Caregiver's Sharing Thread II

Hepmom, people with hep C can and do have normal enzymes for decades before symptoms arise.  Once symptoms arise (usually overwhelming fatigue is the first), the enzymes will be elevated.

Hugs,

Connie

It IS a very individualistic disease, as is liver disease in general.  My only symptom (aside from slightly elevated enzymes) is fatigue.

Hugs,

Connie

ML here.

it is 11:45 PM Saturday.  Just back from hospital.  I took hubby to E.R. this afternoon as he was really worse. they started him on 2 additional diuretics Thursday at GI appointment.

He has pitting edema to his knees and ascites in abdomen.

By today he was a complete mess.  Sleeping.  Shaking. Gray. Yellow tinge in his eyes.  Gagging. Not eating or drinking. Just sleeping. He woke up from a nap and asked me to take him to the hospital.  So we went and they kept him.  His counts are off the chart...but for his ammonia, which was 17 this evening.  2 weeks ago 114.  Last week 67. today, 17. that Lactulose took the stuffing out of him, but really worked!  GASP. 

So good news and bad.  There he sits with gall stones.  But he is still sober.

then he started with a fever AT the hospital.  they shot him up with IV fluids and IV antibiotic and he started feeling better almost immediately!

But he keeps telling me things I should know for when he dies.  Before we got in the car today for the drive to hospital he took me outside to show me where we need a spigot for the hose and then reminded me the name and phone numbers of hte plumber and air conditioning guys he uses. 

Scarey. 

But I have an okay feeling tonight...that he's gonna rally.

Emma:  Glad to hear you got through another threshhold! Day 19 is 8 minutes away.  ML

ML-I am sorry to hear the difficulty you and husband are having now.  I am glad that he is in the hospital receiving the care that he needs.  Be sure to take care of yourself...rest, eat, etc. so that you can continue to be strong for him and yourself. I will be sending positive thoughts to you and your husband.

~Emma

Connie-I agree with you.  I have reservations about him keeping this job too...but this is something that I have to let go and put my trust in God...

take care of yourself!! and my thoughts will be with you today!! Sandi

ML, thanks for the update.  I'm so sorry I somehow overlooked your note to me above.  It's a little confusing sometimes when you quote a post.  Anyhow, the member I was speaking of posts under the name of Timeless (real name Rick, which he also uses.)  He actually posted a couple of times this weekend...first time in a long time.  He has always kept his sense of humor.  Interestingly, he was misdiagnosed with hep C by a country doctor.  Turns out he only has cirrhosis from drinking, but he has been alcohol free for well over a year now...probably closer to two years.  He is no longer on the transplant list.

The title of the Stephen King book is On Writing, published in 2000.  The ISBN number is 0-684-85352-3.

Hugs,

Connie

Bumping to the top for newcomers.

Hi everyone sorry I have not been on for a while, major issues at home unfortunately.
Quick run down on my mum she still is in hospital that is twelve weeks, she is in specifically to detox and get strong.
I have had periods when the doctors thought she would not be fit to go home to her house because now she has been diagnosed with alcohol related brain damage and was showing signs of dementia. She did regain some of her memory, and was starting to walk with her zimmer until 2 weeks ago when she took another seizure and had to be transferred to ICU as the seizure lasted over an hour, they could not get her to stop. This has set her back again, she is back in the wheelchair, not knowing what day it is she is very confused and distressed. Bad news they have diagnosed epilepsy and have had to increase the dosage of medication so she is even more confused, and to top it all she still has severe pain in her hip and since the seizure her opposite foot has 'dropped' and drags along the floor. so she has many issues before getting out. Anyone any ideas on what has happened to her foot?
She does say she will not drink but she might at a special occasion, so that is another thing to think about in the future.
Hope everyone is well only had time to read a few posts.

