Hello, this is Chris Young. Welcome to Episode 115 of Contemplating Life.
In this episode, I continue my series by recounting my efforts to maintain my Medicare benefits and live in a safe, comfortable environment. The biggest challenge to that goal was the death of my father, Kenneth Young.
I promised that I would get to his death in this episode. However, it has taken me over 8,500 words to get there. I tried to find a place to split this into two episodes. However, the only good place to split it would have created a very short episode followed by a very long one. I’m just going to put it all in one big episode. Sorry, it’s going to take so long. You might want to take a look at the YouTube version of this episode, because it has lots of photos, videos, and illustrations.
You know me. I can’t tell any story without starting at the beginning. I’m going to get distracted on some side tangents. This is going to take a while.
To put everything in context, let me tell you about my Dad and my entire family. We will start at the beginning.
My dad was born on April 18, 1934, to Christian and Anna Young. He had a fraternal twin brother, Keith, and no other siblings. At an early age, Keith contracted some sort of infection and lost much of his hearing. Although Keith wasn’t totally deaf, he went to the Indiana School for the Deaf here in Indianapolis. The Deaf School was a residential institution. So, even though the family lived in Indianapolis, Keith would live in the dormitory to be immersed in sign language and deaf culture.
Dad went to a regular public school.
Still, the brothers were together on weekends, holidays, and throughout the summer. For some time, they all lived with their paternal grandparents. I recall Dad telling a story that he and Keith got into some sort of trouble in the neighborhood. They ran in the house, opened up a checkerboard, and began to play. When the neighbor came looking for the troublemakers, their grandmother said, “It couldn’t have been these boys. They’ve been sitting here all day playing checkers.” After the neighbor left, she gave them a very stern talking to.
I have a vague memory of my paternal great-grandfather. We have some old 8mm home movies of my great-grandparents. We visited my great-grandparents’ house when I was probably five years old. It was a very old house. The floor joists sagged in the middle. I’m guessing that people walking on it probably didn’t notice. But when we rolled my wheelchair across it, I felt like I was going up and down small hills. I even speculated that the carpet was the only thing holding everything together. That was probably just my paranoia about being on uneven ground. I’ve lived my whole life in a home built on a concrete slab.
That’s my only recollection of my great-grandfather.
Great Grandma Young lived until I was about eight years old. She taught me how to play checkers. Fortunately, she never had to cover for me with the checker game if I got in trouble.
My grandfather, Christian, who went by Chris, was an alcoholic. He would go on binges, and then when he tried to sober up, he would get the DTs. Dad said it was rough growing up with an alcoholic father. On the other hand, Grandpa managed to stay employed as a union sheet metal worker. The company he worked for was quite understanding. When he needed time off to get sober, his job was waiting for him when he was ready to return.
Dad attended Arsenal Technical High School, so-called because the building had been converted from a Civil War-era army arsenal into a high school. Dad said his favorite shop class was metal shop. He knew right away he wanted to follow in his father’s trade as a sheet metal worker. Dad played as a defensive lineman in high school football. His nickname in those days was “heavy” because he was.
Another bit of trivia from his high school days, one of his classmates was Pete Lupus, who became an actor and appeared regularly in the TV series “Mission Impossible.”
While in high school, Dad took a job as a stock boy and soda jerk at Baker’s Drug Store on the corner of E. 30th St. and Talbot Street. That was right around the corner from where my mother lived at 2918 Washington Blvd. That is how he met my mother, Frances Osterman, when she was about 16, and he was about 17. My grandmother lived in the house until I was a teenager. When visiting, sometimes we would go down the street, and around the corner and visit the drugstore where my parents met. The building is no longer there.
The drugstore was about 3.5 miles from Dad’s home. I don’t recall him telling how he got there before he got his own car. Maybe he had one by that time. I recall Dad saying that he wasn’t paid very much for the job. He would spend the money on lunch or milkshakes and Cokes at the drugstore. By the time he got back home, he had barely made any profit.
The Osterman household was occupied by my mom, my aunt Jody, who was four years younger, my grandmother Helen, grandfather Henry, and Helen’s unmarried sisters Margaret and Leona. The three sisters lived together when they were young women. When my grandparents were married, Margaret and Leona continued to live with them. After my grandfather passed, the three sisters stayed together until the day they died.
Mom and Aunt Jody called Margaret and Leona “Naggy” and “Nonny.” So, subsequently, that’s what my sisters and I called them. Leona was born in 1898, Grandma in 1900, and Margaret in 1902. That made it easy to remember their ages. Whatever year it was, that’s old Grandma was. My great aunts were plus or minus two years.
