Addressing Guilt
I took this photo of Robin and our dog Indy on a California beach. In a moment of sadness as in my mind it captured her future. I’m gone and she’s now soloing in the van with the dog. As she gazes out to sea, she knows I will not be coming back.
Carey -
For me, this has proven to be the most challenging ongoing aspect of having a terminal illness. There are many layers that periodically resurface. Largest is the impact on Robin. Leaving her earlier than we anticipated. Transferring the burden of maintaining a house alone. Projecting how I would feel waking up alone each day in that empty house. Leaving the kids early. Adult kids have proven to be a tremendous joy, and now there will be a void in the get-togethers. I won’t be a witness of the important milestones in their journey through life. I worry that they are spending all of their vacation time coming to visit, rather than going to cool places. I am leaving friends with the trips, visits and social events we thought about but never operationalized. I no longer will be there to help in times of turbulence in their lives. Not being there to continue to teach. The knowledge that I will likely become a physical (and emotional) burden towards the end of this journey. The list goes on, and these thoughts jump from my subconscious into my forebrain without any identified triggers. As I contemplate these episodes of guilt, I realize that much of this is projection of how I think I would react if the tables were turned. Waking up in a empty house, cooking for one person, managing a household alone when it’s always been a team effort, trying to avoid loneliness on solo trips are amongst items that periodically hijack my thoughts.
Stepping back I realize that this fails to acknowledge the resiliency and fortitude that Robin, family and friends have. They face the same challenges that every widow/widower and family member who loses a parent or sibling must address. My memories will be there whenever they choose to call upon them. They will successfully adapt because that is who they are. I know they will find happiness in a world without my physical presence. As I proceed on my pathway, I realize that my guilt is really a form of self-pity. It is unproductive. While challenging, I will continue to work on suppressing guilt and instead focusing on the positives in the relationships with the folks I love.
Nicole -
Guilt is hard. It feels like we disappoint others and ourselves even if the cause is out of our control. Some people seem to feel it more than others but everybody feels a little bit of leaving things undone and burdening others with pain or unfinished business. I take these thoughts and turn them on their head. Feel the sadness and grieve the events deeply. Cry, rage, read poetry, walk/run in nature and play music loud. Sink into what it feels like to be physically present now. Write the feelings of guilt individually on pieces of paper and burn them in a red hot fire. Share them and cry over them with the people we are afraid we are affecting.
Guilt is grief less processed. Our job is to turn into those feelings and ferret out their source. Take away guilt’s power and give ourselves permission to send it away. Accept the reality of our limitations and dare to dream for those we leave behind that they will carry us in their hearts. Give others permission to live without us and send them onto this path with belief in their ability to conquer the unknown and create their own paths. Like watching a toddler learn to walk and not catching them every time they fall, we can empower those we love to walk into the future without us.
I saw Carey’s guilt and gave him permission to let it go. To reassure him that the anticipatory grief he felt and watched Robin and the girls feel was one of the hardest parts of the journey. Just like climbing a mountain, feeling the grief can be done one step at a time. He began to get rid of things that didn’t serve him. He let go of his anger at a political system that felt out of control and a pandemic that was putting the physicians he trained and cared for like his own children in daily danger. He started choosing the time to read anger provoking topics when he really wanted to know what was happening but realized that his anger and guilt didn’t help his body or his immune system. He took more pictures, bought a Sprinter van and hit the open road to explore with Robin and the dog. He asked me about creating a project together to allow his photography to illustrate his journey and that idea has resulted in this website. Guilt, turned on its head and sent away allowed him to become more creative and peaceful. Watching his humility, acceptance and ability to let go what no longer serves him inspires me still.
Robin -
I would say that my feelings of guilt revolve around selfishness. I think this is probably true for a lot of people when faced with life changing events. I have always been the caregiver, so it was hard for me when some of my first thoughts were “How is this going to affect me?” Which then morphed rather quickly into how can I take care of my family and friends?
The day of Carey’s surgery was a good example of my guilt due to selfishness. My family wanted to come to the hospital to “sit with me” during the surgery. I did not want to have to make conversation all day while waiting so I asked them not to come. This made me feel guilty because they wanted to do something to help, but I also knew what was best for me. Carey requested that he have no visitors while in the hospital also to avoid having to socialize when he didn’t feel like it. My family was great and respected our wishes. They were able to help out by walking our new puppy several times during the day. Everyone needs something different during stressful times. Family members and friends can offer help but shouldn’t feel slighted if their offers are rejected. It is still hard for me to put myself (or us) first but I know I need to during this journey.
