Monday Morning Update 6/30/08

Everything remains pretty much the same. Dad slept well through the night. He woke up semi-mad that he's still here, but trying to be good, in a way, for our sakes. I'm beginning to feel like the boy who cried wolf. Though, I know the dr.'s did say it could be a week, a week and a half or even longer they did make it sound very dire right before he left the hospital. Maybe, all along all that he needed was to come home at least to beat the infections and maybe get his kidney's functioning better - now, I'm not saying the infestions are gone or that they kidneys are functioning, it just seems that they may be to me. The nurse and nursing aid from Hospice will be over today to do an evaluation and check over things. I will post again if anything happens and to update on what they say.

Sunday afternoon update

Things are going along. I think that the Dr.'s may have been over dire in their predictions or at least that's the way it seems right now. He has been talking with us and he's requesting that he be able to go see/sit in the living room. We have to work on getting that done if it's possible. I was sitting in the living room today and thought, hmmm, it's a little quite in the bedroom. I peeked in the door and this is what I saw:

I myself didn't receive an invite :-)

Dad has a couple of visitors today and I think he enjoyed that. Well, that's it for now. I'll post again with any updates.

Sunday morning update

Things were pretty status quo. Janine arrived yesterday afternoon, bringing stories of the game and pictures for Granddad to hang from Nicholas and Moira. Dad, really enjoyed seeing these. He had some icecream and we all hung out. Mom and him listened to some music together. Dad slept through the night and Janine kept vigil - she's getting some well deserved rest herself right now. Jason, Marty, Nicholas and Moira are all scheduled to drop over today for visits. He has been a little disoriented, but for the most part, except for slow answers aware of what is going on when he's awake and able to have some conversation. Will update later, even if it's just to same same ole', same ole'.

Saturday, June 28, 2008

Dad continues on. He is not happy. Might sound harsh, but I'm trying to be honest about what is happening here. He was able to sleep mostly through the night - I must admit at one point around 11:15 I basically forced him awake by talking loudly and asking him if he wanted some pain medicine, just to make sure he was wakeable. He was. We all spoke and actually Janine had called in while we were talking and I was able to hold up the phone to dad's ear and they were able to speak a bit....

Janine was at home because Nicholas' baseball team (Marty is coach) is in the All Star Tournament and he had a game last night - they won - they play again today and Janine will be up after that game. Janine and Moira are cheering the family on! Go team!

...while I was on the phone with Janine in the other room filling her in on things, mom came out and said dad wanted to speak with me. I went back into the room and there ensued one of the hardest conversations of my life so far. He asked me how things were going and where they were going, he repeated that he just wanted to die, he was done, and wasn't there anything that could be done to make it happen now, faster. I with, Janine, supporting me on the phone let him know the basics, that we couldn't at this point predict how long things were going to last, the dr.'s had said any where from 2-3 days to a week'ish. That we, because of what he wanted and because we didn't want him experiencing any more pain or being like this either were hoping, just like him that it would the former rather than the latter. That unfortunately all that we could do is make him as comfortable as possible, try and keep him pain free, and be there giving love. He looked at me and asked why more couldn't be done. Why it couldn't be over now. I choked backed tears, and let my defense mechanism take over and told him that "unfortunately, Dr. Kevorkian, even learned and lost, that doing different is illegal and that we had to do things the legal way" and that we would make him as comfortable as we could and continue to provide support. I repeated that we loved him very, very much and he nodded sadly to indicate he did understand our predicament and he said he loved us very much as well. I gave him some more pain medicine and he went back to sleep.

I finished my call with Janine. And wrapped myself up in a huge hug from Jason and comforted myself. Jason had mom and I get some sleep and rest and sat vigil for us through the night. Since this morning, Dad has been up here and there, but mostly sleeping. Though during one of his awake periods he looked over to little Lucie and said "come'on Lucie do your job" and I was like "what?" and he said, "there are dogs that kill people." I couldn't say anything, but I did make Lucie and Kira give him kisses and told him they loved him and he gave them a pat and said he loved them as well and then gave that sad, defeated smile once again.

Mom and I are hanging around with him, watching some TV, contemplating paying our everyday life bills that prove that things do have to go on, and talking about contacting Evans Funeral Home in Bowie regarding making preparations.