Margaret only attended school through eighth grade. Leona only finished fourth grade. She had some sort of childhood fever. I don’t recall if it was scarlet fever or rheumatic fever. At one point, they said she had a condition known as Saint Vitus’ Dance, a generic term for Sydenham’s chorea. They both worked as seamstresses in a garment factory.
Grandma Osterman finished high school and then took a business class that was mostly secretarial or bookkeeping training. She worked in an office job in City Hall for many years.
During my lifetime, she worked at the Army Finance Center at Fort Benjamin Harrison on the northeast side of Indianapolis. That building is the second-largest government building, surpassed only by the Pentagon. I attended her retirement party there. It’s quite a place. In the pre-computer era, the entire payroll, accounts payable, and accounts receivable for the US Army went through that facility. She once handled a travel voucher for Elvis Presley when he was in the Army. I told her she should have kept it. It would be worth a lot of money to Elvis fans.
Grandpa was an auto mechanic. Grandma told me that during the Great Depression, some of his customers would pay for their auto repairs with fresh produce.
Like Grandpa Young, Grandpa Osterman was an alcoholic as well. Mom described him as “happy drunk.” My parents told me that when Grandpa Young would take a drink of whiskey, he would make a sour face as it went down. Grandpa Osterman would smile broadly and smack his lips, saying, “Ohh, that’s good.” It was a struggle for both of my parents to have alcoholic fathers, but I don’t believe either of them was an angry or abusive person when they were drunk. They probably were a handful when they wanted a drink and couldn’t get one for some reason, but for the most part, my parents had happy childhoods.
Grandpa Osterman died when I was only one and a half years old, and I have no memory of him. I’ve seen photographs and 8 mm home movies and heard lots of stories about him.
After graduating from high school, Keith went on to Gallaudet University, which is a deaf institution. He later went on to work at the Indianapolis Star/News as a linotype operator. Linotype machines were extremely noisy. Newspapers and other printers often hired people to operate them.
After high school, Dad entered a sheet-metal apprenticeship program. For many years, he worked in the same sheet metal shop as Grandpa.
After graduating from high school, Mom got a job at Indiana Bell Telephone working as a teller. In those days, many people would walk into the phone company building downtown and pay their phone bills in cash. My great-aunt Della, Grandpa Osterman’s sister, was the supervisor of that department.
A couple of quick stories about Aunt Dell. When I was attending Roberts School, we used to sell cookies as a fundraiser for the PTA. Aunt Dell sold hundreds of boxes for me at her job. People would come in, and she would say, “Do you want to buy some cookies? It’s a fundraiser for my great-nephew, who is in a wheelchair.”
Somehow, I only got third place for selling 300 boxes of cookies. Someone else in the school had their dad selling at work. They sold just over 500. I don’t recall how many second-place sold.
One year for my birthday, as a joke, I said all I wanted was lightning bugs. Aunt Dall recruited the gals who worked for her, and they collected a Mason jar almost completely filled with lightning bugs. She was quite a woman.
Anyway, back to my parents’ story.
On October 16, 1954, my parents were married in the Blessed Sacrament Chapel of Saints Peter and Paul Cathedral on North Meridian Street in Indianapolis. A few days before the ceremony, Grandma Osterman was in an auto accident and broke her leg. In all the wedding photos, she is sitting in a wheelchair with a cast on her leg.
After they were married, my parents rented half of a duplex on 34th St. near the canal. I was born eight and a half months later. They said I was born two weeks early. I don’t have any reason to doubt that, especially because Mom had five more babies after that, who were born premature at six months. Sadly, none of them lived more than 48 hours. She also had a couple of miscarriages.
When I was eight years old, my family adopted my sister Carol, who was three months old at the time. Eight years after that, when I was 16, and Carol was 8, a big surprise. Mom was expecting again. This time, she carried the baby for 7 months, and my sister Karen survived. Karen is now a grown woman. She married her high school sweetheart, Terry Miller. Their son Cole is studying psychology at Indiana University.
Get back to the story of my dad. He completed his apprenticeship and became a card-carrying union sheet-metal worker, like his father before him. He retired at 63.
I greatly benefited from being the son of a union tradesman. We were never rich, but we never wanted for much. I always had lots of great toys. We enjoyed summers at the lake. We had good health insurance that paid for two or three of my wheelchairs.
Dad enjoyed going to union meetings because it was his night out with the boys. In appreciation of all the union had done for him, he taught night school two nights a week to sheet metal apprentices for several years. It was his way of paying forward the benefits he had accrued from working in the trade. Also, when the union opened a credit union, he volunteered to serve on the credit committee, which would review loan applications.
When I was very young, he took out a small $1,000 life insurance policy on me. It wasn’t accruing any value. So, he cashed it in and put it in the credit union, where it gained modest interest. A couple of times, I took out a small loan from the credit union to buy a new computer or some upgraded software. Under a certain amount, it didn’t have to go through the credit committee, so there was no conflict of interest.
