Saying Goodbye to Mom
By Saul Schwartz
WASHINGTON, D.C. — My mother, Geraldine Myra (Young) Schwartz, lived most of her life in Pittsburgh, Pennsylvania, before she retired to San Diego with her husband, Norman Schwartz, 20 years ago. This is the story of her last few months and what I learned from about life from her valiant struggle with cancer later in life.
My visit to California after the diagnosis (June 2015)
“I can’t believe I have cancer,” my 82 year old Mom cries, lying in her hospital bed. She is now very frail at 86 pounds, after having weighed 120 pounds most of her adult life. Mom’s 5 feet, 5 inch frame is now rail thin.
I, the prodigal son from Washington D.C., have come to visit her and Dad in San Diego to determine how they as patient and caregiver are dealing with Mom’s lung cancer diagnosis. Never a smoker, Mom tells me “life is unfair. I’ve been a good person.” I agree with Mom. She has been a very loving mother and cares deeply for her two children and three granddaughters.
Being mom and grandma have been her most important life roles. Indeed, she lives virtually through our accomplishments. Most of our conversations are kept focused on our career paths, school activities and home remodeling, rather than on the pain that keeps her in almost constant discomfort.
Unfortunately I am an experienced cancer care giver, as my wife Cheryl died of colon cancer fifteen months after her diagnosis. Seeing Mom as a cancer patient and my 82 year old dad as the primary cancer care giver provides me with a very different perspective on handling the cancer diagnosis later in life.
Mom’s oncologist and team of doctors quickly determined that she is too weak to handle any of the normal lung cancer treatment options – chemotherapy, radiation or surgery. Mom is resigned to life out the remainder of her life with an emphasis on quality of life and pain control. Any treatment would be too harsh and the quality of her life would deteriorate.
Dad is hopelessly devoted to her care and comfort. After her diagnosis, Mom relies on Dad to the point of dependence. As a result, neither gets much sleep. Eventually Mom falls at their apartment. Dad cannot help her get up. She then is taken by ambulance to the hospital and thereafter to the nursing home to be rehabilitated, hydrated and fed so that she is well enough to return to a home setting.
Talking with Dad is difficult. Having just celebrated their 60th wedding anniversary, I’ve never seen him so sad and tearful. Dad is a sensitive soul. Mom and Dad have spent so much time together over these years that it is hard for him to even imagine a life alone for the first time since he was in his early twenties. Dad’s days revolve around getting Mom comfortable in bed; sneaking extra pain medicine to Mom and helping her navigate the health care system.
Mom remains fully coherent in our conversations. However, she is very anxious and fearful of the unknown. Mom is quite aware of her diagnosis but does not know what cancer will do to her body. Since she is not being treated, Mom is not aware of the advancement of the cancer, but knows that it has not spread to other organs.
Mom and I recall past memories – to some extent. She experiences some regrets – like why she didn’t travel more. But when I gently probe where Mom would have liked to visit, she has no specific destination in mind.
The days in the hospital (and then the nursing home) are extremely long for both Mom and Dad. Mom sleeps on and off, during both day and night. As the cancer progresses, Mom sleeps more and eats less. She is less able to concentrate on reading or watching television. Her concern for world events diminishes. Mom prefers talking to family or the health care staff. She spends long periods of time staring off into space, without words, internally reflecting on her life.
Physical therapy provides Mom with difficult challenges. She experiences great difficult with walking at first, and then with getting out of bed.
In part, this is mental, as she is fearful of yet another fall. In part this is physical, as she continues to weaken.
Mom repeatedly expresses her desire to get back home, pleading to doctors, nurses, therapists and social workers that she would do just as well at home. Mom understands that all of these caregivers have her best interest at heart, but she is tired from being out of her normal routines and comfort zone.
Mom and Dad had lived in the same apartment in San Diego for 20 years. That apartment is no longer an appropriate residence for them, as they need meals provided and medical care on call. While Mom is in the nursing home, Dad arranges a move to a senior-oriented apartment, the Patrician, where they’ll get two meals per day, have many social activities as options and can obtain medical care if needed. For Dad, this move relieves him of some of his cancer care giving burdens. He simply hopes Mom will get to enjoy it.
