Please excuse my language. I’m not sure “sucks” qualifies as an official bad word, but it doesn’t seem very polite. My mother died a week and a half ago, and I’m in a pretty bad mood.
Her death was not unexpected, but it happened suddenly. The end was not bad, especially considering what had preceded it. Before I go any further, I would like to stress that I am not complaining about the medical care she received. It was wonderful and compassionate. The nurses and aides went above and beyond anything I would be capable of.
They say that from the time we are born, we begin to die. I’m sure there’s a scientific basis for that statement. However, I also know that at some point we begin the end-game. It’s the point when the doctors start weighing the benefits of a procedure against the chances the person will not survive it or will suffer more harm than good from it. It is also the point when they start saying things along the lines of, “For someone your age and with your chronic conditions, here is what we expect …”
I have read many articles about the cost of the last year/six months/final illness of life. I’m sure they are no exaggeration. Since the end of last August, my mother spent one day not in a hospital/rehab center. Additionally, the last three days were in a nursing home. She started with shingles and pneumonia, then went to rehab. She was home one day when she returned to the hospital with pneumonia. She later went to rehab with a week in the middle spent in the hospital. The only reason she got out of rehab was because she “plateaued”, a nice way of saying the rehab wasn’t doing any good.
I did a unit of Clinical Pastoral Education as part of my religious studies. I worked in a hospital as a chaplain intern. One of the priests there said that the medical community does not like to talk about death with families. And families do not want to hear it. doctors are trained to save lives, not monitor the end. I think there is a certain truth in his opinion. There was no point in sending my mother to rehab. Her heart and lungs were failing; there was virtually nothing left to rehab.
We had chosen a very nice nursing home (they still use that term). My mom liked it, we liked it, and it was only a couple of miles from our house. Mom would have been much happier there in my opinion. The staff is very interactive with the patients, and we would have been able to visit much more frequently. However, due to the amazing amount of paperwork involved, it is much easier for the hospital/rehab to get a transfer than for a family to request a bed. (This is the case in Michigan; I do not know about other states.)
However, the rehab my mother was at was not particularly cooperative. The home had a bed on December 27, but the rehab didn’t release her until January 10th, the last day her insurance would cover them. At that point they told me that our chosen place might no longer have an opening but that she was welcome to stay where she was as a cash patient.
My mother has been sick for a long time with congestive heart failure and chronic obstructive pulmonary disease. When my dad died in 2012, both the doctors and family were surprised she had outlived him. The next year and a half was a slow, steady decline both physically and mentally. My dad had been her caregiver to a point she had not realized at the time. He was always there when she needed him. She missed him horribly and there was no way to fix the problem.
Her memory had been bad for quite a while. But, as you may know, dementia has a tendency to slither in and gradually increase. She knew the four of us at the end, but confused the names. Phone conversations were a challenge. None of us lead very exciting lives, and calling every day meant a struggle for things to say. She wouldn’t want to hang up because she was lonely, but dead silence is a little creepy after a couple of minutes. I guess there was some advantage in her not remembering most of what we talked about, since we could repeat the same things several times.
Her hearing had been decreasing for quite a while, although she only admitted it recently. Even toward the end, I wondered how much of that was hearing and how much was mental. I’d have to shout to get her attention, but if we had a conversation in the back seat of a moving car, she would participate from the front seat. I think she may have been having trouble connecting words with their meanings. Regardless, in the end, it was a lot like talking to my teenagers.
She couldn’t read by the end because her eyes got too bad. She always had the TV on, generally to news, but didn’t seem to be aware of what was being said. If I brought up a major news story, she generally didn’t know what I was talking about. So she basically sat and thought about how sick and lonely she was.
It was a lousy way to live and a lousy way to die. At least she knew I was there at the end. (At least I think she did; her breathing calmed significantly when she heard my voice.)
She was jealous of the way my dad died. He drove to his last doctor’s appointment (and drove well) and was mentally sharp to the end. We saw him on Sunday in the hospital, he went into ICU on Tuesday and was basically unconscious until he died Thursday night/Friday morning. The more she suffered, the more I understood the jealousy.