Friday, September 18, 2015

The situation again

For family members and a few friends, some of this post is a repeat of emails sent out yesterday. This post is an update on the family situation.

Back in August my Dad was in the hospital and not doing well. Two doctors recommended hospice. They could do no more. In the last week of August Dad was transferred back to the nursing home with trips to a dialysis facility three days a week. I visited Dad with a hospice worker on a day he was lucid. The worker explained hospice. Because of Dad's underlying myeloma choosing hospice meant stopping dialysis. Death would be fairly pain free and would happen in two weeks. Dad said no, it was "too quick."

Dad stabilized. Though he was too weak to get out of bed he remained lucid for the next three weeks, which set a record for the summer. Though there were days he was sleepy (usually just before or just after dialysis), there wasn't a time when he was just out of it. That stability allowed Dad's brother and my brother to come for another visit with their families. It also allowed me to resolve some issues with Dad's estate.

This past Monday I visited Dad, taking Mom. While there I went down to the nurse's station to talk to his nurse. She agreed Dad was stable. She said he wasn't ever going to walk out. He wasn't getting better and not getting worse. This could go on for quite a while. She said she could see he had a reason to live that was keeping him going, though she didn't know what that reason was.

On Wednesday I went with a few family members, including Mom, to the wedding of my sister and her partner. They have been together for 15 years, finally able to make it official after the Supremes ruled on marriage equality this summer. Setting a date was tricky because they didn't want to celebrate while the family might be grieving. When I told them Dad was stable they did their planning quickly.

The party was held in the banquet room of a restaurant. Along with the happy couple and officiant were 10 guests. They conducted the ceremony as several of us took photos. After the kiss and a round of congratulations we had dinner.

We got back to Dad's house in plenty of time for me to take Mom to see Dad. I took the camera and showed him the two dozen photos I took. He was pleased he saw the photos and pleased the wedding had finally happened. After that Mom expressed her love until Dad got sleepy. On the way to the car I had to remind her we had visited her husband, not her father. I stayed overnight in Dad's house.

On Thursday I was in the garage when my other sister opened the door and handed me the phone. It was the nursing home. Dad had died.

As my sister scrambled to have a pastor come to tell Mom and then call all our siblings, I went to the nursing home. I spent a few moments in the room with Dad. At the nurse's station we talked about what comes next. I heard the nurse's story. She had done a routine check on him around 10:00 that morning and apparently saw nothing amiss. She checked again at 10:45 and he was gone.

From there I went to the funeral home and arranged for cremation as he had requested. The memorial service will be held at a time when my brother, who is living overseas, is able to come.

Because Dad had been so stable on Monday his death on Thursday was a surprise.

I've spent today working out details with Dad's siblings and mine, then getting the obituary ready (I had written it a month ago), and also calling companies holding Dad's investments to find out what procedures to follow.

Now for a rant.

I'm well aware that Thursday's outcome was coming, ever since Dad was diagnosed back in April, and there wasn't much that would have changed it. However, there are four components that could have made the intervening months more comfortable. I am naming names in case the various organizations or people like to search for themselves. I will not go for lawsuit because I doubt I could make a sufficient case and because I don't want the emotional hassle of it all. Even so, I am annoyed.

I am annoyed with Dad's primary care physician, Dr. Schriner. Starting at the beginning of the year Dad became quite sleepy, spending many days in his chair. Dad went to see Dr. Schriner perhaps three times over the winter. But Dr. Schriner missed the cancer. The sleepiness was thought to be a result of sleep apnea. Dad was given the sleep mask, but Dad wasn't given a thorough sleep test to see if apnea was really the issue. Dad's bone pain was misinterpreted as arthritis. But arthritis of the ribs?

Once a proper diagnosis was made in the hospital Dad no longer trusted Dr. Schriner. Yet Dad was frequently asked who his primary physician was, and he listed the doctor he no longer trusted. I saw from the recent packet of Medicare statements (107 pages!) that Dr. Schriner continued to authorize other doctors to examine my father. That puzzles me.

I am annoyed with oncologists Dr. Singh and Dr. Grewal. Once I had Dad's diagnosis I did a little online research which said at Dad's age it could be a tossup whether the cancer or the chemo killed first. These doctors (or at least one of them) suggested that without chemo Dad would likely have six months of miserable quality of life and with chemo he would likely have two years of pretty good quality of life. I wasn't at the meeting, though heard about it from those who were. I also saw the effects of the chemo.

Dad was to have 4-6 rounds of chemo, each round having four doses. Two days after the first round Dad was back in the hospital. He was released in a week and went for the second round. Two days after that one Dad was back in the hospital, this time with pneumonia. This stay lasted 8 weeks.

From what I understand, a side effect of the chemo is nerve damage, in particular in Dad's hands and fingers and his swallow reflex. Dad could no longer hold a book and turn pages, nor could he operate the buttons on a phone, isolating him from relatives. It was food getting into his lungs that caused the pneumonia. That required Dad to be given a feeding tube. He wasn't too upset because nerve damage to his tongue meant nothing tasted right.

