It’s one thing for this hospice worker to go about his day in familiar territory aware of the curves, signals and speed traps that go into driving care for hospice patients. It’s quite another when the person being cared for is his parent.
One week ago, my Dad, who is 83, on dialysis and battling leukemia and lymphoma, was rushed to the emergency room with severe chest pain and shortness of breath. This was an unwanted twist in his disease progression. As the person responsible for his heath care decisions, Dad and I spoke to clarify his wishes should the outcome be a negative one. While Dad does have an advanced directive and wishes not to be resuscitated, we had to sit and talk about the outcomes of this unplanned bump in the road. I sat across from my dad and looked him in the eye. “Dad, I have to ask you a serious question,” I said. He looked up at me with knowing anticipation of the question. “What do you want to do if something goes south today?” I asked.
“I don’t want to go out like this,” he said. “I want to fight it; I’m not ready for this to finish me.” That was the green light for the medical staff to implement their plan of care with provision for resuscitation should it become necessary. A cardiac catheterization and valve replacement surgery were necessary.
Dad went on to have an unsuccessful cardiac catheterization due to dangerously low blood pressure. He was then transported to another, better-equipped hospital complex where a more extensive and successful procedure was performed. He returned home after a week with two unblocked arteries and renewed energy, all of us mindful of the fragility of life.
The reason I write this entry is to indicate that this was not what I expected to transpire. As I was driving to the hospital to meet my Dad in the ER I was running the gloom and doom scenarios in my head. “This is the end, he can’t survive this, he wouldn’t want to survive it,” and “Which funeral director do I call, how do I get the word to the family, how do I tell my mother who is in early stages of dementia?” This has been a 6-year struggle with two terrible diseases; my Dad is tired, my Mom is tired; G-d knows I’m tired. “Why can’t this just be over?”
I wonder if any of my readers have ever had such thoughts? Feeling uncertain as to the type of care and desired outcomes for our loved ones. Make no mistake; caring for elderly and ill parents is a difficult road. The momentum of caregiving often moves us in directions we wish could be otherwise. Sometimes it takes us to an unexpected place.
Sitting in the waiting room we received a visit from our friend and parish nurse, Sally. She has been a great support to our family throughout Dad’s illness. She could see the strain on our faces and quickly read the situation. “Were we making the correct decisions on behalf of my Dad?” Sally told us that we were giving my father a gift. How so, I asked? Because you were willing to listen to him and respect his wishes, she told us. This is the greatest gift you can give him. So much is lost as one approaches end of life—control, mobility, socialization, intimacy, the ability to work and contribute to one’s family. Arching over all of these domains is decision-making, being in the drivers seat. Without a true advocate so many people facing life-limiting and life threatening illness stand powerless to make decisions that reflect their wishes and their values.
So I’ll close by saying that in the midst of a difficult situation came a gift of profound meaning for my Dad and his life. Be sure to listen, be open and caring and embrace your loved one with the respect and dignity you would desire in your life.
It can be hard to see the positives in the midst of these difficult kinds of situations. Recently, when my father was in the hospital, it helped to take note of it as an opportunity to deal with the good and generous people who work in the medical community. Thanks for reminding us to look for the good things.— CSC / June 4th, 2010 at 1:18 pm
Thanks, CSC. Attitude is everything and your viewing the medical community as being generous people promotes the kind of gifts we hope to see every day.— Vince Corso, M.Div, LCSW, CT / June 7th, 2010 at 3:27 pm
As the only healthcare professional in a very large immediate and exteneded family I am often called upon for insight in to what to do, etc. It is not an easy place to be but always keeping perspective is very important. The hardest decision I ever had to make was 18 years ago when my father had suffered repeated strokes at 86 years of age and ‘they’ wanted to put a feeding tube down to maintain him. The pain and uncomfortable symptoms he was having helped me support my mother in making that decision. It is never easy but I knew what he did and did not want. Thank you for keeping it in persepctive and listening…another very importanat thing.— Sandra / June 9th, 2010 at 3:22 pm