Confessions of a Caregiver
Out of the blue, my fit, healthy spouse of 20 years (my second spouse, at age 75) was diagnosed with the most lethal type of lymphoma. Overnight, we were thrust into entirely different roles.
I had been “enabled” by my husband Ray to pretty much write and paint fulltime, while he joyously commandeered our household — food, shopping, dealing with everything from a leaky sink to a leaky roof. For his first union of 30 years, he’d been excluded from the kitchen, so in our marriage he indulged at last his passion for cooking. (A few years before he died, he published Table Tales: Do-Ahead Dinner Party Menus That Whet Appetites, Loosen Tongues, and Make Memories.)
So here I was, out of my studio and into the driver’s seat. I was at Ray’s side for every doctor’s visit, every spinal tap and constant blood draw, with me overseeing his brutal chemotherapy through two years to his final week of hospice care in our home.
When anyone is stricken with an unexpected medical or physical emergency, a loved one (assuming the person has such) is immediately enlisted to take over. If this occurs for a spouse, as in my case, there is no question of the able-bodied person becoming the caregiver. For an elderly couple without such a partner, problems arise.
It is often trickier for siblings if their parent is living alone. Does the sibling residing in closest proximity automatically fill this role? Does she or he have a sibling better suited or available for giving care in spite of the distance involved? Should the ailing parent be moved to the likely caregiver? Could this trigger guilt on the part of the sibling close by…or resentment on the part of whichever sibling is turning her or his life inside-out to accommodate this family crisis? There are financial factors aplenty here, but let’s stick to elements of caretaking for that particular individual, whatever the impact of varying circumstances.
Oprah once famously said (although this assertion in not unique to her) that you can categorize someone as a giver or a taker. A crude oversimplification, but it does help sort things out. If a person is by very nature a kind, compassionate soul, with such an assignment they are the first to volunteer. One needn’t be in one of the “helping professions” to qualify. It is not just teachers, nurses and doctors, social workers, Scout leaders, customer service reps, child care personnel…the list is endless, fortunately.
Any boss or supervisor or employer on Earth can “take care” of those folks whom they manage. This should be true for all owners of enterprises who get to profit from the work and labor of others, whatever the situation.
But in the case of a caregiver not necessarily a “taker,” by any means, but somebody entirely new for this task, there are challenges indeed. A measure of difficulty is not only to be expected, but the hurdles encountered are justified as part of the deal.
Of course, there is the patient who objects to be overly-tended. It can be humiliating, the sudden loss of independence. The caregiver is being asked to adopt “bedside manners,” not just tackle the physical responsibilities. Who of us is used to coaxing another adult? You must take this pill, you must follow this regimen of PT, lie still, and so on. An adult child abruptly in role-reversal with a parent: it takes forgoing one’s own needs to place the patient front-and-center.
Everyday life for most folks is demanding enough. Now, suddenly, one must add this new activity and do so convincing their charge that the caregiver is not being compromised. The last things the person on the receiving end of attention, if it is to be truly helpful and healing, is to sense frustration, undo inconvenience, even barely-veiled anger on the part of the caretaker.
The contented, natural “giver” can run out of steam and become overwhelmed with the exertions or responsibilities. Most of us have witnessed a diminutive elderly wife having to assist a heavy-set husband to his feet. A person needs to be tolerant with a newly disabled one who refuses a cane or walker, even an elbow-assist let alone a wheelchair. It takes patience for the caregiver to keep silent and find that balance between scolding and encouragement.
The caregiver him-or-herself is often reluctant to accept offers of help, time off to re-charge those batteries running low. An act of love, not of obligation, can seep into martyrdom, which can foul up the works for all concerned. Very common is the example of the caregiver not giving up, declining to submit to a visiting nurse or aide, whether for gratis or for hire. Tension and squabbles can provoke a family, but with people being well-meaning, these can be overcome.
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Believe me, I’m not a saint. But I personally faced none of theses issues. From beginning to end, I felt it was a privilege to stop every single one of my projects and pastimes to address total caregiving as best as I was able. There was never a question or roadblock. If any, it was after Ray died, in retrospect, looking back and thinking I was so businesslike, a CEO in my demeanor. Did I stop often enough to say what a gift had been our 20 years? What a gift, especially, to help him face the end of his life and die with dignity, as he did? Did I pause enough to reminisce over the joys of our travels, grandchildren, devoted friends? No, not really. My job as I must have construed it was to lead forward to the next possible resolution…the next Pet-scan or drug therapy that might, albeit with ever-slimmer odds, hold a ray of hope. I did not dwell on lingering, last repeating of our wonderful time together. I took my cues from Ray who was determined not to embroil me any deeper in his misery, and to make every last day and hour count. He did not want to descend into our own, private memorial service while he was still alive if no longer kicking.
What a blessing for us both. And I imagine our story is far more typical of most people who may deal with some of the issues of caregiving I have touched upon, but are equally committed to tending their loved one with every ounce of their energy, the whole of their heart.
One can contemplate how a life ending was handled over eons in tribes, with caregivers extending well beyond an immediate family. In fact, the circle of blood relations included most of the tribe! The care of the dying was shared as a natural, communal element embedded in all without question.
Maybe Ray was special having sold millions of albums of his music which had lifted the lives of so many. Maybe he and I had more than our fair share of love and support. He and I were not in this alone.
Or, side-step this sentiment and his particular history. Only on the surface did we handle this ourselves. Each of us has the caregiving capacity to draw on something so very basic to being human that we cannot put a label on it. It’s right there, free for the taking, to fortify us in our times of greatest need.