Believe it or not, I learned how to lay out sheet-metal fittings such as elbows, square-to-round transitions, tapers, intersections, etc. When I was a teenager, I was building a model rocket. I needed to figure out how to have side tubes merge into the main tube at an angle. It was just like laying out intersecting circular ductwork. He showed me how to do it on paper. Of course, at work, he had to do it on a much larger scale.
Okay, timeout. I told you, you should watch the YouTube version of this episode. Here is the perfect reason why. After recording this episode, I went online to find illustrations on how to do the sheet-metal layouts Dad taught me. I found a couple of good samples. One showed how to intersect tubes of different diameters at an angle. This was the method I used to design my model rocket. Another online illustration shows a square-to-round transition.
It still didn’t convey the concepts I wanted to show in the YouTube version of this episode. I spent an afternoon using Fusion 360 CAD software to create an illustration of the kinds of fittings I have been talking about. I also created a rough rendering of the model rocket.
After I was browsing around, looking for other images to include in this episode, I stumbled across a drawing in my father’s hand. It was sketched on a piece of green bar computer paper. I had forgotten I had scanned it a couple of years ago.
It’s the actual piece of paper where Dad taught me how to do sheet-metal layouts.
Shortly before Dad retired, the sheet-metal shop where he worked purchased a CNC metal punch. It had some built-in functions, as well as a way to manually enter coordinates. I told Dad that I could create a spreadsheet that would output a series of coordinates he could manually enter into the machine, and it would cut any sheet-metal fitting he wanted.
Although I had learned the traditional methods of layout, which could be done with nothing but a straightedge and a compass, I easily deduced the geometry and trigonometry of the situation. I knew I could create trigonometric formulas to compute all the coordinates in a spreadsheet.
So, I created spreadsheets to compute the segments of an elbow, a square-to-round, and a tap. I asked him, “What’s the most complicated layout you can do?”
He said, “A tap into a taper.” He sketched one to show me what he meant. I built the spreadsheet that with computers the coordinates for any size and any angle. His shop paid me for the work. In a way, I followed in my grandfathers and father’s footsteps as a sheet metal worker. Not actually beating on the metal and cutting it myself, but programming a CNC to do it.
Mom never returned to her job at the phone company after I was born. She occasionally worked part-time selling Avon and Tupperware, but never held another full-time job. She kept herself well-busy raising me and my sisters, as well as doing a massive amount of volunteer work as a disability advocate and volunteering at Saint Gabriel’s church.
In previous episodes, I’ve talked about my mother’s volunteer activities in the work that we did together.
Mom had a variety of health challenges late in life. She had to have part of her pancreas removed sometime in the early 2000’s. The surgeon accidentally nicked her bowel, and she became septic with an infection. She spent 18 days in a drug-induced coma and over a month in rehab to recover.
Mom survived two minor heart attacks.
She was a lifelong smoker. In 2008, she developed lung cancer. They removed part of one lung, which bought her some time. She was able to have one more summer enjoying our cabin on Cordry Lake. She died on February 8, 2009.
After my dad retired as a sheet metal worker, he continued to work part-time for a guy named Gus Fleming. Gus and his son, Ronnie, were aircraft engineers. They had invented a machine to test jet engine turbine blades. The sheet metal shop where Dad worked would build the cabinets for the device. Dad went to work for Fleming and Associates part-time, installing equipment in the cabinets and wiring them up. Technically, he wasn’t allowed to do sheet-metal work because it was not a union shop. Dad just wanted something to do part-time to keep him occupied during his retirement.
I did a tiny amount of computer consulting for Fleming and Associates. I wrote a driver program that allowed them to connect some of their hardware to a RadioShack personal computer. Carol worked in their office for a while as well.
When mom’s health deteriorated, she could no longer get me up and dressed in the morning. Dad would go to work for Gus early in the morning, come home late in the morning to get me up, and occasionally go back for a couple of hours in the afternoon. When Mom got really bad, he had to quit work completely to take care of both of us.
It’s finally time to talk about my dad’s death on February 9, 2019, exactly 10 years plus one day after my mother passed.
I’ve tried to piece together a timeline of events. For many years, off and on, I’ve kept a file on my computer called “calendar.doc.” It’s sort of a one-sentence diary telling significant events that happened almost every day. The files I had for 2017-18 were pretty sparsely populated. I didn’t keep up the file closely.
I discovered that you can set a filter on your Facebook feed to look at posts you made in a particular year and month. I’ve spent the past couple of days scrolling through these old posts and taking notes.
