Wednesday, February 16, 2011

End of Life Care

No matter how long life is or how long it seems, there will still never be enough time.

I can't count the number of times I've chastised a friend, telling them that, for most of us, life is so much longer than we give it credit for when we are 24 (their current age). Not only will you meet so many people you can't even imagine now but you'll be offered so many opportunities that you can't even imagine at this point, if you just leave yourself open to it. On the other hand, you can never imagine how long 50 years can seem until you're brushing your teeth next to someone you've grown to hate and loath over those fifty years (hell, even 50 minutes.) And 50 years can't go by quicker than when it's the right person, a person who improves with age in parallel to you. And despite all that is happening now, I know that life is long. So very long. Which means that we have to live with the hurt and suffering just that much longer.

All this medical stuff with my uncle never fully makes sense. I thought that when he came back home this last time, mid-January, I thought that my uncle was classified as "hospice," which was why we were getting all this care. No. See, he was classified as "home health care," on a schedule to show us all how to take care of him, check up on him, etc, but see there was this drug, called a targeted agent, which we talked the insurance into giving to him as a last ditch effort, but my uncle was on the fence about taking it at all, as no one could say that it would actually improve his quality or quantity of life. My uncle kept saying that he'd think about starting it once he felt a bit better but he never really felt better. But if you are on an active treatment regiment, you aren't on hospice. No one really explained this to us until probably Friday, less than a week ago. So we were all thinking about this, what we wanted to do, etc.

But the time for thinking ran out. Yesterday, my uncle started having some really intense pain. The immediate release drugs didn't touch it. My mother was 2.5 hours away, but just about to leave Suburb of Slightly Smaller Midwestern City. My uncle's boyfriend was scrambling to get all the info the hospital might need, to call the right people, to "Where the hell is that ambulance!" (So playing the slightly less dramatic version of my grandmother.) I was just holding my uncle's hand, trying to calm him down, get him to breathe, find out exactly where the pain was. Once at the ER, the doctors, including one we have a previous relationship with, we got the news that you don't really want to hear. My uncle was doing poorly. While my uncle's original living wills, DNRs, etc, said that he did not want extraordinary measures, people can and do change their mind when faced with a very caring but blunt doctor saying, "This is the end. I can do all these things, use the paddles, crack your chest (which will probably completely obliterate your ribs because of the cancer), put in a trach, all that stuff to keep you alive, but you won't be any better than you are right now and we won't be able to treat the cancer at all. OR we can treat your pain, either at home or at a home-y hospice center, though you will probably pass more quickly and be more aware of both the good and the bad of your situation." Though I have a whole other discussion about how much consent you can really get from someone in so much pain, their body wracked with disease, and on a huge amount of narcotics, I am glad that my uncle is making this decision for himself, though with his family, doctors, and social workers. He did not chose the first option. Right now, he is at the hospital, being stabilized, and deciding whether he wants to do hospice at home or at a hospice center.

But there really isn't enough time. One social worker, weeks ago, said that he knew people on hospice for a year or more, that they took trips. Hospice generally covers people who the doctors think might not last for more than 6 months, but that's just an average and people go one way or another. The way things had been going around my uncle's house, I thought we'd have time. We, my mom, my uncle, my uncle's boyfriend, and I, were just getting a rhythm down, moving stuff in so we were comfortable too. But it looks like we don't have that kind of time.

Doctors don't always come out and tell you things. They sneak things into other sentences. The Dr We Like said to my uncle "I wish I could keep you hear in the hospital and watch over you myself but there are more critical patients that could use this bed for the 7-10 days you'd be here."

10 Days. It's never enough.

Friday, February 11, 2011

Forgiving God

[Warning: Possibly offensive to religious, especially Christian, people. I'm not trying to hurt or offend you, just work out my own issues. If your religion is valid for you, helps you, works for you, and doesn't hurt or oppress others, then I sincerely think that is great for you.]

Keep your heart above your head and your eyes wide open
So this world can't find a way to leave you cold
You're not the only ship out on this ocean
Save your strength for things that you can change
Forgive the one's you can't.
You gotta let it go. - "Let It Go," Zac Brown Band

So I was listening to this song on my way out to my uncle's Monday night when I had a sort of epiphany. Or at least it felt like one at the time. If I would have pulled the car over and made my thumbs move fast and furious, maybe I could have gotten across exactly what kind of weight I felt lifted off my shoulders at the time, the new kind of light it shown on me at the time, but I didn't and the farther I get away from the incident, the less it looks at all impressive. But I'm a writer and I don't have many people to talk to about this, so I'm going to try to make some sense of it here.

First off, I should probably give a bit of background, for those who don't know:

A. A quick refresher on God/s, religion, and me: Christian parochial school taught me to question things, just not it, plus I felt my sexuality was bumping heads with Paul's lack thereof. Also, I could never find enough to back up my faith in a higher being. So atheism and exploration it was. Since my late teens, I've been drawn to the ideas behind Buddhism as a life and moral philosophy and meditation as a practice, while I'm about as "practicing" as most people born Catholic are practicing Catholicism right now.

