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Posted 2/5/2012 8:38 AM (GMT 0)
I sit here late tonight as I have every night for the last few months taking care of boyfriend who has end stage liver disease.. Hepatitis c and scirois . I am tired and worn out and total exhausted with no sleep.. Everyone says take care of yourself , and you are not in this alone.. I am alone in this as his family and nobody else is taking care of him..I am doing the job that 4 people generally do in the hospital... I haven't been out of the house in 3 months except to take him to many doctors and hospital all many miles away..I can't stop crying... It has taught me that under no circumstances do I ever want family to take care of me.. It is heart wrenching. My heart goes out to anyone who is dealing with the same situation..

Post Edited By Moderator (hep93) : 2/5/2012 9:18:38 AM (GMT-7)

Posted 2/5/2012 11:25 AM (GMT 0)
I was exactly in your position... and would repeat the advice that you hear... you have to take care of yourself... otherwise you have nothing to give... the moderator will be along soon there is a caregiver's thread... can you share some of the background with your boyfriend's ESLD.... also... have you taken care of things like power of attorney... end of life wishes etc... there is no good time to broach the sujbect but here again I have experience with this and was very glad in the end that I was prepared... because it can go very quickly from being a caretaker to the social worker asking you questions that you have no answers for... you need to find other resources for support... I'm sure some of the others will come along and provide some other suggestions... my heart does go out to you... you do need to care for yourself.... Sandia
Posted 2/5/2012 2:18 PM (GMT 0)
Sasskin,
Hey, I know exactly how you feel. I was taking care of hubby 24/7 for 10 months and was just so tired worn out and crying ...and angry. Like you, I had people say "take care of yourself" and I just wanted to scream "then here you take this job for two days and give me a break"...but there was no one to do that...just like you.

I tried home health care and that didn't really help, they wanted to teach me to do the things I was already doing, and would come once a week for an hour, not to watch him, but to teach me to do more. And in a moment of HE, he told them he wasn't being fed and we had no heat. Great.

What I wish folks would understand is I needed help with the simple stuff, grocery shopping, getting his meds, getting my house cleaned, taking garbage to the dump, etc. I did have some friends drop off soup several times and talk about helpful ..it sounds simple but helped out a lot. I wasn't very good at asking people to help me, either.

Sassykin...I finally just couldn't do it anymore and looked into getting hubby into a nursing home for a while while I take a break. The first month was very hard, as they couldn't get his meds right, and were very unresponsive to his needs...but after constant monitoring and me having meetings with staff a lot (b___hing), we are now on a pretty even keel. It isn't the perfect solution, but...workable. Is your bf on disability or SSI? Medicaid? NH is costly, but if he is on medicaid they will pay for most of the cost if the Dr. determines it's necessary. You will have to tell Doc that you just can't do the care anymore though, or need a break.

My hubby was understanding of fact I needed a break and we agreed to try Nursing Home (we call it B & B) for 30 days and then reevaluate, we are now on our second 30 days and I am starting to feel a bit rested, and when I go to NH daily, I am not such an emotional wreak. I have a better outlook and so does he. ...But we do have all in place for end of life situations.

I feel like you...I would not want to inflict this on anyone else, if I were sick. Many days HealingWell has been my lifeline, and it seemed to help me to be able to write out what was happening and hear others struggling with the same situation...although breaks my heart to read some of the stories.....especially those of you caretakers and ill partners who are so young or have young children.

One thing that helped me, was that I checked out free movies (sometimes 10 at a time) from the library and when I needed a break put on a DVD and watched...many times it took many times to see whole movie,,,as hubby needed something...I fell asleep, etc. But was something I could do at home, gave me a break and wasn't stressful (But no scary movies...life right now is scary enough.)

I am thinking of you and know that feeling of "I just can't do this for...how long..forever..??" Thinking of you this morning and hope you keep posting. Many of the ideas on this forum helped me a lot. I care about you and really do understand that horrible desperate feeling of no one to help and people telling you to take care of yourself. The feeling that your life has gotten lost and your future looks bleak. Thinkng of you this morning and hope you find 15 minutes for yourself sometime today.
Angie1953
Posted 2/5/2012 2:45 PM (GMT 0)
Hi Sasskin,

I was in your shoes for a long long time. Though I did get some breaks as partner's daughter came to town several times to "relieve" me. I took a few days and went off with friends to just REST.