For me, COVID has been a blessing in disguise but also another source of guilt. We (the girls and I) have not had to share our time with Carey as much during the last year. I enjoy having friends and family visit, but selfishly want to have as much time together as possible. The first summer after his diagnosis we had over 100 visitors who spent at least 1 night with us. It was great! The time flew by and other than every three week visits for treatment Carey’s impending death was out of the front of my mind most of the time. The second summer was a bit more sane with a steady stream of visitors but not as overwhelming. The time went by a little slower which was good but left more time to ponder the future. The COVID summer had a few visitors and some interesting challenges on how to stay socially distant while still enjoying company. I think the second summer offered a good balance of alone time and company.
When I think of Carey’s guilt, it makes me sad. I will get to enjoy a solid financial position and our children as they make their way through adulthood. As Jerry Garcia said “Don’t be sad because it’s over, be happy because it happened.” I have many years of memories to smile about after the initial crying is done. I wish I could help him move from feeling guilty about leaving us to understanding the gifts he is leaving us with. He is also worried about the burden he will be when he becomes more and more dependent but caring for others gives me an outlet for the sadness I feel. I know I have the support of many people who will come and help out if needed so I have no worries about the physical dependency stage of this journey.
Tyler -
From my perspective, guilt has reared its ugly head more times than I can count throughout this journey. Guilt for my initial reaction to the news. Guilt for being so far away. Guilt for having a good day and forgetting for a moment. Guilt for not calling after a long day. Guilt for having a bad day. Guilt for past decisions that limited my time with my dad. Guilt for being crushed when receiving news about disease progression, even when it was expected. Guilt for grieving my dad before he’s even gone. Guilt for not talking about death and dying with my dad. Guilt for not knowing what to say. So much guilt.
Like Dr. Pelly says, it’s important to turn into those feelings and ferret out their source. Most of my feelings of guilt come from three sources: 1) Being away and unable to connect, 2) Having intense emotions, and 3) Avoidance.
We’ll get to the being away part in a later section, but the rest circles back to the “most important lesson” that I’m learning throughout my personal journey with anticipatory grief: It’s okay to not be okay. Grief comes with all kinds of uncomfortable emotions that society has taught us are bad or unwanted. Our initial reaction is often to hide, avoid, suppress, or find relief from those emotions. But by doing so, at least for me, it just caused more anxiety and fear. Letting those feelings in, accepting them, and noticing their impermanence has helped me navigate this journey.
Just like my mother, when I think of my father’s guilt, it too makes me sad. While it will be hard, we will navigate his loss together with an entire community of people who have been personally positively impacted by my father. And whether we are telling stories of epic adventures or wearing goofy outfits in his honor, we will smile through the tears.
… sorrow is part of the Earth’s great cycles, flowing into night like cool air sinking down a river course. To feel sorrow is to float on the pulse of the Earth, the surge from living to dying, from coming into being to ceasing to exist. Maybe this is why Earth has the power over time to wash sorrow into a deeper pool, cold and shadowed. And maybe this is why, even though sorrow never disappears, it can make a deeper connection to the currents of life and so connect, somehow, to sources of wonder and solace.” ~ Kathleen Dean Moore
Kelsey -
The others have touched on a lot of aspects of addressing guilt that I also share: being unable to be around as much as you would like, the feeling that you shouldn’t be allowed the occasional ‘normal’ day, a skipped phone call, projection of your own feelings onto others, and everything else. I wanted to also touch on the guilt associated with planning for the future.
I was presented with an excellent job opportunity a few months ago--great benefits, great work-life balance, and in a dream location...the catch was that it was on the literal opposite side of the planet. I applied on a whim, late at night, after one too many glasses of wine. I thought there was no way they would hire an American (especially during the pandemic), and my skill set didn’t really match 100% with theirs anyway, so I was sure my application would be tossed more or less immediately. It was fantasy, something to be vaguely hopeful about when hope seemed impossible. When instead of tossing my resume in the trash they aggressively pursued me as a candidate, it brought a whole new type of guilt. What kind of person would even consider leaving when your dad is about to die? How could you leave your mom right when she might need you around the most? What if you left and couldn’t come back to be there for your dad at the end? How can you think about the future when everything seems so horrible right now?
The night I got the email with an offer letter, instead of excitement all I felt was dread and guilt. I wanted this opportunity more than anything, but I couldn’t reconcile how guilty and terrible I felt for wanting it in the first place, let alone considering it. And while the solution to this conundrum--like most things in life--is communication, the guilt hasn’t gone away for me, and I think it will be something I’ll be processing for a long time.
The best advice I got came from a friend that I confided in about how I felt given the timing with my dad’s declining health. Her response: “There’s never the right time, there’s just time”.