There’s never a wrong time to pause and ponder that for which we’re grateful. Spiritual rituality, meditative moments, significant life events, near-misses, good news, bad news. And, of course, the November day of Thanksgiving.
I LOVE the Thanksgiving Holiday. I don’t cook but the aroma of sautéing butter, onion, celery, spice beckons early morning, as strongly as freshly pressed French Roast. Yes, I do spend equal time in the kitchen with the cook each third Thursday of each November. Someone has to taste-test the stuffing as torn dried bread cubes are blended with the sauté, stuff the bird and sew it shut, foil-tip the wings, infuse the mashed potatoes with just enough nutmeg, and evenly slice the cranberry, no? I’m not the master chef but I revel in the small scrumptious details.
I have loved Thanksgiving since I was 22. At 21 I randomly (clinician readers, sorry for the layman’s understanding of my diagnosis and procedure, I was just barely an adult at that point!) ruptured an abdominal artery on Thanksgiving and was on the mend after life-saving surgery, ICU, and a couple months of home recuperation. We could have made PB&J each next Thanksgiving and I still would have thought it the best one ever; I’m super-grateful to be at each and every one.
This year has been no different, at least as far as that goes. New wrinkles, though.
My step-father Warren, a die-hard New Jersey-residing Giants fan, is sick with progressive conditions that have begun to make themselves known in life-altering ways. Gratefully, the day before Turkey Day he was discharged from MGH and Spaulding to my home here where the Pilgrims started it all. VNA is lined up, he’ll be here getting his legs under him for a few weeks before returning to Giants Country. Life is good, but I have a new job role. Caregiver.
It’s been a few days and my L-tryptophan levels are up, the turkey left-overs have been tasty. I’m not sleepy from that amino acid boost, though. I’m exhausted and completely stressed out. It’s only been a few days in this role…
In the midst of it all, as I type this blog late Sunday morning I am interrupted by a phone call. From Eagles Country, not far from Giants Country but my old Jersey home just the same. My vivacious friend, a 40-something woman who’s unique spirit and zesty sauciness leave their mark on all she meets, has left us after an odds-defying and hard-fought 12 year slugfest with metastatic breast cancer. I am so happy that Fernie is finally at peace, and just so sad. Like red Zinfandel and turkey, this added grief pairs well with the new caregiver emotions.
Being a family caregiver is hard, and I’m sure this blog’s readers are the last people to whom I need to tell this. All across Dana-Farber are clinical caregivers, survivors, current and former family caregivers, witnesses to the same. I’m just one in a succession of many, and certainly more to come.
I’m a project manager and like to think I can equally, in both my home and work lives, be flexible, adjust, be supportive, emotionally tough, and calm right with the rest of ‘em. But there’s something about this role that’s a bit daunting, if not pernicious. I think it has fangs. My emotional intelligence quotient is taking a hit.
Though family and therefore more than a guest, adding a new residing member – even if only temporarily or short-term – changes the entire dynamic of the household. Living spaces get recycled, spare bedrooms become convalescing spots cluttered with medical equipment and assistive devices. Meal time changes, so many old ways go out the door. Old ways you didn’t know you observe. Usually, this shift is not something planned for. Things happen, and we families respond. We respond with ample doses of love and empathy, anxious to help our family member back onto his or her feet.
I think and hope we’re doing a pretty good job so far. What I‘ve noticed though, is my day now starts, continues, and then ends as a primary caregiver and I tend to ignore my basic needs. Regular meals, personal care, exercise, down-time, they come last if at all. Usually fastidious, I’m not even taking my vitamins and prescriptions on the proper schedule. This is while I check to ensure my Dad has attempted, and received supportive assistance, to try and adhere to his. I’m obviously a hypocrite and also achieving poor self-care, allowing myself to get absolutely unsorted in the process.
It sneaks up. You don’t realize for a day or two into the new caregiver role that the time to get ready in the morning doubles, if not worse. I’m now getting both of us ready when the home health aide is not scheduled, and we haven’t yet come up with a good and efficient process that is satisfactory to us both. Getting ready for bed has the same issues and no scheduled agency aide to help. It takes a long time and more often than not, we’re on different pages. Even if I’m tired and need to retire for the night, I have many steps and much time needed to get him all tucked in, comfortable, and asleep.
Today I had to find a way to cope or I was going to wind up squarely entrenched in a red zone of emotions. After 5 hours using the rake, blower, and a transport tarp, I have no leaves left. Not one. I burned off a lot of the stress-induced energy and got to think about great times with Fern and the gang back in NJ, alone and worrying about little else than moving leaves. A good, if temporary, respite. I’m sure Warren enjoyed the solitude, too.
Once back in from the yard, I searched for caregiver resource sites on the internet and confirmed the advice I was hoping exists. If a caregiver is going to make it through in one piece and be the best caregiver he or she wants to be, self-preservation is mandatory. Adequate sleep, self-care, respite, nutrition, have a sounding board, summon help and support, try to laugh, and blow off steam. Some of these tips are easier than others, but I know I’ve got to try and do them each day. I owe it to me, and to my Dad. I think these tools will help also to process feelings around Fern’s passing. God speed to Fern, and speedy recovery, Dad!
The Liberty Hotel, Boston, 2010