Facing grief, life, cancer with truth, not homilies.
I never knew my dad’s parents. They died before I was born. This wasn’t unusual. Many people grow up without extended family. My parents didn’t know any of their grandparents either. However, my mom’s parents were always part of my life. I loved them. But they weren’t the type of people who had much input into how I grew up. They were immigrants with limited ideas that didn’t seem particularly relevant to their current time. Although they were loving, they weren’t engaged with more than the most basic parts of my world. Food, a new dress and banter around a kitchen table. Aside from that, they didn’t have much to offer to me, a child of the 60’s. My grandfather died when I was a freshman in college. My grandmother lived long enough to meet my firstborn child. We appreciated and loved each other but their deaths weren’t earth shattering for me.
When I became a parent, we traded visits with my mom and dad, us driving to see them while they took turns coming here. But they were getting older and life became more complicated. When my daughter was 5 and I was pregnant with my son, my parents moved from Chicago to live near my sister and me. They’d both experienced significant health issues, and running up and back to the city was becoming more and more challenging as my life got busier with kids and work. Having them close meant that I could more easily take care of them as they aged.
They arrived just before I had my son. I had three months’ maternity leave and another month when I was able to take him to work with me. He was a happy, luscious baby and my parents were entranced by him. My mom said, he’s a good one – I’ve seen a lot of babies and I know. They offered to watch him during the week while I worked. Although anxious about their health, I was relieved to have him in a safe, loving environment. The early months of my daughter’s life entailed three different caregiving settings and I was worried and stressed about her all the time. With my parents here, I was able to nurse my boy on my lunch hour, call and check on him as often as I wanted, and be generally relieved that he was so adored all day.
But during that time, my mother was hospitalized with newly developed diabetes and my father declared he could take care of my son by himself. I found this astonishing as I couldn’t remember my dad ever feeding and changing a baby in my life. He managed it. But I didn’t want to burden them with the responsibility so I found alternate care. My folks were beside themselves and so emotionally distraught that I let him go back to them. They managed to stay well until he started day care at about 14 months old. He was with them for just over 10 months.
We spent regular family time together and my parents were babysitters and overnight hosts on numerous occasions. My mom, so perpetually girlish, played dress up, fabricated amazing fanciful stories, and read lots of books. Dad took everyone out for dollar pancakes and made sure no one got injured during adventure games. My kids were lucky to have so much extra attention. They were having the extended family that I’d had, but with greater intimacy with my parents than I’d had with my grandparents. It was lovely. Sadly, a scant two years after they moved here, mom and dad got cancer within 5 weeks of each other. Our world changed overnight. My mother survived her breast cancer but my dad succumbed to his bladder cancer in under 4 months. My daughter was 8 and my son was just shy of three years old.
Both my kids were traumatized. My daughter was older and able to reason things through, to understand and accept our explanations about cancer and death. My son’s experience was different. He was too little. He couldn’t make sense of anything. He’d never been a great sleeper and for the next several years couldn’t sleep through the night. He wound up in a little nest on the floor by our bed, always reaching up with his hand to make sure we were there. He was terrified of death. He argued incessantly about the unfairness of having no company in his bed, despite being surrounded by a myriad of plush companions who “weren’t humans.”
When he was six and more cognitively aware, we got him help so he could work on the fears that had started when his grandfather effectively disappeared. In his world, my father had vanished with no real explanation. After some time, he learned self-soothing skills and eased into a more normal schedule. The bond he’d built with my parents went forward with my mother.
As he grew older, he maintained an intimate relationship with her and considered her a confidante and a person of trust. He never went through the phase of distancing himself from her like so many young men transitioning to adulthood. He always spent time with her, eventually returning all her caregiving with nurturing of his own. As she aged and became more limited in mobility and cognitive function, he visited her with his movie camera to interview her and save her memories. He took her out to breakfast, her favorite meal, and wheeled her outside through the parks and our campus community, singing and chatting with her, tucking sprigs of lilacs behind her ears and making her convulse with laughter. I marveled at his consistent devotion and often wondered about the connection that was created during those early months when he spent all his days with my parents. Would his relationship with them, and most particularly my mother, have been the same, absent that shared living time? Who knows? On the eve of her death, he came to say goodbye. As I watched them, I was powerfully moved by the depth of the extended look they shared and I felt the passing of the powerful emotions between them. I’ll always remember that look. I know that he still misses her every day.
