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Entry tags:
- dad,
- death & dying,
- life,
- me
My Life from Late September 1984 to Early September 1986
The intersection of the Terri Schiavo brouhaha and my Aunt Marty's passing brought up some issues for me, as various of my comments at the time may have indicated. The intersection of those two events brought me to write an essay. Finally, after eighteen and a half years, I can look back at that period of my life and honestly say that I've dealt with it. :) That's good news. The contents of the essay are, how did Fred put it, powerful. That was what he called it.
I've provided the full essay below. It details my life from the first appearance of my father's symptoms, up to his death. I feel a need to share it, though you ought not feel obliged to read it. It's much more difficult content than my earlier-posted essay about fishing with my maternal grandfather, at least from my point of view.
And to my more anal friends who may read this, totally feel free to pick apart grammar and punctuation; content is what it is, unless you find it unclear somehow, in which case i'd like to know. Though I wonder that a couple of the paragraphs might be a bit long; I've only done minor editing to date.
In the early Fall of 1984, my father’s speech began to slur, similarly to how it would be slurred had he been drinking, which he did not do. In early November of that year, he choked on his dinner one evening. My mother performed the Heimlich on him, and she insisted he should go to the doctor. He agreed, and went to bed early that night. I’m guessing he must have been terrified; not knowing why your body is not working as it should is scary.
Several consultations with doctors, initially through the District of Columbia Police and Fire Clinic, led to referrals to Georgetown University Hospital and the Washington Hospital Center. Months of testing followed. In January 1985, I remember him in pain on the downstairs couch due to a spinal tap; they did another spinal tap that March. By April, they had determined that he had Lou Gehrig’s Disease, which is formally known as Amyotrophic Lateral Sclerosis. Multiple Sclerosis destroys the central nervous system, leading to death. The congenital form of MS can be treated with drugs, and patients can live for decades. My father’s Uncle Charles had congenital MS, and lived into his early 50s. ALS destroys the lateral and autonomic nervous systems, leading to death.
My father’s motor skills declined through the early part of 1985. I’d begun the application process to the Thomas Jefferson High School for Science and Technology in the Fall of 1984, just as his early symptoms were appearing. He signed all the paperwork for me to apply, as my mother refused to do so. Through the Winter of 1984, and into I think it was March, he drove me to take tests at North Stafford High School in Garrisonville, VA, at Fort Hunt High School in Alexandria, VA, and the last test, in late February or early March of 1985, at Potomac High School in Dumfries, VA.
I was terrified being in the car with him on that last trip to and from Potomac High School for the SAT. I mentioned this to my mother when I got home, and we learned that his doctors had told him to stop driving several months prior to that. He loved to drive. My mother made some phone calls while he looked more miserable than I’d ever seen him and arranged for his car pool to pick him up at the house after that, rather than him meeting them at the commuter lot as he had for the previous decade.
On either the last Saturday in April or the first one in May, I forgot which, the mail arrived just as I was heading out the door to the car for the Virginia Band and Orchestra Directors Association Districts IX & XI Solo & Ensemble Competition, which that year was held at West Springfield High School in Springfield, Virginia. Mom was driving me and my quartet. A letter had arrived from the Fairfax County Public Schools; I was in a hurry, so I didn’t open it, but I knew it was too thick to be a rejection. I opened it later, when we got home; I’d been accepted to Jefferson. My father signed that last batch of papers to let me enroll there. That was to be the next to last thing my father would do for me. The last thing he did was to get mention of my admission into the Secret Service newsletter that May. That issue of the newsletter is still in my piano bench at my mother’s house.
By the time his 40th birthday rolled around that 25 June, he was using his vacation time, as he was no longer fit to work. Though he could walk, with a bit of a limp due to a gunshot injury he received in 1973 due to drawing his gun from his holster with the safety off. He had a velcro leg brace in late 1973 and early 1974 due to that injury. I spent many hours playing with it when he wasn’t wearing it: stick, riiip, stick, riiip, stick, riiip, stick, riiip… for hours on end. Anyway, by that point he could still walk, but he couldn’t talk; he communicated by writing on a pad.