To give this some context, in December 2016, I spent the entire month in the hospital recovering from my trach surgery. For the next several months, I experienced lots of health issues. Many days, I couldn’t stay out of bed for very long because of back and hip problems. My lungs gave me lots of issues with many days of heavy trach suctioning and breathing treatments. Someday, I will do an entire series on those days.
Sometime in July 2017 or slightly before, Dad had a colonoscopy. They didn’t like the looks of something, so on Monday, July 10, 2017, he had surgery to remove a polyp from his colon. The pathology report showed cancer. There was also cancer in a lymph node near his intestine. Dr. Clem Davis, the same surgeon who resected my bowel when it ruptured in 2006 and who removed part of Mom’s lung, also operated on my dad. According to the Facebook post, “He thinks he got it all.” Another post said, “Dad is taking it very matter-of-fact.” That was his nature. He rarely got upset about anything.
I don’t believe he got any other treatment, such as chemo or radiation. At age 83, that would’ve been rough on him.
On Friday, July 14, he returned home. I don’t have any idea who stayed with me. I presume Carol took a few days off work. She probably spent the night, and perhaps on some of the days, other friends and family filled in. Neither my notes nor my Facebook posts give any details. There will be many such instances where I have no recollection and no info about who stayed with me during various crises. It was probably a combination of my friend Judy Chapman, perhaps my cousin Kathy, and my friends Stu and Pat Byram, or George and Barbara Brake, who are like aunts and uncles to me.
Dad apparently recovered quite well. My notes say that a week later, on the 21st, we went to see “Dunkirk” in 70 mm IMAX. It was awesome.
I find no other health-related issues for my dad until February 21, 2018. This was a six-month checkup with his oncologist, who reported that his scan showed no signs of cancer. He would not need to see the oncologist for another six months.
There was another problem, however. Dad had an ongoing struggle with afib. They wanted to put him on a new medication, requiring him to be hospitalized for three or four days under observation. He went to St. Vincent’s on Thursday, the 22nd. My Facebook report said that Carol would be staying with me throughout the weekend, and hopefully, Dad would be back home by Monday. On Monday, the 26th, they shocked his heart back into rhythm, and he came home the next day.
An important part of this story is a health crisis that my sister Carol survived. On Friday, April 20, 2018, Carol was admitted to Hendrix County Hospital with a huge cyst on her neck. The next day, she was moved to Methodist Hospital. She returned home on the 24th. This would eventually reveal that she had cancer in her throat/neck.
The next significant health issue occurred on July 24, 2018, when Dad had an outpatient procedure for a needle biopsy. My notes don’t say, but they must’ve found something in his follow-up scans one year after his original diagnosis. On August 1, the report came back that he was in stage 4. The cancer had spread.
Again, at his age, any significant chemo or radiation would have been worse than the cancer. They did give him some sort of chemo pill to take that was the mildest thing they could give him.
On August 6, 2018, Carol had surgery to remove a dime-sized tumor on her tonsil. She had her tonsils removed at age 5, but they left a little stub. A few days later, the oncology report revealed it was cancerous. This was caused by latent HPV virus in her system. It is quite common and highly treatable. However, she would need more surgery soon.
I need to mention that Carol’s marriage to her husband, Joe, was not all that it should have been. I recall on one occasion, before all of these health issues arose, she got in an argument with him. She showed up at my house early in the evening and said she was moving in. She had had it with Joe. She said, “Dad, I’m moving in, and I’ll help you take care of Chris.”
The next day, her grandkids had plans to do something with Joe. Even though they weren’t biologically related to him, he was the only grandfather in their life. Not wanting to disappoint them, she went back home. She stayed with him.
Normally, I don’t say negative things about people in this podcast. If I do, I change their name. In the case of my ex-brother-in-law, I’m not saying anything here that I’ve not said in public to people, and I’m not saying anything here that I wouldn’t say directly to his face. I won’t be pulling any punches in my description of Joe,
Joe and I got along reasonably well until all of these health crises arose. I should also say that he was not abusive. He did have a drinking problem that made him somewhat unreliable. More on that later.
I don’t know the exact date, but at some point, Carol moved in to help take care of Dad and me. This was more about helping Dad and me than about her marriage. My home health aide would get me up in the morning. Dad was able to do whatever I needed throughout the day while Carol was at work. She would put me to bed and be on call if I needed anything throughout the night.
Dad also had a serious wound on his foot from when he got up in the middle of the night and fell. I think he hit his foot on the little three-wheel power scooter he had been using to get around the house. Dad was visited several times per week by a hospice nurse named Karen. (Not to be confused with my sister Karen.) Nurse Karen also served as a wound care nurse to heal his foot. It took a long time, but they finally got his foot back in shape. She was a wonderful woman in her late 50s, perhaps early 60s. I have to admit, I developed a bit of a crush on her.
