Thursday, October 17, 2013

a significant change of status

Hang around here long enough, and you'll finally get some content, right?  LOL

I know there have been a lot of fluffy "filler-ish" type posts here lately, and I'm sorry for that, but behind the scenes, I am really busy working through A TON of stuff.  Some of it's logistical and has had me a in a time-sucking vacuum, but a lot of it has been emotional, and I have been left feeling quite drained.

Grab a Cup o' Joe. It's a long one.
A little rambly, too. Sorry.

For those who are new here, I am a volunteer with an organization that matches you up to do one-on-one visits with people in convalescent hospitals that don't get visitors.  I started volunteering when I was 23 or 24 (?) and I'm now 46 (gah. nearly half my life!!). Over the years, most of my matches have been short term (the longest was 1 year).  This latest match has been different, though. I have been visiting James for 9 years.  You can pick up the tone of our relationship in posts like this one, or this one, or this one (that last one is oddly related to this post, actually)....and there are probably a few other posts I have made over the years that I cant put my finger on right now. I swear that somewhere I have posted a photo of James, but I just can't spot it.  Feel free to have yourself a little scavenger hunt ;-)  Sort of a Where's Waldo, I guess.

Here's the poop.

Last Thursday, James went back into the "hospital-hospital" (as we call it, to differentiate from the "convalescent hospital", where he is a permanent resident).  I never got a call when he went into the ICU because I am not family. I had to find out from James himself once he was able to use the phone.  He called to let me know as soon as he got out of the ICU and was moved to a regular room.  He told me he was sent to the hospital, "because he was having trouble breathing due to all the fluid in his tummy, and they drained 5 liters off, and it wasn't all gone, but he was feeling much better."

That call with James took place Friday evening. I called him Saturday and he sounded like he was feeling better and in good spirits. Of course, I can't ask the nurse for a medical update. Well, I can ask. But they wont tell me anything. Because I am not family.

Well, it was Sunday afternoon when I got a phone call from his doctor saying that even though I wasn't family or legally listed as able to speak for him, James had asked the doctor to call me and explain what was happening because he didn't understand, and he knew that I would help him make sense of it all.

Much of what I was heard was new to me. I was told by the doctor that James has End Stage Congestive Heart Failure, and this was being accelerated by kidney failure. The general gist is that his heart is pumping around 50%, his kidneys are now around 50% as well, he has a persistent infection in his foot (complicated by diabetes) that has resulted in having two different surgeries over the past year or so to remove parts of his foot (and he'd already lost a leg 10 years ago).  He's filling up with fluid that his kidneys can't precess, and it's leaking everywhere. It's in is abdomen, lungs, and basically just all of his organs and tissues like a sponge. They can't get any more off surgically, and they can't it off with medication because nothing is circulating well. The heart is not pumping the blood enough to get the meds distributed throughout his body (especially to his extremities), and his kidneys aren't doing their job to filter the blood, either. And he's not really a good candidate for dialysis given everything else that is going on.  

It's sort of a perfect storm.  A very sucky, very complicated storm.

And James can't make sense out of what the doctors are saying because there are so many specialists coming and going, and he's exhausted from being woken up every time he dozes off by a nurse or a doctor, and the information being given is so great that he can't absorb it all. So the doctor asks if I could please come in and support him on Monday and Tuesday, because he is going to have a meeting with a Palliative Care Team and it might be overwhelming for him.

Well, of course I was there for those meetings.  I've been at the hospital every day this week, actually.  Sometimes more than once each day. Not only have I been in even more meetings than I was warned about, I've also had a few conference calls with James' sister on the line as well. 

And so. Here it is. Thursday.  And I am now the Durable Power Attorney for Health Care for James.

(I know some of you are yelling "finally" at the screen, but please don't let me hear you. I had to be quite ready within myself to take this on.  I's....ummm...kinda huge.... and I have a whole host of responsibilities of my  own already, and it's usually you same "finally people" out there that are the first to nag at me to cut back on commitments so I can take care of myself better, so just shut yer traps!  LOLOL)

I'm not taking on James' financial stuff (I am only signing on to manage the health care). His sister is still going to need to deal with his finances.  James' sister is 17 years younger than him. She loves him, but she also barely knows him. She remembers him going off into the military when she was a very little girl, and then she remembers that when he came back, he married someone that their mother and her father (James' stepdad) didn't approve of, so after that he basically kept a distance.  James' sister cares about him, but she's 300+ miles away, and she cant look into his eyes and see what he needs, nor does she feel she knows him as well as I do, and James is the first to agree.  He's been asking me to speak for him for a couple of years, and I just wasn't ready.

I have to be honest. On some level, I feel like I had to accept this responsibility. When it all comes down to it....if I do not step in and help James with the medical piece, he is going to be flying blind. It is not in my nature to leave someone I care about in that state. Heck, it's really not even in my nature to leave someone I DO NOT care about in that state! (you hear that, InvisibleSister??! Oh, and happy belated birthday! Sheesh.)  And I don't have it in me to know that James will be alone in his last hours because I might not be allowed to be with him, and he might not be able to talk at that point and ask for what he needs.

