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Posted 9/19/2014 2:33 AM (GMT 0)
We will resume our Caregiver Thread here! This is your place to share with other Caregivers! Big Hugs...themiz
Posted 9/19/2014 3:50 PM (GMT 0)
I'll start. I have been caregiver to my partner of 33 years who has had Alcoholic Cirrhosis, Hepatitis C, Liver Cancer (HCC) and received a transplant in 2011.

For several years I was his primary caregiver through many hospitalizations, episodes with Hepatic Encephalopathy, through his AA meeting to get sober, through his TP evaluations, TP, post op period, three additional surgeries, and two Hep C treatment cycles...one awful and one that worked. I have driven thousands of miles taking him to the doctor 125 miles from our home, worked through the financial issues of liver disease, and barely kept myself together during his worst days, sat by his bedside more days than I can cound...sick as he was he was very very difficult, cross, angry, aggressive, unpleasant. It was hard to love someone like that. Evidently I do.

But, so far so good.

How it is going with your loved one? I'd love to help or just listen.

Mama Lama
Posted 9/22/2014 2:59 AM (GMT 0)
Since themister had TIPS (that shunt in the liver), his HE has been one insane roller coaster. 1.5 years seems like 1.5 decades. Things go along normal like, then all of a sudden he has that glazed, dazed look, and can not function. Anger pops up, and he gets clingy at the same time. Very difficult for him since his last hospitalization. So with that in mind, this week brought us a challenge.

On a transplant list, as many of you know too well...the keeping teeth healthy is so important. Well, I swear liver disease rots teeth right out of one's head! He had two start to fall apart, seemingly at the same time. He already had a partial for the back molars that fell out during treatment #1 years ago.

Anyway....he needed 2 pulled, 2 implants, another crown on the lower, and a new partial. His platelets are 77, so he is a bleed risk. Plus HE,....yes, that monster HE will go nuts on pain med, and anesthetic is a crap shoot. He decided to tough it out without narcotics if he could. The oral surgeon insisted on consult with the transplant coordinator to know about coordination of meds and anesthetic. They worked it out.

Themister survived...hahal. He took one Tylenol, and nothing else. How about this man? Fighting for his life and sanity, all at the same time. But he had pain, and he could not eat. There was some bleeding. I often wonder if I would have the courage to do it all....be sick this long with no guarantee...or if I would give up. I fear I would give up, which is a poor choice, of course. A few years out one long life seems very little to give up to live, really. We can do this.

So that is him.

Me. I am tired. Bored. And angry this week. Not angry at him, not tired of him. Just in general at where we are and how I am forgetting normal me. Normal us. Normal stuff...like fun. I had my monthly cry on the way home from the market, alone in the car and he did not notice my sunglasses on while putting food in pantry. I think this is healthy? Or at least understandable. I am human and know that I may loose him.

I get tired of cheerleading. So very tired of having our only face to face relationships with doctors, receptionists, pharmacists and the UPS man who delivers meds. I want to go out and eat a normal meal and not worry about sodium. Just for one day. He says he would go and have a salad or find something, but I know it is nearly impossible. Tired of cooking, tired of doing it all for both of our lives. Just tired. And angry this week. I get this way more than I like to admit. I do hope a good night's sleep will find me with some new perspective on this. Because we "get to go to the dentist" again tomorrow!! Big Hugs Caregivers. Hope tonight is good to each of you.
Posted 9/22/2014 7:37 PM (GMT 0)
The inevitable has happened. My lovely Meesh is in ESLD. We’ve had a sorted past with health issues. She got hep C from a blood transfusion at age 6. Discovered that she had it in 1995. She tried interferon, however it did not work. 4 years ago she was in an off road vehicle accident, due to low platelet count lost mass amounts of blood internally. She received 8 units of blood and platelets, this caused ARDS (Acute respiratory distress) and ventilated for 3 weeks. We finally got her home and have been doing alright, lately fatigue has been setting in and just last Wednesday I had to take her into ER due to aceties. He stomach was extremely distended swollen ankles etc. They tapped per on Thursday and she has swollen up again. They are tapping her again today. They also discovered that she is having problems with her diaphragm, it is only partially working. On a bright side she completely quit drinking 3 months ago. She was seeing a local Liver Specialist. I don’t know her MELD or many other numbers. I am having a hard time getting information from her nurses, and I work days when the Dr’s are there. I have asked the hospital to send me info for their patient portal and am still waiting….ya know it’s kind of funny. I always knew this day would come and tried to best prep myself mentally for it. It’s still tough and I find myself tearing up from time to time. I’ll be strong for her though, can’t show her the fear I am having. Thanks for your ears.
Posted 9/22/2014 9:10 PM (GMT 0)
Davmi,
Let me first welcome you to the Hep forum.

