This past Wednesday, July 27th, my mother passed away at the age of 96 years, seven and a half weeks.
For just shy of five years I have been her full-time, live-in caregiver. I thought I would begin what I hope will be a series of diaries on my experiences and observations gleaned over these past years.
I offer these as both a way of perhaps assisting others in this community, both through my entries and the contributions of others who have been, are currently in or who will find themselves in a similar situation, as well as a vehicle to discuss the social/political aspects of our healthcare "system" in general, and our senior care in particular.
When my father passed away in May of 2004, I considered writing a diary about him, especially since my liberalism came primarily from him, just as his had come from his own father, an ardent fan of Eugene V. Debs and Robert "Fighting Bob" La Follette.
However, as I was still fairly new to this community I wasn't sure at the time if such a personal diary would be appropriate. So I hope you will indulge me as I devote the first diary in this series primarily to some background.
My mother was born and raised in Chicago, to parents who were both born of German immigrants. My father was born in Indianapolis. His father was the child of Irish immigrants, while his mother had emigrated from Norway at the age of fifteen, first to work as a cook at a Minnesota lumber camp, then eventually to move to Chicago to work as a nanny for the Potter Palmer family. When my dad was only a few years old his parents moved from Indianapolis to Chicago.
My mother developed polio at one year of age. She was left with a pronounced limp, but she roller skated, played hopscotch, and was, she always said, really really good at jumping both double Dutch and double Irish. I confess to only a passing familiarity with double Dutch, and I have no idea what double Irish is, but it sounds difficult.
She spoke German before she spoke English, and caused people on the streetcars to stare daggers at her parents as she "jabbered away." This would have been when the country was enmeshed in the first world war, a situation obviously lost on a two year old.
On my mother's fifteenth birthday, her mother died of a cerebral hemorrhage. It fell to this teenager to cook and care for her father and two younger brothers.
During the Great Depression, my father's dad was laid off, never to find work again. My father found work as a draftsman and left school after 10th grade to support his family. He worked the drawing board his entire working life, eventually becoming chief engineer for a well known manufacturer's small appliance division.
My parents met on a blind date and married in 1939. My two sisters were both born in Chicago. During the war my father designed high speed aerial reconnaissance equipment, working for a company in an unmarked building with armed guards just inside its doors. It kept him from being drafted.
My father, who had grown up across from a multi-story factory, so that as he said, "The sun set at 3 in the afternoon," had a dream of building a home on a good sized piece of property.
In the late 1940s he began construction of a house he designed, on an acre of farmland about twenty miles west of the city, in a new community that was committed to being open to all races. When I tell people that my father built our family's house I always hasten to add that I don't mean he had the house built, or even that he acted as general contractor. He built the house, even digging the foundation by hand. This was while working a full time job and raising a family in the city, and driving out on weekends and during vacation time to work on the house. To steal a joke from the comedian Larry Miller, comparing himself to his own father, "If I go to the bank and the dry cleaners in the same afternoon, I have to take a nap."
Oh, about that open to all races business? It didn't go over too well with the other communities in the area. One family actually had a cross burned on their lawn, and many of the local merchants were less than friendly, even if it cost them business.
Quite a few years later, when my folks were in their forties, I came along. I wish I had a dollar for every person who's smirkingly asked me "Were you an accident?" I learned to reply "I like to think of myself as a fortuitous surprise."
My mother was the most resilient person I've ever known. When I was in sixth grade she suffered a mild heart attack and was diagnosed with hardening of the arteries. In my senior year of high school she had a radical mastectomy of her left breast. Approximately seventeen years later she developed cancer in her right breast, and underwent a lumpectomy.
When she was 70 her right ankle, always weak from the polio, began to turn on her with increasing frequency. She was fitted with a brace attached to her shoe, and for the first time in my life I saw my mother walk with an even gait and not a limp. She was so delighted she went to the local mall and walked around so much that she wound up in the hospital with chest pain.
