Friday, July 15, 2011
Making decisions for someone else can be difficult. When it’s someone you love the decisions can be excruciating.
I remember standing in the Emergency Room at Dave’s bedside two days before Thanksgiving in 1998 after he had his stroke. The neurologist was there having reviewed the tests and exam. Dave was conscious and responsive. His right side was damaged. His leg wouldn’t move. Less than four hours earlier he had experienced a rare spinal stroke.
It was earlier that night that Dave woke me up saying “call 911.” We were living in a small rental house just blocks from our present home as it was being built. Leah was in Middle School, 6th grade. We were transitioning out of a rural area into a neighborhood. Bikes, friends, dogs, lemonade stands. Call 911, he said. I did as I was trying to sort out what was happening to him. Questions were relayed from dispatch to me, to Dave, and back again. “An ambulance is on the way,” I heard.
Go wake up Leah. She has to go with me. We lived tucked into an area with only one street in, behind some developments and under the tall evergreen trees. Where is that ambulance? I could hear it but couldn’t see it. I ran outside trying to figure how to flag it down to me. I needed to get dressed. I needed to get Leah. How’s Dave? Those were long minutes. We followed in the car.
By the time the neurologist reached Dave, only a few hours since the stroke had passed. Now a big decision. A drug called TPA could be administered. It had to be given within four hours of the stroke. We had only minutes left within that time frame. How fortunate Dave was to be awake at the time of the event to know exactly when the stroke occurred. (I’m sure he would have been much worse if he been sleeping.) Our quick response meant giving this drug was possible. The downside was that once TPA was given, no other stroke drugs could be given within 24 hours. The other option was to take the more traditional treatment of Heparin.
Dave was awake. He chose to take the TPA. I remember wondering what I would do. I couldn’t decide. Follow standard medicine guidelines? Take a chance on a new protocol? More importantly, what would I decide for him? The TPA was injected. We waited. Within a few minutes, a leg that couldn’t move before was in complete control by its owner. Dave had a miraculous reversal. What a relief. We took him down the hall and admitted him for observation. I had to go back home to take care of Leah. He was safe and doing well.
By the time I returned to the hospital, the damaging symptoms were back. Dave had another small stroke in the same location after the TPA. Nothing could be given for 24 hours. This had a lasting consequence. Had he had his stroke one day earlier, a trial protocol would have allowed both TPA and Heparin, very likely to have mitigated the second stroke‘s effects. But that couldn’t happen. The neurologist’s decisions were tied by laws of medicine. After weeks of rehab and physical therapy we were able to move into our new two story home. Could he get up the stairs? This is when a cane became part of Dave’s daily life.
* * * * *
He’s losing weight. He’s disoriented. He’s sleeping all the time. He’s doesn’t like to be touched much. He is irritable. He is on pain meds all the time. He doesn’t hear well. His eyes are cloudy. His breathing is labored.
Lucky dog is not himself any longer. I have cleaned up poop in the house regularly in the past few weeks. Now he has peed on the carpet – first time EVER. He goes outside and comes back in all day long, sometimes within minutes of the last trip. I don’t think he always knows where he is. He doesn’t bounce up and run around when people arrive, his joyful greeting that someone had come to play with him. He is underfoot, dripping water all over the floor. I trip over him or slip on the water, often. I mop up constantly. The cork pantry floor swells with water damage. I have a sling to help him stand when he falls. A new memory foam rug awaits at the bottom of the stairs to soften his falls and give him traction to go up. We haven’t played catch with his over-loved and over-licked toys in many months.
Yet, he wants to be near us. I try to tell him to stay upstairs when I make a quick run down them. But he follows, half-sliding half-stepping with stiff legs down the stairs, landing on at the bottom rug, then clip-clomping with long nails on the wood floor. He is never quite sure why he’s there, but he is.
What is quality of life? Who gets to decide?
I find it nothing short of hypocritical that few think twice about the decision for us to “put him down” but talking about dying or choices for humans is hush-hush.
No doubt I am very sensitive to the fact that there are two lives in this household facing the end as we know it. I can’t help but make the parallel in symptoms. Fortunately, Dave is awake and making his own decisions. We need to make the decision for Lucky. And mostly it is I need to make the decision because I am the one in closest touch and care. I am Lucky’s caregiver, too. I am responsible for his quality of life.
All of my friends are compassionate and understanding when I talk about saying goodbye to Lucky. Most have acknowledged that I have choice to take him to the vet, and not bring him home. I hear “you will know” when the time is right. Lucky will tell me. Lucky will know, too. I keep waiting. I don’t think Lucky will tell me. I want someone else to decide.
I am driven by more of what I don’t want than do. I don’t want him to break a leg, wallow in pain or be left alone because he can’t get upstairs. I don’t want him unable to control his bowels and other functions. I don’t want him to lick his foreleg so much there is an infection. I don’t want him to struggle to breathe. I don’t want him to lose his dignity. I don’t want to decide based on my convenience.
Soon we will have to say goodbye to Lucky. I’m not sure when. But I have to prepare. As the family comes to visit in the coming days, I will have to prepare them, too. I have an excruciating decision to make, because Lucky is a member of our family, and I love him.