On August 10, I met with my caseworker from CICOA, and they said I could get authorized for 40 hours per week of nursing. While my dad was my primary caregiver, I wasn’t eligible. However, now that Carol was my primary caregiver and had to work full-time, I qualified for the extra hours. Unfortunately, we weren’t able to get approved and find an agency that could staff me until November 4.
Sometime after that, Dad began reporting that his feet were sweating profusely. When he took his socks off at the end of the day, they were dripping wet. He wondered if the medication they had been giving him had a side effect that would make you sweat. None of us, including the hospice nurse, realized that it wasn’t sweat. He had so much fluid buildup in his legs that it was pouring out as edema. He was having serious congestive heart failure.
On Monday, August 20, Carol took Dad to the ER. My notes don’t say who stayed with me. It does mention that I was in bed using my iPad to get updates from Carol over Facebook Messenger. Sometime after midnight, the buttons that I use to operate my iPad quit working. That’s not such a big deal. However, those are also the buttons that are used for my emergency call buzzer.
Carol got back from the ER around 3 AM and came into my room to give me an update. I was able to get her to understand that I wanted to get off the ventilator so we could talk. She updated me on Dad, and I told her my buttons quit working.
When I’m in bed, I have three pushbuttons that I hold in my right hand. I can operate my iPad using switch control. I can also operate my TV, cable box, and move the mouse on my laptop by selecting different functions of a small LCD display mounted on top of my TV.
One button is for “move left”, another for “move right,” and another for “select.” There are four wires in the cable. One for each of those buttons and then a common ground wire. If one of the “move” buttons goes out, I can still do everything I need. The menus all wrap around. So, if I can’t move in one direction, I just keep moving a bunch in the other direction. If I lose the “select” button, I can’t operate the iPad or TV controls, but if I hold down any button for more than 30 seconds, it will activate the alarm.
Unfortunately, the broken wire was the common ground. That meant that none of the three buttons worked, and I could not use my emergency call system. I thought perhaps we could temporarily clip the wire back on using an alligator clip. I couldn’t remember where they were in my office, among a dozen boxes of electronic parts and gadgets. So, at 3:30 AM, Carol got out the soldering iron and fixed my buttons.
Four days later, I reported that Dad wasn’t coming home anytime soon. The problem was not his cancer. The mild chemo that they had given him aggravated his afib, which led to his heart failure and swollen feet.
On Sunday, August 26, Carol and I went to St. Vincent Hospital to visit Dad and meet with his care team, which included doctors, a case manager, nurses, etc. They said his heart was in bad shape. Dad insisted that they give him an estimate on how long he had to live. They don’t like to do that because it’s just a guess. When pressured, they estimated six weeks.
Carol was scheduled for her throat surgery the following day. We made it clear to them that we were not capable of giving him the care he needed at home. He would have to be transferred to a nursing home. A day or two later, he moved to Northwest Manor on 34th St., about a half-mile east of here.
When Carol had her surgery on Monday, August 27, they reported that they got the tumor with good margins and removed 37 lymph nodes. When she was released from the hospital, she went back to Danville with her husband Joe to recover. I had a combination of my cousin Kathy and my friend Judy Chapman staying with me 24/7 while Carol was in the hospital, and for several days after that. Carol did not return until September 5.
On August 31, the report came back that the lymph nodes were cancer-free. It had not spread. Spoiler alert… it never did return. She remains cancer-free.
On one of these occasions when I needed someone to stay with me, my sister Karen filled in. After I was in bed, her husband Terry, son Cole, and roommate Dawn also came. They set up a video game console in the living room, perhaps an Xbox, and played for several hours. I tried to get Karen to have them come back to my room and say hello, but Terry is very shy. he declined.
Somehow, over the years, he has become convinced that my parents and I hate him. The only problem I ever had with Terry is that he doesn’t come to family gatherings. So in some ways, it’s a self-fulfilling prophecy. If he showed up, we would have no problems. But he doesn’t show up, and that’s a problem.
Sometime shortly after Dad went to the nursing home, I spoke to him by phone, and he reported that the therapists were working him very hard. It sounded quite positive. On September 1, my friend Rich took me to visit Dad. He was in a tiny room that he had to share with another resident. He was able to get up in a wheelchair, and we visited with him in one of the common areas. He looked fantastic. Obviously, he was weak, but he was much better than I had seen him in the hospital. I had expected he would never return home, but after seeing him that day, I was hopeful he might be able to come back.
Much to my surprise and joy, Dad returned home on September 15.
My notes and Facebook posts don’t say much throughout the rest of September and much of October. I think Carol was on leave from work for most of that time. Both Facebook and my notes say that I didn’t get my full-time nursing until November 5, but I must’ve had some kind of support because on October 15, a Facebook post says that Carol had to come home from work because my G-tube fell out. I can’t imagine that I had friends and family watching me for any serious length of time throughout much of October. Perhaps we only had part-time help.
