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Posted 9/17/2011 10:25 PM (GMT 0)
Starting another one since we are at 4 pages.

Hope everyone is hanging in there.
Posted 9/17/2011 11:03 PM (GMT 0)
Natasha,

  Glad the calming candle helps.  I was thinking about you and your family last night.  I and hubby are cruising alone smoothly the last several days.  Other than the day he took a sleeping pill..Ambien (see post entitled Ambien and ESLD) we are doing quite well.  Yesterday and this morning I spent some time helping a friend pick her grapes at her vineyard which was a nice break from caretaking, then veggie shopping at the farmers market with my Mom.  When I got home hubby had done dishes, and cleaned up a messy project I dreaded, so it has been a good several days.  I even got to take a nap this afternoon for several hours....hey...that calming candle worked for me too.  smilewinkgrin   

  Tonight I am going to a documentary movie on the "real" horse whisperer (movie called Buck), but before that I am going to go pick up 10 bales of hay for our horses.  Last 2 days seem like back "before Feb 22" (diagnosis of hubby's ESLD) when I had a normal life.  Natasha, thanks for asking...by writing this down I recognize that I am doing better about taking care of myself.

  Will be thinking about you and hoping for "easy days" for you.  I decided to light a candle for your Sister in Law tonight...The Strength candle....to give her the strength to take your hubby back.  This candle smells like leather...yes leather, a bit funky, but smells like strength to me.  (I need a candle icon !!)  Take care, remember to do something for yourself today.  Something that makes you smile. (I really have to work at this one somedays.) 

Angie1953

Posted 9/18/2011 6:27 PM (GMT 0)
connie, thanks for the advice on the previous caregivers thread. my other sis in law did have surgery to remove the shattered verterbrae (another bad spelling)! she now has a back brace to hold the metal rods in place and may possibly need another operation in six weeks as she also has brittle bones and they are not sure if the rods will hold!.
as for hubby and his head sores, no he definatly does not have h.i.v.. he dosent wash all that often anymore so maybe its down to a build up of dirt? he is losing his hair rather rapidly over the last 18 months so it could also be to do with that maybe?.
he has been so pleasant for the last two days its quite surreal, he has helped my five year old make a model for school and they were out in the garden together, sawing and cutting and sticking, all the things that a dad should do, it was wonderful to watch.i took lots of photos as i do when there are any happy moments because one day thats allmy boys will have and i want them to remember happy things and not just the bad.
i hope this next week things wont go back to how they were at the start of last week. i struggle to keep up with the amount of personalities hubby has going on at the moment, let alone what the poor kids must think! oh well fingers crossed!.

angie, thank you so much for your support. i believe those candles are working and im sure my sis in law needs all the strength she can get at the moment. i really feel for her. she is my angel. i am glad you managed to get some time out, it really helps to take the weight off your shoulders for a while dosent it!!.
i include you and your husband in my prayers every night and hope things stay calm for a while for you both. its strange to imagine that time when the onlly knowledge i had of the liver is that we all have one!! ignorance is bliss eh?!!!.
take care of you and the rest will follow.

hope everyone is getting by ok.
xxnatasha.xx
Posted 9/19/2011 3:23 AM (GMT 0)
Natasha, I would think that the hair loss is a result of the head sores, not the other way around. You might try an astringent, such as Witch Hazel, on them. He also needs to wash his head and hair more often. But what he really needs to do is to see a dermatologist. I just don't know if he would do that.

Hugs,
Connie
Posted 9/19/2011 4:31 AM (GMT 0)
I Just need to Vent:
I am working on accepting that "things have changed". This (disease) is not what I signed up for....I am angry that my husband is someone I barely recognize intellectually...and I am angry that even if we go to a movie together, we can't discuss it because he doesn't make sense, I am angry that he feels useless and is able to do so few things in life that he feels it's not worth trying a transplant.
Today my 84 year old Mom told me, "Things change, you are just afraid of change and are having a hard time accepting it." I had to smile because of all the times I have told her that same thing, regarding cellphones, computers, Ipods, cable TV, changing apartments, changing hairstyles, etc. She is right, I want my life companion back and it doesn't appear to be in the cards,,,and tonight I am angry about it. (Perhaps I am only to the ANGER stage of grief??) Wish I could get past it !! Thanks for listening to this Caretaker Vent. I don't read much from others about being angry and wonder if you all have been there and are past it or if you just didn't have the anger come up? Any coping strategies would help. Hope all have a peaceful night...(I need to light my Accepting Change Candle ...oh yeah...I don't have one....yet.)
Angie1953
Posted 9/19/2011 5:17 AM (GMT 0)
Angie, is he still refusing to be evaluated for transplant? If so, you have a right to be angry. The very thing that can keep him alive and give you your husband back, he's refusing to do. I don't get his not at least being evaluated. Instead, he's just going to give up and die...and trust me, it will not be a nice death. Kind of hard to accept that.

