June 8, 2021
Grief strikes again. I’ve recently been a witness to the grief of a wife for her husband.
Now it’s my grief. Because of what my husband, my other half for the last 32 years, and I are dealing with. He is newly diagnosed with Parkinson’s.
A neurodegenerative disorder without a cure.
Grief is a hard beast to tame. This may be viewed as a mischaracterization, but that’s how it feels to me. I know intellectually that the grief process is something that cannot be hurried. That the accompanying emotions, and the various stages, not necessarily in any particular order, must be traveled through, felt deeply, and processed.
Like it or not. And at the moment, I’d rather not. And I certainly don’t like it. It makes me fidget just thinking about it.
I, like most people, have had my share of grief producing life events. I think at times when we hear about how people “manage” their grief, sometimes what appears to be effective managing is really a carefully orchestrated form of denial.
(Ironically, even as I was writing these words, the sunny warm weather that enveloped me outside on my deck, began to first form shadows, and then a full overlay of clouds, with the beginning sprinkle of raindrops. How fitting.)
According to Elisabeth Kubler-Ross, grief follows a somewhat predictable but frequently meandering path.
Some of us get stuck at the first phase: denial. I feel like my grief roadmap has been somewhat dependent on where I was in my life at the time, complicated somewhat by my own healthcare background, which places objective realities front and center.
Denial was modeled quite well in my childhood household, with my earliest known loss occurring at age 3 when my grandmother—my father’s mother— died.
She had laryngeal cancer, and my parents went to great lengths to protect us from this diagnosis and it’s likely outcome.
Even after she died, I remember the whispers and concerned faces of my parents, who did their best to protect us for as long as possible from this news.
My father, like many men of his generation (and beyond) never cried—at least not where we could see it. (The sole exception was if he heard the Marine’s Hymn. Then the carefully pressed handkerchief would always appear.)
Ten years later, when I was 13, her husband, my grandfather, died, and only then, as we were clearing out his home for the estate sale, did I see the handwritten notes that my post-laryngectomy, voiceless grandmother had written during her end of life days as she lay in her bed at home years earlier, saying what she needed or how she was feeling. How incredibly difficult that must have been—for her and for her visitors and caregivers….and how poignant that my grandfather had kept them around all those years….
Even then, it seemed to me that serious illness and death were huge burdens to be dealt with reluctantly and as quickly as possible.
20 years later, when I was a 33 year old wife, mother of a toddler, and an experienced nurse practitioner, I found myself facing my own mother’s advanced stage cancer diagnosis….processing this news and knowing more than I wanted to know about the outcome of metastatic disease, I watched both parents (and my mother’s oncologist, I might add) embrace their collective state of denial, with no outward acknowledgment of the inevitable outcome.
My mother did eventually and tearfully discuss her mortality with me, as she wondered out loud whether she or her father would live to see the other die. She talked to me about who she wanted her personal belongings to go to—willing her engagement and anniversary ring to our daughter, who was 3 at the time of her death.
(In a moment of immense joy and happiness—exactly 25 years later, that ring, last month, became our daughter’s own engagement ring!)
My empathetic, emotionally intelligent mother was so determined to spare her loved ones the pain of losing her, that she persevered through all the numerous complications that ensued—-until finally, nearly 5 years into her treatment, there was nothing more that could be done, and hospice was initiated.
My father was still planning their next trip to Europe as she lay dying. I held her hand as she took her last breath. She had been my champion, my perpetual source of celebration during good times and my source of never ending comfort during all the challenges I had ever faced. We both let the tears trickle down our faces every time we shared a last hug and parted after a visit, even before she was ill. We spoke on the phone every Sunday, catching up on the ordinary details of our lives. And I had her caring compassion for the first three decades of my life. I’ve now lived without her physical presence for almost an equal amount of time.
Looking back now, I don’t think I ever truly grieved her loss, which left an enormous void in my life.
There were funerals to plan in two locations to accommodate her friends and loved ones, and all the associated organizing and travel while juggling the care of two young children and my faculty and clinical jobs. I did it all. Somehow. I distinctly remember trying hard not to cry at her funerals as I attempted to “stay strong” for my children and everyone around me. And then, I just picked up my life again where I had left off.