Thanks for sharing you Mesh's story and history. I hope you know you are welcome here...any time you want to post or update. We will try to keep the Caregiver Thread on the first page so it is easy to find.


And we have a sticky at top called Hepatitis Resources that may have something you find useful. Get her INR, creatinine, bili and you can calculate her MELD. Use this. www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

Sometimes you can register online for the portal....I actually can not recall how we did that, but themister was having a transplant eval at Mayo, and I know I got hooked up with that while he was in one scan or another.

Really good news about the sobriety and quitting alcohol. Documentation is needed with AA for transplant...if she goes that route. Again, welcome. Hang in there. Big Hugs
Posted 9/22/2014 10:14 PM (GMT 0)
I think the common trend here is how difficult it is and how even the caregivers almost don't make it. I feel my journey as my fathers caregiver has just really started.

He was admitted to the hospital last year in July and after lived a fairly "normal" life. His MELD stayed under 20 and the initial stage of being sober seemed to turn things around. However, the labs gradually got worse and we knew it was time to take action. Then all of the tests started, the classes, the going back and forth, the sleepless nights etc. Bringing us to date, his MELD as of today is now 23 (20 just weeks ago) He had to get his paracentesis yet again. It seems that he is needing the procedure quite often now. His 6th in the past 2.5 months. So as he gets close to needing it, there is a very noticeable downtrend with him. Days are getting tougher and tougher and the mental aspect of it all is sort of the thing that goes unnoticed.

TM, I know how you feel and yes it is normal (At least I hope) I have broken down more than I care to admit, and while being my father is a bond, I can only imagine what it does for a partner to endure it all.

I am however happy to say that all things considered he is doing OK when it comes to mentally dealing with this. I am sure he has moments to himself where things are bad, but up front he is trying hard. And as a caregiver that is usually the win for the day.
Posted 9/27/2014 4:46 PM (GMT 0)
bumping for martijean;) Welcome to the Caregiver's Thread!. Big Hugs
Posted 9/27/2014 5:49 PM (GMT 0)
I'm hoping my SIL joins us as well. Thank you for the welcome! All seems like sunshine and roses right now. It's great to know you all are here on the stormy days ahead...
Posted 9/29/2014 2:42 PM (GMT 0)
I'm Martijean1's SIL.. Joined for info but terrified at the same time. I'm looking for truth but please tell me every once in a while we will have days where life just feels normal. This is so surreal right now.
Posted 9/29/2014 7:20 PM (GMT 0)
Welcome Carolyn! I am really glad to see such family support for your brother and his recent dx of cirrhosis due to alcohol. I am really happy he started his documentation for sobriety requirement. Hopefully, he will have a couple of months documented for the transplant center by his first appointment.

Normal..lol, well, in our house we have a new normal, but that is a moving target the last few years. My husband, themister, was dx in 2005, stage 4 cirrhosis due to Hep C. Who knows how long this silent killer was with him, but likely, over 30-35 years. He did not drink when he was dx, not even socially. His only symptom was fatigue, and in a routine physical to figure out why his odd fatigue...they found Hep C. His MELD started moving up a couple of years ago, and things have been not much fun since then. We are both tired of it, frustrated, and wish it would go away. It is a high maintenance disease.

Normal? Mornings for themister are not that bad. Usually. That is when we make his medical appts. He can walk the dog most days, and sometimes help me get groceries. Good day...he will take a bike ride around the neighborhood. THAT is a good day! He is fighting for his life, and his sanity. HE and depression just stink. Both are part of ESLD. The HE, or fatigue will hit him daily, or the edema, or a combo of them all. He now needs a caregiver, because he could not do it alone. But this is called "stable" for him. I am grateful each day he is with me. But there are days I am so tired of this. Not tired of him. We get burned out.

