Kathy Kastner is just a regular gal who found herself pondering her own anxieties about dying, wanting to learn more about the process of dying, and seeking more knowledge about her end-of-life options. She knew she wasn’t alone in this thirst for knowledge about what’s often considered a taboo subject, and started BestEndings to serve as a portal of information and resources about end-of-life care.
My mom died 30 years ago.
I hadn’t given much thought about the decisions which were made before her death until I began my own journey of exploration into life’s end which became BestEndings.
I found my mother’s end—which started years before she actually died—creeping into my conscious. As the youngest of four, I had no part in the decision process when it came to her last months. And until a recent conversation with my older sister, I was absolutely positive my mother’s advance directive was, “I want to be kept alive at all costs.”
With this memory of my mother’s wishes, I’ve been weighing the cost of the treatment ladder chosen, and it’s come out wanting. My mom’s last months were gawdawful. I’ve written about it on The Conversation Project and in the Canadian Medical Association Journal.
The beginning of her end came with a mosquito bite while vacationing in Mexico. It took years and trips to tropical disease specialists to finally trace and diagnose Encephalitis, and tie it to that itty bitty bite. All the while, my mother had crippling headaches and irrational moods. Then, 20 years after Mexico, a non-malignant tumor was discovered to be spidering its way through her brain. When that was finally diagnosed, so too began her final descent.
A bit about our mother, Rose. She was a whirlwind of a force to be reckoned with. Creative, innovative, idiosyncratic—various interviews described her as “Wild Rose”. When my father died, she took on the role of Associate Producer with my documentary-producing brother. They went on to win Emmys for films about women with breast cancer, children with leukemia, and ‘lifers’—prisoners with a life sentence.
At 70, she still loved life and would often say, as she no longer exercised vigorously for fear of hurting herself, “It’s a shame my body’s giving out as my brain is getting so honed.”
Around then, my mother had symptoms of a bladder infection. (If you haven’t had one, it’s best portrayed by Tom Hanks in the movie The Green Mile: peeing is hugely painful, and you constantly have to pee.) That’s when I learned about Urinary Tract Infections (UTIs); until then, it was just a bladder infection.
(Side note: Oh to have had a twitter community to turn to for experience and links. I would’ve learned that UTIs are common at that age.)
This UTI, however, wasn’t showing up on test after test. Our mother became more and more panicked and less coherent. Eventually, her behavior became so bizarre we were compelled to take her to a neurologist. A biopsy showed a astrocytoma tumor which, I remember being told was benign but likely inoperable.
It seemed unbelievable our mother’s brain and not her body that was betraying her. By the time the tumor was discovered, my mother’s body was crisscrossed with scars: kidney stones, gall stones, radical mastectomy. This was 30 years ago. Recent medical advancements mean treatments for these issues now are non-invasive; back then, the stones were cut out. On top of these assaults on her body, she had a rare form of hemophilia with internal bleeding which most doctors dismissed. She had survived so many assaults on her body. How could it be her brain was the problem?
The brain tumor explained her incoherence and the symptoms of bladder infection—I mean UTI. There were decisions to be made about treatment options. She couldn’t speak for herself, and my sibs weren’t sure how much she understood.
My understanding was she wanted to be given every chance to stay alive. This is not to say I agreed—I didn’t because it meant agreeing to such terrible indignities: brain surgery and radiation. But I understood when Sis and Bro gave the go-ahead. That’s what our mother wanted.
Ultimately, our mother died of pneumonia, her immune system made vulnerable by treatment.
Thirty years later, my sister helped me understand her wishes differently: Our mother’s direction wasn’t “keep me alive at all costs.” According to my sister it was, “don’t tell me anything, just take care of me.”
It certainly sheds a different light on the long ago struggle to ‘do the right thing’ and to interpret ‘take care of me’. I know my brother felt caring would mean give her every chance possible. My sister now tells me she was conflicted about agreeing to the two procedures.
These days, I think it wouldn’t be possible not to tell anything. Be that as it may, this revelation reinforces my determination to learn for myself what decisions may have to be made, and make it clear how I want to live until I die.
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