By the way, ever since I had my G-tube installed, the doctor insisted that if I needed it replaced, I had to go to the ER. It wasn’t so bad when it was just Dad and me. He could throw me in the van anytime and take me to get it replaced. It must’ve been quite an adventure this time, my Facebook post reports that when Carol tried to put me in the van, the battery was dead. It doesn’t say what we did. I presume we got a jumpstart.
My Facebook posts and calendar notes throughout this period are riddled with reports that one or another of my nurses or aides didn’t show up for a shift. I spent lots of days in bed.
On November 28, one of my favorite aids of all time, Riah, had a terrible tragedy. Her four-year-old boy, the youngest of her five children, lost his battle with respiratory disease. Her struggles were not over. Her next youngest son, David, age 10, also had severe respiratory issues. Over the next year or so, he also spent months at a time in Riley Children’s Hospital. She and all of her kids feared that David would suffer the same fate. As far as I know, he is okay.
There was a bright spot on Sunday, October 21. Carol was invited to attend a special event prior to an Indianapolis Colts game. It was part of their “Crucial Catch” cancer awareness program, celebrated throughout the NFL on that day. She was invited as a cancer survivor, and I was her plus one. We got to go out on the field in the pregame ceremonies, and Carol, along with about 50 other people, got to wave a giant cancer flag during the National Anthem. I’ve linked a video that I made about the event. Check it out. It was a wonderful day I’ll never forget.
Joe was pissed off that she took me and not him.
Shortly after that great event, Carol began receiving radiation treatments. They were very hard on her. The scar tissue from her surgery, as well as damage from the radiation, made it extremely difficult for her to eat. She began losing weight. Eventually, they gave her a G-tube for feeding, but there were complications with it, and it had to be removed.
It was weird for me living with two people fighting cancer. I was the healthiest person in the house despite all of my own health issues.
I had nurses coming five days per week while Carol was at work. I had a home health aide who would come in around 7 PM to put me to bed. I also had home aides who got me up in the morning and put me to bed at night on weekends.
Dad was doing remarkably well for a while. He could get in and out of his three-wheel scooter on his own. The hospice nurse was visiting regularly, and occasionally one of my nurses would give him a hand.
Joe would accompany Carol to her radiation treatments, supposedly to support her. While she was receiving her treatment, he would talk to her doctors and nurses, saying that she was neglecting her health by taking care of Dad and me.
The truth was, she had very little to do. She would change the bandages on Dad’s foot on the days his nurse wasn’t there. She would put me on the ventilator at night and get me off in the morning. She would do one G-tube feeding for me. Other than that, she wasn’t exerting herself.
Joe accused me of being selfish by tying her down. For some reason, he didn’t blame Dad, just me. I tried to explain to him that Carol was her own person and made her own decisions. I wasn’t holding a gun to her head. She told me to ignore him. Eventually, I blocked him on Facebook and text messages.
One memorable challenge we faced was on November 29, the balloon inside my trach failed. I have to inflate the balloon to get on the ventilator and to sleep comfortably. Unfortunately, it failed after I was already in bed. Carol and Dad had difficulty changing it while I was lying down. Normally, when I was sitting up in my wheelchair, we would tilt my head way back to change it. But we couldn’t do that. We ended up partially lifting me with the Hoyer lift to tilt my head back. To this day, we still reminisce about how tough that time was.
At one point, Carol had to quit work again because radiation was so hard on her. Everything came to a head on December 3, 2018. Carol left Dad and me and moved back to Danville with Joe. She was too weak to do anything for us and barely capable of doing anything for herself.
Joe wasn’t as helpful as he should’ve been. On one occasion, when she was having a very tough time, she sent him to the drugstore to pick up a prescription she needed. He didn’t return for several hours. He had stopped off at the social club to drink with his buddies while she was home suffering and waiting for her prescription.
I still had my nursing throughout the day. Once I was in bed, Dad could do my 9 PM G-tube feeding and put me on the ventilator. He would roll his scooter into my room, and he could stand up as long as he was holding onto something.
If my home health aide could not put me to bed around 7 PM, I would have the nurse put me to bed around 4:30 PM, just before she left. On one occasion, I thought my aide was going to come, but she canceled after the nurse had already left. Dad ended up putting me to bed, and it was a huge mistake. Trying to get his three-wheeled scooter, my wheelchair, and the Hoyer lift all in my bedroom at once was a real challenge.
When my other sister Karen found out about it, she said, “Don’t do that again. I will come put you to bed if it happens again. It might be late after I get home from work, but you don’t need to risk that.
