By LINDA G. BEELER in the New York Times article
At age 96, my mother moved to New York City to live with me and my family in our two-bedroom Manhattan apartment after becoming increasingly isolated while living alone in Florida. She moved into my sons’ bedroom surrounded by all manner of adolescent paraphernalia, including every style of trendy sneakers, a giant papier-mâché statue of Michael Jordan and a poster of Bob Marley.
Three years later, at age 99, she was hospitalized and diagnosed with pancreatic cancer. Because of her advanced age, there was little to do to except make the last months of her life more comfortable. Her doctor arranged for home hospice care through Calvary. But part of me wanted to place her in a nursing home.
The idea of hospice care in my home overwhelmed me. I did not want my apartment to become a nursing facility, and the idea of personally taking care of my mother was frightening. I was preoccupied with thoughts and fears of losing her, and I was very afraid of witnessing her physical deterioration and her death.
As a psychotherapist in private practice, I treat people with emotional problems like anxiety and depression. I am introspective enough to know that I am comfortable with treating the mind, but squeamish about medical problems, especially serious medical issues.
Now my mother was dying, and I had to live with the uncertainty of what was going to happen. When would she no longer be able to bathe herself? Was she going to be bedridden? Incontinent?
Step by step, I overcame my fears, accepting the reality of our new situation. Looking back, the choice was inevitable — and I am grateful I took the steps of that life-changing journey.
My husband encouraged me to take on the challenge of caring for my mother in our home. He thought it would be cruel to put her in a nursing home. Easy for him to say, I thought, since my mother’s physical care would fall predominately on me.
Upset over my dilemma, I was crying. My mother, in her hospital bed, asked, “Why?”
“I don’t know how I can continue taking care of you in our home,” I told her. But I asked her what she wanted to do.
“I want to go home,” she said. “We will manage.”
So she left the hospital to again live with us.
The Calvary hospice nurse walked me through all the steps of home hospice care. After the first home visit, the nurse ordered an oxygen tank and told me there could be no smoking in the home or even in the hallway outside my apartment door, because the oxygen was flammable.
That made me uneasy. Although I was instructed how to use the tank, I was anxious that I would forget how to use it when the moment arrived that my mother had difficulty breathing. In my panic, I called the medical home care supply company to take the tank back. When my mother’s doctor told me that it was critical to have the oxygen available in case of an emergency, I relented. I was terrified that she might suffer.
My mother at that point had her full faculties and was able to get around. She could even walk, albeit very slowly, to the senior citizen’s center on our block and to the Jewish Community Center across the street, where she played mah-jongg and canasta. That stopped soon, however, and I had to order a wheelchair for her to use when she went out.
Calvary provided me with a home health aide for five hours a day and a social worker. That was helpful but stressful. Because of my work as a therapist, coordinating schedules was a challenge.
As she grew more ill, my mother became too weak to shower, dress or go to bathroom by herself. I had to hire an additional home health aide for the afternoon and for full days on weekends. Eventually, I needed to get an overnight aide.
I was surrounded by an army of hospital-like caretakers who used hand sanitizer immediately upon entering the apartment, ate in our kitchen, showered in the bathroom and slept with my mother in one of our two bedrooms. I felt the loss of control and a sense of chaos, which was made worse when my youngest son returned home after graduating from college and underwent emergency surgery for a torn A.C.L. He generously gave up his bedroom to my mother (and to the aide who slept there at night) and camped out in the living room.
My house had truly been turned upside down. But what kept me sane was knowing that the chaos was temporary, and that we were providing my mother with the care she needed, in the setting that had been her choice.
I had to learn to trust that the aides would act in my mother’s best interest. In fact, most of them were generous and devoted to my mother’s care to the end.
Her last days were not without a touch of humor. One night, the aide called me into the room telling me that my mother, still with her full faculties, was “seeing smoke.” I thought, “Is she hallucinating?”
I sat down on the bed. My mother pointed to the Bob Marley poster. She asked, “Is that famous man smoking?” She had looked at that poster for three years and never asked until then.
But another night, around 1 a.m., my son overheard my mother yelling, “Don’t touch me.” He found the nighttime aide pushing my mother back into bed. The aide wanted to sleep through the night and did not want to be bothered taking my mother to the bathroom. I fired the aide the next day.
Gradually, I surrendered to the reality that my apartment had been turned into a nursing home. My mother now had an oxygen tank, a walker, a wheelchair, a shower chair, a commode, Depends and bed pads.
Still, I had said from the beginning that I did not want a hospital bed in my home. Its name alone symbolized the transformation of my home into a hospital. But two days before my mother’s death, I relented. My mother could not get up from the bed that she had been using. She needed the adjustable bed to lift and transfer her.
With the arrival of that bed, I finally accepted the new reality: my home was indeed transformed into a nursing home, despite all my initial fears about living with my dying mother in that environment.
At 99, just 8 months short of a century, my mother died in my home surrounded by family and the Bob Marley poster. It was a peaceful passage. She died with grace and dignity.
As I reflect on the experience, I am glad that I was able to be with my mother through the end of her journey. It was tough to watch this once strong, vital woman become thin and fragile. And as my last living parent, she was the buffer between myself and the reality of my mortality.
Still, the experience was emotionally rich and liberating. And, in the end, we were both at peace.