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Posted 6/22/2008 5:42 AM (GMT 0)
I posted awhile back about my sister (hep c/end stage liver failure) and my trouble dealing with her encephalopathy. I did appreciate all of the responses and I apologize for not saying so.  Tonight I read Jenna's post about her sister and it really struck home.  She is being such a good sister and I feel so guilty.  My sister was diagnosed with endstage liver failure in Dec ('07).  She is currently on the transplant list.    I did as much as I could, but the last few months, I feel like I can't take this anymore.  I am so torn.  Over the years it seems  like I have done so much for everyone else (starting with my parents 20 yrs ago).  I have been through the heartache of lies and disappointments with my sister when she was drinking.  She has never gone a full year without a drink.   I have been there with my heart and my time for her, my other sister, my neice and nephew and I don't think I have anything left. (It's a long story...but the past 4 yrs has been 1 crisis after another with sisters, niece,nephew,husband)  I feel so selfish.  I want time for me...to take care of my family (8 & 9 yr old).  I can't seem to keep my head above water.

   Last week, she wanted to kill herself.  She was so depressed and didn't want to live like this.  Tonight she said her "boyfriend" is moving out.  She can't afford the rent by herself and isn't sure what to do.  I have no idea what to do.  

    She made lifestyle choices over the years that I didn't agree with (including her "boyfriend")  How do I get past the resentment?  I am tired of suffering for other people's poor choices (and having my children suffer too)  She can't live by herself...financially it would be hard...but mainly her physical condition.

    Her last MELD score was 16.  I take her next week and she'll have more blood work and a new score.

    I'm sorry. I guess I was rambling. I know there aren't really any answers.  

Ann      

Posted 6/22/2008 7:44 AM (GMT 0)
Ann:

Could be no one has the answer, but at least you can get it out of your system and vent a little. I know it helps me even though no one can really do much for the disease. Your doing your part by taking her for her labs. That in itself is of great help. You do need time for yourself. My time is from 11:00pm-4;00am . I don't have the responsibilities of my own child any more he is an adult. I don't know what to say. Except take care of you . Your right she made her own choice. Some of us don't get a choice. Take Care
Posted 6/22/2008 8:14 AM (GMT 0)
Hi Ann,

It's not fair that you are put into this situation. I'm sorry that you need to deal with this. Please forgive me for offering unsolicited advice:

I believe that your first responsibility is to your children. They really need you -- more than you can imagine. I have three grown children and a granddaughter in high school, and your children are at an age where they need your attention and wisdom. Once the hormones kick in, it will difficult if not impossible to reach them. So IMHO, you need to take care of yourself so that you can take care of your kids. Again IMHO, that is not selfish, that is living up to your responsibility.

Only you can decide what role to play in your sister's care but I would suggest that you explore whatever social service organizations are in your area. Because of her limited means and advanced disease, there should be options that will free you up to some level so that you are able to care for your family.

Please don't attempt to take on the full burden of your sister's care. There are many caregivers here on the forum who can give full attention because they don't have children in the house, and still they are often burned out.

BTW, I am a patient with a MELD of 13 at last check.

Regardless of what you choose to do, please do stay in touch. And don't worry about rambling or venting. It those were forum crimes, I would be in forum solitary confinement with no hope of parole.

Please be well, John
Posted 6/22/2008 3:02 PM (GMT 0)
Hi Ann,

I am sorry that you like I are going through this with your sister and I truly know how you feel.
I have, had and will again feel just as you are describing, so like you, I am unselfish at times and very not at others, which is human.When I feel the weight of the world on my shoulders and for something that my sister realizing or not realizing chose for herself I really take a step back and try to do something for myself as I know i need to recharge my batteries.

The advice you are getting is correct, your first obligation is to yourself and your children, as they truly need their mom. I am sure your Sister if she were truly in recovery would get that and you need to not let anyone make you feel bad about choosing you and your children over your sisters needs at times. I have found that their are times I can be there for my sister, probably more than you can as my children are grown and my significant other works a lot. It has clearly interfered with my work and that is a balance I still struggle with. Another big difference is my sister has been in recovery for 4 years, so I have dealt with the feelings I have about the years of drinking, drugging that has brought her to this place, I recommend alanon if you have not already tried it, it really helped me deal with my anger for her lifestyle, as well as some other siblings and like I said, my very dysfunctional family, me included :)

I hope that things settle down soon for you and I keep coming here for support as this is happening to you too, not just your sister