Karen was working a full-time job as a manager of a clothing store. There were limits on what she could do to help. I know she felt bad about it. On one occasion, I recall she took me to a dental appointment. As we were sitting in the waiting room, she was talking about how bad she felt that she couldn’t do more.
A bit of back story, in the late 1980s, my Grandma Osterman was living with us. Mom was taking care of both of us. The stress was enormous. She tried to get my Aunt Jody to help out on weekends so that we could go to the Lake. Jody had a full-time job throughout the week. On one weekend, I stayed home with Jody and Grandma to give my parents a bigger break. Although Jody helped out as much as she could, she seemed to complain about it a lot.
My Uncle John also seemed to be a bit insensitive about the situation. On one occasion, after he and Jody returned from a vacation, he said to my dad, “You guys ought to go there sometime. You’d really enjoy it.” I don’t recall where they went. Perhaps Vegas.
It took everything Dad could do not to say, “Sounds great. Are you and Jody going to take off work and stay with Helen and Chris while we go?”
Don’t get me wrong, If they were both wonderful people. I loved them both dearly and miss them often. I could not have asked for a better aunt and uncle.The whole family was under stress in those days.
Back to our story. Karen sat in the dentist’s office waiting room with me and said, “It kind of looks like I’m the ‘Jody’ in this scenario, doesn’t it?”
I reassured her, “The fact that you worry that you might be a ‘Jody’ is ample evidence that you are not.”
When Carol first moved in to help with Dad and me, I asked her how long she might stay. Her response was, “I can stay as long as Dad is alive, but I can’t promise I will be here as long as you are alive.”
I appreciated her honest assessment.
Finally, for the first time in an acute manner, I needed to make concrete plans for what to do once Dad was gone. I had no idea how difficult it would be to find a nursing facility that would take someone who used a ventilator. The weird part is, I’m not really dependent upon the ventilator. I just use it like a CPAP or BiPAP machine to help me sleep. But the minute you say the word “ventilator,” they don’t want anything to do with you.
With some help from my CICOA case manager, we found a place called the Greenwood Healthcare Center in the south side suburb of Greenwood. On December 8, 2018, my friends Rich and Kathy Logan drove me to Greenwood to tour the facility.
This was not my first visit to the facility. My cousin Nancy was there for a few months before she passed away. She had a rather large room, but she had insisted that her insurance provide a private room. The room that they showed me was in their respiratory section. Because I was on Medicaid rather than private insurance, they could only give me a dual-occupancy room. It was quite small with no personal space and nothing but a curtain between you and your roommates.
In other respects, it seemed like a nice place. It didn’t stink like pee.
I asked the woman giving me the tour if there were other residents who, for lack of a better term, were my peers. Someone who was not there in a zombie-like state from Alzheimer’s. I wanted someone with whom I could socialize. Ideally, someone who was there more for their disability than for advanced age. I was 63 at the time. I still saw myself as being more disabled than elderly. She said that in the respiratory wings, the residents were probably in pretty bad shape. However, there would be ample opportunity to socialize with other more active residents in common areas and the activity room. That was a relief to me.
I didn’t like the idea of not having any personal space. There wouldn’t even be room to set up a desk with a computer. I would rely on my laptop. I speculated that Rich could set up my desktop and my 3D printer somewhere in his house, and I could use remote access to them from my laptop using a program called TeamViewer.
This was not my last encounter with the Greenwood Healthcare Center. We’ll have lots of stories to tell about that facility in future episodes.
Throughout early January, my notes and Facebook posts discuss the challenges Dad and I faced while trying to get by on our own. He was gradually deteriorating.
I remember one night, I hit my buzzer and needed him to suction my trach. He was very weak and only half awake. A couple of times during the process, I thought he was going to fall down. The bad part is, I can’t talk during that process. It was quite scary.
I was having challenges during the day as well. In addition to lots of cancellations by my nurses and aides, my notes reminded me of an incident one day when I needed suctioning. My nurse fell asleep on the job, and I had great difficulty getting her awake to care for me.
Speaking of falling asleep, Dad would often fall asleep in the middle of a conversation. He wasn’t sleeping well at night, but could barely stay awake during the day. His condition was declining day by day.
On Saturday, January 12, we had a nasty snowstorm, and my aide didn’t want to venture out in it. I couldn’t blame her. That night, Dad had a sleepless night. At 3 AM, with nothing to do, he decided to try to repair a basket hanging from his walker. I heard him go out to the garage to get tools, then spend about an hour banging on the walker and basket, trying to fix them. I was terrified he was going to fall or hurt himself. In the morning, I gave him a very stern talking to about taking such ridiculous risks.
The next day, Carol came by for a visit. She was still quite weak after radiation treatments, and she wasn’t able to eat properly. She concluded she would not be returning to live with Dad and me until the following weekend. Those plans would quickly change.
