By Susan Oberg
Mom and I were the best of friends. I knew everything about her. Well, at least, I thought I did. One week before she had a massive stroke, we discussed her final wishes, and she told me she wanted “no heroic measures.” Never wanting to discuss or think about losing Mom, I told her that I understood. I was the youngest of three children so I never thought the decision would be mine to make. No one ever thinks that they will have to decide if their mom lives or dies. Suddenly I was faced with that gut-wrenching decision. Was my Mom going to fight for her life at a transitional care unit or was I going to let the woman I loved so much slip away? My Dad wanted to let her die. However, the doctor said she could recover and come back to us. We had never discussed anything to this degree. What measures do you take to save a woman who is 88 years old? This question becomes completely different when the woman is your mother.
All I wanted was to go back in time one week. What I realized is everyone has a different definition of what “no heroic measures” means. I needed more detail, but because I had not asked questions, I would have to make the final decision if Mom lived or died. We chose to fight.
Peace of Mind
Our journey lasted three years after her stroke. Every day I questioned myself. Had I done the right thing? One night after Mom had passed away, I went through Dad’s old filing cabinet. The very last folder, tucked in the back, contained the will and trust. This was nothing new. I had seen it many times. But hidden behind it was a document that Mom had filled out and had it notarized. I recognized her writing. I pulled the papers from the dusty file. It was called Five Wishes. I had never seen this before. I opened the document and began to read it. Some of it contained the wishes I already knew. Then I turned to the page that was talking about the care she wanted if she were unable to speak for herself. I froze for a few minutes. I was terrified that this would confirm that I had not followed her last wishes. Then, I began to read her writing. It said that in case of a debilitating stroke or disease, she wanted no heroic measures. But then it said to follow the suggestion of the doctor. If the doctor said that she could get better and that there was hope, she wanted life-saving measures. There it was. I had done the right thing.
Imagine how different those three years would have been if I had known about her Five Wishes. I take comfort that my children do know. I want them to continue after I am gone with as little turmoil as possible. My mom was my friend and extremely generous all through her life. But her most important gift to me was that blue Five Wishes booklet!
Now, years later I have written a book in hopes of getting people to discuss the end of life and what it looks like for them. No Heroic Measures is a true story about dealing with aging parents, grief and loss. It speaks to the issues of being a caregiver and navigating healthcare and long-term care. It is time to speak about the end of life. This has been a taboo subject for too long. Looking back if I could suggest anything to you, it would be to sit down with family and give them the gift of Five Wishes.
Ms. Oberg is the Arizona-based author of No Heroic Measures. Prior to her retirement she was the Executive Director of SOS for Youth, a non-profit youth theatrical troupe that traveled the U.S. and performed sketches dealing with social issues of the day. The first half of No Heroic Measures is Ms. Oberg’s personal caregiving story. The second half is comprised of 17 sketches that can be performed live. Each deals with an aspect of aging, end of life, death and grief.