Our Wedding Day May 15, 1983
I’ve been writing and podcasting about Donna, my loss, and grief. It has become a journal and my journey based on reflections, memories, and experiences surrounding Donna’s diagnosis, treatment, and death. That is the nature of a narrative it’s a reflection, based on personal or learned experiences.
It struck me that though my eyes though personal and emotional reflections and memories these musing may have missed a point, a nuance, or a message that some may find valuable. More importantly that I find valuable and insightful. I thought why don’t I interview those who knew Donna, knew me, and were part of this journey. To learn how they saw the arc of Donna from diagnosis to death. My arc from diagnosis, to death, to grief, and mourning. Did I miss anything? Was I short sighted in my self analysis and reflection? Was my narrative accurate and clear? What did I miss because we all know how clear hindsight is.
I want to thank everyone that allowed me to talk to them. I promised to keep everyone anonymous so no names just he she her it.
There was nothing in my discussions with these people that jumped out as overtly surprising that I have not touched on. I will say here there are a couple of points and memories from everyone that struck me as how the hell did I miss that? Additionally this narrative sounds like different voice. It is a less or analytic and more personal. I hope that becomes apparent as I continue.
Three of those I spoke with who knew Donna for 20 plus years shared their experience of Donna disclosing her diagnosis. She learned at work via VM that she had stage IV cancer and was told she had six months to live. I am not sure she called me. I remember that evening when she came home and told me.
The day she received the VM sh did call her closest friends to tell them. And their memory was that Donna cried (she does not cry). She said was going to go to Oregon to be put down. Each one offered hope and belief that she could survive. When she came home that night to tell me that was her response, Oregon and euthanasia.
What was new to me is that she shared so readily and quickly with others. For the next three and half years she was not forth coming on the disease. That was her personal life. What I learned that I did not know was that Donna said to both of them that she was more worried about me and how she did not want me to go through this alone. My first reaction was to think of the recent piece in the NYT Memento Mori by David Malham who was diagnosed with A.L.S. and "I was, however, disturbed by thoughts of my wife. I became preoccupied with how she would manage a post-David existence.” When we face death we turn outward to those we love to help their burden. My research on EOL Advocacy showed that well. And I think right now that she sub-consciously set the bar for me going forward. See how far that went.
It seems, this is a common reaction for those dying, others. It was new to me specific to Donna and her sense of the disease. The fact this story had no happy ending created context for her speaking with others about me and not her disease.
To a person each one noted that Donna kept this journey to herself. She did not talk about it or complain. It was her disease and no one else’s. Yet when she did share with her close friends it was clinically driven about the science and medicine of what her treatment was. But in general she kept her emotions to herself. Though each person I spoke to noted that there was moments of fear at the beginning and her instinct was to run. But the overriding behavior was to consider her survival and to want to go back to work. She worked on her web site which I’ve linked to since I am reluctant to take it down.
The woman I counseled with during treatment and following Donna’s passing noted that I was trying to save Donna I was the doer and the motivator to ensure she got the best treatment she could while Donna hid her pain and fear. When Donna was fine I was fine which I didn’t really see but do now. Overall I was in the process of analysis and action though the counselor noted I looked like a deer in the headlights.
Since Donna was not communicating with the outside world regarding her health and treatment I took on that role. It was my way to update everyone and to in some regard make sure she was not forgotten. That was my fear not hers. She was self actualized and independent and did not tolerate fools gladly. One of the observations that was made was that as the caregiver I was struggling to manage the disease and Donna.
My notes and emails were welcomed and considered valuable for their continued support. I will note here that for me as the caregiver these missives were my chance to share and communicate. They gave me the moment to consider what was going on. To process that which was impossible to process. These notes was my chance to reflect. I find that for caregivers the chance to share with those who want to know and care give us all a touch stone of support and help that is not easily found. Additionally, it is a place and a time for reflection. Counseling was a huge benefit to perform self analysis and manage the emotions. Looking back this was one huge process.
Those I spoke with also commented that I was with Donna every step of the way. All but a couple of appointments I was there and making pill packs and food etc. I was the caregiver so Donna could be who she was and not manage the disease the treatment. In someway it was my way of giving her freedom to be to live. One person put it this was "I was moving from managing the team to being part of the team". I was now a member of her death and dying team. Gee I never got picked to be on a team in junior high.