I think I cried a river. The work was endless and his afffect so negative it was hard not to be angry! By October 2010 I found this site and it saved me from myself. To know that the situation at our house was not unique was so important. To share some of the crazy stories, and to find others had equally bizarro experiences was helpful, hopeful.

Hospitalizations, complicated medication routines, failed visits to the toilet, vomiting, and all those appointments with him half gone...it is a wonder we got through that.

But get through he did, through all those AA meetings, through all those doctor appointments, scans, meds. In May 2011 Mike got a liver transplant, the gift of life, from a generous donor family. 9 months later it is hard to recall how AWFUL the 2 years before transplant were. I am glad he made it and glad I made it. Sometimes I doubted either of us would.

It is unclear to me whether there is any chance of transplant in his case. Is there?

My thoughts and prayers go to you both.

Mama Lama
aka Carol from Florida
Posted 2/5/2012 3:47 PM (GMT 0)

There is no hope of a transplant..He just turned 54 and with the hep c virus it would destroy a new liver.. The dr's have not given me any hope of that and it is too late now.. Hospice says  he can go into a coma anytime now..

Posted 2/5/2012 3:59 PM (GMT 0)
sassykin
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Thank you for all your replys.. That in itself helps.. I tried to get him to care of the business end of it all and being the stubborn man that he is he did not do it.. Now already it is too late .. He is going to die with the state stepping in, probate, and the family that he did not want to get anything will get it all. They are in a different state.. Some of his assets are there and some here.. He is fading fast and there is no hope of any kind of recovery.. I may not be able to take care of him during the end.. I need help but don't have access to the financial end to give him the care he hoped for..Nobody understands just how hard this all is until they have been here... I tried to get him to have all of this covered but he did not. He kept thinking it will get done not realizing that others would not be able to jump into it.. He did noty assign any beneficieries to anything..You can imagine what a mess this is all going to be. It was his birthday friday and he cried that none of his family cared enough to even send him a card.. It broke my heart to see his tears.. I know he feels the pain even though he is not coherent.. I am afraid to make any noise and it wake him and then he will want to get out of bed . He fell 3 times yesterday and it took me several hours to get him out of the bathroom last night. I have the fear he is going to wake up and try to pull out his cathether.... I am constantly emptying the cathether and they have me crushing up xanax and oxicodone to keep him sedated now. So much red tape and with it being weekend and everyone off I can't seem to get the help that is needed for him..
Posted 2/5/2012 4:11 PM (GMT 0)
Sassykin, welcome to the forum. The above is your post that you had on a new thread. Always add on to your original thread when you reply. Of course, if you want to add a comment to someone else's topic, you can do so. I also gave your thread a title.

Sassy, I'm very sorry that your b.f. is so sick and that you are in this alone with no help. It's too bad he didn't get treatment for hep C before it came to this. Did he also drink? Otherwise, there is no reason he couldn't get a transplant with hep C, although he may be too ill at this point. I have hep C and also had cirrhosis and liver cancer for the 2nd time, and exactly because of those conditions I got a new liver on Oct. 27th of last year. I'm also a lot older than your b.f.

Is your b.f. on Lactulose? I imagine if he is end-stage that he is having episodes of hepatic encephalopathy. That medication will help to make his mind clearer.

Also, if he is really near the end of his life and no life-saving treatment is available, I suggest you call in Hospice. They will be a big help to you. They can provide nurses (around the clock near the end) and set up other care to relieve you, like respite care. A doctor will need to refer him to Hospice.

You really should check out the Caregvers thread on here. There are so many people in the same situation you are, who are very supportive and can help you navigate the pathways of this disease and offer suggestions.

You didn't answer the insurance question. Does he have medical insurance?