School started the last week of August that year. Dad went into Georgetown University Hospital that September to have a gastronomy tube put in because he could no longer swallow food. While he was there for that, they decided to put him on a respirator due to his low lung capacity. We visited him in the ICU there. He was most put out that they put him on the respirator without asking him what he wanted. He came home about a week later, with twenty-four hour nursing care. And thus our home life was interrupted with the rhythms of the nursing staff caring for my father. Roberta worked the day shift, and Frank the night shift the whole time Dad was bedridden at home. A variety of people worked the swing shift, though Anne worked it for the longest period of time. A beautiful ornamental tree she gave our family just before Dad died still grows in my mother’s front yard.
Gradually, Dad lost the ability to write, then the ability to hold things. We devised a board with the alphabet and common phrases on it, with a line down the middle. We would start with the common phrases: “First row?” “Second Row?” “Before the line?” “You’re thirsty?” “OK, we’ll get some water.” He would look to his left for yes and to his right for no. When the common phrases did not have what he wanted, we would work our way through the alphabet with him, spelling out what he wanted to say. My sister had a special knack for intuiting what he wanted to say after a few words; and sometimes, after a few letters.
Because he’d used up the lifetime limit on BCBS, we changed to Aetna that open season, effective in January 1986. We had to change nursing companies due to the change in insurance providers. Roberta, our daytime nurse, signed up with the new agency in order to continue with us. That continuity meant a lot to us, and was more appreciated than any of us were able to express to her. Frank, the night nurse, was already signed up with that agency, and got to stay with us. Ann became our swing shift nurse. Looking at that tree, oddly, does not cause sadness; rather, it comforts me because it represents all the kindness we were shown by both friends and strangers during those years: the nurses, the friend of the family who paid for cable for us, as watching TV was all Dad could do, the man who wrote off our bill for the respirator because we could not afford to pay for it.
In January 1986, Dad spent a few weeks in I forget whether it was Potomac or Prince William Hospital due to pneumonia. He returned home just before my sister’s and my birthdays, which are in early February. And thus life continued our life up until 18 June, when due to pneumonia again, Dad was taken to Prince William Hospital in Manassas. It was there that he was for is 41st birthday on 25 June. It was the day after his birthday when the insurance company informed us they would not allow him to return home because they did not want to pay for the 24-hour nursing anymore. Instead, they placed him in Annenburg Manor, a nursing home in Manassas. Even though the nursing home cost, I think it was in the 25-30% range more than the home nursing. I saw him once while he was in Prince William Hospital, near to his birthday. That day, he began spelling: I-W-A-N-T-T-… when my sister said “You want to die?” and he said yes. My mother stormed out of the room to the nurse’s station in that area, and asked if he’d said that before. They said that he’d said that a lot, but they figured he was just having a bad day. My mother proceeded to explain to them exactly why someone who was immobilized with a terminal illness would be having a bad day, and would likely prefer to be dead. The nurses were appalled and defensively speechless.
Over the coming days, my mother consulted lawyers, and found one to petition the court to allow my father to be removed from life support. Dad was moved to the nursing home while she was pursuing that option for him. A videotape of my father was made for the court, and we were given a copy; none of us has ever watched it.
School started the last week of August that year, and the Friday of the second week of school, I went to the guidance office. Fairfax County Public Schools had, and may still have, a policy of mailing things to Father’s name/Student’s name. I explained my situation, and asked that they change mine to Mother’s name/Student’s name. They seemed a bit perplexed, but honoured my request. That was on Friday, 5 September. On 6 September 1986 he died at Annenburg Manor in Manassas, before the court made a final ruling. I returned to school on Monday the 8th, informed the Guidance Office that he had died, and that I would be out of school for the next several days. They seemed not sure what to do. I thanked them and headed to class. I told off some member of his family that night at one of the viewing sessions, which were at Mountcastle Funeral Home at the corner of Horner and Occoquan Roads in Woodbridge, VA. They said something to the effect of I was now the man of the house, and would need to care for my mother. I sternly corrected whomever it was, explaining that I was 15, and my sister was 12 , and it was our mother’s job to care for us, not our job to care for her; she had friends and family for that, and then stormed off to sit by myself. Ooh that person, undoubtedly one of my many great-uncles, or perhaps one of the elder cousins, made me mad. Anyway, on 9 September 1986 he was interred at Stafford Memorial Park on Shelton Shop Road, Rte 648 , just below Rte 610, Garrisonville Road and just past North Stafford High School, in Garrisonville, VA. To say the least, the whole Terri Schiavo thing brought up some issues for me. And then to top that off, my Aunt Marty, my father’s sister, died suddenly on 30 March 2005, also of ALS. The intersection of those events are why I’ve chosen to write this now.