On Monday, January 14, 2019, Dad was doing relatively well. I asked him if he was up to doing a little project for me. I wanted to create a new pushbutton that I could use for the nurse call system at the Greenwood Healthcare Center. He wheeled his three-wheel scooter into our spare room and pulled up to his worktable. He soldered a feather-touch microswitch on the end of a length of speaker wires. He soldered a quarter-inch audio plug on the other end. It was the last piece of assistive technology that my dad ever built for me. I hoped I never needed it. I still have it. I treasure it greatly, even if it is never used.
This was just a couple of days before the arrival of my new Prusa 3D printer. I paid $1,000 for it. I could have gotten it in kit form for $700. Every time I looked at it, I thought of how much fun Dad and I would’ve had assembling the kit. It would’ve been reminiscent of the days when I built my first personal computer from a kit in February 1978. It often made me sad that we could not have done that in his condition. This one little tiny piece of assistive technology would have to serve as my final reminder of the countless hours we spent together building gadgets and assembling kits.
The next day, Dad fell in the bathroom. My nurse, Andrea, helped him get up. Later that day, his hospice nurse checked him out, and he was okay. The real consequence was the realization that we needed someone here full-time. Carol came back to us at 6 PM that evening. She wasn’t in very good shape, but she was in way better shape than Dad. We really needed her.
Throughout much of the rest of January, my notes were filled with cancellations by nurses and aides, leaving me in bed all day. Sometimes I would have a sleepless night and decide to stay in bed because I was too tired.
My aide, Riah, canceled several times. Once, because of the weather. Other times, because her son David was in the hospital. She was helpful in many ways. I had a loose pulley on my new 3D printer. With me talking her through it, she fixed it for me, and I was finally able to get the new printer fully calibrated and working. This was the kind of thing that Dad could’ve done with no difficulty in the past, but was now beyond his capability.
On a couple of occasions, Carol had to put me to bed even though she could barely do it. She developed bad back problems. I don’t think it had anything to do with her cancer, although it could have been malnutrition issues. That’s just speculation on my part.
By January 28, Dad was getting extremely weak. He wouldn’t take a shower even with help from his nurse. At one point, he suggested he should be going to a nursing home. He couldn’t get himself in and out of bed from his scooter. As an alternative, Carol suggested we get him a hospital bed to set up in the living room. That way, he could watch TV without being isolated in the bedroom. We hoped it would improve his spirits. The social worker from the hospice made arrangements to get to bed.
It arrived on the 30th. Dad had trouble finding the controls to raise and lower his head. I quickly designed and 3D printed a bracket to hold the controls on the bed rail, where he could reach them. It was one of the first practical things I built on the new 3D printer.
My notes for Sunday, February 3, say that my aide canceled, and I spent the day in bed watching “the worst Super Bowl ever.” I couldn’t recall why I said that. A quick Google search revealed that the New England Patriots beat the Los Angeles Rams 13-3 in the lowest-scoring Super Bowl in history. So, I guess I was right.
Tuesday, February 5, we replaced my trach, but it failed. The balloon was no good, and I only got about three hours of sleep. Dad was having a rough time as well. My notes say he needed more morphine.
The next day, we replaced the trach again, and I went back to bed about 3 PM.
On Thursday, February 7, Dad had lots of blood in his urine. The nurse put in a catheter.
I should mention that somewhere along the way, we lost our hospice nurse, Karen, because she had a family emergency. The replacement respite nurse was okay, but we really missed Karen. She had been through so much of this journey with us, and now that it was obviously coming to an end, it was sad that she wasn’t there.
Friday, February 8, was the 10th anniversary of my mother’s death. Dad was barely able to remain conscious. While many people in their last days say that they want to go home to die and not die in a hospital or hospice, Dad was the opposite. He had told us on many occasions that he did not want to die at home. We spent the day trying to get him admitted to inpatient hospice. To qualify for inpatient hospice, you had to be in need of pain management. As bad as he was, he wasn’t in pain. They also had the option for 5 days of respite care to give Carol a break. We knew he wouldn’t last five days, but we asked them if they could take him on that basis. They agreed late that afternoon. They arranged for an ambulance to take him to the hospice about 8 PM.
Carol wanted to accompany him to make sure he was settled in okay, so my sister Karen came to stay with me. It gave all three of us the opportunity to say our goodbyes to him. He seemed to be vaguely aware of what was going on, but was pretty much out of it.
After Carol checked him in at hospice, she returned home.
The hospice people were checking on him every half-hour. He was alive at 2 AM. At 2:30 AM, he wasn’t. Shortly thereafter, we got the phone call.
That was early the morning of February 9, 2019 – exactly 10 years and one day after my mother passed.
In my next episode, I will talk about his funeral and what happened after that.
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