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Posted 7/15/2009 2:50 AM (GMT 0)
Hello,  today is my first day on this website.  My sister has advanced liver failure and may have about six months left.  I've been taking care of her now for almost two years and I'm worn out.  I'm glad I found this site because it helps me feel not so alone. 
Posted 7/15/2009 4:30 AM (GMT 0)
Hello BarbL64, and welcome to HealingWell. I am glad you found us also. I am so sorry about your sister. Caregiving is one of the hardest jobs on earth. It takes it toll physically, mentally and emotionally.

You need to take care of your self through this.....or you will end up sick.......Is hospice involved? They are a great organization. You need to have a little respite to recharge your batteries.

Welcome again..........thoughts and prayers...........
Posted 7/17/2009 3:43 AM (GMT 0)
BarbL64, Welcome to Healing Well. I am sorry about your sister. You feel alone. I'm glad you have the chance to talk about your day to day activities, endeavors with others who understand. Not only can you feel relieved that someone is listening,  you will realize that you are not alone. I have realized through Healing Well that I am not alone. After I joined, I felt a sense of relief.

There are people on this site who have been through this or are going through this right now as we speak.

This I know, because I am one of them.  I, too have a sibling who is just about at the point where he needs a person to be with him always. Your sister is very lucky to have you. There is no place like home, and home is where the heart is. I commend you for this. Please, continue to come to this website, you will have someone to talk to about this always.

Posted 7/17/2009 5:38 AM (GMT 0)
Today I found an empty bottle of Vodka in my sister's room. I guess she made her decision on how much longer she wants to live. I just went through this with a friend of mine and now I'm not able to save my sister from herself. It really sucks to know that no matter how hard you try to give them the proper care that they have the power to undo it all.

just a little frustrated but I"m trying to turn myself back around and take care of her as I promised I would do too the end.
Posted 7/17/2009 6:46 AM (GMT 0)
Frustrated. I think you're sister? doesn't, that's not the word.......I think what is happening to your sister right now is something she has no control of. I believe, deep down that your sister knows how lucky she is to have you. In her darkest moments you are there in her mind, in her heart.

I know my brother lives in my heart. I know this. I cannot get mad at him. I don't want to pity him. He doesn't want anyone to pity him.

I could say that I want people to feel what he feels. To try to put themselves in his position. To know what it feels like to have something controlling you and think of nothing else. I have never once heard him say that he wished he could turn back the time. Each day is a chore for him. I can feel this.

Each time the hospital helps my brother get clean, it's nice to see his shining eyes. I know that for that short amount of time that he is well enough to go for walks, enjoy a good meal, make fun of his neices and nephews, he really is appreciative.

These are some of the joys you can share with your sister......and you can also remember them when she cannot.

Conquer the small ships, leave the big ones for last.
Posted 7/18/2009 5:02 AM (GMT 0)
thank you for posting. I do try to keep positive, it is just hard sometimes. We went back to the emergency room today. She took about twenty sleeping pills. She okay now bet they are keeping her overnight just in case. I'm going to start taking over her medication now so she doesn't miss anything and to make sure she doesn't over take again.

A new day, a new challenge. With a little rest tonight I will be up for.
Posted 7/18/2009 5:08 AM (GMT 0)

((Barb)),  I am so sorry that you are going through this with your sister.  I know how hard it is ......you are a wonderful sister........

Take care.......thoughts and prayers....

Posted 7/18/2009 6:20 PM (GMT 0)

Barb, do you think that was a suicide attempt, or that she just wanted to sleep and kept taking more...or forgot how many pills she had already taken?  I'm sure you know that the combination of alcohol and sleeping medication (even at the correct dosage) can be a lethal combination.  If she had been drinking and took that many pills, she very well may not have survived.

When I was in the latter stages of my drinking, I found that it would not even put me to sleep (or, more accurately, allow me to pass out.)  I was still working and would get frantic looking at the clock, knowing I had to get up in a few hours.  One night I kept drinking and popping more anti-depressant meds (another bad combination), and at some point was aware enough to get scared...afraid I might not wake up.  So I called my shrink and he sent an ambulance to me.  By that time, I had slipped into unconsiousness and was taken to the hospital where I was revived.  However, I spent about 5 days in the hospital and lost my job because they found out why I was there.  That incident was enough to keep me from taking too many pills again, though it was another 2 or 3 yrs. before I stopped drinking.  I'm just relating this story to tell you I remember what it was like to be desperate for sleep and to try to get it that way.  At that time, though, I didn't know I had liver disease.  Since your sister knows she's sick and you are trying to prevent her from drinking, it could also have been a suicide attempt (I've had those, too.)

I'm glad you have taken over the meds and please do be vigilant about her alcohol use, too.  She may have some stashed that you don't know about.

I know this is hard on you and you must be exhausted.  I commend you for hanging in there with her.

Hugs,

Connie

Posted 7/20/2009 4:20 AM (GMT 0)
I don't think my sister was attempting suicide.  I don't think she realized that she was taking so many.  Probably just kept waking up and taking some every few hours. 