I've provided the full essay below. It details my life from the first appearance of my father's symptoms, up to his death. I feel a need to share it, though you ought not feel obliged to read it. It's much more difficult content than my earlier-posted essay about fishing with my maternal grandfather, at least from my point of view.
And to my more anal friends who may read this, totally feel free to pick apart grammar and punctuation; content is what it is, unless you find it unclear somehow, in which case i'd like to know. Though I wonder that a couple of the paragraphs might be a bit long; I've only done minor editing to date.
In the early Fall of 1984, my father’s speech began to slur, similarly to how it would be slurred had he been drinking, which he did not do. In early November of that year, he choked on his dinner one evening. My mother performed the Heimlich on him, and she insisted he should go to the doctor. He agreed, and went to bed early that night. I’m guessing he must have been terrified; not knowing why your body is not working as it should is scary.
Several consultations with doctors, initially through the District of Columbia Police and Fire Clinic, led to referrals to Georgetown University Hospital and the Washington Hospital Center. Months of testing followed. In January 1985, I remember him in pain on the downstairs couch due to a spinal tap; they did another spinal tap that March. By April, they had determined that he had Lou Gehrig’s Disease, which is formally known as Amyotrophic Lateral Sclerosis. Multiple Sclerosis destroys the central nervous system, leading to death. The congenital form of MS can be treated with drugs, and patients can live for decades. My father’s Uncle Charles had congenital MS, and lived into his early 50s. ALS destroys the lateral and autonomic nervous systems, leading to death.
My father’s motor skills declined through the early part of 1985. I’d begun the application process to the Thomas Jefferson High School for Science and Technology in the Fall of 1984, just as his early symptoms were appearing. He signed all the paperwork for me to apply, as my mother refused to do so. Through the Winter of 1984, and into I think it was March, he drove me to take tests at North Stafford High School in Garrisonville, VA, at Fort Hunt High School in Alexandria, VA, and the last test, in late February or early March of 1985, at Potomac High School in Dumfries, VA.
I was terrified being in the car with him on that last trip to and from Potomac High School for the SAT. I mentioned this to my mother when I got home, and we learned that his doctors had told him to stop driving several months prior to that. He loved to drive. My mother made some phone calls while he looked more miserable than I’d ever seen him and arranged for his car pool to pick him up at the house after that, rather than him meeting them at the commuter lot as he had for the previous decade.
On either the last Saturday in April or the first one in May, I forgot which, the mail arrived just as I was heading out the door to the car for the Virginia Band and Orchestra Directors Association Districts IX & XI Solo & Ensemble Competition, which that year was held at West Springfield High School in Springfield, Virginia. Mom was driving me and my quartet. A letter had arrived from the Fairfax County Public Schools; I was in a hurry, so I didn’t open it, but I knew it was too thick to be a rejection. I opened it later, when we got home; I’d been accepted to Jefferson. My father signed that last batch of papers to let me enroll there. That was to be the next to last thing my father would do for me. The last thing he did was to get mention of my admission into the Secret Service newsletter that May. That issue of the newsletter is still in my piano bench at my mother’s house.
By the time his 40th birthday rolled around that 25 June, he was using his vacation time, as he was no longer fit to work. Though he could walk, with a bit of a limp due to a gunshot injury he received in 1973 due to drawing his gun from his holster with the safety off. He had a velcro leg brace in late 1973 and early 1974 due to that injury. I spent many hours playing with it when he wasn’t wearing it: stick, riiip, stick, riiip, stick, riiip, stick, riiip… for hours on end. Anyway, by that point he could still walk, but he couldn’t talk; he communicated by writing on a pad.
School started the last week of August that year. Dad went into Georgetown University Hospital that September to have a gastronomy tube put in because he could no longer swallow food. While he was there for that, they decided to put him on a respirator due to his low lung capacity. We visited him in the ICU there. He was most put out that they put him on the respirator without asking him what he wanted. He came home about a week later, with twenty-four hour nursing care. And thus our home life was interrupted with the rhythms of the nursing staff caring for my father. Roberta worked the day shift, and Frank the night shift the whole time Dad was bedridden at home. A variety of people worked the swing shift, though Anne worked it for the longest period of time. A beautiful ornamental tree she gave our family just before Dad died still grows in my mother’s front yard.