I was doing the job of an AE with a depth of emotion behind the scene and within these communications it was palpable to all. They all recognized that I was doing these notes in the face of Donna’s movement toward her death. When we did have dinners or meet with friends we were still us outwardly with Donna being frustrated that I could not answer a question about her phone. That is not unusual for us we were as someone said about a good marriage “A stalemate between equals” Neither one of us backed down and were strong willed and driven in our lives and each others. But for those who were there they saw that between the lines lay Donna's fear and they could see her progressively getting worse. And they could see my fear and pain.
I was the docent for Donna's death.
To a person they could the see the love between us. All knew it was there but during this time it became more apparent, obvious, and tangible. Though both us they said swung between the poles of hope and dispair.
This period was in my view and hindsight a period of putting my upcoming process of grief and loss into some perspective not retrospective context and narrative. It was caregiving inculcated with a process of analysis. Though in the middle of it and toward the end I would come home and sit on the stoop fearful of what I would find.
January of 2011 Donna’s health was taking a downward turn. She was having issues with her joints that were troubling and painful. Caregiving was focusing on managing the symptoms. One of the people I spoke with spoke about having lunch with Donna that spring and how she picked a local restaurant. Lunch was great and Donna looked wonderful as always. Yet when lunch was finished and they got up to leave Donna could hardly walk from the pain. For him it reinforced what was going on beneath the surface and in her life. Yet it demonstrated Donna’s dignity in the face of death. And during this period the reality of disease progression with the need to be positive was her mantra. It was a balance that Donna could do and I tried to do. These symptoms were reminding me this story would not have a happy ending.
From the spring to the summer Donna was at the last of her chemo with the hope that reducing tumor size would bring some joint relief and symptom reduction. That was not the case and the disease was becoming more acute and the chemo in the end did not reduce tumor size or manage the symptoms. In July of 2011 following an MRI it was discovered that there was fluid around her lungs and she was scheduled to enter the hospital to have it drained. For me the reality of the end was dramatic and painful. She could not walk and had to be carried to a wheel chair and once in a bed she was struggling and afraid. As was I. But my drive to manage and care did not wane.
Two dear friends came to visit. I was there but left so she could be with them alone. They said that the first visit Donna was scared and afraid and cried. She did not want to die. It was hard for them to witness this and know. But on a second visit two days later Donna was upbeat, put on some lipstick, and was positive in her outward attitude. Though for me I was there for 12 hours a day she was fading in and out of rational thought and composure which was directly related to the whole brain radiation two years earlier that was causing some dementia. I was less a caregiver team member and more a HCP team member.
The draining of the fluid was not successful and her team began to discuss palliative care and home hospice. This was difficult to say the least for both of us but someone noted that she surrendered to the disease. Donna was scheduled to be discharged home for home hospice. I got the bed etc. but at the last minute her team recommended she remain in the hospice unit in the hospital. I thought it was because of my failing to be a good caregiver. I was told in these discussions with friends that they sensed it was less about my failing and more about better care 24/7.
On vacation in Rome
During her last three weeks in hospice I wrote to everyone updating and many if not all came to visit her though Donna was sleeping most of the time. Two people noted that my role in hospice was to manage the care and on another level to comfort those who came. I would speak out other topics and not address what was staring us in the face eminent death. I was all over the staff like a wet rash but constructively.
After her death a new arc began and I spoke with these friends about it. What I learned was that the immediate time after her death was difficult for everyone because there was not much to do for me. I was the walking dead. But over time I began to write and post about it. I went to grief counseling as well as groups. But what everyone I spoke with noted was my sense my goal to see if I could help others. I've spoken about that as my goal and why but to hear it from other.
I have written and podcast so you can see those. What was note worthy was the sense that each person put on this that it was a process a journey to understand. As I’ve said frequently, a friend said to me that his only option for grief was to not run from it deny it or ignore it but to hit it head on. I did and it became a self analysis with not apparent at the time with no real goal in place. It was me slamming my face and heart into this shit. I will reiterate what I’ve said previously that I wanted to help others that I wanted to share my journey to help others facing similar circumstances but in the end and listening to these friends and family members I grew and learned through reflection and experience. I can say now, there will be no closure to this, closure is indifference. Closure is denial said pretty. I have not adapted. Adaption is surrender. It is building a new world one fracking Lego at a time. To take this tapestry of memories and emotions and put them into a place where they can be savored like wine when I feel the need but not to shroud my life with them. What was a deer in the headlights response is now deer driving the car.