Until this month when my father died, moments after his ventilator was removed, I would have had not had anything to say about this, except I would have suspected we should leave the ventilator in.
My father was asked a week before he went on it what extraordinary life-sustaining measure he would want if it came to that point, and he said no ventilator. I was there when he said it, and I suggested, “How about if we try it, and then decide?” He agreed.
He was in good shape when he said it because he was having temporarily “new life” from the blood transfusion he was receiving at the moment.
The fact that he could talk at that moment (talking that was very hard to understand with his advanced Parkinson’s) was eerie, because he should been worse, not better than he’d been in months, or years, the day after a hip replacement, which he was is no shape to endure. But this peppy liveliness was apparently only temporary during the transfusion. After we left and it was over, they said he went into delirium, didn’t recognize anyone, was unintelligible, and my peaceable father was agitated and needed to be tied down, with a full-time 24/7 person assigned to him to make sure he didn’t hurt himself or others or pull out his IV or knock things over in his thrashing in the delirium.
What a shock to come in the next day and not even recognize him because of this state. Apparently, delirium is common after an operation in an elderly person of this state (my Dad advanced stage of Parkinson’s made him elderly) and the delirium can go on for 6 months or maybe always. And it sets in 48 hours after the operation, not 24. So i didn’t know I was with him in his only last good moments the day before. The delirium is like the body has had absolutely enough pain and discomfort and can’t take any more.
Shortly after the dietitian upped his tube-feeding fluid for some completely unknown reason, (the tube feed was his constant diet the past 4 months) and he chocked on it and his lungs filled with it. This was absolutely more than he could take and he could not breathe with the “simpler” BI PAP ventilator. Here is a web picture of a woman wearing one of those:
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http://www.airmedltd.com/front_images/patient1.jpgThis model may look comfortable but its very tight on the face and uncomfortable. The machine is making you breathe in and out, and oxygen levels are adjusted. My dad had been on one for most of April and it was very uncomfortable. But he wasn’t getting enough oxygen this way in his blood and would soon die if they did not “intubate” him on a ventilator that helped him breath in and out. They had a stick a tube down his throat to leave in place. When he woke, he needed sedatives to tolerate it. This is a web picture of someone with this in (and I’m very sorry but I just don’t know how to make this smaller, but this is very much what my father’s bedside looked like and all i could find) :
http://baycitywalker.com/wp-content/uploads/2008/04/sspx05882.jpg
So he needed sedatives to tolerate it, so he was sleeping, the machine breathing for him, inhaling for him and exhaling for him in its artificial rhythm, the tube-feeding surgically implanted in his stomach giving him the bag-food, the tons of medications being crushed by the nurse and inserted in his tube feed, and IV for fluids, and catheter and diapers.
When he was awake he’d be in pain, thrashing his head back and forth, making choking expressions, trying to reach up his tied, mitted hands to pull it out. He looked utterly and completely exhausted. I guess he had looked that way for four months.
Before putting him on the ventilator the doctors warned him he probably would not survive extubation (going off it). I have to say, the implication when they told us this was that they did not recommend putting him on it, but to let him die. But they did leave us the choice.
But seeing his pain and discomfort when not sedated was terrible and I knew he did not want to live with a machine doing his breathing. He was not going to get better but worse, and suffer more incredible discomforts while machines ckept him alive beyond what his body could do. My mother did not want him suffering this way. She was deeply grieved he wasn’t going to get better, but sick like me over his suffering. When he was between sedations, and thrashing and choking and trying to pull out his ventilator, I would tell him that that he needed to stay still, that he needed that tube in his throat to breathe, that he just needed to keep it in a little longer because my youngest brother was flying int to see him in three days. He would calm down, and they’d sedate him.
It was the longest three days ever. I just wanted him to stop suffering. Somehow my oldest brother convinced me (as he convinced himself) that he would survive if “extubated” from that ventilator and immediately put him the other ventilator in the first illustration above. So somehow I allowed that hope to come in, even though it was not reasonable, but I was so tired. So it was a shock when my other brothers came and they removed the tube and he only survived moments.
So that’s a real ventilator story. Its not natural to have a machine breathe for you when you cannot breathe on your own. It really felt like extreme measures. I did not have time to study what is an extreme measure before we were thrown into this situation, and in it there was no time for learning. We just had to make decisions as they came. I only wish I had been prepared fro him to die when they removed the tube. All I was thinking was I was so glad he did not have to choke any more.
Only I wish I had known he’d die immediately. I wish we had more moments. There were things we could communicate, things I wanted to, with eye-blinking, even though the blinks came slowly. I really was shocked and felt unprepred.
