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On the other side of "no treatment"

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Posted 3/31/2010 1:10 AM (GMT 0)

Thanks for the update!  Hope you don't have to battle with him too hard to take the Lactulose.

Hugs,

Connie

Posted 3/31/2010 1:30 AM (GMT 0)
arneeb, At least you're laughing about his antics. Being depressed does nothing for your spirits and it certainly won't make you (or him) feel better. My ex couldn't see the humor when I was acting stupid and she bolted. I never dressed up in her lingerie, I'm not that inventive, even when the ammonia level was up. I'd rather laugh than cry. No matter what happens, it's better to remember happy times, than sad ones. Never stop smiling. Be well. **David**
Posted 3/31/2010 5:17 AM (GMT 0)

Arneeb,

One night when my husbands levels were high, he came out in the living room in his underwear and cowboys boots on.. I look back at it now, and it was very cute!

Posted 3/31/2010 5:45 AM (GMT 0)

I was ready to start checking the cupboards for vodka... this is more like behavior... he would do when he was drunk... and he was a very funny drunk... but no.. nope... no alchohol for quite a while now... just a little yellow man with a big yellow belly trying on my underthings... but why oh why was it the ugliest ones in drawer?? and he won't give me any problems with taking medication... he was better today... this was just a bizarre thing that came out of nowhere... and was so funny that came right when I was posting here.... he does have some mental lapses... not memory... but he get's more rigid in his thinking... but I just set him straight.. nothing big... the worse part is... his appetite changes... and my budget cannot keep up with it... just when I stock up on what he wants... it changes............... eeee gad... we're surviving.. then like a spoiled child... he looks at me and says I never liked that... why'd you buy that?? I want x... then he'll remember the other and eat it... for a few days... so guess he has had confusion when it comes to this area... maybe he's just been good at hiding it... all along.. but until now all the tests have been good for ammonia levels... well... thanks for the responses... they help...

dontknowwhattodo... at least they were his underwear... and cowboy boots are cool out in our area!!

Posted 4/1/2010 9:16 AM (GMT 0)
Well things are back to "normal" if that can be said... however don't think that the last parencentisis..however you spell that... did much good... his tummy .. still very large after the draining... and his breathing still labored... who knows... guess... we'll just keep on, keeping on..... go back April 27th... recheck with heptalogist... no other news... but that is good news when you come to this place of no return... the place between here and there... where up is down and down is up..... kind of like Alice in Wonderland............... who knows... until another time.. Sandi
Posted 4/4/2010 6:10 AM (GMT 0)
Mike isn't breathing well... has like apnea... where he justs stops breathing... then gasps... he's hicupping incessantingly... coughing... more... and then vomited yesterday.... guess it must all be part of the liver cancer... no blood in the vomit though.. don't know.. but the breathing is getting worse and worse.. and that's even after the fluid was drained so it's not the ascites doing it..........

Posted 4/4/2010 6:12 PM (GMT 0)

Sandi, when does he see the doctor?  He may need to be put on oxygen.  Has he been referred to Hospice yet?

Hugs,

Connie

Posted 4/5/2010 12:12 AM (GMT 0)

He's refusing to look into either hospice or a mask for night.. he wouldn't be able to handle a sleep study.. to get a sleep apnea mask... and ne said he wouldn't be able to tolerate a mask...I already talked to him about both those things... guess he's in charge...

Posted 4/5/2010 12:16 AM (GMT 0)
He sees the doctor on the 27th... it's gonna be a long few weeks... and hospice can be called in at any time... we have a good organization... but he's not ready for that.. and he's independent in everything as of today... and he just plain refuses right now.. not much I can do until he becomes more ill... and then he has written specifically what he wants and doesn't want... so... it's what he wants that will be best I guess... even if it means he's gasping for air.. that's his choice at this time... don't think he can keep on like this much... anyways thanks for the note... will keep u updated... I think that he's gonna need some intervention within the week... the coughing get's worse and it's a matter of time before.. he starts vomitting blood.. the way he's going... we've been down this path before... the shunt was put in.. which they claimed was obstructed beginning of January.. how can he keep going on?? it's beyond me... and he has no swelling in his legs at all... I don't know.. just doing everything I can to help...
Posted 4/5/2010 1:08 AM (GMT 0)

Sandi, if he's insisting on doing things his way, there's not much you can do to help him.  Keep us updated and don't forget to take care of YOU, too.

