Caregiver to sister in law with Alcoholic Liver Disease and very new to all this but learning fast

Hello to all

I am very new to this issue and in the past 10 days have become caregiver to my sister-in-law who has end stage liver disease stage 3 but progressing to stage 4 quickly, hepatitis c stage 4, with issues with acitisis , varcicies, and just had a tips procedure done less than 2 weeks ago.

The choice to become her caregiver was not an easy one as up till 2 weeks ago we hadn't had a civil word to say to each other for well over 8 years ago when my husband and I received custody her her 2 children who were at the time 3 1/2 and 5 1/2. But due to her active alcoholism and her lifestyle it was best for the kids.

I received a phone call from a hospital in her location as she has listed us as her emergency contact and it was from the ICU department giving me an update on her. I believe even though she ask them not to call us it was the nurse's angel wings that had her call us so that we knew just how serious she was at this time.

After a long discussion with my husband I went to the hospital just to see what was going on. Can't say I wasn't a nervous wreck at this point about this decision. The aggressive alcoholic she had become over the years scared me big time and I had no clue what I was walking into. Needless to say I think this disease has changed her attitude and we spent the next 5 hours talking about things in the past and getting past them. I took a break during all this and called my husband and told him that I thought we needed to bring her home with us as I did not want her to die alone as she has alienated the rest of the family also, and the even though the past 8 years had been rough that I wanted to step up and be her caregiver. Speaking to the nurse that was taking care of her, he stated that she should not be going home alone when discharged as she was unable to take care of herself.

Hubby agreed and when I returned to her room I spoke to her about going home with us when she was discharged. But I did set some pretty stiff ground rules down as we spoke about this transition. Those rules being that she could not drink at our house, that I could not subject her children to that again, and also there could not be anymore drama that happened in the past, and if she could agree to those terms then she would be welcomed in my home for me to help take care of her.

This all happened on a Sat and on Sunday my husband and I went back to see her this being the first time they had held a decent conversation or even hugged in well over 8 years. I continued to talk to nurses and social workers to make this transition as easy as possible for all involved. She was discharged on that tuesday and was brought to my house at that time.

I have done a lot of research on all the diagnosis that she has and actually to some extent have become overwhelmed by all the information. Trying to find a doctor that would see her was also quite the hurdle as most in our area arent accepting new patients, let alone a new patient with all these issues. I have in process her doing a living will, advanced directives and medical power attorney so that I know what her wishes are as this all progresses.

She is currently confused with things and unable to complete tasks required to make decision as to what to do next as she gets overwhelmed and emotional quite quickly. I am trying to not be overbearing with her, but do understand that certain things need to be done to get her the care that she needs.

She says she has been dry for any where from a year and half to 6 months but cant give me a true time frame as to how long it really has been. She is confused with time frames as far as how long it has been since all this has started to spiral down hill for her and I think in order to put it all in order I need to get copies of her old medical records to see what actually has been said over the years as I believe she has been going through at least the bleeds for well over 3 years.

Just wanted to introduce myself and a bit about why I am here

Sharon

---I added some spaces to make it easier to read and updated the title so more folks would read your posts. ML Moderator

Post Edited By Moderator (MamaLama) : 9/9/2014 10:56:54 AM (GMT-6)

Sharon,

You have taken on a lot. Maybe your sister-in-law can help with her expenses at least along the way. She is soooo lucky to have a sister like you.

It is good that she knows she cannot drink at your house, and I recommend that you stick to your guns about the "one chance and you're out rule" about that.

Not everyone who drinks a lot wrecks their liver. But those not so lucky ones who have livers that can't take it can face a very difficult downhill slide. As you can see.

There are some posting here who have been at the brink of death, but with counseling and good medical care are here years later and doing well.

And there are love ones posting here who have been on the roller coaster with their loved one and faced the inevitable outcome for those who continue to drink or have gone too far before they stopped.

