It is difficult for me to believe that the last time I wrote I thought I would be contributing on a regular basis about the process of caring for Liz as she underwent the clinical trial. Suddenly it is April. Such is the life of a caregiver. Time slips away under the daily obligations.
In the blink of an eye, it seems, Liz was gone. Her cancer, which had been rather dormant for 13 years, exploded and invaded every part of her body like pieces of shrapnel. So now I write to you from a place of deep grief, but with hope that my observations about my time with her may make you feel not so alone. Between December and March she went from a person who had control of her mind and her body to someone who was failing rapidly and ultimately succumbed.
I was not Liz’s primary caregiver. In December, her daughter, Gina, took over the day to day tasks of setting up her medication boxes and getting her to doctor’s appointments. But generally her daughter and I shared many duties. I would sit with Liz most nights and would relieve Gina so that she could get away for a weekend. I would accompany them to doctor’s appointments to be another set of ears and to make sure the right questions were asked.
I could tell that Gina was becoming overwhelmed. Some people become more pleasant and passive when they are fighting for their lives. Liz was not one of those. Liz’s memory was failing even as she continued to attempt to keep control over all that was happening to her. She could not handle the phone calls to doctor’s offices or if she needed to get information about her care. It was too much for her to explain her question over to each person she needed to talk to. Yet, she was indignant if we pointed out that her memory was the reason Gina would hover to make sure she had taken her meds, or changed her pain-relieving Fentanyl patch, or to encourage her to eat healthy food. If I urged her to use a cane or to not shower alone, she would brush me off. It was painful for me; she had already fallen several times, yet suddenly my physical therapy credentials held no weight for her. My expertise was for someone else, not her. I felt diminished and useless.
She was often rude to Gina and tried to still be the mother when it was clear that the roles had changed. Gina, being in her early twenties, would fight back as mothers and daughters normally do during that period of a young woman’s development. Often after Liz had gone to bed, Gina and I would talk about the difficulties of the situation. She would rest her head on my shoulder and we would just sit on the couch and hold each other until it was time for me to head home.
In the morning it would begin again for Gina, and I would arrive near the end of the day to take over the evening shift. This was the most difficult part for me. Whereas last summer Liz and I spent almost every night quilting and watching TV, talking and laughing, now the conversations had become limited in scope. I was already beginning to lose my friend. Besides Liz’s short term memory and judgment being impaired, she would sometimes venture into nonsense talk. She would send text messages and emails to me that made no sense. Add to this the reality of Liz’s elderly mother living in the home and an unhelpful extended family – it was turning quickly into and frightening and untenable situation. Sadly, we would not have to worry for long.
Written by Mary Horton Sondag
Mary Horton Sondag, BSPT lives in Lafayette, California with her husband, Alan, where they raised their three sons. She is a physical therapist, specializing in geriatric care in the acute, rehab and home settings for 30 years. Caregiver training is an integral part of her daily work in all settings. She enjoys travel, quilting, writing, singing and sometimes just doing nothing at all!
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