People have been telling me for years,”You need to get away. Just go. Take a vacation.”
It’s not that I didn’t feel like I needed it.
It’s not that I didn’t see the value in doing that.
It’s just that life happens and for the past 15 years, life has offered little opportunity to act on the idea that I need a break.
Need. Not want. Because, I have never thought being a caregiver was a career I negotiated. I also never once considered turning it down. Knowing there are few chances for self care, no pay, and the risk of burnout – I signed on. “How do you do it?” I hear that a lot. Three family members with cancer. A profoundly disabled daughter. My own health events – surgeries, a dastardly terratoma on an ovary, several breast surgeries – all delivering the fears of leaving earth in the midst of someone else’s need for care.
Care. “If you are traveling with a companion that requires your care, put your oxygen mask on first and then help them.” The reality check comes a dozen times a day. We all need to eat, exercise, sleep, giggle, vent, come to terms with life around us. The consideration to each other is not a ticket purchased at a booth. It is the carefully crafted, fragile as glass tiara worn by so many. Those caregivers schlep through grocery stores, looking for something they forgot they came for. They walk up to the doors of hair salons, see their own reflection in the window and turn back to the safety of the car. They make appointments for preventative care for dental, well care, and tiny bothersome health issues – only to cancel them. Likely, someone they care for takes precedence that day. Or the task of making that appointment is just the thing that will cause a sheer collapse. It is that three legged stool the caregiver carts around all day. Kick one leg out from underneath and it all falls over. The financial strain, the very intimate need to be touched and reminded that one is loved and cherished. Perhaps the most important leg may be witnessing life as it happens. The ugly medical adventures. The fear in a loved one’s face. The weariness that overcomes everyone at once. The few and far between sprints to retreat. The lessening visits from family and friends. Disability and frightening health scenarios are exhausting. It gets old, tiring. It’s hard to hear. It’s hard to find the words to say yet again, “That sounds awful.” It is awful. All of it. No one would choose a daily grind that offers little reward other than the love that remains between a few people.
I have been the fortunate recipient of folks who care. Who continue to ask how things are going. Who take the brave breath and ask if I have gas in my car. Who bring food, fill in the gaps. Who call and ask for updates. Who will bring items of necessity when I just can’t manage the task. Who travel bringing hugs and that reminder that being loved and cherished is still on the menu. Who, when I vent problems, are ready to think of solutions. Who will cut my hair. Who will buy basic wardrobe pieces. Who will not slip away. Who will hang tough, whether there will be yet more difficult news or the bright glow of better days. Often, folks I have never met. Every kind word left in a blog comment, every like and share on Facebook, every card that arrives by mail – all serves as spiritual nutrition. Without it, I would succumb to it all. Giving up is not that hard. The admission “I can’t” is breathed more than people know. Believing no one cares just allows that doubt to grow like Jack’s beanstalk. Caregivers can’t possibly foresee the very personal need to be supported. Those who can’t step up aren’t perceived as weak or uncaring. It isn’t in everyone’s capacity to be compassionate or empathetic. Some health events are truly ugly. The choice to look away is not without its own exquisite kind of courage. The caregiver is aware, even in that case. Serious, long term health crisis is no time for holding grudges. There is also no need for pity. Pity never helped anyone have a better day.
Finding respite is tricky. It’s a choice and timing is crucial. There are often details that require absolutely no loose ends. Making a list of backup plans is enough to keep one from taking advantage of a chance for a break, no matter how small. Getting away means I have run the risk of unplugging. Of eating for myself, no one else. When I need to. Of realizing, it takes a little while to find that part of my brain that is empty. That section of brain matter that can read chapters without drifting off to medical scenarios or one of the hundred tasks that has been put off for months, maybe years. That section of the brain that can stare off at a hammock, thoughtfully placed between two trees, and the seed feeder inviting birds to dine – creatures I rarely take the time to observe. Communing not just with nature, but being able to sit in the present and feel………nothing. Just be. Nowhere to go and nothing to do. Set my coffee cup on the rail and stare out into the trees and rocks nearby – see how light reflects off a blade of grass or how stars emerge in a darkening sky. The enormity of it all and the precious gift that life is…..to let that soak in for a change…..THAT is respite.