My wonderful, dear, precious mother is dying. She has terminal metastatic cancer, adenocarcinoma, that began in her colon and quickly metastasized to her liver. She first started experiencing periodic stomach pains in early 2019, but numerous tests and exams divulged no significant results. We were concerned for her but felt relieved when all tests came back negative. It is with her gracious permission and indominable spirit that I relay our story.
When the global COVID-19 pandemic shut the world down in March 2020, we sheltered in place as most Americans did and prepared to ride out what we hoped would be a short storm. I was teaching remotely from home, and as the coordinator of a counselor education program, I was blessed to be able to make the final decisions on that front. As May 2020 rolled around, my mother complained off and on of more stomach discomfort, but it would quickly fade and was nonspecific. On May 18, however, she woke with great discomfort in her belly. A trip to the doctor led to more tests, and we were finally able to schedule a barium swallow exam for early morning on May 20.
My mother endured the pretest liquids with great difficulty but was eventually able to have the test completed. She came home with us, feeling exhausted and very nauseated. The vomiting soon ensued, and she became increasingly uncomfortable. Our alarm grew after making frantic calls to the doctor throughout the day and taking a resultant trip to the emergency room in a neighboring city.
After my mother had a thorough examination, a surgeon was consulted, and a blockage was located in my mother’s large intestine. Papers were hurriedly signed, and we kissed my mother goodbye. Due to COVID-19 restrictions, no one could stay with her. My mother was 94 at the time and scared to death to face the operating room alone.
The surgeon called us close to midnight. My mother had made it through the surgery OK and (miracles as well) did not need to have a stoma or colostomy bag put in. The surgeon believed he had been able to dissect the entire tumor but would have to test the margins of course. This was a slow-growing tumor, he told us, and my mother had probably had it for some time. Due to her advanced age, even if it ever spread in her colon, she might actually pass away from something else entirely. So, not to worry, he said.
Recovery in the hospital was a nightmare. The first night went well, but my mother had sadly aspirated the next morning and wound up with pneumonia. The medical staff was trying its best to help her, but that becomes trickier with advanced age. My mother is a bit hard of hearing, has short-term dementia-related memory loss and can be a very feisty Italian lady. She stands all of 4 feet, 4 inches and has severe osteoporosis that has resulted in very pronounced scoliosis of her spine. Therefore, she cannot, lie flat and must have the head of her bed propped “just so” to even sleep. I learned later that the medical staff had called the crash cart twice for her, almost losing her in the process.
I tried frantically to get answers as my mother seemed to linger but not improve. Several days went by, and numerous “hospital specialists” were assigned to her case, but none realized all the nuances of her interwoven symptoms. My first career in life, before I became a substance use disorder counselor, school counselor and university professor, was as a respiratory therapist. The names of some of the equipment have changed over the years, but not a person’s anatomy and metabolic processes. I was therefore able to keep up with the physicians regarding the dire circumstances of my mother’s respiratory acidosis, lowered PO2 oxygen levels in her blood, and the infiltrates and atelectasis in her lungs.
The head medical staff finally acquiesced on my mother’s eighth day there, and they let me visit her. My counselor training helped profoundly in working with everyone in her care. My mother was quite in distress when I first arrived, but as is often the case with family visits, began to thrive. The nursing staff said I had to stay put in her room, and they brought me meals and provisions. By the second day, I had her up walking. I swapped places with my grown daughter, and by the fourth day, they said we could take my mother home. It was indeed a miracle that we were able to wheel her out of the hospital.
Twists and turns
We took the rest of the summer of 2020 to help my mother recover. It was slow going, but she gained strength each day. It was decided that the fall of 2020 would be taught remotely at my university, so I looked for a wonderful place for her to convalesce. I was incredibly fortunate to find a condo for rent right on the ocean, and we spent the month of September sitting by the ocean, taking long walks on the beach, watching the boats sail by, and loving every minute of life.
My mother was feeling stronger by October and was even cooking again, which is her favorite pastime. A monthly checkup raised some concerns, and more tests were ordered. To our heartbreak and dismay, the cancer had massively invaded my mother’s liver and was voracious. Her oncologist suggested chemotherapy medication that she could take at home but, sadly, it would perhaps prolong her life by only a few weeks or months. There was no cure or other treatment.
My irascible and feisty mother said she wasn’t ready to give up, so we began the ritual of chemotherapy pills at home just after Thanksgiving. She seemed to tolerate that well until just a few days after Christmas. The pills had reduced the size of her tumors, but she became quite toxic to the point of having constant diarrhea, vomiting and not eating.
January 2021 rolled around, and my mother was still quite ill from the chemotherapy. With incredible strength of will and sheer grit, she fought on and finally began to feel a little better by the end of the month. Her oncologist introduced the chemotherapy again, but at a lower dosage, and she tolerated that well.
By June, her tumor marker blood tests showed that they had been reduced by over half. That was indeed remarkable in and of itself. Her oncologist had thought in October 2020 that my mother might possibly live up to another year; by June 2021, she seemed to be thriving. Incredibly, we were able to bring her to Hawaii that month, where I was presenting at an international conference that had been postponed from the year before. We were so very blessed to have that conference occur during the brief “sweet spot” when COVID-19 seemed to diminish a bit and the delta variant had yet to arrive. The trip was glorious. Several family members joined us, and we were able to visit many places we had gone to when we lived on Oahu a few years previously.
