Next Sunday is Father’s Day here in the United States. I no longer have the opportunity to spend this day with my father. What I do have though, are memories of time spent with him. I can easily remember the times that were good. It seems that after he passed away my brain compartmentalized any bad memories. My father and I had our moments both good and bad. So, let me tell you about my father’s involvement in my care and management of diabetes.
When I was diagnosed my father didn’t really participate in the daily trials and tribulations of this new routine in our household. I think he felt that since my mother was in the medical field, and my maternal grandmother being a retired nurse, that he only needed to stay employed so that we had health insurance. That was his role, in the beginning. I do remember overhearing a conversation between him and my mother that upon telling my paternal grandmother that I was diagnosed with diabetes her response was “Oh, well he will out grow it.” I wonder when that is going to happen? It has been almost 40 years! My grandmother eventually died of pancreatic cancer. Ironic, huh?
My father wasn’t an athletic type so I don’t think we ever threw a ball around or did any other kind of sport that fathers and sons participated in. That was OK with me though. I really wasn’t an athletic child either. However, my father’s idea of exercise was yard work. He was obsessed with mowing the lawn, raking the lawn, pruning bushes, washing windows and anything else you could do outside on a clear day. I hated yard work! But that was his contribution to the EDI formula I came home from the hospital with. In case you aren’t familiar with that acronym:
Exercise + Diet + Insulin = Controlled Blood Sugar
Eventually, the research and development teams in the diabetes scientific community made self blood glucose monitoring available to the consumer. Or at least to the consumer who could afford it. I was fortunate. My father worked for a small business that did well and my father was compensated equally well. In addition, his boss’ wife was also a T1D. At that time we were called juvenile onset diabetic. This is important because what ever his wife had he made sure that my father obtained it for me. A new self blood glucose testing meter arrived into my life.
It wasn’t perfect but it sure beat having to test urine every time you ate. Again, this was the extent of my father’s participation. He was the provider. I don’t think he ever gave me an injection or tested my blood. “Here’s your meter. Now go have fun…”
Another advantage of my father’s boss’ wife having T1D was I also went to one of the premiere Diabetologists in the Baltimore area. Why? Because that’s where his wife went. So, appointments were scheduled and on the given day my father would schlep me to the doctors office, before school. All my appointments with the doctor were fasting. There we were in the waiting room with all the other T1D patients. In addition to all having type one diabetes, we all were sitting there with our breakfasts in brown bags so we could eat as soon as the appointment was over. My father never went in to the exam room, instead he would wait in the waiting area for me to come out. The doctor would have a brief conversation with him. Little did the doctor know that my father didn’t understand a thing he said. I learned early that I had to pay attention to what was being said both in and out of the exam room so I could report back to my mother, the Chief Medical Officer, in the house. But, my father took the time out of his 60+ hour work week to take me to the doctor and then back to school.
It pretty much went on like that. My mother ran the medical side and my father was the quartermaster and accounting department.
Now, I am a teenager. I go to school in the city, which is a 45 minute school bus ride. The only time my father ever drove me to school was after I had my diabetes appointment. That actually worked out well for him because he didn’t need to double back when I was in middle school. Life, again, went on as usual. Like I said earlier, I wasn’t an athletic kid so sports weren’t my thing. But, I came from a musical performance family. I could sing. Drama club here I come! This was going to be a new experience because up until this point in time, I was usually home by 4PM and had food at my disposal should I have a hypo. Now I was in the auditorium until 6PM with no access to food. Fortunately, the CMO was also the catering manager and always packed me extra food for snack and hypo. The deal I had with my parents was I could do drama but I had to find my own way home. Only on occasion, did my father have to pick me up from rehearsal. Things worked out pretty well. I do not recall any major issues and I always found a ride home with the exception of probably 2 or 3 times.
While I was rehearsing for “Man of La Mancha”, my maternal grandmother was planning a trip to Europe to see the special anniversary production of The Oberammergau Passion Play, in Oberammergau, Germany. When my 14th birthday rolled around her gift to me was to accompany her on this 15 day trip. I was so excited. I could hardly wait for the school year to end.
The school year came to an end. Two weeks before we were scheduled to leave my grandmother took ill and was diagnosed with colon cancer. She was not going to be able to go on the trip. In steps my father. He would take her place. This was a once in a lifetime experience and he wanted me to experience it. Off he went to Washington, DC to stand in line to get an expedited passport.
Remember, my father had no real experience with diabetes and he and I were going to be on a tour in a foreign country for 15 days. It was sink or swim. So with passports in hand and a bag of extra medical supplies, a letter from my doctor explaining the supplies and supply of Lifesavers in my carry on – we left for Geneva with the rest of our tour group.
