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Scared and Sad's dad has esld...alcoholic cirrhosis Volume II.

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Posted 7/2/2014 8:23 PM (GMT 0)
We have exceeded the size of the thread and start a Volume Two here.

You can go back and read all Volume I posts here: www.healingwell.com/community/default.aspx?f=25&m=3074561

Mama Lama, Moderator
Posted 7/2/2014 9:03 PM (GMT 0)
Jodi,
Just want you to know I am now following your Vol. II..... and thinking about you today. Big Hugs,
Posted 7/2/2014 9:15 PM (GMT 0)
What themiz said.

Hugs Mae
Posted 7/2/2014 9:51 PM (GMT 0)
I'm just waiting for my mom to call to update me on their day.
Posted 7/3/2014 3:16 AM (GMT 0)
Dad had a rough morning coughing spells, but the rest of the day he mainly slept. He didn't want food and the drink of the day today was Mountain Dew, I forgot to add this in my other posts everyday it's a different drink he wants, root beer, orange crush, grape, Pepsi but he couldn't drink it. Today was Mountain Dew.

Dad was very confused today he doesn't know he has been in the hospital for over 2 weeks. He said to my mom, " I'm at rehab" my mom said no (in a nice and gentle way) you are in the hospital because you are not well. He looked at her funny and said " then I may as well have a beer" WE ARE IN COMPLETE SHOCK HE SAID THIS, he has not spoke of booze for 6 months!!!!!

Everyday is a new day for him, he doesn't remember the previous day or know he is at the hospital because he is sick, he thought he was in rehab for alcohol. :( he didn't know my mom was there everyday with him, she has to remind him each day. Does anyone know why this happens?
Posted 7/3/2014 3:48 AM (GMT 0)
Sad, just heading to bed. It is not unusual to not understand what is going on. Your Mom reassured him and kept all calm, doing the exact, right thing. Your Mom knows she is there. She must be exhausted. As are you. Please know we are all watching your family as you handle these weeks with such grace. Big Hugs
Posted 7/3/2014 6:02 AM (GMT 0)
Hi S&S. The confusion your Dad is experiencing is normal. It's probably from a combination of things - toxins from his ill liver and kidneys and reduced oxygen from his compromised lung function are the two that I thought of first. Try to keep in mind that his confusion is probably more distressing for you and your family, than it is for your Dad. In his mind, the things he says are true, so it's not upsetting to him.

My Dad had something called 'Sundowner's Syndrome' - it's a type of dementia that occurs in some elderly people towards the end. (This has nothing to do with what is going on with your father - I'm just telling you about it because of something the doctor said to us.). My Dad was seeing people who were't there, 'remembering' things that weren't said, forgetting where he was, etc. He was fine with it, but it was incredibly painful for all of us. The only time he would get upset or stressed about it is when we would try to 'correct' him. Anyway, long story/short, his doctor told us that we should try to 'go long with him' if it seemed that our attempts to correct him started stressing him out. It seemed to help when we did that. Just thought I'd mention it, in case it's something that happens with your Dad.

Hope you are getting some rest. I'm still saying a special prayer for your Dad and keeping all of you in my thoughts and prayers.
Posted 7/3/2014 10:00 AM (GMT 0)
Jodi

Splash is right. My mom often had sundowning syndrome. It usually occurs at night or when the shades are drawn. They also call it ICU syndrome and probably because it is often windowless.
Very normal for someone in Dad's condition. It has to do with circadian rhythms and disruptive sleep patterns.

Initially I was against "going along" with my mom's dementia, as she was a very proud woman but trust me, it's far more restful to go along and that is what you want for Dad at this point. No harm, no foul.

Thinking of you and your family.

Hugs
Mae
Posted 7/3/2014 2:37 PM (GMT 0)
My dad has a big window in his room, but I've always found his days are better than night time with sleep reversal. This has changed a bit since he has been in the hospital sleeping more and more.

My dad also told my mom " they are giving me shock treatment" I'm guessing this is part of the hallucinations. I told my mom all about what to expect with hallucinations and delirium, she now better understands why he is saying weird things.

As for my son, no I have not let him go to the hospital, I want him to remember grandpa as grandpa and we all had a good visit about a month ago out on their land. I don't say much to my son he is too young, I just tell him grandpa is very sick, that he can understand and that is as far as I go with speaking to my son about it.

Mom is heading to the hospital today, I am going to take the day off and go there for a few hours. My sister is going to stay at my moms tonight and yes my mom is exhausted but ok.
Posted 7/3/2014 6:02 PM (GMT 0)
Hi Jodi. Just wanted to say that I think your decision not to have your son see his Grandpa in the hospital is a good one (not that you need my approval! Lol). I have 2 sons at home, ages 15 and 21 (his B-day was yesterday - can't believe he is 'officially' an adult!). Anyway, my older son decided to visit Robert in the hospital to say his goodbyes, but my younger son decided not to (but he did say what he needed to say to Robert over the phone). They were old enough to make this decision on their own - however, if they were younger (and knowing their personalities), I would have made the same decision for each of them. Five months later and neither regrets their choice.

