Caregiving

Hi Linda1277
Welcome to the forum. A moderator will be a long soon to welcome you. I read your post and I too had this same question earlier this year, but didn't have the forum crew to talk to then.
My hubby has ESLD and sounds like he is now about where your's is as far as ability to make a simple meal, sleep schedule and dressing himself. I now leave him alone to go to work. He has a cell and so do I. I just started back to work after taking 6 months off to take care of him as he was worse and I was so worried...Probably a bit overprotective myself. (But in that 6 months there were times he really couldn't have been a alone.) The biggest problem for us is that he can't remember to take him meds and lactalose timely...or at all. That is a lot harder to monitor now that I am at work. I truely struggle with this going back to work and leaving him, but we really have few other options. His family is over 1200 miles away and we live in a very rural area where services are either slim or non existant.
From about Feb to August the longest time I left him was 1-2 hours, but I think the regular healthy meals and the consistant timely meds helped him get a bit better. We don't have a weekly nurse or hospice. He won't agree to even be evaluated for a transplant so don't know what his MELD score is, but he has not been hospitalized (other than to tap off fluid one time..outpatient)(and for the diagnostic liver biopsy.)
This is how we have handled it and I also wonder if he should be an assisted living situation or adult day care, but neither is available anywhere close to us. People here seem to just struggle by trying to care for their loved ones at home. I don't think my hubby would be happy in assisted living as he has always lived around animals (retired elephant trainer) and they are a big part of his life here still. Hope this helps ...I know when we started this journey in Feb (which is when his symptoms got bad...or he crashed..as they say)I keep thinking the same thing...how do people do this and work. I couldn't do it and was lucky that my mom helped us through the last 6 months, so I had the ability to stay with himmmmmm (sorry, kitty is on keyboard)
I always worry when he is home alone, but have posted my cell number on our door and all over the house, so hubby can find it...and have it on speed dial (but sometimes he can't recall how to work that). Anyway, I'm sure you will get ideas from others. Hope this is helpful
Angie1953

thank you both for your reply.  I kind of thought he could be left alone but I'm so overprotective.  He had fallen 8 times in as many months with low sodium and at times high ammonia, but now he seems better since we have a nurse checking him weekly and getting his blood draws weekly.  I guess we'll have to see how he's doing in Feb 2012.  again thank you this blog has been a real blessing.  There's nothing like it. 

Linda1277
So sorry you had to look for a place like this, but it has been so helpful as I deal with hubbys ESLD to converse with those that have gone before or those that are going through the same or similar situations. There is so much knowledge available here, I am so relieved to have this forum available. I know you will find it helpful. Welcome. I am a candle lighter and will add a candle to burn in the evenings for you and your husband. I have a whole tableful and they are beautiful.

Angie 1953
"It is better to light one candle than curse the darkness."

Hello Linda and welcome to HealingWell.

As with liver disease.......being a tough balancing act. So is caregiving for people with it. Back when my husband was sick.......I still had to work, the insurance was through me. I had to keep my job to keep the insurance. Fortunately back then I had a supervisor who really worked with me. Like if I had to go in late I could make up the time at the end of my shift. Or go in early to get off early. If I needed a day off I could work on one of my days off to make up for it.

I did file for FMLA to protect my job though. It was my safety net......it took one stress off of me.

We rented a house from his brother who lived next door and if I was worried or concerned about my husband I could call him and have him or our nephew check on him...which I hardly ever did. I would call my daughter first.

It was tough. I felt like I was between a rock and and a hard place for a long time.

My husband loved to cook....I had to ban him from cooking once the encephalopathy reared it's ugly head. I worried that he was going to burn the house down with him in it.

One thing that is imperative Linda is that you really have to take care of yourself though this. If you don't you will burn out or get sick yourself. Get in some ME time......I know you are saying.....there's no time for me now.....But a few minutes a day even works wonders in keeping yourself healthy through this.

Glad you found us.......take care........thoughts and prayers.........