Today’s blog
Lynn Murphy Mark
Times past
As I was checking Facebook this morning I noticed that I had a message from the daughter of a friend of mine. The message was a photo of my friend and me when we were hospice nurses at St. Joseph’s Health Center in St. Charles. We are arm in arm and smiling widely. She was the Intake Coordinator at St. Joe’s and I was the same thing at DePaul, across the river from St. Charles. We were each wearing very white lab coats over regular clothes, so we were at work when the picture was taken. I don’t remember the occasion, but it must have been a happy one.
We became good friends in addition to being good co-workers. She taught me everything she knew about Hospice because I was new to the field, and because she wanted to help me succeed at a hospital that our system had just acquired. There was never a time when she was too busy for a question, or for a longer conversation about what the next steps should be.
She knew the kind of pressure this job could manifest – she and I were the first people to encounter a patient and family who had just received a referral to hospice care. We had to know how to gently explain what the program is about, and how to remain hopeful in the face of a terminal diagnosis. We met people in all stages of grief, anger, acceptance, relief, fear, and confusion. Our job was not to coerce someone into signing up for hospice, but to present it as an option when it might have seemed that there were no more possibilities. Our people had most often been in active treatment, sometimes for years, and were suddenly put into what might have felt like a hopeless situation.
We exchanged experiences at the end of a work day. We helped each other out when necessary. We took our turns at being on call nights and weekends, and had a little bet going for who could visit the most QT stores to get coffee at 3 in the morning over a weekend on call. Together we presented prospective patients at our weekly team meeting, making sure that the criteria for hospice care had been met and that the patient and family were in agreement with our philosophy of comfort care. Sometimes we butted heads with our boss, and together we problem solved how to address the issue that caused whatever the disagreement was.
We became good friends. We were both Cardinals baseball geeks. We each had a son about the same age and spent time giving each other pep talks about the best way to handle teenage angst. Both boys had issues at school, despite being bright kids. I look at the men they have become, and they are good, solid guys. Then I got to know her husband, who is one of the best men I have ever encountered. Sadly, he died some years ago and I lost a person who felt like a brother I never had.
By the time he died it had become apparent that my friend was having some cognition problems. There was a point at which she could no longer handle the details of her job. She was made to take early retirement, which crushed her spirit. She had been a nurse for decades, raised three great kids, and devoted her professional life to hospice care. Her kids helped her sell their house and she moved in with one of her daughters. They created a lower level apartment for her to live in where she could have some independence, but get any help she needed.
I remember when her kids had to take her car keys, and she could no longer drive. We were on our way to a baseball game when she told me about the trauma that caused her. She understood that safety for her and others was their main concern, but losing her independence was almost too much for her. There was very little I could say except to tell her I was sorry that she experienced such a loss.
My friend has AFTD, or “Frontotemporal dementia”. It is a type of dementia that affects people at a much younger age than some of the other types. Usually AFTD begins between the ages of 40 and 65. For my friend, it began in her early 50’s. The time came when she can no longer be left alone while her kids are at work. Now she lives in a facility where she gets 24 hour care and supervision. It’s time for Rose and I to visit her again. I’ll work on that this week.