For weeks after receiving Jack’s diagnoses of Parkinson Disease my sleep was haunted by the flash of tiny fish in ever-tightening nets. Or, I dreamed I was a sea turtle flying effortlessly through my domain. In an instant I was entangled in a net, hauled into a small boat where laughing men hacked off my flippers, tossed me unfeeling back into the sea. Even as I fought against the cutting and slicing of my limbs, my means of survival, I understood the men were simply doing what they had to do to feed their families. That, to them, I meant nothing at all except a meal, a way to nourish themselves and to stay alive another day.
Sinking, helpless, back down through the very ocean that had been my home, I would, each night, transform, become an avenging goddess, rise like a rocket up out of the sea and into the boat where I wreaked havoc on the men who had killed me in my incarnation as a helpless, flapping turtle. Even then, though, in my dreams, I stopped, looked at the faces of the men, knew they meant me no harm, that they, like me, were only trying to survive.
Today is the first day Jack and I will receive respite care. Sixteen hours a week another caregiver is scheduled to come into our home and, essentially, do what I do each day.
Jack and I have worked hard to develop a schedule that will have this stranger driving him to acupuncture and massage and to the pool for physical therapy. Leaving me to accompany him to doctor’s appointments, the gym, and other appointments for which I need to be present. This wonderful person, Mr. Elf as I am calling him, will also clean the house twice a week, and most important, focus all his attention on Jack so I can have sixteen glorious hours a week to just be me.
I know that sounds bad. I understand the myth is that loved ones, wives in particular, care for our spouses, giving up piece after piece of ourselves, and we do it all with love and compassion as we rise up into sainthood.
Yeah, well, that’s bullshit.
If you follow my blog or have read My Life as a Wounded Warrior, you know Jack and I have had twenty-five years of living all over the world, we traveled in Asia with nothing but a change of clothes on our backs, taught scuba diving in Mexico, shared a tree house in Thailand.
When we left the doctor’s office, after receiving the diagnoses of Parkinson, I turned to Jack, squeezed his trembling hand, and said, “Well, so now we begin a new adventure.”
He glared at me. “Worst adventure. Ever.”
Because he decided not to take the medication for Parkinson, we started a regiment of, basically, doing everything anyone on the internet said might be good at slowing the progress of this degenerative disease. Mostly this involves slow, steady, exercise. The only suggestion we haven’t yet implemented is no-impact boxing. I’m working now to get that going here in Eureka.
So, about a month into this new adventure, here’s where we are:
We enjoy doing Tai Chi each morning after, and only after, I’ve had my two cups of coffee. We like exercising together three days a week at the gym where he rides the bike (excellent for Parkinson) and we work our way through a few weight machines. I walk in the park twice a week while Jack does physical therapy in a warm pool. I asked and the VA granted Jack massage and acupuncture, both of which are purported to be good for Parkinson. He begins those therapies this week.
Our joke is that Jack has his own little Parkinson retreat center. Our world revolves around providing him the best care we can manage.
Are you catching on to the symbolism behind my sea turtle dream?
Love is transformative. I have no argument with that truth. But the caregiver has to be able to get to the surface on a fairly regular basis. That little sip of air, the feel of sun on a back, and the breeze across the surface of the water – that’s the difference between life and death.