Wednesday, November 10, 2010

Brought To You By The Letter "S" and the number "0..."

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'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.


MrsSaditty said...

Wow. I wish I had something to say. As you know my Dad is ill and I would do anything to be able to get out of denial and be as frank as you are.
My prayers are with you...

Christie said...

I'm so sorry. You and your family are in my prayers.

Marilie said...

I understand, trust me. But this is kind of the only way I really can function. I just need facts...I can focus on facts, and relaying facts to others. That's the way I keep it together. When I have to sit and stop thinking, is when it all just gets overwhelming.

thisisme said...

I'm crying as I read your post b/c I went thru this w/ my Granma in Sept of 09. She died of ovarian cancer and much of the decisions that you and sibs are making, I had to make w/ my Dad and Aunts(My granma basically raised me so I was the one in charge of her estate etc). It breaks my heart b/c I wish there was a cure for cancer. As childish as it sounds I hate cancer. When Jason(yea I'll never forget his name) my Gma's palliative care nurse told me at this point "we just want to make her comfortable", a piece of me died too. Gma was very adamant about wanting things to 'take their course' as well. My selfishness wanted her to still be here by any means necessary. I know that's selfish but this woman was like my mother and I made it thru 28.5yrs w/ her in my life what would I do w/ the next 28.5 yrs w/out her? I'm so sorry to blog in your comments but I know what your going thru. As always I'm here for you and love you chica! *hugs* and prayers.

This One Woman said...

This post took me out. As my mom's oldest child, 24 at the time, I had to make all of the decisions for my mom. Her cancer went from her lungs to her brain so she was out of it due to brain swelling. I have often said that I would not wish this pain on anyone. I am so sorry that your family is going through this. I also remember that day I talked to the person from hospice. I don't think I will every forget. They had to find me b/c I was hiding downstairs crying my eyes out but I was eerily calm during that meeting. We have to do what we have to do to make it through. HUGS and prayers to you and your family.

Marilie said...

Yes...that is the catch phrase: "we just want to make him/her comfortable." The thing is, they give you the room if you really want to fight, but they just don't mince words when they tell you what the outcome will be when it comes to fighting for all the extra hours, vs. letting the person go peacefully.

Cancer definitely sucks. :(

Marilie said...

@ThisOneWoman - oh man, I can't imagine going through this at 24...not that 35 is any better, but at 24 I would not be able to handle this. It's interesting how we all respond to grief differently. I will have a more light hearted post coming up, about my mini-breakdown in the grocery After it was all over, I just had to chuckle at myself, 'cause I know it's just the stress.

Anonymous said...

There's nothing I can say except I'm sorry and I'll be keeping you in my thoughts.

Oh, and the fact that there are 0 Starbucks is a damn shame.

Marilie said...

Thanks, hon.

ANd yes, it is a dang shame. We have them here, but they're just not readily accessible like they are for me in Charlotte. I guess I'm just spoiled.

Anonymous said...

I am so sorry, I will keep you all in my thoughts and prayers.

WhyDidIGetMarried05 said...

Went through the same thing with hubby father about 4 yrs ago. He was trying so hard to hang in there but he had gotten to the point that he could no longer open his eyes or talk. When hospice nurse talked to us letting us know he had about a week or maybe two, tears begain to roll down his face and I was done. We didnt realize he was still that much with us. He was hearing everything and understanding all when we thought he was in a deep sleep.(perfect example of every closed eye is not sleep)Pop waited for us to leave and go home and he slipped on away only 2hrs after they said a week or two. Im feeling your pain and praying for you and the family strength and courage.

Ieisha said...

We did hospice for my Granny. She had congestive heart failure and didn't care for the doctors and the poking and prodding.

My mom took care of her in our house until her final breath. The hospice nurse just came over daily and administered meds and took vitals. My mom worked in the field before so she was used to it.

Seeing it first hand was more than I ever bargained for. The bonus (trying to find the silver lining) is that you get to spend quality time with them and strengthen your bond before they pass.

And with you and brothers going through his things, you'll learn lots of little tidbits and interesting info that you guys can share with each other.

I hope things go as best as they can considering the circumstances.

Marilie said...

I learned that he liked to study things. I would find random pieces of paper where he had taken notes on things. Like one was where he had written down different info on "athiests" vs "agnostic" and some other things. Or, we'd find papers with words written on them and definitions written out. I mean, we never had any in depth religion I wonder what prompted him to be studying those.

In one note book, I found where it looked like he was starting a letter to us. But there was nothing but the greeting. I wonder what he was going to say. :(

And then a kajillion old lottery tickets. He really takes that whole NY lottery slogan to heart: "all it takes is $1 and a dream." :)

Neev said...

Girl...I can't deal. I was misty when you told me on FB. I'm over here bawling now with the details. Like I said before, I'm so glad you have LDR in your life. He is a godsend for you and your family. If you need anything, let me know. Your job is the best, I love it. Based on personal experience, look into behaviorial health services with your medical insurance. They should be able to refer you to agencies to help the family tie up any loose ends legally as well as grief counseling when the time comes. I know counseling is taboo in the black community, but it works and it is a whole lot better than keeping it bottled in.

Marilie said...

Yeah...the loose ends are going to be a mess. I will definitely look into that. And I'm not averse to counseling at all. After this week, I can't see how it would hurt.