In the span of a decade (1998-2008) a lot of negative things were happening in my life, and very few people knew all of the details. I suspect many of the people who I was in contact with didn't even realize the extent of the problems I was facing, and some may have even believed that I was choosing this path or that I must be fabricating stories to cover for my own choices. So I have decided to present the straight truth, with no refining of details and no hiding the sad facts. It is true, but I leave it to the reader to decide if they want to believe...
The story really begins in August 1998. I was excited to be entering my fourth and final year at the University of Victoria as an undergraduate in Honours Mathematics & Physics, and was already making plans for going away to graduate school.
Then my father had a transient ischemic attack (a mild form of stroke) while he was at work, and things started to go downhill. He was checked out by the hospital neurologist and sent home. But he wasn't recovering so a few days later he went back into hospital. Two more neurologists examined him but they also found no problem with him. Unfortunately a week after his first TIA, he had a massive stroke that left him paralyzed on one side and they told us he probably would not survive this.
He always claimed later that he had no indications that this was coming on, but in the year leading up to it he was suddenly putting a lot of his estate in order, and making arrangements that in hindsight were preparations to be incapacitated. I will never know if he knew he was about to have a problem and ignored it, or if his family doctor gave him bad advice, or if it really was a coincidence. But it is clear looking back that he was preparing to die.
Somehow he did survive it, and started the long path of recovery. Apparently the fates decided that a stroke was not enough of a problem, because several more things happened the following month. Somehow my father got moved to a long-term care facility before his treatment program was finished, but I have never gotten an answer as to why that happened. It was disappointing to me, because most of the staff at the Victoria General Hospital were excellent, and I had complete confidence that they would get my father well again.
Then after the move, a doctor who I won't name here decided that it would be appropriate to give my father the maximum allowed dosage of an experimental drug (without consulting the family) and to force him to stay on it for over a year. From the start I saw that it was causing a lot of damage, and we begged the family doctor to cancel it, but he refused. Since then I have talked to a number of experts in this field, and so far every single one of them has said it should have been administered for only two weeks, not for a year. I may not be a medical doctor, but I am trained as a scientist and I can track trends in data. For the two months following his stroke, he was concerned about the family and insisted that I focus on my education first - for the months after the drugs were given, his only priority was himself and his own comfort. I have no doubt at all that the doctor prescribed overdose did more damage to my father than the stroke.
And so, for the rest of 1998 I attended 20 hours of honours level classes each week to complete my degree, and spent a lot of time applying for graduate schools, and spent at least 15 hours each week visiting my father in hospital or attending medical meetings, (and I often did my homework sitting in hospital rooms or doctor's offices). Add to that the fact that my mother hadn't dealt with the world outside of the house for 25 years so that I had to also do their banking, bill payments, shopping, and anything else that came up. When I look back on those months I don't know how I fit it all in to my schedule.
As a side note, some people have wondered where my older brother was during all of this time. At 25 years old, he was still living at home and didn't have any form of training or employment to occupy his time. What they don't realize (because my mother kept it hidden) was that my brother was and is either lazy or he has some mental problems. From the time he was 18 to now when he is 36, he has never bothered with any form of career training, has never held a job, and has never done any significant amount of household chores. He literally watches TV,eats, or plays with his toy trains for the entire day. So no matter how overwhelmed I got with carrying the entire workload, all he would ever do is add more problems.
So I managed to wade through all that was placed on me that year, and graduated in 1999. I had taken the GRE exam for graduate students, and received a perfect grade on one part and two 96% grades on the other parts - and based on those results I received over 200 recruitment packages to graduate schools. I accepted an offer from the University of Alberta, which was one of my top three choices, and the following September I moved to Edmonton to start there.
And that is when everything got worse. Since my father could no longer drive, and since neither my mother nor my brother drove, he gave me his truck to use. Unfortunately he had done it after his stroke, so the gift had no legal power to it and my brother decided he wanted the truck left in the yard (I have no idea why since he couldn't drive and never did drive it). But with threats to have it reported as stolen if I tried to use it, I left it behind and instead had to buy a truck of my own. I had planned to get a summer job that year to pay for it, but my parents decided I should spend the summer looking after them. They agreed to pay, but by the end of the summer only a small fraction had been paid, and so the only truck I could afford was really not up to making the trip. It gave out on the highway as I was driving across the province, and with no money I was forced to return to Victoria to figure out other options.
In hindsight, I should have found someway to get to where I needed to go even if it meant walking there. But like a fool I figured I would stay in Victoria one more year and leave the next. I was very lucky to have some good friends at the University of Victoria who helped me to get into the graduate program there in spite of the late date, and arranged for me to work at the TRIUMF particle accelerator the following year. I had a lot of enjoyment that year - for the first time in my life I was able to really study advanced physics and start on my own research career. But I made a mistake by staying at home to look after my father instead of getting my own apartment where I could be separate from the family.
So I finished that first year of graduate school while also looking after my parents fulltime, and then I thought the load would be lessened. There had been a deal reached when my father first came home that he would be on a waitlist for a long-term care bed, and that in about one year he would go there and I could go back to being a fulltime student. But when I went to check on it, I found someone had taken him off the waitlist - I was never told who did it. I tried repeatedly to get someone in the health care system to honor that original agreement and find a place for him or some form of assistance, because I certainly couldn't do it anymore when I moved to Vancouver!