I'd like to suggest that you take of couple of photos - you will probably be glad you did later on down the road.
Posted 7/3/2014 6:18 PM (GMT 0)
Not sure how your dad feels about it , but as a patient, I always had mixed feeling about people visiting me, even when things were dicey. Part of me wanted to see friends and family but the other part didn't want anyone to see me like this. Was the male ego talking for sure but I felt a little uncomfortable having people seeing me in such a weakened state and not the master of my universe as in my former life. Just my own perspective from the "bed".
Posted 7/3/2014 9:15 PM (GMT 0)
ML,

Is there a way to insert ScaredandSad's name in the title of this thread so that others can find her easily?

Right now they wouldn't find her as it is under yours, Mama Lama, unless they knew otherwise.

I didn't even check to see if Lost Son is that way too, but imagine it is. Thanks :)
Posted 7/3/2014 10:02 PM (GMT 0)
Done! Great idea. ML
Posted 7/3/2014 10:16 PM (GMT 0)
Perfect, thanks :)
M
Posted 7/4/2014 9:30 PM (GMT 0)
Hi everyone, my sister and my son went to my moms last night for a sleepover, we were all fighting over the spare bedroom hahahah.

I went last night for 2 hours to see dad he was awake but had ALOT of pain in his legs and his ankles were swollen up huge. They gave him morphine and it helped.

Today, was a wonderful day I went to the hospital for a few hours, my mom and I got dad in this big chair AND TOOK HIM OUTSIDE, it was like watching someone see outside for the first time, it was so nice to see the sun and the wind blow in his hair. He lasted about 30 mins outside then wanted to go back to his room and back in his bed, I think it tired him out. So I do have good news, his kidneys are doing better, no more blood in his urine. Now for the not so good news, his red blood cells are very low, the doctor said this is a concern for bleeding, they took him off the antibiotic for the pneomonia which has worked, his breathing is much much better, he isn't struggling anymore, but has oxygen 24 hours a day. The doctor said his red blood count may be up due to the antibiotics so they are going to give it a few days and take blood again to see if the level rises. I hope it does.

Dad seemed more lucid today, not much, but a bit, which is like taking tiny steps. Especially after a week or so ago they said he wasn't going to make it.

Our concern now is his eating. He doesn't want anything, he has hardly eaten in 3 weeks, he turns his head away to everything, but we made him yellow jello as he wished and he had a few mouthfuls and that is it today. It looks like he has lost more weight and cannot stand on his own his legs and feet hurt even if you touch them. I rub them very softly that's all he likes.

He has been verrrrrry grouchy, I don't blame him, but hasn't asked to come home like he used to, he knows he is very ill and they are trying everything to stabilize him.

That is my update for today, some good things, some not so good, but we will see in the next few days if he keeps going up hill. He really is a miracle.
Posted 7/5/2014 12:44 AM (GMT 0)
Tomorrow could be a different day. It's so up and down.
Posted 7/5/2014 1:57 AM (GMT 0)
Hey Jodi! SO good to hear the good news part! Kidneys are funny little things - they can rally when you don't expect it. This is all what makes liver disease so frustrating - up and down, sideways, up and down, up and down, sideways.....

Robert also had an issue with painful edema in his legs - and that's before he even got really sick. There were days that he just couldn't walk, they hurt so bad. And the low platelets are also very common. Actually, Robert's 'normal' platelet levels were extremely low, starting from before his tx. They may give your Dad an infusion if they don't come up on their own, depending on his overall condition.

Your Dad's lack of an appetite is also common. And it's one of the more difficult symptoms to deal with/treat. It's one thing if someone is hungry, but just doesn't want to eat because they are afraid of something that food causes them, i.e. pain, gas, bloating, vomiting, etc.. But when they have no appetite, absolutely no desire to eat, no hunger, nothing - it makes it much harder. Yes, there are medications that help induce hunger, but they are usually contraindicated in cases like this. Hopefully your Dad's appetite will return as his other issues start improving - sometimes it's a matter of simply feeling better physically.

There's no way to tell what the outcome will be for your Dad - but I have to tell you that I have seen/heard of more 'miraculous' comebacks from a critical state while fighting liver disease, than most any other illness. I don't know why that is, but I have seen or heard about it many, many times. So keep hanging in there! And I'll keep saying that special prayer. Have a peaceful night.
Posted 7/5/2014 2:39 AM (GMT 0)
Splash you are sooooo kind. Today was one of the better days forsure, even if my dad was grouchy, just to take him outside was so nice.

The ups and down is very emotional, it's like a roller coaster. But, we are trying to deal with everything and help dad as much as we can, our lives are out on hold no matter what the outcome is, he needs us now and we are there.