Did you say you found a liver doctor..not just a PCP or a GI doc? Livers are a specialty and those with the certification in that are your best choice. You said you had a problem with the docs not taking new patients. What you really need is a specialist at a major medical center, maybe a transplant hospital..not that she needs one just now, but those docs are the best. Once you have a workup, you only have to go a few times a year to keep the regimen going.

If you sister-in-law can get about at all, she needs to be in a program...AA or SOMETHING. If she makes it through this crisis and every wanted to consider transplantation, she would need 6 months of documented sobriety...not just sobriety that she self reports, but a calendar signed by the group leader several times a week for 6 months.

Since you are so newly returned to this family issue...alcoholism....it might be good for you to go to Alanon for a while...just to get your head on tight, what to tell the children, how to hold steady to your requirement for sobriety, what would you do if she slips? Etc.

I've been through this with my partner. He had Hep C, Alcoholic Liver Disease, and Liver Cancer....and was really really ill. We did not think he would make it, but he went to AA, got in a good liver program at Jackson Transplant Center in Miami FL, took alll the medicines, followed their directions perfectly, and lived long enough to qualify for and get a liver transplant. He has been sober 4 years this month, had his transplant 3.5 years ago, and was cured of Hep C this spring. In all, it has been a really rough 5 years....but we are both doing well now.

This could be a long ride or a short ride for you all....I hope you can do it gracefully...it will not be without bumps.

Hugs,
Mama Lama

Thanks all for the positive posts and here are some answers to some of the questions that were posed.

I do understand what the advanced directives and medical power attorney are used for, reasons for her to have these completed now is so that I can ensure her requests are honored if she becomes unable to make them known, as so others cant come in change what her requests are. I have a file for all these that will go with us to all medical appointments and any time she is admitted to hospital.

I do not know what her meld score is at this time but will get the numbers I need when she does have blood work done tomorrow. Like I said I need to get copies of other medical records so that we have them all in one place. The doctor that I was able to get her into at this point is a general practitioner and just a start here, she lived in Columbus and had a large variety of doctors that were looking after here there, but I have moved her 3 counties away and almost 2 hours from there, I plan on utilizing her liver doctor in columbus and hoping that the new doctor and the old doctor will work together also. She has in the past been spoken to about going on the transplant list but has done nothing up till now to do anything about it.

Current meds at this time are lactulose twice a day, lasix 40 mg twice a day, zofran for nausea, oxycodine for pain ( but was only given 10 at discharge)and a couple of others that I will list later( she is currently resting and dont want to risk waking her)

As far as sticking to the ground rules, she has been told that if she cant follow ground rules then she will have to go to either an assisted living or nursing home if she is unable to care for herself and cant follow these rules that have been set. I know that meds can alter personalities and will have to deal with that as it comes and goes. I also have a support system set up for myself and for the kids as we need it. Alanon and alateen are also in the planning also.

SIL is on disability so she does get a monthly check so that will help her be able to pay for some of her needs, I feel that if she can provide for herself it will help her mentally.

I have family members who are active in AA and have offered to take her to meetings if she chooses to go, but that has to be her decision to go, I can suggest but cant force her to go.

She seems to be in a spiral down again, as she is complaining of shortness of breath and sleeping a lot today. No swelling anywhere, says she is just feeling bad. Has stated that this is how she starts to feel before she gets admitted to hospital, and doctor cant advise as he has not even seen her yet. So hopefully we make it through the night with out an er visit.

Will post more tomorrow after we have seen the doctor

Sharon

What is she admitted to the hospital for Sharon? Lacutlose is given for HE, so I hope they sent her home with Xifaxan as well, and instructions on additional Lactulose as needed to get the 3-4 loose bm's per day. You can not overdose on Lactulose. The combo makes for the best outcome, and makes all of your lives easier.

Let us know how it goes tomorrow, and perhaps the GP can refer her to a local hepatologist. Sleeping too much can mean she needs more Lactulose...it can also be kidney problems. Go to the ER if you are concerned. It is worth it to know for certain!
We care, and I am so glad you have a support system for yourself as well. Big Hugs