Hugs,

Connie

Posted 4/5/2010 8:06 AM (GMT 0)
Sandi you are doing everything you can being with him. He will be so frightened you both will be. Keep posting if it helps we are all here for you.
Posted 4/5/2010 11:38 AM (GMT 0)
It's painful just to hear him breath... or not breath... he sounds like he is snoring when he is awake... it's not good..
Posted 4/5/2010 12:45 PM (GMT 0)
Cant you ask the doctor for more advice, try and explain that you are frightenened you cannot cope, maybe he will listen to someone else, I can understand if he is frightened he might not want hospice called in, he might think that is admitting defeat, we know it is not but hospice might make hime more comfortable so he has more quality time if possible with you.
Posted 4/5/2010 8:37 PM (GMT 0)
Nope as long as he is coherent and can express his wishes... dr won't intervene... already tried... doesn't matter that I have a power of attorney..only kicks in when Mike is unable to express his wishes ..... but he's either going into a long downhill... or we're heading for that last stretch... he's always pulled out before... but he's not eating... sleeping... fell this am.... but got right up and refused to be seen or go in... I counted the seconds... it get's to be 20 seconds inbetween breathes... then a long hard breath out... and his breathing is all abdominal now... not normal type breathing.... it's raspy... just have to hang in there I guess....  that's all I can do... you know when we first met I told him I would love him until he took his last breath... and I didn't realize how painful it would be to watch those last breaths...
Posted 4/6/2010 7:51 AM (GMT 0)
If you can get him to have hospice come in that would be so helpful for you.. a nurse comes to your home and checks vitals and tells you what is going on with all of the symptoms... They dont have to leave the house to go to the doctor visits, all is handled through hospice and the doctors on the phone... they will have oxegen sent to the house if needed and basically get you all medical supplies you need..

I dont know if it helps but I am the one that requested hospice, my husband didnt have any say in it...

 

Tell him hospice is for you not him, it is to make things easier for you--- and they will not do anything you dont want them to do, if you dont need one of thier services, you dont use it----

 

When Pauls breathing was bothering me, it was just as you explained.... just like sleep apnia, they suggested just being on oxegen and using the mask instead of the one that goes in your nose, and it did help him breath a littler easier at night... not saying that this is going on with you, but Paul started breathing like that about a week before he passed.. not trying to scare you.... just maybe you should move the doc appointment up from the 27th and seriously discuss hospice--- god be with you and take care, It is a horrible roller coaster ride...

Posted 4/6/2010 10:49 PM (GMT 0)
I agree with Don'tKnow.  Hospice also offers respite care for you to get out and do things you need to do and just get away for awhile.  Since Mike is not receiving treatment, it's only logical that Hospice be called at this time to help him and you.  They will also make sure he is not in any pain and will do something for his breathing.

Hugs,

Connie

Posted 4/9/2010 9:20 PM (GMT 0)
Sandi how are doing? Give us a wee update if you get a min, hope you manged to get some sort of support.
Posted 4/10/2010 8:39 AM (GMT 0)
We're hanging in there... hospice... will not be coming in at this point... and Mike is independent in everything.. so other than the mental part of it... we're fine... Mike is better than he was last week.. breathing better... and eating again... think he may have had a flu bug... I got something just right after that.... but.. we're in a holding pattern for now... and I know that it could go down hill fast... but for right now.. we're hanging on... Sandi... thanks all

Posted 4/10/2010 6:45 PM (GMT 0)

Thanks for the update, Sandi!  Glad to know that Mike is breathing easier.

Hugs,

Connie

Posted 4/12/2010 3:35 AM (GMT 0)
Thinking of your Arneeb! 
Posted 4/12/2010 5:34 AM (GMT 0)
Thanks for the thoughts... as each day passes .... it's a topsy turvy feeling... greatful he's alive... fearful he's getting closer to the end... four months out on a six month sentence... not knowing if the doctor was right... knowing with liver cancer and tumors untreated... he probably is... but now we're so used to living with the horror... that we .. just go on.. but at every new little thing... we panic.. wondering if this is the time.. if this is the one... and then we get through it and on we go again... at least the body goes.. the mind is numb... just going through the motions... and so it goes... Sandi ps... doesn't help that my family have abandoned me judging me for sticking by my little yellow man.. thinking I should in turn abandon him.. and I won't ..

Posted 4/12/2010 1:08 PM (GMT 0)
You have been through so much and are doing so well. Your little man needs you, you both will be very frightened at this stage , no one knows for sure how things will progress, it is hard to watch them suffer, you feel helpless. You must do what you think is best, what you feel in your heart, it does not matter what anyone says. He needs you and you choose to be there, that is your decision.
Posted 4/14/2010 10:48 AM (GMT 0)
Sandi I hope you are coping alright , everytime I switch on my laptop I think of us all going through this nightmare.
Posted 4/15/2010 1:10 AM (GMT 0)
thanx Allie... we seem to be in an ever backwards sliding motion downhill... he stabilizes at one point and then slips a little forther back... for right now... he's stabilized.... breathing still not good.. but stabilized..and it's just a day to day thing... I don't focus on it...I just go day to day...thanx for ur thoughts.. Sandi
Posted 4/15/2010 1:40 AM (GMT 0)
so now the psychiatrist has given up on Mike... and saying such rude things... Mike sees a psychiatrist for depression... the dr basically asked why Mike was there.... and said remarks like you look yellow... it just was very uncomfortable... he said we won't need another session will we?? just weird stuff... people really need to learn.. especially professionals how to interact with people who are dying... it hurts worse when they are rude... Mike is hanging in there... sandi
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