She is going to be in the hospital at least a few more days.  She caught MRSA so is being treated for it.  They are also watching her kidneys because they are getting worse.  We went from extreme water restriction to not drinking nearly enough water.  I would guess part of the problem is the lactilose and the water pill they give her for the congestive heart failure. 

We were suppose to go home next week but now I'm afraid to have her travel so far.  home is a three and a half hour flight followed by a four hour drive.  We would only have a small town hospital if anything happened.  I just can't see an entire week without her getting sick.  She is pretty mad at me right now but I'm only looking out for what is best for her and my 85 year-old mother.  Mom just isn't well enough to deal with everything that could happen. 

thanks again and again for the kind words of wisdom so many have shared with me. 

Barbara

Posted 7/24/2009 3:52 AM (GMT 0)
Hi Barbara, I hope that you are getting some rest and taking care of yourself. If you don't take care of you, you cannot take care of your sister.

You have quite the dilemma brewing, travelling the distance to get back to "home sweet home". It might be beneficial to weigh  advantages and disadvantages to travelling this distance. The one disadvantage I can see is the one you pointed out, 7 1/2 hours of travel time. Second, more and frequent hospitalizations. Advantages, she is getting the best/adequate care. You have seen to that. However, you may be forced into a decision sooner than you think.  Prepare yourself,  you can do this.

Have you ever thought about local placement near the hospital, where she could get the care needed and not have to travel that amount of time with each hospitalization? This is a question that you may be approached with. Have you discussed or asked your sister what she wants, feels or thinks? It seems that you two have a close relationship and the lines of communication are open. If you stay one or two steps ahead of this dreaded disease and all of its complications, you may save yourself from a great deal of anxiety.

Someday, I think that we will be able to look back and remember the laughs we shared with our siblings and the fear that accompanied this diagnosis will fade from our minds.   You are not alone.  You are stronger than you know.  Don't be afraid.

Posted 7/28/2009 5:20 PM (GMT 0)
Hello,

I cancelled my tickets back home because I didn't think she would stay well for a full week.

Yesterday I had her son drive her down to S. Califorina so that she could see her daughter and two grandsons. But I could see that she was starting to get bad again. I told him to take her because I don't think there will be another trip in the future for her. I also told him to get her back here if her walking got any worse.

There are only three care homes near the hospital here and non of them would take her. Way too many health problems. We only had one place that would take her and it is about an hour away. We will probably end up sending her there but it all depends on how fast her health deteriorates.

I would like to start hospice but she hasn't fully excepted that she is dying. At least I got her down to see her grandkids.

I'll keep ya posted
Posted 8/2/2009 12:04 AM (GMT 0)
Hello Barb63. I've been worried, wondered why I hadn't seen any posts. We are, it seems have both of our hands full. On one hand, I have 3 children and a husband. On the other I have my brother. He has encephalopathy. The ammonia in his system has travelled to his brain. The doc has now confirmed this. His balance is off, he is agitated most of the time. No appetite.

You are truly stuck. You must feel helpless. I think that if we take it one day at a time, we can do this. I know that sisterly love is unconditional and now I am being tested. I don't know your religion, but I always to find myself referring to that saying "God only gives you what you can handle" and it doesn't make it right but it gives a sense of comfort and confidence.

I cannot begin to make the decision you have made, for my siblings and I have decided to make it a joint endeavor if you will. We will take care of him in his home, when he can no longer refuse care. I am prepared. Or, I think I am. I wish you luck. Helper of Mankind. Reality of it all is that in life there is ups and downs, it may be our turn.
Posted 8/3/2009 3:42 PM (GMT 0)
Dear Helper of Mankind,

Your quote about brothers and sisters is so fine. I have a twin brother and two sisters. I love them dearly, but also love the distance we live from each other too.

Dear Barb

I read your later thread, but answered this one. This situation of ESLD and what it does to the family of the person involved is one of the hardest things I've ever been through. I count my blessings each day now, though, because I FINALLY understand that health and family are two things we must nurture and cherish.

Take time for yourself. Talk to your sister about your lives. She may enjoy the reminiscing.

Take care.

Joan
Posted 8/7/2009 10:07 PM (GMT 0)
my sister is in a care home now and has started hospice. we don't know if we are coming to the end or not but we do know that she doesn't take proper care of herself if she is home and I can't be there 24/7 to watch her.

I want her to give hospice and the care center a try but if she is really unhappy and her health is stable I would bring her home.

Unfortunately she has internal bleeding that no one has been able to find so I don't think she will be coming back home. The internal bleeding is conected to the live failure. Her platlets keep dropping and so when they go below 20000 she will bleed out. The doctor said that the tranfusions won't help much longer.

I'm actually a little more relaxed now that I'm not watching her all the time. Sometimes I feel bad for relaxing. Crazy rollercoaster of emtions.

barbara
Posted 8/7/2009 11:27 PM (GMT 0)
Barb, thank goodness your sister is now in the care center!  I know how burned out you were, and she will get great care with hospice.  You are entitled to relax now and try not to worry.  Get out and see a movie or get your nails done!  Her condition now is really in God's hands.

Hugs,

Connie

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