My father learned how to ask for drinks without sugar, also how to say “I need sugar my son is diabetic”, and how to order diet Coke®. Diet Coke® was available in Europe but not in the United States yet. It was great to find a restaurant with it. Otherwise, I learned to drink tea without sweetener. Fortunately, this tour was heavy on walking all over hither and yon so I never really had any issues with low blood sugar because all the carb heavy foods we ate were walked off – and sometimes they were walked off as I was eating them! The tour had a few “free days” included where there were no tours scheduled and we could do as we pleased. One of those days was in Rome. While the rest of the group headed off on a private tour, we declined and spent the day walking around Rome. He was stationed in Europe while he was in the Air Force and had taken a trip to Rome on leave. so as we walked he would tell me stories about his time in Rome. Walking around Rome with him was one of the highlights of the trip.
We made it through the 15 days and returned to the US without incident. (Well, we had a minor incident in the Geneva airport…but that is a story for another time.) My father always made sure I had my meter and lifesavers and he trusted that I would let him know if I was getting low. (My grandmother had her surgery and recovered without incident. She enjoyed seeing all the photos we took, 35 rolls, and hearing about the Passion Play that she had longed to see since seeing it in the orphanage, as a child.)
Again, things returned to the status quo at our house. I went back to managing my diabetes independently, with guidance from my Endo, my mother continued to put food on the table at prescribed hours and my father continued to make sure that I had everything I needed to manage my condition. My father would buy me wholesale quantities of Smucker’s sugar-free jelly pods like they have in restaurants. Single serve containers. This was his contribution to making life better for me.
When I went off to school the cargo I hauled to Winchester, VA included a wholesale case of Trident Gum, Cheese Crackers with Peanut Butter and a few other boxes of things he thought I may need. I never chewed the gum. I would give it away to people who would come to the room to visit. My father’s intentions were always good.
And that is how things went thereafter. My father never had a direct role in caring for me but without the role he played my management and my life experience with diabetes would have been a whole lot different
After the 15 days in Europe, our relationship changed. Although I was always my “mother’s son” after spending that time together we really bonded and my father became my best friend. That is not to say we never had a row or difference of opinions – because we had a lot of those, but in the end it always came back to him and me in Europe, together.
I always had my father’s back regardless of what was happening with him. Life was not always good to him but I did what I could to lessen those burdens. We would meet for lunch a lot. It was like being back in Europe. Him and me, eating together and talking. I gave my father a good bit of counsel during those lunches and I learned to listen to what he was experiencing in life. Perhaps later I will tell you more about my father and his trials.
My parents eventually moved to Florida, as all good senior citizens do when they reach a certain age. As families do, we had a row, or more specifically, my mother and I had a row which resulted in me not talking to her for several months. Eventually, my father stopped talking my calls because he didn’t want to be in the middle because my mother would always ask if it was me. So, he just didn’t answer the phone – the down side of caller ID. Then, on my way home from work, which is when I usually talked with my father, I got a call from my mother. My father has cancer of the bladder. The doctor said it is in situ at the moment and they were going to do Botox treatments in the next week and things should be OK. That ended the row and I went into nurse mode looking up all I could on his therapy and the prognosis. Therapy was usually successful and the prognosis was good. Long story short – the in situ carcinoma had quickly grown and was now invading the bladder, prostate and urethra. The only option was to remove the bladder, prostate and urethra and created an ileal conduit diversion cystotomy – in lay terms, he was going to pee in a bag from now on.
I wouldn’t see my father again after this visit. Despite being cancer-free my father continued to have pain in his abdomen and was not enjoying the quality of life he had been expecting. He was taking pain meds to control the pain in his belly. The best the doctors could say was it was idiopathic. They scheduled him for an MRI with contrast to take one last look and see if there was anything they ere missing. Something got snafu’d in the scheduling and he went to the hospital for the procedure and was turned away to come back the next day. I firmly believe that my father had “survivor’s guilt“. He had prepared himself to die from the cancer, and now here he was cancer-free. I spoke to him on the phone that night. Sometimes I had to be firm with my father and give it to him straight. He didn’t feel well, and was probably developing a cold, and he was upset over the snafu. I told him, quite firmly, “You will get through this.” He then said to me “I can’t talk to you any more.” and handed the phone to my mother. We finished the conversation and said good night. About 11 AM the next day I received a call from my mother. All she could say was “Your father is dead.” I told her I would be there as soon as I could get a flight. I then called my brother and we made arrangements to meet in Tampa. I believe that my father overdosed on his meds that night because he was just tire of living. When I hung up from my brother I was no long calm and collected. I don’t know where it came from but it was primal, raw emotion and it was erupting from deep down inside. By the time my brother and I had arrived the cremation service had already come and collected my father. Since he was under a doctor’s care there was no autopsy. I can tell you that I wasn’t much better at his memorial service. I never realized just how much I loved my father and what an important part he played in my life, until he was gone.
Here are few more pics of my father: