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nursing home care for end stage liver disease

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Posted 10/16/2005 3:14 AM (GMT 0)
Hi. this is my first post. I was in tears as I read all the stories that are all too familiar to me. I feel for anyone dealing with liver issues. My mom is 79 and has ESLD due to cryptogenic cirrosis. She has stage 4 varices, ascites which we drain every couple weeks give or take, and encephelopathy that varies in severity. She takes lactolose at least twice a day and lasix and furosimide. She also takes supplements including milk thistle. Her ammonia level has been as high as 300 at her worst and has been pretty good for a while now. She has lost ALOT of weight and is getting a skin and bones appearance minus the belly and occasional swollen ankles. She has several other medical problems that I won't go into right now.

We've been doing the best we could at home for about 2 years and recently we moved her into a nursing home. It has been the hardest decision of my life and I thought it was the right thing and due to things that are happening with her there I'm not so sure anymore. Has anyone had any experience with a loved one in this or similar condition in a nursing facility?

 I'm not sure they can handle the low sodium diet, low liquids, bowel movement accidents, weakness, confusion, and all the nuances of her condition.

Please help!

 

Posted 10/18/2005 6:28 AM (GMT 0)
I don't have experience with nursing facilities specifically with liver disease but I do with just general care - my experience wasn't great - there were too many patients and not enough staff - Are you unhappy with the place she is in?- you look around in your area maybe you'll find a home type facility - some people convert homes into care facilities and take in just a limited number of people and the care is better - I don't think it costs much more than a regular care facility - or even just a smaller nursing home - Now I did have one good experience - My Great Aunt was in a very nice facility she got great care and I'm sure the diet wouldn't be a problem - they had a great staff again not enough...
My advice - make yourself present - the patients that have family there and checking on them regularly receive the best care - If you can go a few times a week - even just once a week for a good visit, will help - also don't wear yourself out - my Mom and I would go every night to see my grandma and after a few years my Mom just couldn't do it anymore and stopped going - it sounds terrible but she should have paced herself more - it just became too much

Has your Mom been living with you for 2 years? Is she in hospice care? I ask because we have moved in with my Dad and he is managing - he has ESLD from drinking - he doesn't have any symptoms besides the fuzziness in his head and is only on lactolose - he has been getting stronger each day but he definately could not live alone at this stage - even if he got a bit stronger I would be worried - I don't leave him alone for very long because I'm afraid he will fall or try to walk to the store - he is in hospice care - any tips for me - what does my future hold?

All the best - good luck - I understand how hard a decision it was for you - my family had to do it twice - (my grandma and great aunt) it was agonizing - My father-in-law lived with us and now we are living with my Dad - getting old sucks
Posted 10/23/2005 9:46 PM (GMT 0)

Thanks for your reply.

mom  was living with my dad and I was there every day and I arranged for other home health care for her there. She isn't on Hospice yet because she stiil has days that she is pretty alert and can get up and walk around, if she gets a small infection, I'd hate her not to get the care cause she's on Hospice. since my post mom was hospitalized because she was unconcious and they couldn't wake her in the nursing home. Her ammonia level was 149, the next day she passed a fist sized blood clot and has a uti.I feel like her health situation got away from them for her lvel to get that high, as you know it's controlled by the lactolose and by paying attention you can ward off the spikes.I wish the nurses knew more about liver disease than me, but they don't; I'm not sure if they want to learn.She went back yesterday to different floor, so we'll see.

As far as what you can expect, I wouldn't know. Everyone is so different and the liver disease process is so long. In my first message, I've listed my mom's case, I guess your dad could experience any of this.

It sounds like you've been through a lot, Good Luck! If you have a specific question about your dad, I'd be happy to help.

Posted 10/25/2005 1:20 AM (GMT 0)

I'm sorry about your Mom - Nursing home care is so hard to manage - I wish I had more advice or a secret tip for you - How is your Dad doing with all of it?  How are you is it more stressful now than when she was at home? 

My Dad doesn't have any bleeding yet his symptoms don't seem as severe as most people list - he got the call from the nurse today and his a bit anemic and he has a Dr. appt. Monday so maybe we'll have a clearer picture.  I do wish had a crystal ball but I know I just have to take it as it comes.

Thanks and good luck with your Mom

Posted 10/27/2005 1:14 AM (GMT 0)

So far so good this time. I think they are paying more attention now. Dad is doing okay, he goes to visit every day. I do think he is lonely though. I try to visit when he's with mom so I'm not running all over town and I still see them both.

Keep me posted on your dad!  Thanks.

Posted 11/8/2005 6:37 AM (GMT 0)
I'm glad things are going ok with the nursing home - if your dad is there every day that should help.  Could your Dad come over to your house for dinner just for company, just and idea.

Hang in there.

My Dad is feeling good - almost his old self but his body is still weak and he has started retaining fluid and the water pills are bad for the kidneys so he can only take those for a short time but mentally he is good - we are all enjoying each other it has been a good week:)

Posted 4/16/2006 8:45 PM (GMT 0)
My mother in law is living at home under hospice and with her ammonia level rising each week she isn't feeling good at all.  She has the encephalopathy and is bed-ridden.  Lactolose is given three times a day.

Posted 4/16/2006 9:20 PM (GMT 0)

Hi Lee-San,

Welcome to the forum; you will receive support and helpful information.

My husband is also in home hospice care. Right now we are awaiting a visit from the nurse and chaplain (for me) to get us through this crisis. Gene's latest problems result from iron toxicity caused when a lab error showed iron levels low when in fact they were normal. For the past six weeks my husband has been on a rollercoaster ride. We are hoping that having hospice services available will spare trips back and forth to see his Doctors and get lab results.

I hope your hospice experience is positive. The jury is still out on the Hospice we selected but it's been less than two weeks and they are trying to work things out for us.

You are in my thoughts and prayers,

Barb

Posted 4/16/2006 10:05 PM (GMT 0)

your angel

  I have not had to experience putting a loved one into a nursing home,but I have worked in several nursing homes. As a matter of fact,I gave up being a nurses aide because I would feel so bad at the end of the day,I didnt feel like I had the time to do my job properly.  One thing that you might check into if the nursing home isnt working out is adult day care,,,or a private nurses aide to help dad out at home.  Also,if you decide to get her out of the nursing home,there is such a thing as respite care,which means that you can put them in a nursing home for a week or so at a time,,just for a break in the caregiving. If you decide to leave her in a home,please do as mentioned above,make your presence known there. Pop in at odd times of the day,and on different days of the week. Also ask to see a schedule of when your mom is bathed,nails clipped,,ect. I know that in some homes,ppl are awakened in the wee hours of the morning to be bathed,,especially the ones that cant speak for themselves,or whose family doesnt take an active role.  Also,most nursing homes have drs who are regular ones for the home,but you can request her own dr to be in charge of her care. Hope this helps and good luck..,,

trish

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