After a long, hard struggle and decline, my mother died early this morning.
I've been awake for nearly four hours now, trying to sort out how I feel and what I want to say. Ours was a difficult relationship: as much as we loved each other, we did not fully understand one another.
It is not necessarily the personal I want to write about this morning, although that is part of it and I can't completely hide it away. It's more about the last few years of her life, why she suffered so, and what I wish could change in the way we care for the elderly incapacitated.
And more, what I wish could have been for her, and countless others like her who could benefit if stem cell research were further advanced than it is now.
Mom stopped eating a couple of weeks ago, and completely quit taking in fluids last weekend. I am honestly surprised she lasted as long as she did. Her health saga over the last few years is the real tragedy, not her death. If I have any peace, any acceptance at all, it is because her ordeal is finally over.
Several years ago, my mother was diagnosed with a meningioma. These are benign brain tumors -- as if any tumor in the brain can be called benign -- and mostly affect women during and after menopause. According to my mother's neurologist and neurosurgeon, there is real concern that meningiomas can be affected by longterm use of estrogen orally. Thus hormone replacement therapy, even the modified variety, can pose a risk of exacerbating these tumors when they occur. Early menopause runs in the family, and she began taking HRT not long after Dad died in the early 1970s. She only went off it four years ago. So thirty-plus years of extra estrogen, while good for her bones, may not have been such a smart choice. Her brain is being harvested for research on this very connection, since we want to know as much as we can: both my sister and I also went through early menopause and have taken estrogen alone. I stopped taking it a couple of years ago, with a fair amount of regret, because of these concerns.
First she had radiosurgery, which was supposed to kill the tumor without damaging the surrounding brain. The headaches eased up, and she seemed fine for a long time. But four years ago, I noticed personality changes. She had always been slightly acerbic, and she had such command of the English language that she could flay you with words and you not even realize it until it was all over. After all, this was a woman who loved Chaucer and Shakespeare, introducing her children to these writers at pretty early ages. This wasn't that -- she was becoming unpredictable, often mean, sometimes downright cruel. I wondered what was wrong with her, but suspected encroaching Alzheimer's, which runs in the family. None of us ever suspected that it was the meningioma -- after all, it had been fixed.
After two years, it became obvious that this wasn't incipient senile dementia, but something even more serious. Mom was in a fair amount of pain, and not just from headaches, although those were becoming worse. Her balance was off, and so were her reflexes. Riding in a car with her driving was starting to scare the holy hell out of me. I remember going to help her clean up the yard after it had been trashed by two hurricanes, and worrying about how she was going to get around. The incident that set me off was this: we were in the kitchen, and she was getting out a can of soup from the lazy-susan in the under-cabinets, kneeling on the floor. When she moved to get up, she lost her balance and nearly fell over backwards, only making it to her feet with some difficulty. It scared the hell out of me. She brushed off my suggestion that she go see a doctor -- but that only lasted a little while. A couple of months later, my older siblings prevailed upon her to go to the doctor for a referral -- she was literally falling over her own feet while trying to garden.
None of us was prepared for what we got from the neurologist: the tumor was growing, and something had to be done. It was located in the front of her skull, right between the two hemispheres, and the stem of it extended back some distance. Mom was at risk of seizure, and she was still driving. That ended pretty abruptly. A consultation was set up with a neurosurgeon in a city across the state at a major research hospital, and a series of MRIs done. The surgeon's verdict was that she had to have it removed via a traditional craniotomy. She was no longer a candidate for radiosurgery, as that might well aggravate it. A date was tentatively set, and the usual precertification and approval process started with Medicare. Surgery was scheduled for a couple of months later.
The day before the surgery, another round of MRIs were done, this time much more detailed, almost 3-D in scope, so the surgical team could map the cutting. The morning of the surgery, the surgeon was damned near grim, because the tumor had grown a surprising amount in that short a time. It had hooked around, too, so none of us were sure what the actual outcome would be. I honestly believe my mother never expected to come out of that surgery alive. But her med-surg team was excellent, and they had every confidence that she would make a full recovery.
