Grief During Caregiving
Caregiving held my grief in check until there was no more caregiving. I was focused on my/our days of chemo appointment,s physician visits, MRI’s, and radiation. I saw the future in the one by one drop of chemicals into the drip chamber . There was chicken soup before an infusion. Sometimes during the infusion. Patients in the infusion chairs were gaunt, some smiling joking, reading, listening, all them were part of a club. Most were old some where young. All resigned to poisoning themselves to live or keep death at bay.
We went to the movies. As we always did. Trailers poked my grief. That damn smooth voice telling us the plot of a soon to be released film. Stabbed in heart. Wondering if Donna would see it? Would I care if the film was coming to theaters this October. What is coming? The film, Donna’s death, my pain, more chemo, more fear or just the gnawing of my grief on my heart, soul, and memories. These were the dates we had before diagnosis and continued to have yet now they were battles to keep fear at bay. I was all clinical and business as a caregiver. I fault myself for that. I hate myself for that. I became not the annoying spouse driving at survival at all costs but, the spouse making lists, meeting timetables, doing, and undoing. It was how I approached business, set objectives, plan a strategy, create tactics, and measure outcome. Donna gave me her disease and ultimately her death. It was an objective. That is the goal of good caregiving, have an objective. All during my caregiving grief was resting in the background tapping at my heart.
Grief in the Foreground
In early 2011 Donna’s physical health was failing. Her cancer was producing a form of osteoarthritis. Walking was difficult and the pain was progressive. By the middle of the year a third round of chemo was offered and hoped to reduce tumor burden and beat back the crippling pain. It did not work. Analgesics were ineffective. At the same time her pleural cavity was filling with fluid. She was scheduled for a thoracocentesis or pleural tap for the following Monday July 11, 2011. On Sunday we went to a local restaurant. The vast majority of our Sundays were our days, my day, to cook and have family meal, a glass of wine, and just be the family we always saw ourselves as. But this Sunday was different. The restaurant was only a few minutes away. It took 20 minutes to walk there and even longer to walk back. The next day we left the apartment early. A month later Donna passed away in hospice. She never returned.
In ‘Hold Still’ Mann makes the point repeatedly, her art her photographs stand alone without context. The context of the photos become her memories. My posts and podcasts are my attempt to contextualize my memories. They are my photographs. They are a way rectify my failure of not taking photos or holding her after her death. Stroke her hand in death. I was all business. I had to get the plans for the funeral underway. Make sure friends and family were coming. I was afraid no one would come. I did not stop to consider the beauty in her death the beauty of what was and is. Today and during these past years doing these entries I question, have I stopped to consider in equal measure the darkness, the beauty, and the overlap of the two. The grief came to be my companion.
The Venn of It All
There is the darkness in my loss. The sense that Donna’s death has thrust me into this limbo. This emotional amber I am stuck in. The moments of the day the weeks where the usual events of the week, Friday night dinner out, movies, etc. are gapping wounds cut the fabric of time. The pieces of art and furniture that was carefully selected and curated for our home are the stagnant memories. I can barely pick a set of sheets out. Those moments/memories are the slices of the darkness in this Venn diagram. Let me assure you this does not provoke loneliness or sadness. This is just the status quo of life. I have no desire to replace or remove but to accept what is. It is the darkness of the grief.
On the beauty side is the clear knowledge that what was and what is was unique. Finding an old Filofax calendar of Donna’s and reading her entries reassure me that I am not living in a fantasy land. The small red hand drawn heart around my birthday date. The note about a concept. The list of to do’s. All reinforce that what was is real. They are the context for the memories and act as a counterpoint to the dark side.
The overlapping sections of darkness and beauty is today. It is each day where I find myself trying to balance between the two. I avoid residing one side or the other. I guess is called living in the here and now. My goal is to keep both sides less at bay but to bring them into a balance where both the darkness and the beauty take on an organic nature. The memories and the context thrive as I do. To become something new. But I can't help but consider the very reality of it all, I am wasting all that was, all that is, and all that I have. Is my future, my life this one trick pony? I am stuck and some days loosing interest in much of anything. Not caring one way or another. Surrendering to the low hanging fruit of life while I try different venues. I am sorry I have no answers. This is my exercise in clarity.