My complaint with Drs Sing and Grewal is that they gave a too rosy view of chemo and did not discuss possible side effects, preventing Dad from accurately weighing the cost of chemo along with the benefits. This chemo was much more harmful than helpful.

I am annoyed with a particular policy with McLaren Hospital of Flint. There appear to be two competing health systems in town, the McLaren system being one of them. In addition to the hospital there are lots of clinics for primary care and specialty physicians. Mom's primary care doctor is a part of this system and I assume Dad's was too. That explains why, when I took Dad to the emergency room last April he directed me to McLaren Hospital.

McLaren Hospital has a policy for its nurses that I believe was detrimental to my father's care. Every two or three days the nurses rotate to different patients. That meant each time I visited I talked to a different nurse. None of the nurses had a long-term view of Dad's condition. Late in August during a time when Dad was mentally out of it I met a nurse, who said, "Hi, My name is ___. Is your father usually like this?" My thought was, why don't you know? This policy gave the impression that nobody was in charge of Dad's care. Which brings me to...

I am annoyed with Dr. Trager, who was listed as the primary care physician for Dad while in the hospital. I was told Dr. Trager did his rounds at the crack of dawn. I said I wanted to talk with him. I was told he insisted he do that talking while he had Dad's chart in front of him, meaning I should be ready for a phone call at 6:00 am. So I got up the next morning and was ready. The call came at 6:40 and we talked. I asked about prognosis and was told something such as "limited yet optimistic." I went back to bed. When I awoke I decided the phrase was so vague it wasn't worth repeating the experience. My annoyance has two parts – first that he demanded I comply with his schedule and second that he was so vague.

These annoyances were enough that I suggested to my sister, the one who is primary caregiver for Mom, that she take Mom to the competing hospital if it ever becomes necessary. But that may not work. Mom's doctor (whom I've met and I think is pretty good) is part of the McLaren system. Mom's doctor has ready access to the report of any specialist Mom has seen, which is quite nice.

Enough of the rant.

Seven years ago Dad, Mom, and I took a cruise to Alaska. I knew we would be together for 10 days – 30 meals and needed something to talk about. So I took a notebook and asked them about their lives. I wrote up the stories as a family history and shared it with others in the family. That essentially made me the family historian.

Dad was born in 1928 in a small town in northern Ohio, 15 miles south of Sandusky. He grew up on the family's small dairy farm, which I think has been in the family since 1845. Dad was the second of four children. The oldest died at the age of 10 from a ruptured appendix.

The Depression raged through much of my Dad's childhood. Because of the farm they always had food, though many times there was no money. Several times his mother put the last of their cash in the offering plate on Sunday morning with the expectation that someone would come to buy milk on Monday. The farm didn't get electricity until 1937 and it was probably the 1950s before they got indoor plumbing.

Dad graduated from a small country high school in 1946. There were 10 in his graduating class. Until a few years ago they still held reunions and the nine living members would meet. Dad spent a few months at Deep Springs College in California, but that didn't work out. He returned to the farm and started at Heidelberg College in 1947, chosen because it is about 25 miles from the farm. It is there he met Mom, who was a fellow freshman. After two years Dad transferred to Ohio State University and their agriculture program. He and Mom continued seeing each other on weekends.

In the first weekend in June of 1951 Mom graduated from Heidelberg. In the second weekend Dad graduated from OSU. In the third weekend they were married in St. Louis, Missouri with Mom's father officiating.

Dad went on to the University of Illinois to earn a Master's in Dairy Science. While there my twin brothers were born. On graduation in 1954 Dad got a job at a bull farm in Missouri, where my third brother was born. Dad's boss at the farm was one who assumed he knew it all and was therefore right. After 18 months, Dad had enough and quit. Mom, with 3 small boys and a fourth on the way, was not pleased.

Dad brought his family back to the farm, where I was born. Mom took over the housework, quite a change for a city girl. It didn't take long to realize the farm couldn't really support so many people and there weren't alternatives in such a small town. So when IBM advertised they were looking for college gradates, no matter the major, Dad applied. He worked for the major computer company at the dawn of the computer age. We lived for a while in Cleveland, then Dad was transferred to Flint to work on the GM accounts. They've lived in the same house for 51 years. One sister was born while we still lived on the farm, the other born when we lived in Cleveland.

Dad worked for IBM just a couple weeks shy of 30 years. He had a few short-term jobs, then worked for Central Michigan University for 10 years. One more short job after that and he retired.

Though he never retired from the church. He taught an adult Sunday school class for more than 30 years, much of that a systematic look at the entire bible. He served on practically every church committee (I think one at a time), then added committees at the district level. He went to the church's state conference at least 25 years in a row, serving in a variety of jobs, such as head usher. He even attended four of the denomination's quadrennial international conferences, usually as an usher.

It was only last winter that Dad finally gave up his job of church treasurer and treasurer of a non-profit in Flint. When I took him to the hospital last Easter, one question was, "Who will teach my class next week?"

Dad was 87 when he died.

I could go on, but the hour is late. My writing for this blog in the near future will depend on my mood and family responsibilities.

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