Gradually, Dad lost the ability to write, then the ability to hold things. We devised a board with the alphabet and common phrases on it, with a line down the middle. We would start with the common phrases: “First row?” “Second Row?” “Before the line?” “You’re thirsty?” “OK, we’ll get some water.” He would look to his left for yes and to his right for no. When the common phrases did not have what he wanted, we would work our way through the alphabet with him, spelling out what he wanted to say. My sister had a special knack for intuiting what he wanted to say after a few words; and sometimes, after a few letters.
Because he’d used up the lifetime limit on BCBS, we changed to Aetna that open season, effective in January 1986. We had to change nursing companies due to the change in insurance providers. Roberta, our daytime nurse, signed up with the new agency in order to continue with us. That continuity meant a lot to us, and was more appreciated than any of us were able to express to her. Frank, the night nurse, was already signed up with that agency, and got to stay with us. Ann became our swing shift nurse. Looking at that tree, oddly, does not cause sadness; rather, it comforts me because it represents all the kindness we were shown by both friends and strangers during those years: the nurses, the friend of the family who paid for cable for us, as watching TV was all Dad could do, the man who wrote off our bill for the respirator because we could not afford to pay for it.
In January 1986, Dad spent a few weeks in I forget whether it was Potomac or Prince William Hospital due to pneumonia. He returned home just before my sister’s and my birthdays, which are in early February. And thus life continued our life up until 18 June, when due to pneumonia again, Dad was taken to Prince William Hospital in Manassas. It was there that he was for is 41st birthday on 25 June. It was the day after his birthday when the insurance company informed us they would not allow him to return home because they did not want to pay for the 24-hour nursing anymore. Instead, they placed him in Annenburg Manor, a nursing home in Manassas. Even though the nursing home cost, I think it was in the 25-30% range more than the home nursing. I saw him once while he was in Prince William Hospital, near to his birthday. That day, he began spelling: I-W-A-N-T-T-… when my sister said “You want to die?” and he said yes. My mother stormed out of the room to the nurse’s station in that area, and asked if he’d said that before. They said that he’d said that a lot, but they figured he was just having a bad day. My mother proceeded to explain to them exactly why someone who was immobilized with a terminal illness would be having a bad day, and would likely prefer to be dead. The nurses were appalled and defensively speechless.
Over the coming days, my mother consulted lawyers, and found one to petition the court to allow my father to be removed from life support. Dad was moved to the nursing home while she was pursuing that option for him. A videotape of my father was made for the court, and we were given a copy; none of us has ever watched it.
School started the last week of August that year, and the Friday of the second week of school, I went to the guidance office. Fairfax County Public Schools had, and may still have, a policy of mailing things to Father’s name/Student’s name. I explained my situation, and asked that they change mine to Mother’s name/Student’s name. They seemed a bit perplexed, but honoured my request. That was on Friday, 5 September. On 6 September 1986 he died at Annenburg Manor in Manassas, before the court made a final ruling. I returned to school on Monday the 8th, informed the Guidance Office that he had died, and that I would be out of school for the next several days. They seemed not sure what to do. I thanked them and headed to class. I told off some member of his family that night at one of the viewing sessions, which were at Mountcastle Funeral Home at the corner of Horner and Occoquan Roads in Woodbridge, VA. They said something to the effect of I was now the man of the house, and would need to care for my mother. I sternly corrected whomever it was, explaining that I was 15, and my sister was 12 , and it was our mother’s job to care for us, not our job to care for her; she had friends and family for that, and then stormed off to sit by myself. Ooh that person, undoubtedly one of my many great-uncles, or perhaps one of the elder cousins, made me mad. Anyway, on 9 September 1986 he was interred at Stafford Memorial Park on Shelton Shop Road, Rte 648 , just below Rte 610, Garrisonville Road and just past North Stafford High School, in Garrisonville, VA. To say the least, the whole Terri Schiavo thing brought up some issues for me. And then to top that off, my Aunt Marty, my father’s sister, died suddenly on 30 March 2005, also of ALS. The intersection of those events are why I’ve chosen to write this now.