My mother passed away last week after almost 4 years of dealing with ovarian cancer. She went through surgery, treatments, scans, medications and side effects; more than anyone should have to go through. I am still grieving, and I have yet to fully absorb the extent of the vacancy she leaves in my life. But one thing has stood out for me and I wanted to share.
When people are dying we treat them differently.
In January, my mom got the flu and ended up in the hospital. Once she was rehydrated and her pain under control, she was still unable to eat anything and yet there was no medical reason why. Everyone was trying to coax her to eat, offering a variety of options. She would try to sip or take a small spoonful, but it just wouldn’t go down. She was unable to articulate what was happening for her, but she would then apologize for ‘failing’ to eat and would promise to try harder. It was heartbreaking.
After watching this for a few days, it dawned on me; maybe she doesn’t want to eat. Maybe this is her unconscious way of saying enough is enough. I suggested to my sister that perhaps we should give her the option; when or if she wants to eat, she can let us know, but that we would stop trying to push food into her. Our mom had not spoken a lot in the last few days, but she was definitely aware and coherent of what was going on around her, so when presented with this option, her relief was undeniable.
It became obvious that she was not going to be able to go home if she was not eating, nor was she going to ‘get better’. Fortunately, she was able to go a to a beautiful palliative care hospice nearby.
While at the hospice, I had a lot of time to observe their approach to care, which was very different from other medical care I’ve seen. Basically, I felt that patients were not told what to do, but rather they were given options. If they wanted to take a bath, great. If not, no problem. Want to eat, perfect. Not hungry, ok too. The other big shift was that the doctor would sit with my mom and hold her hand as they talked. She would ask about how she was feeling, not just physically, but emotionally as well, and they would patiently wait as she searched for words to express herself.
Now, I know it is easy to think that this is all well and good to do this when people are dying, but while we are living there are things we all have to do that we won’t like, and we don’t have the time to hold hands with everyone.
But aren’t we all dying? Some of us know it will be sooner than later, but we are all going to die and we have very little control as to when or how.
Of course, I realize that there are things we need to do even if we don’t want to. But there are so many things we do without questioning. We do them because it is expected, or it’s what other people are doing, or because it has been asked, or because someone said we should. By giving away our power to make a choice, we undoubtingly feel resentment and frustration. But if we look at all those things as choices, we can feel empowered. Just the act of making the choice to do something feels good, even if the outcome is the same.
For example, as my mom’s condition changed, her options were presented to her, with the likely consequences, she could ask questions and then she was able to make a decision for herself. Of course, sometimes we don’t like any of the choices and I’m sure not getting cancer would have been first on her list, but since that wasn’t an option, she felt empowered to make a choice amongst the possibilities. I know it was easier for me to accept the outcome knowing my mom had been part of the decision process and it was not just happening to her, as I had felt during the earlier stages of her illness. I also feel that part of the peacefulness she expressed in the last few days were in no small part because of this approach.
So what about while we are living? Can we give each other more opportunities to make choices? To feel empowered ourselves? To sit with each other and check in? If my time at the hospice is any indication, the effort that this approach requires is nothing compared to the increased quality of life, whether we are near the end of our life or not.
*This is me and my mom, October 2016. Photo by Robyn Andrew, Unposed.com