I like hearing your stories of Robert, you two were and are love birds :)

Tomorrow may be a different day, and dad doesn't want to eat because he doesn't feel like eating, it has nothing to do with vomiting, he used to vomit everyday from drinking, that doesn't scare him. He turns away when he hears the word food. But, drinking on the other hand, he lies pop and ice chips, the doctor said he can have anything he wants. Maybe he knows more than he is actually telling us and is just giving him anything he wants right now. I'm sure pop is not the best for him, I try and push the juice and water instead. Ice chips are his favorite.

My dad doesn't seem like the same person, is this normal? His voice is very hard to hear I have to put my ear up to his mouth sometimes to understand what he says. Sometimes he makes sense and sometimes he doesn't. Says some odd things once and a while. I just go along with it as I don't want to frustrate him.

It's the not knowing if he is going to get better or not that is very hard, he seemed to have declined but then his kidneys and pneomonia got a bit better, I don't understand it all. He seems more peaceful since he isn't losing his breath all the time and choking which makes visiting so much easier, I hated seeing him that way.

Do you think my dad knows how very sick he is?? Today he was asking about the liver doctor, we didn't know what to say ......so confused.
Posted 7/5/2014 3:09 AM (GMT 0)
Try ice cream. It worked for me, when I didn't want to eat most kinds of food.
Posted 7/5/2014 5:06 AM (GMT 0)
Hey Jodi! That's what I meant about your Dad - that in cases like his where it's a lack of appetite, and not a case of a fear of discomfort, vomiting, etc., that it is more difficult to deal with/treat. You can't make someone hungry. Robert struggled with this problem too. There were some things I did eventually get him to eat - yogurt (fruit-on-the-bottom), applesauce, canned fruit (in fruit juice, not heavy syrup), fudge pops, chicken broth, pudding, fresh peaches and pears, and sometimes Ramen noodles.

Grouchiness - oh so normal! Lol And yes, it's also normal for your Dad to not seem like the same person - because he's not the same person right now. I honestly don't mean to sound flippant by saying that, it's just the truth. He's very sick, he probably feels like crud, he's unsure of the future - all kinds of things are messing with his emotions, personality, and his body. And because of his current condition, he isn't able to communicate those things, ask questions, etc. But believe me - the Dad you've always known and loved is still 'in there'.

Jodi, I understand being so frustrated with the 'not knowing' part of this nightmare. The only thing I can tell you is to take things as they come and try not to spend too much time worrying about the unknown. Personally, there are days when I recite the Serenity Prayer a few dozen times. I find comfort in it and it truly does help me, especially when something is out of my control.

It's difficult to say whether or not your Dad knows how sick he really is. He obviously is aware that he doesn't feel well. And when he is experiencing pain, he knows it hurts. But the brain is a very powerful and complex thing - and I'd like to think that it 'protects' us in times like this, making us unaware of how serious things are. That's just my opinion, of course.

Just keep doing what you're doing.....take it one day, one hour at a time.....and cherish the moments. Try not to worry too much. It's such a useless emotion really - it doesn't make anyone feel better, it doesn't make anything improve, it doesn't change anything, and it doesn't change the outcome. If the worst ends up happening, all the worry didn't change it - and if all turns out well, all the worrying was just a big waste of time. Trust me, I have to remind myself of this quite a bit sometimes! Hang in there, Jodi. :-)

Post Edited (Splashdancer) : 7/5/2014 2:19:02 PM (GMT-6)

Posted 7/5/2014 11:18 AM (GMT 0)
Jodi

Most hospitals keep a good supply of Popsicles/ice cream on hand around the clock. Brother was always wanting ice or icy things to soothe. He especially liked Popsicles.

Mae
Posted 7/5/2014 1:58 PM (GMT 0)
I second that popsicle for sure, told the nurses to make sure they "hide them well, hide them well ..."

Post Edited (bblbt) : 7/5/2014 8:03:27 AM (GMT-6)

Posted 7/5/2014 2:19 PM (GMT 0)
Oh thanks I will let my mom know about Popsicles and ice cream. Thank you to you all. I do know yesterday he turned his head to the ice cream at lunch, we will see.

And yes I'm going to try and not worry and take each day as it comes.

I'm off work for the summer as I work in a school, so I'm heading out tomorrow to stay with my mom for a few days. I think she will like that, I can help around the house and make her dinners. I will go to the hospital as well to visit dad and I'm going to finish staining their deck.
Posted 7/5/2014 2:38 PM (GMT 0)
Jodi - It was the popsicles only. I wanted no part of the ice cream, made me nauseous just to think about it.
Posted 7/7/2014 1:49 AM (GMT 0)
Jodi, Just checking in you. How nice of you helping your Mom, and that you are able to spend some time at her home. I know your help will be a huge gift. Hope things are ok today. Big Hugs
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