I spent my career in a small intimate office working with three women for over 30 years. They were a few years older than me. When they turned 65, they all retired. I stayed on and helped train the new employees, but I was the classic fish out of water and had no idea how I’d get through another three years until I became eligible for my pension. Then my daughter became pregnant. I realized that I had enough years to retire as long as I had income to cover the costs of my health insurance until I was Medicare-eligible. That amount was significantly less than the cost of day care for an infant. A perfect solution for everyone. I chose to provide my daughter the same gift my parents had given me, the ease of going to work without fear for the baby.
I retired in October 2010 and began caring for my grandson when he was seven weeks old. The adjustment was greater than I anticipated. I’d been working since I was 15, always having a job as I went through my older high school days and college. Except for maternity leave, I’d never spent all day every day with my children except on weekends. My days with Gabriel were long and challenging, but I fell deeply in love with my grandson. My husband did, too, coming home after teaching, snuggling into naps, reading, playing and singing. My mom, who was in her late 80’s and growing infirm, moved in with us. Our son, who was working on his PhD, spent half his year living at our house. We led the multi-generational shared living situation that had been more common in previous generations.
The rhythm of our life came to a dead stop in April, 2012, when my husband was diagnosed with rare Merkel cell cancer. He got through his initial surgeries and treatments and had the summer to recover before returning to teaching. But we knew we were living under the threat of an incurable orphan disease. Meanwhile, I managed to continue to care for my grandson with a bit of schedule juggling. We hoped I could keep him until he was 3, a good age to start to day care and learn socialization. He was the bright light in the midst of our fear and anxiety. I was sad to see him move on to preschool in August of 2013.
Michael’s health seemed stable. By that time my daughter was pregnant with her second child who was due in January. I would have a few months off and then begin caring for the new grandchild in February, hoping to give him the same care as his brother. But life threw us its worst curve in November of that year when Michael was diagnosed with widespread metastatic disease. We were told that absent treatment, he would have 2-3 months to live. All plans vanished. Michael began chemotherapy in December after wrapping up his teaching career. My daughter and son-in-law secured a daycare spot for the new baby as I intended to devote myself to Michael’s care and become his medical advocate. We made plans to move my mother into assisted living as I could no longer divide my attention between her and my husband. The big question was whether Michael would tolerate his medications and stay alive long enough to meet the new baby. I felt like I was living my parents’ life with Michael teetering on the edge of death and my young grandson facing the same challenge as my children had.
Michael defied the odds. He responded well to treatment and was here to meet his new grandchild. And Gabriel got older, past the time when my son could make little sense of what was happening to his grandparents. As he did, his cognitive skills grew and although we kept details of Michael’s cancer from him, he understood that grandpa was sick. For a few years the ups and downs of Michael’s health didn’t interfere with Gabriel’s daily life or his emotions. He felt stable. His grandpa took him to swimming lessons and helped him practice riding his two-wheeler. On the bad days, they curled up together and watched kids’ shows and movies on television.
All that changed in January, 2017 when Michael’s cancer first subtly, and then with a roar, returned and affected his brain. After a few bewildering weeks with tests that came back negative for disease, I dragged him to the ER to get to the root of the problems. A brain MRI unearthed widespread cancer, like a meningitis of the brain. We wound up staying in the hospital for 32 days and nights where Michael opted for brutal treatment that offered little hope for survival. While he struggled on, the hospital room became the place where the grandkids saw their grandfather. And it was weird there. He slept a lot and was barely communicating. I tried to be normal but was incredibly distracted. Their visits were short, scary and unsatisfying.
Somehow, Michael survived those grueling weeks and we returned home. He wasn’t the same person, although for a few weeks, he regained enough strength to go across the street and visit the kids in their home. But he was confused and frustrated by the cancer advancing in his brain. One time, he was short tempered with Gabriel who was just being a normal, talkative 6 year old boy. I admonished Michael who was immediately regretful. He apologized to Gabriel. That little boy said he understood that grandpa didn’t mean to be harsh and that he knew the cancer had corrupted his brain. An unforgettable moment. As days passed, Michael gave Gabriel his pocket watch which he’d always loved because it had a cool red light that was fun to turn on and off. When he got it, he said he understood that this was unexpected gift that would always be a memory for him.