Hugs,
Connie
Posted 2/5/2012 4:27 PM (GMT 0)
Thank you connie....I have hospice care for him now...but it just started friday and with the weekend here I cannot get any help til monday.. He has had hep c for 15 years.. In his younger days he was a wild man and drank and did drugs as so many do when they are in the music business.. He has tried treatment for hep c twice but neither worked.. this last bout put him in crisis immediately and made him go downhill fast.. it was ribrovirin, incivek and pegulated interferon.. He dropped fast when he started this program leaving him with 22,00 platelets and all nutients robbed from body.. the program had to stop it was killing him.. Stubborn as he is he did not want additional insurance and he only has medicare.
Posted 2/5/2012 4:48 PM (GMT 0)
Sassy so sorry that you are going through this... Mike was 53 when he died from ESLD... it was cancer that did him in ... we were at the Mayo for transplant evaluation... and the cancer had grown so that he was not a viable candidate... Mike did not want hospice... however he did not have many of the issues you are facing.. some but not all... I'm glad you were able to get hospice to come in now... that should help... I will keep you in my prayers... my email is in my profile if you would like to talk .... I've been in your shoes... Sandia.
Posted 2/5/2012 6:02 PM (GMT 0)
Sassy, I'm glad you have Hospice involved. I know they will be a great help to you in the days ahead. Be sure to ask for respite care, as you need to get away for an hour or two whenever possible.

I wasn't in the music business, but did the same things your b.f. did. However, I have been clean and sober for decades. I'm really sorry that he had such a hard time on Incivek treatment. I've heard that the side effects are really bad. This is likely what I will be on once I've healed more from transplant. I hope I will be able to handle it.

I only have Medicare and am seen at Mayo...got my transplant there, but have been going there for 6 yrs. Their charity fund picked up my 20% balance for several years. I will apply for their help again sometime this year.

Hugs,
Connie
Posted 2/5/2012 10:20 PM (GMT 0)
Sassy,

I am sorry that you and your BF are going through this.  I agree with the others you need to get some time to care for yourself.  You haven't mentioned too much why your BF is not eligible for transplant.  MamaLama (Carol's) partner was very very ill, but he was able to hang on and received a new liver last spring.  You might want to search out some of her older posts to read about their journey.  There is a search box in the upper right corner.

Prayers for you and your BF.

Emma

Posted 2/6/2012 12:32 AM (GMT 0)
Sassy,

Mike has Hep C. He got it from drugs as a young man. He also was a drinking man. He has been clean for years and sober for 17 months. He got a new liver 9 months ago, just months after they found a tumor on his liver also. He was so lucky.

He went from death's door to amost normal in that time!

He still has Hep C. That will need to be dealt with at some point. For now, he is recovering and his Hep C isn't bothering his liver counts. His viral load is really high (69million copies), but evidently that has nothing to do with how he feels. So he is being really quiet and thankful.

Sorry you are in such a rough place.

Hugs,

Carol
Posted 2/6/2012 2:08 AM (GMT 0)

Hi Healthynow

He cannot have a transplant because of a back injury and two titanium rods in back.. He has been on oxicotin and oxycodine for this pain . We were told that he is not a candidate because of the drugs he needs for any kind of relief are too radical..

Posted 2/6/2012 2:10 AM (GMT 0)
Sassym My husband has Hep C and is in ESLD. He got the virus from a blood transfusion as a teenager, and even with minimal alcohol use ended up in ESLD. We are currently at the transplant center awaiting transplant. He is next on the list and in real bad shape. He will have to have the virus treatments after his new liver is placed.

Is your BF by chance a veteran?

Hospice is a wonderful thing at a very rough time. My thoughts and prayers will be with you!

Debbie
Posted 2/6/2012 3:39 AM (GMT 0)
Hi Debbie
No he is not a veteran and with the pain meds he is having to take they won't consider him for a transplant.. He is on the meds for life..
Good Luck Debbie.. I am happy to see that some are getting transplants
Posted 2/6/2012 5:25 AM (GMT 0)
Sassykin,

 Hope you made it through the day without a major problem.  Am thinking of you as I clearly remember how bone tired I was when hubby was home and I was doing everything.  Just got something done and on to the next chore with no end in sight.  I know the feeling. It really makes it hard being the GF, if he didn't do a Power of Attorney for you, so you can't do any of the financial stuff.  Am thinking of you, you are not alone...even if we here at Healingwell can't be there in person for you, we can be your support. Sometimes is just helps to know there are others going through similar things. 

