Dad
June 8, 2003

My dad is dying.

However, the worst part of this fact will be watching him get better and then get worse again -- until he dies -- during the span of a few weeks. I wonder how I’ll deal with that; I wonder how Mom and Tom will deal with it. We’ve all talked about the possibility of him passing away, but I think I’m the only person who as imagined these details.

About a week ago Dad fell down -- two or three times in the same night. His health has been failing for quite a while now. In fact, his health has been getting progressively worse for about 20 years. He has outlived all doctor expectations for live span. He has survived several heart attacks, congestive heart failure and a triple-valve bypass, an Aorta replacement, a pacemaker, two open heart surgeries and God knows what else. Through it all, he has done his best to maintain his current status of Practicing Alcoholic -- not an easy feat while taking more heart medicines than I thought existed.

The evening he fell down, Mom eventually convinced him to allow a trip to the hospital where they poked, prodded, drew and administered until he stabilized and had an up-to-date list of problems. Dad is always saying, “It’s never so bad it couldn’t be worse.” I think he needs to stop temping fate:

1. His Mitral valve is bad and needs fixed/replaced. This must be done surgically. His chances of surviving this aren’t great.
2. His Aorta is nearing the end of its 10 year life-span and needs to be replaced. This must also be done surgically, in a separate open-heart operation. His chances of surviving this second procedure are even less.
3. He has several other heart problems which are contributing to his difficulty in breathing. I haven’t asked Mom for those details yet.
4. He has diabetes. The evening he went in, his blood sugar was something like 1600. Maybe it was only 1200, but the blood-sugar machines you buy at Eckerd’s apparently cap out at about 600. It’s rather amazing he didn’t go into a diabetic coma, but he came close.
5. He can’t swallow. This is the worst problem right now. When he tries, food goes into his lungs instead of his stomach. This could cause pneumonia, besides just being a bad place to try to digest one’s food.
6. This difficulty swallowing may have been caused from a stroke. If he didn’t have a pace-maker, they would do an MRI to try and find out. They’ve tried a couple CAT scans instead.

When we got this list, the worst of all was that would need dialysis three times a week. The heart issues weren’t a surprise -- we’ve known about these for years and knew they would be causing problems again. But the dialysis was a death sentence, because Dad will not go to have this done.

And this is where I begin to suffer emotional turmoil. I immediately came over when I heard how bad things were. I took an indefinite amount of time off from work and expected that I would be spending my last week(s) with Dad. The very next day we got great news: No dialysis. His diabetes could be controlled by insulin shots two times a day. And we even got him to agree to this, despite a horrible fear of needles.

All that we needed was for him to do some vocal exercises that will strengthen his throat and enable him to swallow again. Right now, he has a temporary feeding tube through his nose. The alternative would be a permanent feeding tube in his stomach.

Dad will not have the permanent feeding tube.

Dad will not do his vocal exercises.

He is coherent and everyone has taken their turn explaining the situation to him. My speech went like this:

-- Dad? --
-- It is very important that you practice your exercises. --
-- If you don’t want a feeding tube, --
-- And you don’t practice your exercises --
-- You will die. --
-- Do you understand? --

All he has to do is say various words, mostly beginning with ‘c’ and ‘g,’ forcefully. “Go.” “Coke.” “Cake.” “Get.” He can practice also by simply swallowing long and hard. An even better way of practicing is to hold his tongue between the teeth and then swallowing long and hard. And he won’t have any of it.

He changes the subject. He tells me that just “thinking the words” is enough. He tells me he will do it later. He tells me that the doctor’s know what they are doing and the exercises aren’t important. I give the speech again.

So this is what is going to happen. He is getting stronger and stronger with the temporary feeding tube. The blood sugar is in check via the insulin. He is stronger and more cantankerous than I’ve seen him in a year. He is going to be a fighting Irishman once more. (He’s barely Irish, of course -- that’s a different story.)

After he is better, the temporary feeding tube will come out and he will be sent home (or possibly to a rehab center). He will not be able to eat without choking. He will deny the permanent feeding tube. And what actually kills him then is just so many details. He’ll either choke to death trying to eat, get pneumonia from food and water in his lungs, or go into a diabetic coma because he can’t have his insulin without eating.

Probably it will be the coma. I suppose it’s not the worst way to go.

But if he wants to die, I wish he would tell me. I would support him in that. The trouble is he’s just being stubborn. Mom, my brother Tom, and I are trying so hard and he is making us suffer because he refuses to cooperate.

That’s nothing knew. I remember when he went into the hospital for the first time. I was a teenager. I think I went to visit him once, but mostly I just wanted him to die. I even prayed for it! I was so sick of the way he fought and abused my mother. I was sick of him drinking all the time. I was sick of him fighting with my brother and I constantly. None of the abuse was physical, mind you. But the emotional was enough.

Of course, I’m not now the person I was. And he isn’t either -- a decade of these severe problems have taken all the bite out of his bark. In fact, for a little while he was quite decent. He had begun to recover mentally following a couple years of complete lethargy. What happened was that he began to get interested in the computer. He used Mom’s old one for a while before demanding a newer one, and then finally access to the Internet. The mental stimulation brought him back to us, and, until he started drinking again, he was quite nice to be around.

Anyway, I don’t want him to die -- not unless he is in a lot of pain, etc. But I’m not sure what he wants right now. I’m not actually sure what Mom wants. What I’ve not written about his how her life could be ruined if she has to retire early to take care of him all day. We can’t afford a rehab center for longer than 20 days. I’ve offered to stay home with him if needed; we do what we have to do.

If I could see his vitals right now, I’d feel better. I’d feel like was more in control. When he was in the critical care unit, they were right there in the room, on the monitor, for everyone to see. Here in progressive care, only the nurses get it on their computers, outside.

--Dad just woke up and called me over to the bed. “Look at that,” he said. The television was showing a clip from the Colorado River. “I’ll never see that. Do everything you can while you are still young and can appreciate it.” He fell back asleep.

I’m too mad to cry yet. He could get better if he’d quit being such an ass and cooperate. There is hope. I won’t give up in the face of that. I pray for him. I sit all day in this room and wait on him, encourage him. And I fight with Tom and Mom about all the contingencies -- in what scenario should we try to change his mind about a permanent feeding tube? When should we not? How will we coordinate constant care if he needs it?

Tom and I are fighting constantly about unrelated issues. Mom is on a short fuse. I’m trying to be both strong and sensible. Compassionate. I don’t think he is going to make it though. I want to cry and I can’t yet. I want to yell at him or hold his hand all day long; I can do neither.

In fact, I don’t know what to do. I’m going to be there for him and keep trying as much as I can. That’s enough. But it doesn’t make me feel any better.