In late May Michael died at home. That afternoon, our family gathered and Gabriel asked for the bandana Michael wore during chemo and the one which he always wore in camaraderie. We all began to grieve and make our adjustments.
During this past year, I have been operating on several planes. First, there is my personal journey about the death of my best friend and lover who was with me for 45 years. Then there is the view from my internal observation deck as I stand at the edge of my inexorable physiological diminishing. This has been an interesting challenge as my body changes and I face the fact that my best physical years are behind me. I would like to be graceful about this transition although I wrangle with my expectations for myself and the expectations of others.
Then there is my role as mother to my grieving children. Although they’re adults, they need to share their feelings about what for many years was our tight knit foursome that stood against the world. Michael was a huge loss for them and now, I embody not only myself, but the institutional memory of our family. They were always aware that nothing lasts forever. But for a time, it seemed like Michael would.
And finally, there are my grandsons, and most particularly Gabriel. I worry about Tristan for whom Michael’s death mirrored my son’s experience with my father. He was too little to understand what happened aside from knowing that grandpa was sick. One day he was just gone. For awhile, he looked for him and he can still identify him in photos. But I have no way of knowing how this death will manifest in him until he’s older and more able to express himself.
But Gabriel. He remembers everything. He lived with us for almost three years, every weekday for most of his waking hours. As he helplessly watched Michael slip away, he was alive with awareness. Suddenly vulnerability entered his life. He sounds like an old guy sometimes when he says things like, life just isn’t the same without grandpa and that everything has changed. He recognizes mortality, his and everyone else’s. Thankfully he has the verbal skills to express his feelings but it is daunting to stand in the face of his questions and fears. Trying to be truthful while providing comfort is hugely challenging. What do you say to a fearful child who says promise me you’ll never leave me? He’s smart enough to consider what might be inherently dangerous. Those things are to be avoided. He’s also thinking about a career which is both safe for him and which may allow him to understand why some people survive cancer and others don’t. He likes to share private time with me so he can speak his worries and feel my presence which he associates with safety and security. If I cry, his face crumples with fleeting looks of fear, the desire to comfort, and the hope that I will emerge on the other side, smiling, just being grandma. Quite a learning curve.
The sweetness and tender, open love of this sensitive child lays across my shoulders as both a curious balm and a heavy weight. He reaches into the parts of me that are still for giving to others. And because he is needing so much reassurance, I dig deep to assuage his vulnerability. If I live long enough, will he and I replicate the relationship my son had with my mother? Her old age doesn’t appeal to me because she was so physically limited and eventually dementia appeared. Could a bond with a grandchild make that work for me? That all remains to be seen.
I often feel I’m stretched beyond my capacity. Needing to be okay for the ones who love me can be a heavy load. I’m trying because it’s my nature to give. But probing around my insides is a necessity and more pressing right now. Balance is always hard.
Life feels like overlapping circles. Sometimes I don’t know if I’m leading my own life or my mother’s. Our similarities are obvious and profound. Of course there are vast differences as well. She lived for another 25 years after my dad died. She wasn’t very motherly toward me and instead required a lot of care and support. But she remained a wonderful grandmother. I don’t know how much time she spent in deep introspection. That wasn’t her way, despite her astute perception about other people. I suspect I will keep paying attention to everyone, while trying to deal with myself and attempting to stay as even as possible.
I’m still exploring life on my own. I have so many questions and interests which range from mundane to obscure. Managing my time and trying to be a mindful mother and grandmother are important to me. But often I’m left wondering about the inexplicable sensations that push aside everyday challenges and are so unexpected. Why do certain pieces of music make me feel that I’m breathing in the essence of Michael, filling me with peace and contentment? What is that about? I have no idea. As he often said, it is what it is. Wending my way through the density of all the layers, mine and everyone else’s, is my ever morphing daily mystery. I’m trying to live life to the fullest, to leave the best of me with those I love. Inch by inch….