16 years later, after descending into the living hell that is dementia, my father departed this life, with me at his side. But this time I was by myself —yet not alone—surrounded by wholly empathetic inpatient hospice staff, who made it easier for me to cry openly—to begin the grief process without self-judgment or blame. In truth, I had already been grieving his loss in the years leading up to his death, as I watched my highly intelligent, accomplished father with a keen sense of humor, slowly lose his cognitive abilities and have a protracted decline which was incredibly difficult to witness. I shed quite a few tears along the way—but just as with my mom, I kept busy advocating and doing what I could to lessen each of their own burdens.
I was learning all along the way. But my expression of grief for my dad was short lived. There was funeral planning, and his personal items needed to be gathered from his assisted living facility and rehomed. I was also the executor of his estate, which took a lot of time and attention, particularly when a legal challenge arose from a sibling which required an additional four months of nightly work after my actual workday, and the resulting additional stress— to see it through to its conclusion.
I was juggling a LOT. And the grief process took a backseat to all the things that had to happen every day.
This included the many occasions when I went to hospitals to help shepherd care and get information firsthand whenever family members or close friends faced serious illness or surgery.
And then there were the losses of our other family members —my husband’s grandmothers, his mother, some of my beloved aunts and uncles. But always —until this year, generations above our own. This past year we have endured the loss of two cousins in our own generation. With services delayed due to COVID, which will now take place this summer, one month apart.
History repeated itself when I myself was diagnosed with my locally advanced cancer at age 61. One year younger than my own mom when she was diagnosed. Denial was my “go to” strategy at first too. Not denial of the illness itself, which I rapidly accepted, but denial of what it actually meant for my life.
Why, I would just do what I had always done and “press on regardless.” I would continue to juggle my demanding job, and family challenges, and fit in multiple weeks of diagnostic tests, 3 months of chemo, hemolytic anemia, and major surgery plus physical therapy and 31 rounds of radiation as well as an additional unexpected diagnosis of osteoporosis, and never miss a beat. I felt grateful that cancer was happening to me and not a loved one.
Fortunately, by the time I found out I would need another year of targeted therapy IV infusions, I had received (and processed!) the very wise counsel of my oncology social worker who ever so gently and compassionately helped me see things through a very different (and shall I add, much more realistic!) lens.
Permission for leave…and then, permission to grieve.
And now, on top of it all, the grief of my husband’s diagnosis. It is truly much harder to bear in many ways than my own. My first thought was a vision of the oncoming locomotive bearing down—coupled with the inability to get out of its path. The degenerative disease without even a chance of a cure. Already disabling, and likely to worsen. The disease that doesn’t kill you directly; it is not as kind as that. Instead it merely wreaks havoc on your quality of life, always physically and often cognitively too.
It had another unexpected impact on me too. Before, I felt relatively free to die, if cancer was to return and see me out. Now, the caregiver in me feels a great need to stick around for my spouse—(as if I can control any of it!!)
Witnessing his worsening disability on a daily basis has opened the gates to the cumulative grief of my lifetime that I have never fully allowed myself to feel—never really expressed. Which helps me understand why I am sooooo sad now. How painful it is to confront it all.
Perhaps I have moved forward to the depression phase, as I begin to straggle over the line to acceptance. I’m getting there. And I’ll likely detour back too. And all the while I’m feeling very challenged to welcome the myriad of emotions in.
In the bigger picture, this diagnosis has actually forced us to rapidly confront and plan as best we can for our own aging processes—adding a whole additional level of complexity and stress when we are just coming to terms with this diagnosis —and its ripple effects.
And of course, as we gradually share the news of his diagnosis, I am experiencing again the impact of possibly well intentioned but unhelpful comments from others—that I experienced following my cancer diagnosis too.
“I think you may be making more out of this than you need to. Lots of Parkinson’s patients do really well.”
“Well at least he’s not as young as Michael J. Fox when he got it.”
“I heard this has to do with what you eat.”
I am reminded again of that famous quote attributed to Robert Frost—that “the only way out is through.”
This song’s message resonates with me…
When We Fall Apart
This is why we cling to hope.
And lean in…to all of it.
“Fairy tales in childhood are stepping stones throughout life, leading the way through trouble and trial. The value of fairy tales lies not in a brief literary escape from reality, but in the gift of hope that goodness truly is more powerful than evil and that even the darkest reality can lead to a Happily Ever After. Do not take that gift of hope lightly. It has the power to conquer despair in the midst of sorrow, to light the darkness in the valleys of life, to whisper “One more time” in the face of failure. Hope is what gives life to dreams, making the fairy tale the reality.”
“Learn from yesterday, live for today, hope for tomorrow.”