After the surgery, the neurosurgeon told us that it had wrapped around the sinus vein, and he had had to leave a thin skin of it, as the risk of a fatal hemorrhage was too great for total removal. At the time, I thought "This thing is going to grow back." I was right.
In the meantime, her recovery from the surgery was awful. The tumor had already done a fair amount of damage to her brain from crowding, even compression. She could not swallow, could not talk, and wasn't aware of anything for the first three months. She only began to talk again, with great difficulty, after six months. She never walked again. Because of my studies and work, I could not get back to see her until a year after the surgery. I found a woman who knew exactly what was wrong, who believed she would never be able to regain any semblance of independence, and was ready to die. But her constitution was so strong, she faced the possibility that she could go on like this for another ten to fifteen years, struggling to feed herself, struggling to have a conversation, unable to walk, unable to go home and this last in particular was intolerable to her.
A few months later, a follow-up MRI was done. As I had predicted, the tumor had grown back, to nearly the size of a golfball. Her brain was being compressed. More surgery was out of the question. I was overseas, and what I was told was that she was the only one smiling when that doctor's visit was done. She knew what it meant, and she was more than ready. I saw her shortly after my return, and we said our goodbyes then. Shortly after, she started to have petit mal seizures -- the stare-into-nothingness kind. Over the next five or six months, she steadily lost ground: the ability to control her eliminatory system, the ability to feed herself, to pet the visiting dogs, to hold even a stuffed animal, and then to speak. When I last saw her in late November, she did not know who I was.
I can't grieve for her -- she wasn't living the way she wanted to, wasn't dying in the way she had ever expected, and I got the feeling she was depressed over being trapped in a body that would no longer accommodate her need for independence. I do grieve for our strained relationship, that we never saw eye-to-eye, that we never really understood each other.
The hell of it is, I wasn't totally satisfied with the care and treatments my mother received after the surgery. The first rehab facility, I was told, damn near killed her, and she had to be moved before she even came back to awareness. The second home was much better, but it was still hard at times to find an aide as quickly as desired when she needed changing, or when we wanted to get her ready for a wheelchair ride outside or to go to the doctor or on a picnic. The aides did not always do the things that were ordered by the physical therapists, such as putting her feet in braces: her tendons were tightening up, and pulling her feet into contorted angles. The lighting was often dim, so that even when Mom could still make out words in a book or a magazine, she could not read them easily. Besides, they often did not put her glasses on her face. The blinds often remained shut until a family member came in and opened them so she could see out to the landscaping outside. My mother was always so prideful of her appearance and careful in her grooming, and those things were not tended to in a way that she wanted -- they simply did not have time to do them. They were kind, and they did the best they could, but the truth is that even the best homes are not staffed as they should be.
But the worst of it is the therapies my mother could have had if we had had a more aggressive stem-cell research agenda over the last six years. I have often wondered if her recovery could have been improved if more treatment for the compression injury to her brain from the tumor had been available. If she could have at least recovered her language functions to level where she would have been satisfied, I think this most verbal of women would have been happier, less frustrated, felt less trapped during the time she had left. Given that her tumor could not be removed in total, I think her time was inevitably limited, but at the least, she deserved to have some enjoyment left to her, some measure of recovery more satisfactory to her, so that her last two years of life would not be a psychological burden to her.
I find it unconscionable that this research is limited as it is by the political agenda of the religious right, when the suffering of so many could be alleviated, maybe even entirely eliminated, by the treatments that could be developed from it. I am not a person of faith, I doubt the existence of an actively engaged deity, but I do admit to the existence of an uncreated creator, a moving force that underlies the nature of the universe. And to me, the greatest sin is to not use the brains we were given for the betterment of the human condition, to refuse to seek new cures, new treatments, because the beliefs of a minority overrule the rest of humankind.