*sigh* this is all so hard

Ok. So.
This week, James started asking me if I would please speak on his behalf once he couldn't do so any longer. That's when I pretty much realized I don't know him all that well...I might not eve know him any better than his sister!  I mean, I do know some things. I know that I can "read" him pretty easily, and I can tell when he is upset even when he is trying not to say so.  I know what questions to ask to get to the root of what is bothering him or to figure out what his needs are.  But never in our 9 together years have we ever talked about feeding tubes, "do not resuscitate" instructions, whether or not he believes in organ donation for himself, cremation versus burial, etc.  That's just not what we do with our time together! I visit him to cheer him up, man!  We talk about what movies he watched on Netflix that week, or about what he's reading. He asks me about what I'm knitting, he follows along with stories about my family (most of whom he has met over the years, including my late grandmother), and he asks about how the house and the remodeling are going.  We have light conversation. We chit-chat. We don't talk about death. Who in this (crazy upside down) society talks about death??! (we are so weird).

This week our visits have been nothing like light chit chat, let me tell you.  This week has been the crap-ton of meetings I described a few paragraphs ago, followed by two hard days of "getting to know you" discussions on a whoooole new level, so I could help him fill out his Advance Health Care Directives forms. Then I needed to deal with getting his ID in my hot little hands (which of course was not with him at the hospital-hospital, and I wasn't authorized yet to go into his convalescent hospital room and take something)....but I needed him to have his ID so I could bring in a mobile notary to notarize the documents we were filling out. Bah.  I got 'er done, but it was epic.

I'm exhausted. Partially from all the driving back and forth (he's 30-45 minutes away), but mostly from the energy it takes me to "hold space" for a person who is hearing that they probably only have 6 months to a year to live and that they aren't going to get any better and that they really should try to "take care of a few things" (no matter how hard it is) and before they can no longer think clearly.  Joyous. Right?  *sigh*

It was a whole lot of tough conversations for James and I, but I am so glad we got it done. 

You know, I am fully capable of speaking on James' behalf.  And I'm fully capable of honoring his wishes.  But up until a few days ago, I also had no friggin' idea about what his wishes are, and as we dipped our toes into the waters of these difficult topics, it became clear to me immediately that what I would want for myself, or even what I might wish for him, are not at all the same things.  He has a whole different set of cultural beliefs about dying than I do, that's for sure. I'm sort of in the "fling my ashes anywhere" category, and if you are a good listener, I'll send you messages from the other side ;-) I'm in the camp that says, "don't keep me alive on machines for an extended period if I am completely gone."  James is more in the "I need my ashes near my family's ashes" category, and he believes that since we can't prove what happens after death, it must just be that we go in the ground. He's also camped out in the keep me alive no matter what, category...because they might figure out some way to fix me. (this has changed since the meetings with the docs...he is now opting to be let go once his heart stops...and that was a very hard thing for him to come to)

Neither thinking is right or wrong, neither is good or bad, but holy cow, are they different positions! And so my job in all of this is to know him and his desires, inside and out, so that I can make sure his needs and desires are met, whether I agree with them or not.

It's been a bit of work for me to do that.  Not only getting to know him better, but widening my own belief system to not just accept his beliefs, but to be willing to accept them to the point of being willing to move into action and honor things I don't exactly believe in.  It's sort of wild.  He's choosing for himself some things that I think may increase his suffering. And I am going to need to honor that. 

After 3 days of meetings and paperwork and very hard conversations and a few tears and some hugs and hand holding....I know I can do it.  I know what he wants, and I know I have it in me to stand by him as he works his way through his choices.  And I know how to be there for him and see if he's changing his mind as he goes along about anything.   

Again, it's wild. And I actually can't wait to watch me in action. I think I'll be a super-star, but it's something I've never done before, so it's really going to be a trip and a half.

I have more to say on the topic, volumes, I am sure....but I'm beat.
And more new things to say about all of this will come up over the next few months, as his health shifts, too. 

I think it's safe to assume you'll be hearing more about this over the next few month, so stay tuned. 



Jen Anderson said...

Hoo boy. 6-12 months in his condition does not sound comfortable at all. It's amazing that the human body can keep going for so long when it's in such bad shape.

You do take on a lot - but that's what comes with being a caring person.

Jodi said...

Oh, honey. Wow. Big hugs for both of you (and the MiG, YourFK, and James's sister as they stand behind you in this). James is so lucky to have you.

(formerly) no-blog-rachel said...

What Jodi said - and wow (again) - you are beyond awesome. Much love and many hugs to you.

Lorena said...

While I'm not in the "finally!" camp, I was - before you and I had lunch that one time and talked about it - in the camp of "is there anything you can do, legally?" and after chatting with you I was firmly in the "yeah, that's way too much to ask of anyone" camp. (I'm also in the "AmpuTeeHee should take care of her self" camp, heh, although that doesn't necessarily mean you should CUT BACK, just that you should practice good self-care. I am the Queen of OverCommitting so I'm not one to cast stones!). XOXO

ANYWAY. You're in a hard place right now. I admire you, and am sending you as much love and strength as I can. You are a mountain-mover. It's a hard, rough place to be in, to stand as guardian over someone as they're preparing (or not) to shuffle off this mortal coil. It's like the opposite of a doula! To respect and stand up for someone's wishes, when they're not what you hold true for your self? That takes a special person. I'm glad James has you. I'm glad we all have you.

Again, XOXO.

Gwen said...

That's huge. You're doing good work there.