hi everyone i have already posted on the main page about my parents problems,especially with the driving.Iam so frustrated as he acts like a 2 year old when we try to take the car keys off him.I have to respect that he has up to this point always been a strong man in health an mind,an now he doesnt know where he is half of the time,an trys to hide it.Iknow he is definatly not drinking.However he remains stubborn an insists he will be ok in a day or 2.My sister an myself took the keys off him when he insisted he could still drive him an my mum to the seaside 80 miles away.He sulked an screamed at my sister saqying she was treating him like an old man!!!Well i tell you all now we wont be lettting hi get away with this attitude in the future,he has put my mums life at risk this week.The car came back from thier trip away an looked like it had been battered,an he still drove it back from 80 milkes away.He fell whilst away an my mum fell with him trying to hold him up.Mum came home with a broken foot an bruised an a big gash on her face. i cant beleive i have no control over our dad,an usually i am in control an can organise a lot of things in my life,but at the moment i am so angry with dad for putting mum an otheres lives in danger,an he wont listen,just shouts an agressive.His whole personality has changed.THIS is worse than dealing with my son when he was a teenager.However something stops you from tussling with ya dad to try an reason with him,to get the keys out of his hands,hammering on the bathroom door when he has locked himself in there "to get a bit of peace"as he calls it.Do i get tough or do i just leave him to it.just had to tell you all this i am so upset.I am forty six years old an cant seem to cope at moment. spooky x

Spookyjan, Well I guess instead of all the arguing all the car keys could just dissapear while you contact your liscensing department to revoke his driving privaleges. Driving is the toughest thing to give up! It did a number on Doug when I had to revoke his keys, I gave him 2 options 1 Give them up willingly 2 Have the state take them cause he killed someone or himself! Yeah he gave them up! Wish you luck.

Sue

Gee Jan I can so relate to you when you say you never raised your voice to your dad and then you looked at your mom....

I found myself being stern with Mike and having very firm boundaries with him... and I felt so uncomfortable... cuz ours had always been a very traditional relationship with him leading... however I did sense some relief from him towards the end... and he seemed more comfortable then... the fear in his eyes subsided...like he knew it was ok to give up the reins...but I remember so clearly the feeling of being uncomfortable at first...but it took a lot of stuff off his shoulders... anyways... u hit a nerve there when you were talking about that... brought back a memory... and yes this is what this thread is for... Jan.. we're here... just be yourself... well take care Sandi

Good evening to my fellow Care Givers. This week is seeming endless. Have spent last 4 days at hospital with hubby, or getting something to the hospital, or running an errand related to the hospital. And tonight picking his daughter from New England up FROM the airport and taking her to the hospital for a quick but late visit. she was a wreck all those miles away.

they say he has peritonitis. That can't be good with all the other stuff going wrong with him.

So both are tucked in for the night and I write my whining message. I am SOOO tired. But still I think he'll rally. This is the beginning of the 4th week of sobriety. Tough way to get cleaned up. I hope and pray he feels more like himself soon. But NOT to feel so well he thinks he can beat the odds and drink and have liver disease and not die in short order.

Since ammonia down he is his sweet self again. Off to bed. Best to all who are going through rough times. Mama Lama

Blue eyes, I can relate to ur story, Im 38 and moved my dad from out of state into our home of 5. The doctors gave him 6 months to live, and I did not want him to die alone, I am also a nurse, he has been here almost 2 yrs but he has significantly gone down hill FAST  within this last month or two. I too grew up really not having a father he was always drunk or beating on my mother not any good memories of my dad, it hasnt been until he moved in that we really formed a good relationship. he was really ugly to me today, and I just keep wishing he would just pass, but then I feel SOOOOOO guilty for thinking that, but then I have to remind myself it isnt going to get any better. He is on hospice, end stage liver failure, and liver cancer. I really hope youget some help, I dont know what Id do if I didnt have family who helped me. That s one thing Im grateful for. My husband has been very wonderful, he too thinks its his own fault, but he also knows he my dad no matter what. Do yall have kids?  I just remind my husband, one dad we can only hope and pray our kids do the same when we become old and ill, setting good examples for our children. I do pray for you hope you get some help and that ur husband will stand by you, thats so imporatnt and very much needed during this time.

God Bless You !!