The Patrician is a beautiful facility with caring staff, friendly residents and modern physical facilities. Dad was reluctant to move because of the increased expense, but once they are settled, he enjoys the meals and many of the varied activities (such as bingo, bridge, computer training and musical entertainment). For the first time in many years, they make new senior friends.
Hospice in the home (July-August 2015)
After a week’s visit, I return home to my work and life routines. I call Mom and Dad daily for updates.
One month later Dad calls to tell me that Mom has fallen once again. During a short hospital stay, the tests revealed that although the cancer had not spread to other organs, the tumor in the lung had grown substantially. As a result, Mom’s eating is impaired and she is no longer able to walk. Mom is released back to The Patrician, where hospice in the home begins with a hospital bed and regular visits by the hospice nurse.
Dad supplements the hospice care with private nursing assistance, keeping Mom clean, fed and attended to with companionship. The 24/7 care allows Dad some respite to enjoy the activities at The Patrician without feeling that he must stay by Mom’s side constantly.
The hospice staff makes it known to Mom and Dad that her prognosis is bleak and that they don’t expect her to live more than 6 more months. As a result, I tell my daughters, Danielle and Miriam, of the diagnosis and they spend a weekend in California with my parents, knowing that this may be the last time they spent with their grandmother. During a trip to Southern California, my fiancée Fern is also able to share some quality time with my parents. Mom and Dad are thrilled with these visits and have great conversations.
On one weekend in August, my Mom takes a turn for the worse. My sister Sue calls me in great distress from San Diego, telling me that my parents had not yet purchased plots and had not made any arrangements for a funeral for Mom. After several hours of research, I find and speak to representatives at a funeral home and a cemetery. I provide Sue and my Dad with information so that they can go out, pick out plots and make final arrangements for my Mom’s funeral. After hasty arrangements are made, my Mom pulls through and recovers back to her hospice routines.
In the meantime, I face whether or not I need to make another trip to California for a final visit. Although I had a good extended visit after her diagnosis, I would like to visit Mom in her final days if possible. It is really hard to time such a visit, given the demands of work and home life. On the one hand, I feel like I have said my good byes to my Mom, had nothing left to resolve with her and yet I felt it would be supportive of Dad to be there at the end.
I continue to have daily conversations with Mom and/or Dad. They are both acutely aware that Mom’s time is disappearing like sands in an hour glass – but I am pleased that we are still able to have meaningful discussions.
Mom’s last days (August 25-26, 2015)
Just like with Cheryl’s cancer, the ends comes unexpectedly and quickly for my Mom. Tuesday was a fairly typical day with my parents’ “new normal” routines. Mom was able to get out of the apartment in a wheel chair, strolling along the halls of the Patrician with a nurses’ aide. Dad was able to go downstairs to play bingo. I had a very routine phone discussion with them to go over the events of the day.
In the evening, Mom began to softly moan. Her skin became clammy and cold. She stops talking. Dad calls the hospice. He is shocked to be told that Mom’s systems are shutting down. She is dying. My sister rushes over to the Patrician to be with my parents in their final hours. The hospice nurse administers pain medicine and Mom dies peacefully in the middle of the night.
I suppose that if I had warning of Mom’s impending death, I could have quickly booked a flight to San Diego to be with her and Dad. I have no regrets, as I had anticipated that my June visit most probably was good bye. In this day of extended families living thousands of miles apart, I feel fortunate to have had regular and frequent phone calls with Mom.
As I fly out to the funeral, I conclude that Mom had lived the full life that she had always wanted. She was able to be with the man she loved for her entire adult life, over six decades of constant companionship. Now my challenge is to help comfort my Dad and provide him support to begin his life without Mom.
Like me, Dad has lost a spouse to cancer. Like me, Dad can – eventually – move on with the next chapter of his life.
Lessons learned:
- When faced with a cancer diagnosis later in life, it is a rationale decision to not pursue aggressive harsh treatments. Rather, an emphasis on pain management and quality of life can be the best choice in a difficult situation.
- Being with Mom in person after her diagnosis brought me great peace and, eventually, closure to our life-long relationship.
- Support for Dad as the prime cancer-caregiver and then as the parent survivor was just as important as being there for Mom.
- Even from a geographic distance, I was able to add value by helping my parents find suitable senior housing more appropriate to their altered health situations and by guiding them in their unpleasant end-of-life planning tasks related to Mom’s death.
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Saul Schwartz is an attorney for the Federal government.