It is a rollercoaster. You are welcome here! Big Hugs
Posted 9/30/2014 1:10 PM (GMT 0)
Thank you for the welcome. What a blessing to be able to connect with others in this situation. I think my brother felt good after his first AA meeting. He was shocked when I suggested he may want to attend several times per week. Currently the thought of alcohol doesn't appeal to him but I'm sure the cravings will return. I am trying not to be pushy but I don't think he understands the importance of him proving his commitment to sobriety to become eligible for a TP. I think he's under the impression that he may not need a transplant if he maintains a clean lifestyle. I'm torn because I think maybe his hope may trump the anxiety he would feel if he read some of these forums. Oops...new to this and I tend to ramble on.
Posted 9/30/2014 3:23 PM (GMT 0)
Good Morning Carolyn,
I hope someone is being honest with your brother about the 6 month "documented" sobriety requirement for transplant. Since his dx is cirrhosis caused by alcohol, he can not skirt this step, if he wants to try for a transplant. Not everyone on the list will survive to be transplanted, even with the best of care. Not everyone is accepted. You need to know that some people decide not to get a transplant.

We have had some heartbroken caregiver's here, Carolyn. We will be here for you, regardless of which direction your brother chooses.

I hope he becomes willing to get the documentation as soon as possible. But no one can do this for him. Perhaps you and martijean can go to Alanon meetings. I hear it is an excellent, free resource. Big Hugs
Posted 9/30/2014 5:39 PM (GMT 0)
I will look into Alanon. Thank you. I will make sure my brother has a clear understanding of the importance of documentation as well as sobriety itself. I appreciate your response.
Posted 10/8/2014 12:37 PM (GMT 0)
I have to give all the caregivers credit as this is a much harder job that I had anticipated being. From being nursemaid to mother with Laurie it is more than a full time job.
Trying to get her to understand that "Yes" I do need that medical power of attorney yesterday is frustrating as all get out. If she has another HE attack, like the last one and is unable to speak for herself as her caregiver and only being an "inlaw" I have no say in getting done what she wants done. I have printed off the forms for her, handed them to her, and we have had long discussions about all this, yet 2 weeks after the fact still no POA.

It feels like she has just handed over all the tasks to me to do, and wants no more responsibility with it, yet wont do what I need for her to do to be her representative with all this.

Another issue I am having is how others are accepting what I am doing for her. I have close family members who basically have turned their backs on me for my choice in doing what I feel is the right thing with her. Life with her in the past hasn't always been easy. From screaming matches on the phone to her threats of beating the heck out of me and on and on, however if I can forgive these things, and move on why the heck can't they. I didn't go into this with out a lot of thought of how this was going to affect things not only for her boys, but for myself and my husband. Just because I forgave her doesn't mean I have forgotten, and that the trust is there, that is something she has to earn from me. The actions of the ones that I love are just do dang hurtful and have me shutting down to them and putting my walls up, and I know for me this could end up not being a good thing.

Thanks for listening(reading) and any advice with this would be appreciated on how to deal with this without shutting me shutting down from others.

Sharon
Posted 10/8/2014 6:52 PM (GMT 0)
Sharon, Sorry about the family dynamics. It sounds really difficult. I don't know if this is your family, or her family, or both. But you might want to step back and evaluate everything again regarding your letting her live with you while she is ill. You get to choose.You need to really think through what you are up against with your new roommate :)

I am not sure you planned to do long term caregiving for a person with ESLD when she came home from her TIPS....with possibly a transplant down the road. Even then she would need to become medically stable from that. It may be many years, or one...or ten before that process is over, regardless of the expiration dates medical folks pin on people. Many here have heard those, and still here posting or caregiving :)

Not drinking is great for her and she may want to live alone again. Based on her MELD, and not drinking, and TIPS, she may get better day by day for some time. We had a Mod here, and our David that both did it all with no caregiver on board.

Caregiving is tough. No question. It is exhausting. It is one thing with a spouse, and even then it becomes nearly more than one person can do. Themister is my husband whom I dearly love. It still is the hardest thing either of us has gone through.

You hit on a very important topic. Directives!

We have POA on each other, as well as every other directive, wills, homes, bank accounts worked out. We have back-ups with legal issues ironed out due to other health issues, should either of us be unable.

But here is the thing. In your case, I would not be the POA for your SIL. You have too complicated of a history. A POA is for her benefit. She must decide to have one, or not. It is not for your benefit. You really don't need one, she does! And this makes it very difficult.

I strongly suggest....strongly suggest, your SIL have her own attorney deal with her directives due to the complications of HE for one... and your past relationship for the other. .

I honestly think it is a very bad idea to leave this one to a computer generated POA. It is up to her to have a POA, or not. The hospital will have to do what they do for those without POA's.