On the other hand, I did grow up in a Christian culture and household and those ways, assumptions, and quick-go-to's/ easy answers are still with me. ("God never gives you more than you can handle." "That dead person is in a better place now." etc)

B. My uncle's health is... if not worse than when I last wrote about it, it is significantly different than it was until a few months ago. Within less than a month, he's lost the ability to use his legs or feel normally below the nipple line. We've been told that further spinal surgery is out of the question, by a neurosurgeon with a bedside manner that House would appreciate. Officially, we're kinda in a limbo. I just found out today that he's not classified as hospice or palliative care because my uncle is still on the fence about trying this last ditch 'targeted agent chemo drug', because he's worried it'll just make him sicker without giving him any better quality or quantity of life. Right now, he is at home, being taken care of by my mother and his boyfriend, with a bit of help from me, and a guiding hand, for a few more weeks, from a local home health care provider, though, unless his doctors transfer him to hospice status, the time we will have their help is quickly running out. Mostly, right now, he is confined to an adjustable bed in the living room, which doesn't allow for much privacy, though we are trying to get him up in the wheelchair we have right now, so he can sit up, and we'll get him outside in the wheelchair once the weather isn't too bad. We're talking about converting one of his vehicles so we can drive him around in the wheelchair and we're also talking about getting him a motorized wheelchair that will compensate for his balance issues. But much of our time is taken up with everyday care and, even if we had all the tech in the world, my uncle only has so much energy, so he couldn't be go-go-go all the time. This is a downhill climb and we're mostly just happy when he's not in a great amount of pain, when he's well fed, and when he's clean and can just relax a bit. He requires a great deal of care. One person always has to be here with him, two is preferred for help in moving him, and three is one extra, which can always be useful.

So we're caught up.

Last Sunday and Monday, a part of me wasn't sure I could go back to BFE [short-hand, slang for middle of nowhere, what I'll be calling where my uncle lives very often] from Suburb of Slightly Smaller Midwest City. I really shouldn't have gone on the trip out there anyway. My goals were to pick up my extra prescriptions and to see TyRoy, but Mom could have grabbed my drugs on her trip before mine and first snow and then illness prevented me from seeing TyRoy, so I spent most of the week in a haze of depression and weird sleep patterns and food deprivation. Never shoulda gone in the first place. But that's a different story, I guess.

So I wasn't sure I could go back. Mentally, emotionally. In the beginning, my uncle's health situation just made me mad, not in the "why the fuck is he sick? This is so inconvenient way," but in "This is so fucking unfair. My uncle deserves better. He deserves a long and happy and healthy life. And how dare you people out there be happy and healthy and smiley when my uncle is dying!" Now, sadness has been added to that mix of emotions. But still mostly mad. Like "I wanna beat the living hell out of someone" mad. So I get mad and/or sad, cry, pull myself together and say, "Ok, what can I do about how I feel or about any of this situation that I'm not already doing?" Annnnnddd, I get nothing but more angry. And I'm working on my own version of a volume 2 for Everclear's "Why I Don't Believe In God." Maybe that should be "why I don't believe in God but he's the only one I can be mad at so I'm feeling kinda helpless and fucked." That helplessness just reinforces itself, makes me feel like I'm not only helpless in the larger situation, but helpless in small ways, like I can't actually be useful out here in BFE in my uncle's everyday care, when I know that isn't true, when I know that the opposite is in fact true and that, without me, my mother and my uncle's boyfriend don't get a break unless I'm here to help.

Also, I tend to curl up into the fetal position or turn to martyrdom when faced with immovable objects and complete helplessness. If I do believe in God, that He's omnipotent and the cause of everything, and I believe that He is the cause of this, then I feel pretty goddamn helpless in the face of that. And I feel pretty goddamn mad that anyone would do this to anyone else, much less do this to me and my family.

Then, after I had forced myself into the car and into starting the drive, I was listening to that Zac Brown Band song, so full of 12-step-isms that I am thoroughly familiar with and something hit me about forgiveness.

Several years ago, I watched an Oprah episode where she described forgiveness as something you give to someone else, not because what they did was ok and not because they deserve it, but because you deserve to be out from under the weight of their wrong. Like I can only hope that someday my first real boyfriend, ex-T, can forgive me for cheating on him, not because I deserve it or because I'm sorry, though I am the latter though probably not the former, but because I don't want him to live his whole life bogged down by what I did to him, being wronged twice, carrying that second one throughout your whole life. And someday I hope I can forgive my biological father for abandoning me, not because he's sorry (probably isn't), not because he deserves to be forgiven (probably doesn't), but just because I don't want to carry the weight of what HE did wrong to me. So you forgive for yourself, so you are less burdened.

So, if God exists and he did all this shit, why doesn't he deserve forgiveness too? I'm not helpless against him. He fucked me over. And He should be happy to have my forgiveness.

When I tried to share this with Sir, he brought up "forgiveness=acceptance." I see where he was trying to go, but I'm not sure it's where I was going. I accept what is going on with my uncle. It's a bit hard not to, when you're right there seeing it everyday, when just before his 40th birthday your once vital intelligent uncle can't balance his chest well enough to sit on the edge of a bed much less go drive one of the cars he loves. So I accept, as much as anyone can, and I try not to delude myself about any of his conditions.

No, forgiveness is about having something to push back against. Someone who did something wrong and needs me. Forgiveness is about having power over something.