"My father is an example of a person who wanted everything – and it did prolong his life and he had some quality to it. His advance directive would have said 'give me all you got.'"I have a good story and a bad story. My wife and I (actually mostly my wife) cared for her mother and my father (not at the same time) in our home until their death. My mother-in-law was a beautiful story. My father’s story, and what he required for my mother in her illness, is a different story.
My wife’s mother had an inoperable throat tumor and her doctor said if she remained in the hospital (this was in the early 1990’s) he would have to put in a feeding tube because he feared a nurse on the floor would turn him into the District Attorney if he didn’t. My mother-in-law (a devout, practicing Catholic) was very specific and wanted no heroic efforts – so we took her to our house. She was completely bed ridden for a year and died peacefully at our house.
To watch my wife care for her was a study in unconditional, absolute love. Even our son, who was attending college and worked a night job as a baker at a local grocery store, attended to his grandmother when he got home at about midnight. My wife, and son when he got home, would turn her and put lotion on her back and legs. The rest of the kids would stop by and visit. It was a beautiful thing to behold.
My father then came some time afterward to live with us after wearing out my two sisters (late 1990’s). He was with us for four years and wanted every medical intervention that was ever devised. Furthermore, he also wanted the same for my mother, who had died in a nursing home some years earlier. The story I have to tell is really about my mother.
Both my father and mother were lifelong smokers, so their illness was most difficult, both having emphysema and heart disease. Breathing, coughing, small strokes, oxygen, difficulty sleeping, being bed-ridden all plagued my mother.
When she was near the end of her life, she stopped eating. She was clear – she wanted to die – she was done. She was also a very devout, practicing Catholic.
By this time she was in the nursing home and my father insisted she have a feeding tube. She would rip it out – he would require it be put back in. Finally, because my father wanted the feeding tube, and the nursing home having no other option, THEY TIED MY MOTHER’S HANDS TO THE BED! When I visited the day they tied her to the bed, she was thrashing her legs about. I asked if she was in pain and she shook her head “NO”. How was I to interpret that? It was so bad, I could not go back to visit – my sister had to handle that from then on. Fortunately, a nurse talked to the doctor and they agreed that she must be in pain – so they gave her morphine to relieve her discomfort. Within a day or two, the un-intended consequence was her death. THANK GOD!
This is not the end of the story for my mother. I believe now I know what the leg thrashing was all about. I have severe restless leg and my doctor says it probably has a strong genetic component. My RLS I describe as agony, but I’d be hard pressed to say it is pain. I think my mother had RLS and that accounted somewhat, at least, for her leg thrashing.
But worse than the RLS, after her death, I remember that she had completed a Catholic series of devotional efforts to help insure that there would be a priest at the time of death. I think I am the only one who knew of her doing this. I didn’t remember because of my own emotional turmoil at seeing her tied to the bed. Had I remembered, she would have had time for a priest. This failure haunts me to this day.
My mother-in-law had an advance directive of sorts because she communicated it to my wife – and she honored it.
My mother had no such directive and my father did what he thought was best for her. Had she an advance directive, she would NOT HAVE chosen the path my father directed the nursing home to perform.
My father died after 4 years of increasing breathing difficulty, but I must say that all the medical attention he got did prolong his quality of life. Until the last few weeks, despite many trips to emergency, he was up early and doing his “paperwork”. His “work” consisted of tracking his health, in writing, and the times his nursing aides came and went during the day. We were his caretaker at night, and worked ourselves during the day. He delighted in catching the nursing service in two financial mis-billings – both were in his favor – but he had the fun of pointing out their error.
My father is an example of a person who wanted everything – and it did prolong his life and he had some quality to it. His advance directive would have said “give me all you got”.
My mother suffered immensely because of no directive. My mother-in-law had a daughter who was willing to honor her wishes for her last days.