Last week my mother told me that if she ever has heart failure, she does NOT want a pacemaker installed. Especially not one with a defibrillator.
Her father, my grandpa, is in ICU right now. His lungs keep filling up with fluid and his kidneys are failing, so his heart has to work ridiculously hard to keep the blood flowing. It's so painful just to breathe that the nurses are keeping him sedated. He has all these medications and fluids and tubes and inserts and oxygen masks and goodness knows what else. If we take him off, he won't die quickly, but will suffer for several weeks, so that's not an option.
When he had his stroke (was it last month?), the only thing that kept him from dying was the defib in his pacemaker, which he had installed after a previous stroke several years ago. It sent a series of shocks to his heart because it detected that the heartrate fell below some predetermined number. My grandfather was being electrocuted from inside his own body, and it kept him alive. Which would have made us happy, I guess, were it not for his near-constant pleas for death for the last year. Even as I sat in the hospital watching him drown, one of the nurses looked up at the monitor and said "Oh, that red light means his pacemaker is doing something."
I am sure he was very happy for the extra five years his pacemaker gave him right. He was able to live long enough to walk again and see both my children and enjoy their laughter. But now, after this stroke, he can't remember who my kids are, nor can he move his leg or remember how to speak English. This most recent stroke was so bad, he has reverted back almost completely to Spanish, his language of comfort. Not an uncommon phenomenon, but seeing as he did not allow his children to learn Spanish when they were little, they now cannot translate for him when he speaks to his white and Asian doctors. Grandma simply refuses to visit him and translate for him anymore (let's just call it a prior grudge), so Grandfather is surrounded by people who can't understand him. Not that it matters much now, seeing as he's unresponsive to anything, even when you shout in his ear.
My mother seems to be in denial about his condition. She tells me that the machines he's on are "just giving him a little help." It is true that taking him off dialysis won't kill him immediately, but she has this idea that he will walk again and come home eventually. Since she's the one who's usually talking to all the doctors, I would think she'd know better than all of us that this stroke was too severe. True, she has seen her father come back from death's door and walk again. But why does she think that will happen every time?
For the last few years, whenever Grandpa told her he wanted to die already, she'd get mad and tell him off. I don't know what arguments she used against him, but it probably involved all those doctors, nurses, and physical therapists who worked so hard to keep him alive. She told me he was just saying he wanted death and not admitting he's really scared to die, but I think he might know more about that than she does. Does she really think he would rather be trapped in his own body than dead and free of this pain?
I don't want to see my parents like this, with bleeding bed sores and catheters and swollen yellow bodies and no clue who I am. I want my mom to live long enough to really know her granddaughters, and for them to know her, but at what point do you say "Sorry Mom, but now you're just existing for the sake of existence"? I wonder, will I ever be faced with carrying out my mother's wishes? Will I have a doctor thrusting a form at me and saying "Do you want your mom to live or die?" and another one saying "What about her quality of life?"