I had planned to move in May 2000, and I even spent many days living in a hotel room and getting settled in to the theory group at TRIUMF. Because of the lack of support for my father, I delayed moving over by a month so I could try to get some help for him. Then it became two months. I ended up spending 18 months of travelling to TRIUMF for a few days and then driving back home for a few days to handle those problems. I phoned and emailed everyone I could think of in the healthcare system, and in the support groups, but no one ever offered a solution other than having me quit school to do a job that should have been arranged before my father ever left the hospital. I was having to spend about thirty hours and $700/month on travelling back-and-forth to my job, when I should have been enjoying the experiences of my first research position.I was very fortunate to have very supportive and understanding graduate advisors, but I really regret not having the opportunity to spend more time working with them and learning from them.
I finished that job and my MSc degree, and started on my PhD work. It was clear that commuting to Vancouver every week would not work, so arrangements were made for me to work with a new faculty member joining the department at UVic. I was lucky to have received a federal research grant, so my finances were in order for the first two years of research, and my new graduate advisor gave me some really interesting projects to work on.
But as before, I was perhaps too sympathetic to my parents and so I continued to look after them fulltime instead of moving to my own apartment. I thought that I could manage their affairs in the evenings and weekends, but as before they demanded more. And as before those in the hospital system who should have been helping were nowhere to be found.
I missed out on a lot of graduate student experiences because of this extra load. The physics department used to get a guest lecturer each week to present other topics of research, but unfortunately each week the doctor would schedule tests that I had to take my father to instead of attending the lectures. I wanted to move the tests to another day, but apparently it was 'inconvenient' for the physician. Finally the department sent an email to all students encouraging attendance, so after my first year of missed lectures I was able to force the rescheduling using the memo as leverage. After that I think I only missed three lectures in the next four years.
But even then I couldn't participate in any social functions with the other students. They would go out to play baseball or hockey, and I had to go home to do chores. They would go on weekend trips together, and I was stuck at home doing chores. Worst of all, my graduate advisor generously offered to fund my trips to theory conferences - which I really wanted to attend - but usually I had to decline. I was offered two or three conferences each year, and in the end I could only attend three in the entire time I was a student. In one case there was a meeting of theoretical physicist in Vancouver, and within hours of arriving my parent's were calling me to tell me how much I was needed at home - and when that didn't work on me I started getting phone calls from medical staff telling me how selfish I was for 'going on vacation' (it was a professional conference) instead of caring for my parents. (In hindsight that sort of behavior by staff was really inexcusable, and I wish now I had filed a formal complaint about it)
So I continued on, doing my research whenever I could fit it in and trying every way I could to get someone to help with the caregiving load. My brother was still hiding in his suite and refusing to do any work at all. The costs of paying his bills meant my parent's couldn't always pay their own, and many times I was guilted into paying the shortfall. A few times I was called on my cell phone and told to come home early because something had gone wrong at home (ie my father would wander off sometimes, other times he would fall down and my brother would refuse to help him up again, etc)
Finally after seven years of this I found someone in the healthcare system who was shocked and dismayed at how much had been dumped on me when I should have been enjoying my university years. He looked for options for me in the system as well, and was even more shocked to realize there was no agency or department willing to provide assistance. I was caught in a bureaucratic loophole that apparently no one had considered before, primarily because my mother and brother kept blocking people from helping (for example, my brother would get violent if anyone came to the house to help with the chores because he wanted to stay isolated from the world) while my father couldn't handle his own affairs because of the drug mistake early on and because of his other disabilities.
In the end, I was told that the best path for me to follow would be to leave them, not provide any means for them to contact me, and get on with my own life. The idea was that, if forced to face the problems instead of having me bail them out all the time, my mother and brother - as well as the family doctor - might finally be willing to face up to reality. So although it was a tough thing to have to do, I started packing up and looking for an apartment to rent.
It was a good plan, but it failed. And I admit that I am partly to blame for the failure. Before I could change my cell phone number, my father had to be hospitalized again. One of the hospital doctors and a social worker contacted me (my mother and brother wouldn't talk to them) and raised concerns about my father's condition. They arranged a family meeting to work out a solution, but as usual my mother and brother refused to attend it. So my father and I were there, and a deal was worked out. I told them what I had been advised to do and why, and they agreed that something had to be done. A deal was worked out, and when I phoned my mother she agreed to honor the agreement.
So as part of the deal I went back to looking after them for one more year. My brother was required to get a job as soon as possible and begin supporting himself, but he refused. He was also ordered to take on at least half of the household chores, but he refused. My mother was supposed to quit transferring my father's pension to my brother, but she refused. And although part of the deal was that my father would go into a long-term care home, it also never happened. In hindsight I should have forced them to keep their part of the deal before I returned, but I was foolish and thought that this time they had finally learned. I was wrong.
That's the straight unsanitized story, whether you believe it or not. I am moving ahead and rebuilding my life now, but for all who questioned what was happening for those years, here it is.
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