I will post again with an update later this evening....Love, Hugs and God Bless to all.

Friday, June 27, 2008 - Update

Dad is at home. He arrived about 3:00 p.m. and we have him all set up in a hospital bed in their bedroom. He said he was very happy to be at home and he actually looks, if I may say, quite relieved. He is aware of why he is at home and about what is happening. When I was out of the room, mom said that they talked and he asked what the dr.'s were saying about how long and she said that they can't pinpoint it, it might be a week or more or less. She said that he did grimace a bit at that and said he hoped for less - not that he didn't want to be with us, but that he doesn't want it to be like this.

Lauren, an intake nurse from Hospice of the Chesapeake came by and talked through paperwork and what we can expect from their organization and answered questions we had at the time. It was really good to talk with her and go over things. It made me "calm" (don't know if that's exactly the right word or not, but it will have to do for now). They sound like they know what they are doing, will be here for dad and for us as we go down this road and it is a comfort. Lauren spoke with dad and went over things with him as well to reaffirm that this was what he wanted and he said yes.

Dad has been speaking with us, drinking some water and sleeping on and off. It does take him a little bit to answer questions sometimes as he is a bit slower in processing either the question or formatting his response, but he is aware. His breathing is a bit labored and he does have pain. Lauren has said that this will increase, as well as his sleeping more, become more disoriented, etc. When his nurse is here, she will give us updates and let us know what she feels is the stage where he might be and what we might expect to happen next, so that we are not caught unawares. We have medicine to give him for the pain and we are working to keep him comfortable.

That's about it for now. We are extremely glad to have him home with us as well. Mom is holding up as well as can be expected and I'm making sure she is taking care of herself. The "Schnoodle Sisters" are enjoying their visit and spreading their love with all of us to help keep us sane - go Lucie and Kira. Cuddles and loves are always good things!

I'll post again tomorrow and let all of you know how things are going. Thank you so much for the kind words and we appreciate all the love, thoughts and prayers.

Update - After the Hospice Meeting

So, Janine and Mom met with Hospice and it has been decided that dad will come home tomorrow 6/27/08. We will be there to care for him and spend time with him until it is his time to leave us. They saw him today and while they were there he was very much aware of them and said once again he wanted to go home. He also said he didn't want to be this way or live this way and wished he was dead - as harsh as that may sound - it is the way he feels. We have a hospital bed and oxygen set up for him in their bedroom at home and he will receiving liquid morphine for any pain.

Please continue to pray for him and for all those who love him and will miss him. One of our friends wrote the following and I wanted to share it with you. I hope he doesn't mind my sharing, but I, myself, found it profound...

"very sorry to hear about this, though i've been pretty up to date through mom. I was telling her when she was telling me about your father that "they" just don't make it easy 'getting out of this place'...
it's not like we can walk through a door when our time's up, perhaps giddy and excited, 'ok guys - it's my turn. can't wait. i'll see you all in a little while...' no, it has to painful and heartbreaking and maybe fearful... perhaps this is when/where faith comes in... that invisible bridge to 'God only knows'... not sure where i'm going with this but i feel for you all very much. Your dad's always been a wonderful friend and neighbor to us..."

Overview and e-mail sent out

Dear family and friends:

I know that some of you have heard and my apologies to those who haven't, but Dad has been really sick and not expected to pull through. For an overview, Dad had not been feeling well and when he went in for initial tests it was revealed that he had cancer which was definitely in the liver (not sure where it started and has been identified as "ampulatory cancer"). He was scheduled to speak with an oncologist for discussion of treatment and further tests, but before he was able to meet with him, he developed an infection and was placed on an iv antibiotic - because it was an iv, they had him go to Heritage Harbor (HH) nursing and rehab center. From this initial infection he recovered and he was looking pretty good, all things considered and we were looking towards getting him discharged, home and to the oncologist. Then it all began to unravel, HH thought he might have pneumonia, so sent him over to Anne Arundel Medical Center (AAMC) for treatment. When he arrived there, they found out that he had an infection again and began treating that - no pneumonia, but fluid in the lungs. He then contracted sepsis - "sepsis is a systematic responses to infection, which causes organ failure and death in severe cases. But early diagnosis and appropriate treatment can greatly improve survival rates," http://sepsis.com/index.jsp. Followed by contracting ecoli, Vancomycin-resistant Enterococcus (VRE), there is yeast in his bloodstream and now a third or maybe even a fourth infection has set in. His body is not reacting to the antibiotics he has been on to fight these infections. His platelets continue to drop, his immune system is failing, a feeding tube was put in through his nose and he is discombobulated/disoriented. He has had to be put in restraints twice, once because he tried to get out of the bed and the second time when he pulled out his feeding tube. We have been basically told by the Dr.'s that the end is near. Janine and Mom are meeting with Hospice today to explore our options. The dr.s are saying anywhere from 2-3 days to 1-1.5 week for Dad to live.
I have a blog and have been updating it with Dad's condition and the news that we received. I have also written more stuff in my entry's but it is not necessary to read those, so don't be scared if you see a long post. If you just read, usually, the first paragraph you will have an update on Dad. You may leave any comments, prayers, thoughts in the comment section of any of the posts you read - I will receive an e-mail about these and will pick them up and let Mom and Janine know. I hope that having it in this format is not too difficult, but, please let me know if you find it so. When my Aunt Cathy was hospitalized and in rehab her family set up a site through this website called Caring Bridge - basically about the same thing as my blog but laid out in a better format and I can transfer things over to that and resend out a link. I am just being lazy since I have already been doing the updates in my blog and since we really don't know how much longer it will be.

Update and Decisions, Decisions

We received a call from one of the dr.s at the hospital yesterday and the report wasn't very good at all. So, Janine and Mom will be meeting with Hospice at the Hospital this afternoon to discuss getting Dad home - so basically he can die there. He will be taken off the feeding tube and antibiotics, but given stuff for any pain he may have. They say that this will result in his more than likely dying within two to three days. The cancer just keeps growing and spreading. He just keeps getting infection after infection. The ones he has are not responding to antibiotics. He has yeast in his blood. His immune system is failing and his platelets have continued to drop. He has been restrained because on one occasion he has tried to get out of bed and on another he pulled out his feeding tube (through his nose). His mental status is not improving and pretty much all that he keeps saying is that he wants to go home. We are, of course, greatly saddened and upset to see him like this and we know that he would not want to continue on like this. We could have him transferred to a hospice center where they would keep up some care, but that would only prolong his living by maybe 5 days and in a condition he would not want it sustained. I will let you know how things progress, etc.

It will be interesting to see how we all handle things and continue to handle things - continuing on and doing things that need to be done. Damn, it brings back the memories of having to hold it together and get things done all those years ago. My sister Cheryl was killed in a car accident in 1986 at the lovely age of 22, just 30 days shy of graduating from UVA. That was a shock. The one thing we do have with both is that we had/have been able to tell them that we loved them - we spoke to Cheryl on the phone the night before she went out and were talking about how great it was going to be to see her that weekend and that we loved her. And with Dad we have told him we loved him continuously. That is one thing we learned from that horrible experience all those years ago, never, ever, take it for granted that the other person just knows you love them, tell them all the time - there is no shame in it and when you really mean it, it doesn't become trite or over said.

Anyways, when it all came down to it, we all handled our feelings in our own way - Dad and I very stoically and Mom and Janine very passionately - years later it came out that some of us thought or wondered about others because we didn't show as much emotion as they were. It was talked out and things were learned and shared about how we each dealt with it on our own - basically suffering all around even if others didn't know and that for those that were more willing to share their emotions, they should have shared and we would have been there for them, and maybe if one of the "sides" had taken the step we would all have meet in the middle. Now, it's not like we weren't there for each other because we were, just sometimes things are perceived differently by each person.

So after all that rambling, I have been trying very hard to make sure that everyone is aware that I am here emotionally as well as in my planning, seemingly unemotional way - as discovered and discussed - no one knows what goes on with another behind closed doors, in the shower, in the car driving in the dark - sounds like it could be something bad, but what it really is - places to cry where no one can see how much pain you are really in because that is how you have to deal with it otherwise you are scared you might lose control and never regain your sanity. Janine on her part is holding things together and sharing, but you can also tell she is understanding of where I am coming from and accepting, as much as I am accepting and, sometimes probably being a little pushy to her about it being ok to be emotional, this time I'm really here for you and am not afraid to show it. Janine had it hard when Cheryl died, she was the first to hear about it - she answered the door when the state trooper came a'knockin so early in the morning that dreadful, dreadful morning and had to go to the bank with the ST to let mom know - not exactly something one wants to know first or share ever, let alone when you are only 18 years old. I know for the longest time, and maybe even to this day that she wouldn't open the front door for anyone if she was in the house alone.