SIL is an legal adult. If I were in your shoes, I would not "accept" POA without a lawyer involved, and witnesses. We need to protect ourselves first. I feel so badly your families are such a tangle right now. I want to post this to you first, to ease your mind on the POA urgency. Big Hugs
Posted 10/9/2014 1:45 PM (GMT 0)
The family dynamics are a complicated mess to begin with, and it is my side of the family that is having a rough time with all this. They are afraid I am gonna get hurt in this and I can understand all of the concerns, but I am not a spring chicken and have earned the right to make this choice to take care of her. There was a time many years ago that we were very close but due to her drinking and legal issues that she got herself into we ended up with custody of her children. The issues we had were over the kids and our trying to protect them from the lifestyle she had chosen for herself and trying to give them a much needed stable life with out the domestic violence that she chose to live in.

I am the type of person who is a caregiver to anyone that needs it, and with seeing how things have settled down for her and progress she has made living here is worth it to me. I know that this is not going to be an easy thing to go through as she advances further into this disease. Goals right now for this care is to get her stable as possible and build a quality of life for her at this point and if she improves enough to get her in her own place but close by. She has a real fear of dying alone and with the life she has lived at her own choices is a real reality for her, and with the type of person I am, this is unacceptable to me.

Great idea about the lawyer for the medical poa. The reason I want her to have this in place is so that if and when it comes to have to use it her wishes are followed in the manner she has chosen. Right now if something were to happen and she becomes unable to state her wishes, her brothers that are scattered all over the east coast would have to agree on decisions and I dont see that happening.
Posted 11/11/2014 11:32 PM (GMT 0)
Bumped to the top to keep this on the first page. ML
Posted 11/11/2014 11:53 PM (GMT 0)
We haven't popped this thread to the top for a month. Time for our Caregiver's old and new to check in!



I am doing.....as well as can be expected. ~~Sigh~~ . The HE seems to peek out and ruin the best days without warning. Had to go back to pill and lactulose oversight. Because he went wonky on me this week. Put things that go in fridge in the pantry, and left forks in Tupperware full of salad. Not him at all! Became dazed and glazed....googley eyed. Then it went downhill from there.

Themister has spent 1 hour of the today getting ready for yet another doctor visit, 3 hours in the car, waiting room, or with the doctor. Back in bed other than that since 7pm last night. Mostly, sleeping. All of the ickiness of HE is living right here in our house :( Needless to say, pushing lactulose.

Sometimes I think the wind, or the sun, or the moon increases HE. Doing everything right, most days it works....and then there are days like this week!

We did get out of town last month for a 3 day destination wedding for our lovely family member. Beautiful, Beautiful time, and other than daily naps, all was groovy. Neither of us wanted to come back home. Lovely area on the coast, with someone else cooking, cleaning, and providing entertainment. It is scary to go that far away with this crappy health deal, but we needed it. His MELD remains mid-teens...and he continues to be as good as we can expect with ESLD.

How are each of you doing? Big Hugs all...
Posted 11/11/2014 11:57 PM (GMT 0)
Caregiving....it is not expected and handed to us. We accept and we are in for the long haul, then...well, poo happens. There will be so many times you question your own sanity.

I though alcohol must have been the cause, but even the docs signing off on that said there was no way she drank as much as would have caused where we were at the time.

So I thought, no prob, and when she was in the hospital so many times, weeks on end I got BLASTED at home, to sleep the sleep of the dead. took me a couple months to just go, um, ew. not good (besides, it was expensive!!)

So, then I looked another direction and found it. Not prayer, had enough of that going on around us in so many directions.

Nope, it was people and interaction. I stopped holding it in. I started to talk. I opened others eyes to a world they never saw. tragedy and love and hope and possible loss.

They held me up, I in turn, held them up as I came to realize that many around us had so much to deal with that emotional (and often, financial) help were all they could offer. But having a shoulder to cry on is so important.

We have to remember ourselves as we get lost in the miasma of paperwork, forms...doctors who show up once in a blue moon (TALK TO THE NURSES THEY ALWAYS KNOW! Be friends with nurses, and they will let you in on the truth) and never forget there is that other person under the HE. Which I came to think of as HATE EVERYTHING.

Keep yourself in perspective. I have to admit, getting a couple nights smashed actually helped me (DON'T JUDGE ME!) as it gave me a couple times I could just sit and cry and lament and just get it out. I would never do that around an alcoholic but that was not our case, only perceived as in the beginning of this.

