Dying with Dignity
Posted by Marlene Delaney
The concept of dying with dignity is frequently in the news. The latest has been Brittany Maynard's wish to end her life. Brittany had the same brain tumor as my husband, Tom – a glioblastoma.
I understand Brittany's decision. The end game with this type of cancer is not pretty. Our family, however, took a different approach.
Tom's tumor presented itself in his spine. In the beginning, Tom had difficulty walking but the tumor quickly progressed, leaving him paralyzed in a matter of months. If you knew Tom, being immobile was not his style. He was that dad who played catch with our son and daughter and all the neighborhood kids. In the nicer months of the year, he had a regular, weekly tee time at a local golf course and tried to sneak in a couple of extra rounds of golf every week, too. He traveled with his job and we took some exceptional vacations. After living and caring for someone who is paralyzed, I have incredible empathy towards people who are confined to wheelchairs – it is not easy. But it would have been impossible if one of our neighbors hadn't made coming over every day to help me with Tom part of his daily routine.
The chemotherapy and radiation were devastating. Tom would often lie in bed all day just trying to get a few moments of sleep. The reason that was difficult was because of nausea, nerve pain, headaches, general discomfort – need I go on? Since we had made the choice to have Tom's treatments at the University of Chicago Medical Center, every treatment and doctor's appointment required an 80 mile round trip. That wasn't too bad when Tom was still somewhat mobile but as his paralysis increased, it meant that the trips required a strong friend to come with us. Fortunately, there were two strong friends in Tom's life. One of them came with us on every trip. Even though Tom had lost significant weight during his illness, he still was too large for me to maneuver in and out of the car, wheelchair, etc.
But perhaps the most difficult part of having terminal cancer is knowing that your time on the Earth is ending – and being too sick to enjoy it. From news articles, I understand this was part of the motivation behind Brittany's decision. None of us want to be so ill that even sleeping is hard work.
But the end of Tom's life took a different path. His medical treatment ultimately had run the course of acceptable options – there was nothing left to try. But his oncologist did not want to give up and neither did Tom. Having two teenage children gave Tom the incentive to try an untested course of treatment. While we waited for insurance to approve the approach, Tom was not undergoing chemo or radiation. And for the first time in months, he felt okay. He wanted visitors. He could sleep and eat. Fortunately this was at Christmas, so we had a wonderful last holiday with him. I hope Brittany's family has those types of pleasant memories, too.
In the final weeks of Tom's life, we were fortunate enough to spend them at Midwest CareCenter. The staff treated us all with dignity and compassion. I've shared in other posts here that, from the moment we arrived, it felt like we were entering a magical place. A place where everyone was gentle and caring. A place where they not only took care of Tom, but took care of me and my teenage children.
Although I had hoped that Tom would have a quick death, since he was only 48 years old, it took almost two weeks. But those two weeks changed my life and – thanks to the loving touch of the doctors, nurses, therapists, chaplains, and volunteers – I learned that death shouldn't be feared.
I was so happy that Tom could die with dignity. Isn't that all we want for our loved ones?