Early July brought another jolt of reality when another severe colon obstruction landed my mother in the hospital. After six days of intense, painful therapy and tests, my mother was slated for additional surgery. Her physician was extremely cautious and tentative about her prognosis. Literally, at the eleventh hour, just before her scheduled surgery, the treatments they had given her began to work. Another miracle had occurred! Three days later, we were again able to wheel my mother out of that hospital, without more surgery. It was a day to celebrate.
Sadly though, by September, her blood tests revealed that her tumors were growing again with a vengeance. The painful decision to stop the chemotherapy was agreed upon, because by then it was doing her more harm than good. Fall 2021 also had its extreme joys, however, as we were able to celebrate our daughter’s very tiny, but beautiful, wedding on Nov. 6. My mother was able to stand up for her as the matron of honor; it was a poignant and blessed day for all.
The long goodbye
The holidays have now come and gone, and again I marvel at my dear mother’s strength and perseverance. Despite our fastidious precautions, with all of us getting the vaccines and booster shots, COVID-19 entered our home in early January, and we all became infected with the omicron variant. It is a true testament to my mother’s will that even COVID-19 cannot stop her. Her symptoms resembled that of a bad cold — something else she could have done without. Thankfully, however, she made it through that horrible hurdle too.
Painful realities remain though, and we all agreed in late January that the time had truly come to begin the hospice process. I have never had hospice services for a loved one before, and there was a lot to learn. Some of the realities were quite painful, such as that my mother cannot see her established physicians any longer. We’ve also been asked several times to consider a “Do Not Resuscitate” order; we’re not quite there yet. I am reminded once again that death and dying is a process, not an event.
A plethora of nurses, social workers, delivery workers (bringing oxygen tanks, shower supplies and comfort meds) and a minister for spiritual support have come to visit. The very slow reality of the long goodbye is now at hand. As a counselor and university professor, I “know” about self-care, the many aspects of grief and loss, the need for continued support, and the existential angst one feels when realizing that nothing else can be done. It is an empty, hollow feeling that begets profound sadness.
I am extraordinarily blessed with wonderful family support. My husband and I have three grown children (two of whom are nearby and one six hours south), a wonderful son-in-law and daughter-in-law, and two amazing grandchildren. My university colleagues have been immensely supportive, as has my faculty and staff. I have the dearest friends one could ask for but, sadly, most are a great distance away. The miracle of iPhones and the internet have helped with that.
The pandemic has brought innumerable obstacles and immense sadness, pain, distress and heartache to us all, in one form or another. For us, it has meant that the last remaining months and days of my mother’s life must be limited to home. Yet serendipitously, I have been given even more precious moments at home with her. The days of shopping together, visiting nearby museums, going on short camping trips or talking for long hours at a lovely luncheon spot have all ceased. Instead, the tiny joys of taking an afternoon walk, watching a great movie together or enjoying the sunshine and warmth on our faces have taken on greater significance.
I marvel at my mother’s internal strength, her spirit and her deep love of life. I sit in despair sometimes as I watch her try to catch her breath, see her moving much more slowly, and recognize the distant look in her eyes; I wonder where she has drifted off to at times.
We talk often. She shares her innermost fears, regrets (blessedly, very few), and final wishes with me. These are sometimes painful talks, but they are necessary, cathartic, and I let her choose her timing.
I find myself walking with great trepidation down the long hallway to my mother’s bedroom in the morning when I haven’t heard her stir yet. Will I at some point just find her gone, peacefully? Will she have to suffer greatly (I fervently pray that she doesn’t), as my dear father — her husband — did from cancer so many years ago? Will I be able to let her know how very, very much she has meant to me, how much she is so dearly loved by us all? Can I properly express that without her, I never would have become the counselor, teacher, mentor and social justice advocate that I am? My family and I have been blessed by her comfort, wisdom and beautiful spirit for close to 96 years now. Letting go by inches is so incredibly difficult …
A shared reality
So many of my dear counselor colleagues, friends and students have lost loved ones due to COVID-19 over the past two years. We have shared this reality as human beings, and together we mourn each loss. I have been honest about my mother’s condition with all of them so that they realize that even counselor educators deal with grief and loss. I teach all my students about the vital importance of knowing your limitations, knowing when to reach out for support, knowing when to step back and take a break, knowing when you are not at the “top of your game,” and knowing that it is OK for us to be fully human.
Perhaps putting my thoughts into words here is just my way of doing so. I hope that for those who have endured or are enduring similar circumstances, my words can offer some support, connection and solace. It is our humanity and spirit as counselors that binds us.
So too, as counselors, each of us has helped dozens, if not hundreds, of people cope and work through their grief and loss. It is part of our very nature. It is what we do, and we are honored to do so. We have learned our craft well and know what to say, how to say it and how to sit with another human being during their profound sense of pain and despair. We must make that kindness and compassion that we so freely give to others available for ourselves as well.
My mother is dying with grace; I am learning from her strength to honor her journey thusly. I will grieve horrifically when she passes. She has asked me not to grieve so, but that would be impossible. What a gift she has been to my entire family, that she even worries about how we will feel once she is gone! The price we pay for loving someone so fully, so unconditionally and so openly is to grieve their passing with our whole heart, soul and being. To have been eternally blessed with her love, I would not have it any other way.
Suzanne Whitehead is an associate professor and the program coordinator of the counselor education program at California State University, Stanislaus. She is a licensed mental health counselor, a retired school counselor and a licensed addiction counselor. Contact her at firstname.lastname@example.org.
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