I am a little more emotional this time, or so I think, but am still keeping things tightly close - it's just my way. I've been still going out and hanging with friends and will probably pick right back up with it after this is all over. It doesn't mean I don't feel, it doesn't mean I'm totally cold-hearted. Jason has been an absolutely lovely husband during all this, doing what I need and overall just being there for me. I need the distraction, I need for my friends to be there for me in this way, to not bring up my dad, and asking me how I'm doing alot (but occassionally is ok :-)), to not make me sad. I know that they loved him, I know that they love me and I know that they are there for me. I at this time cannot be there fully for them. To help them deal with what they are going through, to help them stop feeling the pain they are feeling when they see me sad, know I am sad and it hurts them, for when they realize it will eventually happen to them and they think of how they will handle it themselves. I can be there sort of, but I need to be a little selfish right now and take care of me, my heart and my family - it will break me apart at this point and for me to go on, I need them to be there and support me, this way, the way they have been and continue to do so. And, I love them for it (and I hope they know this). I will be there for them in their time of need in the capacity and way they need for me to be there.

Ok, I think I've rambled on enough....
Love you daddy!

This Weekend and Monday morning

Saw Dad on Saturday and Sunday. He was pretty out of it both days, though his eyes looked a little clearer on Sunday - probably because they took him off the dilaudid which is an opiate pain killer, but I don't know. He really isn't eating and even though I tried coaxing and then, yes, you know me, tried a little burst of temper, he still only eat about 5 bites of meat and 5 spoonfuls of jello, so basically not much, not enough to keep your strength up. He did focus in on mom and I and I told him to fight the infections and that we, actually all of us, loved him and that he needed to gather his strength in order to go home with us.

That is one of the saddest things. He really, really wants to go home with us, but it is not possible. He tried to get out of the bed Sunday morning before we showed up, so they had to secure him to the bed in order to stop him from trying again and possibly falling, hurting himself further, etc. It was very tough to see, especially because he would look at the restraints and be so confused about why they were there and what was happening.

The dr. called mom this morning, to get her permission to put in a feeding tube (through his nose as he is not strong enough to endure them putting in a g-tube. He had to ask mom because dad is so confused and out of it that the dr. couldn't get a viable answer from him. Mom ok'd it. The dr. also said it looks as though dad's kidneys might be beginning to fail and he's called in a urologist to look them over. Mom is headed to the hospital this afternoon, so I should have more to report at that time. It's so hard for mom to see him like this. They've been each other's life for 46 years. But she wants to be there for him, for herself and on the chance that he might see her and know that she is there for him and that she loves him very much. I told her to be as positive as she could and to tell him over and over that she loves him and we love him - because even if he might not be all there, I believe somewhere down deep he will hear and he will know.

I am trying to keep positive while at the same time preparing myself for what may be happening and coming. I have a big feeling that it's not going to be a pretty sight for me when and if it does happen and I hate being vulnerable :-)

Afternoon Update

Mom and Janine visited Dad and he looked better though his vitals remained about the same. They met with the Oncologist and he reported that dad had a rare type of cancer called ampulatory (sp? - I know it is not ambulatory) which may or may not have started in the pancreas or near the bile duct in the liver and spread to the liver and small bowel. But until they clear up the sepsis, they would not be able to do anything for the cancer. As it is dad is still pretty weak, his white blood cells very low, etc. Once they clear the sepsis, they will work on replacing the stent they have in the bile duct as well as removing fluids from his lungs when he is stronger. They do not want to attempt anything in his current condition - especially as dad is a bleeder. Mom and Janine say that dad did eat some lunch as well and really enjoyed his strawberry shortcake.

His nurse called to let me know that while he is still on the critical care unit floor they have downgraded him to a level 2. We are taking this as a positive. Let's hope things continue and he improves greatly.

Please keep him in your thoughts and prayers.