That might have been why it was so hard on me since I knew that was not the prob and was being told it must be so the intimation that my wife HID and got trashed? I think I would have known, I take care of the bank, nope...money not gone. It took an after OP biopsy from a diff hospital to get to the truth.

So you will get it at home, you will get it at the docs, you will get it from the hospital.

All caregivers, remember who that person IS, not what they are being right now.

Remember the hospital and docs see a lot of BS so you will get categorized.

Remember to be their voice and see it to whatever end it may be, but make it the least painful, least traumatic and most respectful you can.

Most important, you WILL go into overdrive. Remember yourself, and give yourself a day off now and then. my best times for that was when I knew there was nothing I could do to help. As in a day of severe hospitalized HE. No point in me being there as she KNOWS me and got more agitated.

I learned later in that a nice day of just walking sited me well to have a 'day off.'
Posted 11/12/2014 12:26 AM (GMT 0)
How is your wife doing with the transplant recovery, rkayne? I remember she posted when she did not have the energy level she hoped for at one point. I felt she was doing very well for that soon after her transplant.


What meds is she on now and how is her activity and emotional level. We had one poster this week who is 6 mos post transplant and going back to work on the ticket to work program. Amazing!
Big Hugs
Posted 11/12/2014 12:37 AM (GMT 0)
She is on 3 MG of Prograf and 100 MG of Gabapentin and doing fantastic. Still very easily worn out. Very mentally there *(huge relief as where she was she should NOT be) and happy as she can be. Looking to start volunteer work to see where her stamina is. She is in that 1 yr to 1 1/2 yr heal mark as sick as she was. managing the autoimmune with anti rejection (derp, new liver and all, have to!) and bloodletting (ie*reg blood draws!) for the hemocromatosis. Never going to be a 100% sure on those but that is what the autopsy showed. So her fam has to think about that and get testing to see if they have those, as well!

All I know is, I got my baker back (big pus for a pro chef, I COOK, I am NOT a baker!) and she is kicking my butt in cards again. It was a hard journey, and still is as I am the paycheck that keeps us afloat. I see the light, though. Just got a nice state job, union, Assistant kitchen manager back in the space I was three years ago as just assistant to the kitchen. Side job at Whole Foods (I can't WAIT to use the 20% off!!!) and just having her alive. It was worth all the confusion, not knowing, being told she was going to die that week, and everything.

If they are your everything, then go with it and go all the way.
Posted 11/12/2014 1:07 AM (GMT 0)
Since she was sick just a short time, and she is at the young age of 40, I have full confidence she will do great long term! She is managing her AIH and Hemochromatosis, which is what one must do with chronic illness.

Her meds are getting reduced, and I do think volunteer work first is a very good idea when she is up to it.

Congrats on your job! Jobs!! Tell your wife hello, and that it is good to hear the update on her wonderful progress. Big Hugs
Posted 11/12/2014 1:24 AM (GMT 0)
What was so scary was HOW sick she got in so short a period of time. Things people see accumulate over years happened in months. Such a blow to the psyche. But all is well now, and this made us both so much stronger. I know we have it in us to enjoy life to the fullest.
Posted 11/12/2014 2:07 AM (GMT 0)
themiz,
From your post it sounds as if themister is only taking lactulose and xifaxin when he's showing signs of HE. I took it first thing, no matter how good I felt. And xifaxin, too.
Posted 11/12/2014 12:46 PM (GMT 0)
David,

Thanks for caring about us, David. I know you, like themister, spent years with ESLD and a mid-teen MELD. This month is 2 years for him stuck with mid-teen MELD and what they call "stable". (big breath). I will be brutally honest. If themister lived alone like you did, he would think he is fine. Drive. And be dead....times twice!

Themister takes two 550- Xifaxan and 4 doses of lactulose everyday. (lactulose 4 doses at 30 ml.....and more when he drifts)

The HE tells him things that happened yesterday, actually happened today....or visa versa. If I were not here seeing HE, he would not think he has HE. Or not think it was as bad as it is. He has a pill container, AND writes down his dose. Sometimes he thinks he pooped 3 times... and he did...yesterday. So all of this when HE is up and down....bleh. It really screws with our liking one another on those days :(

I hope today will be better. He was ok when he went to sleep, and he took plenty of lactulose yesterday. I will know pretty quickly when he gets out of bed....because his "personality" will be the worst of him, not the best of him. Such a sweet man and this stinks. Big Hugs
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