Why? Well, "S" is for stressed, and "0" is the number of Starbucks readily accessible to me on my way to work in the morning.
Bear with me - this is bound to be a rambling post that's all over the place.
Some of you follow me on Twitter and some on FB. I've said more on Twitter than on FB, because my niece and nephews are on my FB page, and I don't know how much my sister has told them yet, as far as my dad.
The stomach cancer has spread. Because of his weakened state, they simply cannot treat the cancer. Chemo is poison; it kills off the bad cells, but it kills the good ones, too. Not to mention the surgeries he's had on his stomach (the first one in 2008, when we found the cancer - and then the latest for the ruptured ulcer last month). His GI system is just not in tact enough to take anymore. Whereas your stomach or my stomach could take a jejunostomy feeding tube (also known as a J-tube), his stomach cannot.
The other more pressing issue, is that he is continuing to aspirate. The little bit of food that he does try to eat, his stomach is not processing very well. When he aspirates, it goes into his lungs, causing aspiration pneumonia. He has it in the left lung already. They gave him a course of antibiotics, but the recent chest x-rays showed that it's in his right lung now. The doctor told us today that it is this pneumonia that will likely cause his death, not so much the actual cancer.
My brother T and I have been the information gateway for my siblings and my mom. We get the info from the doctors, and then we pass it on. J has been to some of the meetings, but not all. He's got a crazy work schedule and two kids, so it's hard with shuttling them back and forth to after school activities, etc. I know that T has been keeping J informed...but I think it just really hit him today when the doctor, the palliative care nurse, and the Hospice coordinator pretty much all said the same thing: Dad is dying. He's not going to get better.
Both my brothers are the ultimate "big brothers." They would do whatever they needed to do to protect me and my sisters, and they care about our family. J especially. He also is the closest to my dad and - ironically - the most like him. Which means he is the worrier and he is not that good in the stressful situations. I love him to death, but it's just not his thing. It isn't/wasn't my dad's thing either. I knew that he would take it the hardest.
I don't think I've ever seen him cry. And I was just not prepared to see it in the meeting today with Hospice. When we walked into the small meeting room, there were 5 chairs in an L shape. The hospice rep sat where there were two chairs, and then we occupied the other three chairs with T in the middle of both of us.
When she started talking about the info in my dad's chart, I just sort of nodded and followed along. T and I had already gone through this info with the palliative care nurse. I guess J had not heard a lot of it. Or, like I said before, I guess it was just really kicking in for him. When I looked over and saw my big brother crying...I just lost all focus. So I'm listening to her (or trying to listen), but I can't stop myself from crying, because my brother is hurting and there's nothing I can do to change it.
I'm trying to be incog-negro and dab at the tears with a tissue, but they're just coming down too fast. T's rubbing my back and rubbing J's back, and the hospice rep is trying to just give us a moment. Eventually, we got it together and decided on some options, discussed getting him on Medicaid, etc.
When we got out of the meeting, and went back up to the room, LDR was still in the room with dad, and the palliative care nurse. That's too long to keep typing, so I'm just going to tell you her name is Kelly.
Kelly had been in talking with dad, regarding appointing my brothers as his health care proxy, should he be unable to make decisions. Then they were talking to him about the hospice care, and the fact that you have to be on DNR status once you go in to hospice.
Dad has been in and out of lucidity, and because he's so weak and it takes him a minute to respond sometimes, it's hard to know if he really understand what you're saying at that moment. He could start talking about something totally different. Kelly told us she'd been talking to him about hospice care and whether or not he wanted to come back to the hospital should any difficulties arrive. But it seemed like he kept wavering, so she asked us all to come in the room so we could be sure we understood what dad's wishes were.
So you have his doctor, me, J, T, Kelly and LDR all in the room. Kelly is kneeling down so she's on eye level with him, explaining that resuscitating him would involve chest compressions that could possibly fracture his ribs, and that even if they intubated him and had him on a ventilator, ultimately at some point, the outcome is all going to be the same...
In my rational mind, I KNOW that she has to say all of this. He has to know what's going on. But knowing that someone is terminally ill and that they will die is one thing. Having someone speak it out loud into existence is another. I tried to just stand back from the bed some, and keep dabbing my tears. I really wanted to just burst into sobs, but not in front of my dad. So I just tried really hard to focus in on what Kelly was saying, and just make sure that dad understood. And he did. He agreed that if he is in hospice care, and something should just happen, that he would want nature to take its course.
That sounds so crazy. Let nature take it's course. I mean, really...we're all dying, if you really want to think about it. But I guess Kelly was trying to break it down into the simplest terms, and I think that ultimately helped Dad really understand what was what.
Mind you, in the middle of all of this, we were asked to make the decision as to whether or not he should receive more antibiotics for the aspiration pneumonia. Because more antibiotics meant more chest x-rays, and more poking and prodding and taking blood samples...and then being on more antibiotics could mean more distressing side effects. But...I don't know. It's just something about having to make decisions about HOW someone else's life is going to end...it's just like a surreal moment. I can hear myself talking, and conferring with my brothers, but I feel horrible that WE have to make this decision. You could tell that none of us wanted to decide that. I'm sure I had the same pained look on my face that my brothers had. But we did what we had to do.
We left the hospital and, per Kelly's recommendation, took a trip over to Francis House. This is a 16 bed hospice facility that's literally a house. They have volunteers who help with cooking and cleaning, and there are always 2 nurses on staff. They rotate 8 hour shifts. The problem is, it's a 16 bed facility. And EVERYONE with a terminally ill family member would love for them to be there, as opposed to a nursing home. They admit based on medical need, and cost/ability to pay is considered on a separate basis. I loved it; I wonder if we have some place like this in Charlotte where I can volunteer. Chances are that he will NOT end up here, because of the lack of beds...but I know we're all hoping that he can get in.
In the mean time, J and I will visit nursing homes over the next couple of days, to tour the facilities and see if we feel they are up to par for Dad. My job has been really great on flexibility. My supervisor knows what's going on; she's been through it with her own family members. I know that they do NOT have to be this flexible, and I will be forever grateful that they are.
So, these are my days right now. I make plans. We clean out his apartment. We look through important papers, and not-so-important papers, and find out little interesting things about Dad that we really didn't know about him.
LDR told me that while he was in the room with Dad, he saw him sort of staring off like he was thinking. He asked him, "what are you thinking about?"
Dad said, "life."
Yep. Me too.