  I cry at the drop of a hat.  Seeing a couple together will do it.  I just try to be there for my loved one the best I can.  This is a messy business and there are no guide books, each situation is so so different.  We probably are not going the transplant path either.  My hubby seems to be unable to commit to an evaluation, but I, like you, am glad to see that some are getting transplants.  Hope you can sleep tonight.

Angie1953

Posted 2/10/2012 3:18 AM (GMT 0)
Thank you Mary and Angie

He is not doing well and the hospice nurse said the end is near.. His family is having him cremated with no service or anything... That really saddens me... I am trying to be nice but the anger for his brother who is here is starting to build.. this visit was nothing but a seek and find paper work expedition..They are very anxious to get their greedy hands on his assets.. I know it all will be over soon but in the back of my mind I keep hoping for some kind of miracle .. I suppose that is normal.. it hurts so much to lose someone you love.. Thank you all for your support..
Posted 2/10/2012 3:39 AM (GMT 0)
{{{{{Sassy}}}} I am so sorry. Hospice is very good at knowing when the end is near, as they deal with death all the time. They will keep him as comfortable as possible. Try to ignore his brother and family and whatever they are doing, and just focus your attention on the time you have left with your b.f.

Hugs,
Connie
Posted 2/10/2012 3:56 AM (GMT 0)
Sassykin,

  So sorry you are going through this and that his brother is not more sensitive to the both of you.  It is so sad to lose someone, but what a great GF he chose...to hang in there with him through one of the roughest situations.  Much of your anger must also be about knowing that you will soon loose a person so close to you.   You know, you can have your own ceramony upon his passing.  Something or somewhere that was special to just the two of you.  (We have talked about that ourselves.)

  Wish I could be there to give you moral support.  I think what you are going through is one of the hardest things there is...to be there and help someone move on and love them through it.  (Not everyone can do it...I hope I have the strength to do it when it comes time for my hubby to go.)

   Thinking of you and sending you strength, patience and compassion. 

Angie1953

Posted 2/10/2012 11:12 AM (GMT 0)
OH Sassy my heart goes out to you... yes I experienced the "family" thing too.. Mike and I were not married... we had all the legal things in place Power of Attorney or I venture to say I would have lost more... his "family" helped themselves to things at the funeral home... rifled through his closets... and said oh you don't mind if I... take this or that... mind you.. Mike didn't have a thing when we got together.. I bought I would venture to say 99 per cent of what was in our home... then it was Mike would want me to have that tv etc... I was armed with his will... however... I was unable to stop some of the pillaging... and this happened during the viewin... funeral... and the lunch at the house... horrible... horrible... when I was so vulnerable.. trying to be helpful... yet... anyways... yes not being married and not having things put down legally can be awful and even when you do it's not easy...
that said I followed Mike's wishes to the letter... we were given time to say good bye... he is my heart... my love.. I will pray for you in this process.. we are here ... Sandia
Posted 2/14/2012 2:06 AM (GMT 0)

Thank you all for your  kindness. Joe passed away. He is in a place where there is no more pain and suffering.  I am grateful that I was able to carry out his last wishes... I  have arranged to have a memorial service on Saturday the 18th of Feb unfortunately none of his family will be there.

Posted 2/14/2012 2:45 AM (GMT 0)
Sassykin,

   So so sorry to hear about Joe's passing, but like you say he traveled to a better place for him.  My heart breaks for you, but I hope you can take solace in the fact that you were there for him, and will be able to carry out his last wishes.  We should all be so lucky to have a loved one as devoted as you during our last days.

  I will be lighting a candle array tonight for he and for you.  I do hope you can find peace about his passing.  Thinking of you and be sure to keep in touch when you just need to vent, to share, or know that someone is listening and cares what you are going through.

  HUGS TO YOU   <  cry  >   < cry  >     < cry >

Angie1953

                               

Posted 2/14/2012 3:01 AM (GMT 0)
{{{{{{{{Sassy}}}}}}} So very sorry to hear of Joe's passing. As has been said, he is now in a place with no pain. I know the coming days will be difficult ones for you, but please remember that we are always here for you.

Hugs,
Connie
Posted 2/14/2012 3:40 AM (GMT 0)
Sassy-
I am so sorry to hear of Joe's passing. Take comfort in that you were there for him.
Hugs and Prayers,
Emma
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