When I went to my first young onset Parkinson's disease conference and heard everyone referring to "care givers" and "care partners," I squirmed uncomfortably and entered a period of denial. My husband was my husband. He would not be my caregiver. That worked until my Parkinson's took me down an embankment too steep for me to climb back up on my own. Now I rely on him so much, because I need help, because he is reliable and kind, that when I read your post, I felt a sense of panic.

The way that you have been able to help Pam and yourself. The way your community has pitched in to assist you both. The hopeful spirit in which you write. These things stemmed my panic. Your writing helps me find my still places, Peter.

I hope you are both handling this time of interdependence well. I hope Pam grows stronger every day and that her ankle function is restored.


Peter Dunlap-Shohl said...

Adele, you put your finger on something I have felt but not actually found the words for. Thank you for that insight. We do promise at our weddings "to have and to hold, in sickness and in health" which is more poetic than "To be a devoted care giver when the fat's in the fire". But doesn't it mean the same thing? Thanks also for your good wishes. Even light care-giving is a little trickier than I realized :~) Peter

Adele said...

Perhaps the vows also mean, "to accept the help I need with a glad heart." I think that might be what can turn care giving into care partnering.