For the first time in my life, my mother and I had found the one subject we couldn’t talk about.
We weren’t alone. A 2008 national survey found that Americans were more likely to talk to their kids about sex and drugs than to have a conversation with a seriously ill parent about their end of life wishes.
My mom and I were very close and after my dad died, I was the one with her when she was diagnosed with cancer. I drove her to chemotherapy. We sat together as the doctors explained the shadow on the X-ray and when they told us that the cancer was spreading. The news was never good. But except for the initial conversation with a doctor who briefly intimated the probabilities, no one had the end-of-life discussion with my mom. Including me.
I never asked how she felt about dying. There were no talks about regrets or if she was afraid. We didn’t discuss whether she wanted to continue the debilitating treatments or if she would want life support if there was no longer any hope of survival. For the next six months our lives were held hostage by this disease and yet we never really talked about what was happening. I was young and couldn’t face it. Maybe she saw her silence as a way to protect me.
But since we never really acknowledged that she was dying, we could hardly talk about the end of life. And apparently, neither could her doctors. They seemed uncomfortable once there was nothing left to treat. It wasn’t until her last days, when the pain could no longer be hidden or born, that the doctor asked me, not my mother, where I thought she would be most comfortable – at home or back in the hospital.
I was scared, sad and very angry. How would I know where she wanted to be? Why was he asking me? And why hadn’t any of us asked her? The only thing I was certain of was that I didn’t want any of this to be true. But it was.
And in the end, after an uncomfortable conversation with her about options and with little time left to think it over, she chose the hospital in resignation. Living only a few more days, she slipped into a coma. A “Do Not Resuscitate” order was signed, and I was left to sit by her bed, never really sure if this was what she would have wanted.
That was over twenty five years ago. Back then, I didn’t know it could be done any other way. Today, I volunteer with a wonderful hospice organization and understand how different care can be when a cure is no longer possible. My mom knew that she was loved and my pain of losing her would not have been lessened. But I missed the chance to tell her what a wonderful mother she had been and how much I was going to miss her. And she missed the chance to make the decisions that were really hers to make.
I wonder why it is so hard to talk about something that will happen to every one of us. Dying is not an option. If it were, most of us would probably pass. It can make us so uncomfortable to think about, either for ourselves or those we love, that it’s hard to know where to start.
But there is help. April 16th was National Healthcare Decisions Day, and there are many resources available to help all of us begin the conversation about end of life planning.
Each of us has the right to make our own health care decisions. But it is also our responsibility. The best time to do this is before it’s needed. The gift to ourselves is that we’ll be able to make our own choices. The gift we leave to our families and friends is that they won’t be left to second guess what those choices would have been.
Debbie Reslock ( dreslock@q.com) of Evergreen is a partner in Reslock and Sullivan, an architectural and planning company.
Website resources:
National HealthCare Decisions Day
Aging with Dignity
Colorado Center for Hospice and Palliative Care
Caring Connections
Colorado Department of Public Health
AARP
American Bar Association
