On Tuesday I visited my parents. My dad was sleeping while Mom and I had lunch and sat at the kitchen table talking. Over the weekend a nurse friend of mine, whose father died from Alzheimer’s a few years back, told me I should make sure we had everything taken care of and that we had a Do Not Resuscitate order in place.
This caught me by surprise. Initially, I silently rejected her suggestion. But as time passed and I began to absorb her words, I realized this was something we really needed to think about.
I told my mom what my friend had said. Mom said that both she and Dad had living wills with some kind of advanced directives. I’ve not seen the documents so I don’t know what is spelled out. Mom said, “My mother had DNR signs all over her house, but I was told that if we called paramedics, they would try to save her life.”
This is a sticky, uncomfortable issue to even think about, let alone do anything about, even though it is basically what we did with my sister Annie at the end when Hospice came in with their DNR comfort care protocol.
I’ve found some websites that discuss the ethical, legal, and practical implications of a DNR order. I know I need to sort through this all and make sure we aren’t left regretting our actions, or lack of, in the future.
I read around on the internet for a while and learned that you need a DNR order signed by a doctor. A living will is not enough. DNR orders can be gotten for anyone who has a terminal illness. Alzheimer’s is considered a terminal illness. A DNR order is not a do not treat order. Emergency medical services will provide some care. For example, they will suction the airway, administer oxygen, provide pain medication. They will NOT administer chest compressions or insert an artificial airway, among other things. This is in compliance with Ohio’s Do-Not-Resuscitate Law which you can download in pdf form here www.ohiocathconf.org/hopes_fears/dnrfrm.pdf.
The Time story, When does “Do not resuscitate” make sense? shares one doctor’s considerations of the question through a case study —
http://www.time.com/time/health/article/0,8599,1711170,00.html. It’s a thoughtful perspective of the other side of the story.
Shortly after Mom and I had this conversation about DNR, Mom helped Dad get up from his afternoon nap. She helped him into the kitchen with his walker and then transferred him into his wheel chair. It was about 3:00 but Dad hadn’t eaten since breakfast. Mom prepared a plate with a light lunch because dinner was only a couple hours away. I spread strawberry jelly on a croissant for Dad and then cut it into small pieces. He has a difficult time dealing with a whole piece of toast or bread with jelly on it and ends up getting jelly all his fingers. He doesn’t like sticky fingers and as a consequence, he gets jelly all over the table and himself.
Mom and I were trying to help Dad in small ways by moving his drink away from the edge of the table, and getting him napkins—just little things you might do for a child or someone who needs assistance. And my dad started crying.
I should explain that my dad cries often these days. Part of it, I think, is because he’s lost all of his filters. Sometimes Mom discounts it and says that often he cries over nothing and that he even cries at commercials. But whenever I’ve been there, I can always see a reason why he would be crying. One day I leaned down and hugged him before I left and said, “I know you’re doing the best you can, Dad. I’m so proud of you.” And he cried.
On Tuesday, at the lunch table, I asked him, “Why are you crying, Dad?” And he didn’t use words to answer, but pressed his closed fist against his chest.
“Are you crying about yourself?” I asked.
Mom had told me earlier that my sister told her Dad once said he felt bad that he wasn’t able to do anything for anybody else. He had spent his whole life doing things for other people.
“Are you feeling bad that you can’t do some of the things you used to be able to do?” I asked.
He nodded, crying all the while.
“You’ve taken care of other people all your life,” I said. “Now it’s time for us to take care of you. Anyone who lives long enough will eventually need others to help them. It’s nothing to feel bad about. It’s the natural way of life.”
Several months ago, maybe even a year, when Dad was still fairly conversational, he said, “I never thought it would be like this.”
So, yes. Sometimes I wish I knew how much my dad realizes about his condition. And sometimes I’m glad I don’t.