Friday, April 8, 2011

Longing

Before my dad was pronounced terminally ill, I saw him a few times a year for short trips. We spoke on the phone every week. He would call me on Friday mornings while my mother was at her hair appointment. So, I knew that I would miss him, miss those interactions.

Now, I live with him, and he's my constant companion.

So, before, when he died, I was going to miss an hour-long phone conversation, being able to pick up the phone and call him freely, and short visits. Now what the hell am I going to do when he dies?
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Last night, Matt and I talked on the phone for awhile about our options. Basically, we are trying to figure out the most ethical way to opt out of this. I am wondering who exactly we are worry about yelling at us for leaving, besides our parents and ourselves. I could put my mother into a nursing home, but I could not walk away, and now for a variety of reasons, she is coming back home.

If I can't even keep a pain in the ass like her in the nursing home, how am I supposed to put my cognizant father into one? And how do I spend, yes, 3 1/2 months now, taking care of things and then pull out before we're done?

I told Dereck today, "I would tell anyone else in my position that they should put their parents into a home and leave. And yet, oddly enough, I am actually in this position, and I can't walk away."

I struggle a lot with whether taking care of my dad is worth the separation from my family, whether it's worth the time I'm missing with my kids. But how many months did he change my diapers, get up with me in the morning, preparing my bottle while listening to the Beatles singing, "Here Comes The Sun"?

I'm pretty sure it was more than 3 1/2 months.

Sometimes I think the only way to do this is just to embrace it full charge, consequences be damned. I cannot anticipate all of the consequences or ways this could change my life. The world changes if a damn butterfly lands on a tulip, so how can I know what is going to happen?

This morning, my dad told me he was bored. I tried to rally and suggested that we could get out, go to a movie perhaps. It was a fitful day with me constantly wondering when or if he'd want to leave, so I wasn't as productive as I was yesterday. We finally got out of here after the Oxygen Guy came and brought a new thingy to put on his tanks. It makes it so that there isn't a continuous flow of oxygen. Instead, there is only oxygen when you breathe in through your nose. It makes a tank that would ordinarily last about 2 hours last more like ten.

Our nurse, Christian, had told us about a restaurant near Orem, in Lindon, UT, called The Smoked Apple BBQ. It reminded me of Tudor's Deli, for any Kirkatoids reading. We ordered our barbecue-- dad got the chicken, I got the brisket and the seasoned sweet potato fries. Frankly, when I got our food on paper plates with plastic silverware, I was a little disappointed that we hadn't gotten a little more, considering the cost.

That was before I had put any food into my mouth.

Yum. I snagged a menu and I'm going to scan it sometime and torture people with it. On the way to dinner, we stopped at the State Liquor Store. This time, my dad actually came in with me, though he didn't pick anything out. I was supposed to go to the grocery store and get more creamer for my coffee, but I solved that little problem by getting some knock-off Irish cream liqueur. Dynamite.

Now we are back, and it's not dark yet because it's April. But it snowed off and on all day, so it feels and looks like February.

I'm trying not to succomb to the Last Week Blues, the rampant self-pity and self-righteousness that governs my last week here before I go home.

Matt doesn't want to come back. I don't want to come back.

After my last post yesterday, Christian the nurse called back to reassure my dad that they would keep him on Hospice, just based on his weight loss alone, let alone the diagnosis. Christian is hard to get a read on-- he never really changes his tone of voice or inflection whether he's talking about The Smoked Apple, the NCAA, or my dad's cancer. So, he always sounds like this upbeat, friendly, Mormon, Utah boy. He still looks like a missionary. A missionary in scrubs. But mostly, he is trying to remind us that my dad still has cancer, no matter what.

I got on the phone with Christian and said, "He wasn't worry that you were going to kick him out of hospice. He thought that meant he was possibly getting better." 

Christian told me on the phone, in his characteristic Christian way, "It would take a MIRACLE for his prognosis to change at this point."

He did not say it with the tone of someone who believes that miracles like this happen very often.

He went on to tell me that often hospice patients feel better than they are actually doing. Their sense of buoyancy and morale masks symptoms... like sleeping all day. I went into a different room and told Christian that for the past two weeks, I've been charting my dad's sleeping. He sleeps during the day more than he has regular meals: Once in the morning after he gets up, once in the afternoon, then in the evening. And this does nothing to affect his sleep at night, when he has had insomnia up to now, pretty regularly.

Christian said, "The cancer is still there, and eventually it will win. There could be a small number of subtle changes that suddenly just... take over."

When?

I read about melanoma online for awhile this afternoon, and it really seems that the one-year assessment we first got in January was wildly optimistic. Six months was more like it, especially after his scans revealed in January that the cancer had spread much farther and much faster than we had anticipated. But my dad is receiving more than (>) one-on-one care. Instead of eating out with my mom every day, he is getting home-cooked meals. He has the stress of his prognosis and the stress of boredom looming, but on the whole, things are pretty stress free right now. We will see what happens when Pat returns. Honestly, I don't want either of them to go down hill on this move home. But it is not lost on either Matt or I that we are longing to stop doing what we are doing, and yet the fact that we are doing it seems to be the reason why we are STILL doing it.

It's horrible. I want to go home. Apparently, that means that my father will be deceased, though. So, I can't want to go home, because I don't want to accelerate his death. But I also don't want to go to jail for leaving my parents alone here together. What is going to happen when one of them thinks they can drive?

Before Christian called, my father donned his coat and hat and went out to pick up the recycling bin. I watched him leave and said to the empty room, "Okay, I guess we're not dying now."

I went to the window to watch him in case he fell, muttering things under my breath like, "If you fall, I'm going to put you INTO the recycling bin and wheel you back to the house."

He ran into Norton and his wife in the road, so they stood and talked as the evening closed in around them. Something they have done before a million times and never thought about or appreciated.

I am sure for my dad, it felt great. It looked like the most normal thing in the world.


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