Thursday, October 4, 2012

I miss my dad.

He used to call me every day, sometimes several times. Sometimes he'd call to complain, other times he'd call to joke. On the last day we spoke, we had many conversations and somehow I knew it was important to make the time to fully talk to him, even if the boys were destroying the house as we spoke. We talked about many things that day, but mostly Eastern medicine and philosophies. He was interested in trying acupuncture and I told him I'd find him a clinic. We also talked about Buddhism and other interesting religious philosophies. My dad was so smart and so well-read. I loved learning from him.

And then in May the phone calls stopped coming, he was gone. I had lost my father. Technically, he's still alive, if you could call it that. He called me late on May 7th complaining of a terrible headache and feeling ill. He said he believed it was from his new medication, which does carry those side effects. He lived with his wife and two teenage sons, so I thought they were near, but I didn't know they had already gone to bed in other parts of the house.

He had been recovering from open-heart surgery and through his recovery, he fought tooth and nail whenever anyone suggested he return to the hospital through a few complications he suffered. My conscience told me to encourage him to return to the hospital asap, but I didn't follow it for fear that we'd fight about it. Instead, I suggested that he drink some water and try to sleep, and to call me in an hour or two if he couldn't sleep, and at the very least to call me in the morning.

A call came in at about 6:30am. It was my brother, one of the boys living with my father. They found him collapsed on the laundry room floor, apparently after trying to get that glass of water I told him to get. He had been alone that night, after all. Had I known it, I would have either called an ambulance or called a relative to go check on him. I have a hard time letting go of that call, letting go of the guilt I feel for not following my gut. I think we are all carrying out a certain amount of guilt, even though the medical staff caring for him has been assuring us that the outcome would have been the same.

They rushed him to the hospital in an ambulance. He was apparently somewhat coherent, I learned later, enough to ask his wife not to take him to the hospital but to let him stay at home. Dave and I packed up our things and drove with the boys immediately to Utah. By the time I arrived, they had operated on him. They found that he had a subdural hematoma and a clot.

The best I can piece together is that a few days prior to this he may have fallen and caused a slow bleed in the back of his head. Due to medications he was on, the bleeding was made worse and the pressure caused a stroke. He never really woke up. There are times where he seems more alert than others. After a couple of months he was able to open both eyes, but it seems that he cannot see. His pupils appear to be non-reactive.

He is on a ventilator and cannot speak. After a month they put in a tracheostomy tube so that he wouldn't have to have the tube in his mouth. He has been on life support ever since. I've visited as often as I've been able, usually bringing the boys with me and once spending the night on a chair at my dad's bedside. I've read to him a lot. He seems to like Winnie the Pooh stories and poetry by Emily Dickinson.

It's so heartbreaking to see him like this.

"I'm not afraid of dying, it's feeling sick all the time I don't want. I either want to live and feel good, or I'm okay with dying." That's what he told me before his heart surgery. He has had a very incredibly difficult last 5 months. My sister has been amazing through it all, spending every moment she can spare to see him and following up with every option and avenue of treatment, also coaching and helping my dad's wife with all of the paperwork.

Now he's back in the ICU with another infection and a clot in his lungs. My sister warned me to be prepared, that it can be any day now. Or, if more treatment is offered, perhaps invasive, he could be like this for a few more weeks, months, who knows?

It looks like I'll be back in Utah in the near future. It's tough with the boys. If I go without them, they don't sleep and they cry a lot, then we spend a lot of time dealing with residual separation anxiety. Also, if I leave them behind, we need to figure out child care. In this area child care starts at about $15/hour. If I take them, it's not easy to spend the time with my dad, though I did manage to spend a few hours each day with him last month, for nearly two weeks thanks to a wonderful aunt of mine.

I don't want him to die, but he can't live, not in his body anymore.

I miss him so much!

1 comment:

Barb said...

That's so hard Lizzy. I'm sorry. :(