A young cardiologist who resembled a boyish Neil Sedaka ordered an angiogram, and determined that she had too many blockages for a balloon angioplasty (this was before stents.) He said "I think we can treat this pharmaceutically," and over a quarter of a century later, still my Mom's cardiologist, I would always tell this still boyish looking doctor, one of the finest I've ever met, that he'd obviously made the right call.
My father developed idiopathic peripheral neuropathy in his legs when he was 70. He had to go to the Mayo Clinic to get a proper diagnosis. Fortunately neuropathy is much more recognized today. He was not diabetic, and the cause was never determined. Over the next twenty years he fought back against the pain, continuing to mow the yard, to swim, and to try to keep his strength up. Countless treatments and nostrums proved ineffective, and over time he sold his canoe, his camper, and his pickup truck, "Giving up all my toys," as he put it.
Just shy of his 91st birthday my father suffered a heart attack. The attack itself was mild, and the damage to his heart relatively minimal. But it was discovered that he had aortic stenosis. His heart valve had basically calcified and turned to bone, and his heart was unable to deliver enough properly oxygenated blood to his body.
After a week in intensive care, he was moved to a regular room. I was awakened one morning by a call from an asshole of a doctor I'd never met who informed me that my father had been given a swallowing study and had "failed miserably." While his demeanor was that of an asshole, I would discover in the years to come that it was to his credit that he at least called me. Most doctors can't be bothered, and if you don't happen to be in the hospital room when they drop in to practice what I have come to call "drive-by medicine," then you're left in the dark.
It was strongly implied that we had to have a feeding tube put in, or else allow him to starve to death. I now know, of course, that those were not the actual options. The options were to put in a feeding tube, or risk aspiration pneumonia from food and liquid entering his lungs. We had the feeding tube put in.
After a week in the regular hospital room my dad was transferred to a nursing home, ostensibly to receive physical therapy. The day after he was moved to the nursing home he turned 91. I can remember sitting in his room with him, watching the PBS News Hour as the story of Abu Ghraib broke, and his disgust at what had become of his country.
One morning, about four weeks into my father's stay in the nursing home, I went to my folks' house in the morning to find my mother, who had been battling a cold, still in bed. "I think you better have me taken to the hospital," she said.
In the emergency room a doctor approached my oldest sister and me and said that our mother's potassium level was very, very low. "And what could cause that?" I asked. "Cancer," the doctor replied. He offered no other possibilities.
As it turned out, a low potassium level can be caused by many other things, including pneumonia, which is what she had.
For two weeks I would go to the hospital in the morning, then to the nursing home, then back to the hospital, again back to the nursing home, and finally wind up the day back at the hospital. Simultaneously, my oldest sister, who still lived in the area (the other sister living 600 miles away) would do the reverse, partly so that our parents would have our company and encouragement, but mostly to make sure that they each had an advocate to interact with their respective medical practitioners.
It was during this hectic and trying time that I purchased my first cell phone. I used it so that my mother in the hospital and my father in the nursing home could speak to each other on their 65th anniversary.
After two weeks my mom was released to come home, now using a walker in addition to the brace. At 5 feet 4 and 1/2 inches tall, she'd dropped to around 96 lbs. Two days later I returned from visiting my father in the nursing home to tell her that I thought she needed to have me take her to see him the next day, as I felt his time was growing short. But when the next day came she said she didn't feel up to going.
The following morning I received a phone call from the nursing home that my father had passed away. The cause of death was aspiration pneumonia, from his natural saliva entering his lungs. Feeding tubes don't prevent that. I called the local college radio station, which plays primarily jazz, and asked them to play a Dixieland, or trad jazz piece for my father, who first turned me on to the genre. The announcer did so, giving a wonderful and moving tribute. Then I called my sisters, and arose to drive to our mother's house and tell her. Two days later my Mom turned 89.
I'm going to stop this first entry at this point, and to those of you who have read this far, thank-you. I want to end this diary with an embedded clip of a movie I made a few years before my Dad's death. It chronicles some of the process of the building of the family home, and although it only features my Mom at the beginning and the end, they are nice images of her.