((((((((((((Hugs))))))))))))))
Posted 6/22/2008 4:31 PM (GMT 0)
Ann, I am a caregiver and I totally agree with John, your children should be first. As a parent of 3 grown girls everything you do now they take with them forever. I am also an adult survivor of alcoholic patrents. Please you have the responsibility of nuturing those young people, If you feel the need and obligation to help your sister, take her to Drs when needed ,maybe make some calls to get her help. The social worker at the transplant facility may be able to help. If she is sober and participating in her care she maybe able to go to a half way house or whats called a rest home( at least thats what its called here). Also be honest with your children as to what is wrong with their Aunt and even the cause of her illness. Those babies need you and you need them, some great memories are created at these times, I am so thankful for my children my baby(24) has to see her mummy daily, the middle one(32) calls daily and is here 2-3 times a week, my oldest (34) is 14yrs into her military career and she still calls 2-3 times a week no matter where in the world she is. They are your blessings.
Sue
Posted 6/22/2008 9:54 PM (GMT 0)

Ann, I agree 100% with John and Ann.  You have to take care of yourself first, or you will be no good to anyone.  Next in line of priority would be your children.  There is help out there for your sister.  The suggestion to talk to the transplant social worker is an excellent one.  They have knowledge of what would be available to your sister and can help her get lodging, food stamps, Medicaid, or whatever she needs and qualifies for.  As a former drinker, she may be able to get into an AA halfway house, which would be good for her as they have mandatory in-house 12-step meetings.  (I'm a sober alcoholic and have lived in a number of halfway houses.  Their one requirement is sobriety...or the offender is kicked out.)  You might also try finding out if there are Federal HUD apts. in your area.  There is sure to be a waiting list, but she may as well get on it.  Try looking in your yellow pages under Social Services.  You may find an agency there that can help in some way.  The point is, there are things available to your sister that she probably is not even aware of, and that would free you up from carrying the burden or feeling guilty because it's just too much to take on.  BTW, one slogan I learned in AA and love is "Don't should on yourself!"

Please come back and let us know how things are going.

Hugs,

Connie

Posted 6/23/2008 5:07 AM (GMT 0)
ANN< If your sister is not already collecting SSDI get that started and also she is considered disabled at this point so in most states she can take a priority status on some form of housing assistance. I know it helped us to get affordable housing, I do live in a complex with some rough teens but I got the word out quick that they need to stay away from the front of my apartment and vehicles!! Since then it is great but it does take alot of calls and pushing. There are many programs out there social workers can be an asset but they even need a push sometimes. Good luck
Sue
Posted 6/23/2008 11:03 PM (GMT 0)

Sue, that's interesting about the priority status re: housing.  I am on the waiting list for 2 senior complexes at the beach, but was told the wait is a year or more.  They do know that I am on SSD and what my disabilities are.  The only thing I was asked was if I require special equipment, services, etc., if I live there.  I have my own equipment and services in place, so I answered in the negative.  I am glad that both complexes have elevators, as I have stairs where I am, which often present a problem when carrying anything heavy.  Maybe it's worth a call to find out if disability status would move me up the list.  It is becoming outright dangerous here--break-ins, purse snatching, even some muggings...not to mention the rowdy teens, etc.  This was a safe and well maintained place when I moved here 9 1/2 yrs. ago, but the past 2 years it has gone down the tubes.  I kept hoping we would get a manager who would turn things around, but nobody is ever here long enough for that to happen.  So I have surrendered to the idea that I will have to move.  I had planned to live out the rest of my life here.  Just goes to show that you have to be flexible.  The only thing we can be sure of (aside from death and taxes) is change.

Some social service listings I found here are as follows:

FL Dept. of Elder Affairs

FL Agency for Health Care Administration (SSDI)

Area Agency on Aging of NE FL

Alzheimer's Association

Ann, your state probably has these same things available.  Look under State Government and also Social Services.

Hugs,

Connie

Posted 6/26/2008 3:53 AM (GMT 0)
Connie, I think how it can work is you can no longer survive in a walk up situation and according the the American Disabilities Act you should be afforded a safe accesible environment to live and work. Make some calls be your advocate.... go girl.
Sue
Posted 6/26/2008 1:28 PM (GMT 0)

Thanks for clarifying that, Sue!  I think I should qualify based on that.  I know I could switch to a downstairs apt. here, but I've always preferred being on the 2nd floor, with nobody over me.  I feel safer up here, too.  Also, the cats love the balcony.  When I do move, I am fairly certain I will only take one cat with me, if I can find a vet to put down the other one.  He's 18 1/2 and has lived a very good life with me, but is becoming more than I can handle.  They also charge a $300 pet deposit.  Not sure if they even allow more than one pet.

Thanks again!

Hugs,

Connie

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