Hugs,
Connie
Posted 9/19/2011 3:28 PM (GMT 0)
Angie,

Oh yes, the anger was definitely part of our life, but it was several years a go....I think we went through about 3 years of it before I basically gave up. The bottle always won the fights, as you know it can be way more persuasive in their minds than their loving family and friends. It's one of those fights that I think we all have, and then have to decide, do we stay, or do we go....I stayed, others did not.....It is just a personal thing for each person. I guess I kept hoping that the man I loved would someday realize what a hold it had on him and he would put it down on his own. But as you know, we never got there in time....

I think the anger is normal, but just a part of accepting what we can't change. If you need to be angry, then be angry...It's ok...and just keep hoping!

My thoughts are with you!

Posted 9/20/2011 12:37 AM (GMT 0)
Angie, anger is a big part of it for a caregiver when alcohol is a major part of the illness. We have all been there done that.
Sometimes I would get so angry I could choke him. After we had grandkids he changed.....but not without a lot of prodding from me. I told him one night.....go ahead and keep drinking.......and your granddaughters will not remember you when you die and I will not help them to remember you either. It got to him.......he loved them so much. So he did stop drinking. But unfortunately not quite soon enough. But he fought long and hard......and my grand daughters do remember him...and love him to pieces as he loved them..
I think one of the things that keep them drinking is that they are scared.......some people can deal with it and some can't. The ones who can't need lot's of help to realize that just because they caused it themselves by drinking, that they are worth fighting for and worth loving. They believe it's hopeless . It takes a lot of love and understanding for them to start believing in themselves again. JMHO

There's a song out about a woman with cancer... and her husband saying that he will be strong when she can't be....can't remember the name of it but it's one heck of a good country song. I cry every time I hear it.

Thoughts and prayers...........
Posted 9/20/2011 6:59 PM (GMT 0)
hey all, whilst we are on the subject of anger,,,, aaaaaarrrrrrrggggggghhhhhhh!!!!!!!1. i too am having one of those days. hubby just is not getting how to butt out, stop, or the general jist of anything, mr nice one second then nasty horrid rambling the next, its horrible, its upsetting my kids (especially the older one) and to qoute p.g; i wanna choke him. i feel like i am trapped in a life i did not willingly enter and am being held prisoner by liver disease. i cannot breathe, i have no other options and i feel like i am drowning in chaos.
that said, he has just fallen asleep again and i know i will regret feeling this when he is not here any more. then i will have to face guilt. grief. regrets. my gosh, i hate this. i hate that he created this for us. i want him to tell me why.

i am so sorry to go on this mass rant but i feel like i am going to explode any minute. please please would you all include me in your prayers as i need to make it through to sunday. i truly do not know how people do this to the end. you are the worlds angels. may god forgive me but i cant do it.
i hope you are all as well as you can be.
xxnatasha.xx
Posted 9/20/2011 7:11 PM (GMT 0)
Natasha-big hugs your way. You will get through to Sunday. You are strong. Just keep on with it. You and all my "liver friends" are in my prayers every day. Praying for health, peace, understanding, wisdom, understanding. More coming your way.

Emma
Posted 9/20/2011 8:08 PM (GMT 0)
Re: anger.

I try to give it to God, as I know Her.

But it is still there lots of times, hiding for just the right moment to seep out.

My Mike has his transplant and a second chance, but still there is plenty of walking on eggs around here, especially during this last bout with the medication reaction. He returned to some of his more difficult pre-transplant behaviors...and I feel angry. I feel like...what about ME for a minute. I could use a hug here!!!!

Like, for example, why am I taking the little anxiety pills...when he is the one who is sick? Well, my family calls the little pills my "don't strangle Michael today" pills.

The guy has been through so much, is sober, has his new liver and I'm still struggling...don't I get it? His ups and downs are part of the disease! "I am a good person. He still has Hep C and he is doing the best he can." Note to self: Say that 100 times a day while meditating.

Somedays I can swallow that line of thinking and some days I cannot.

Now, where did I put those gosh darn little pills?

Carol
Posted 9/20/2011 10:08 PM (GMT 0)
Natasha, you need to learn to take your emotions out of the equation. Don't feel like his behavior is deliberately directed towards you and the kids. It's not deliberate. As Carol pointed out, it's part of the disease. How about increasing his Lactulose?

I didn't think I would make it through the 6 wks. of transplant evaluation--in fact, not even the first week--but I did. Different situation, but you will make it through until Sun...one day at a time.

Big hugs,
Connie
Posted 9/21/2011 12:53 AM (GMT 0)
Natasha and carol .....believe me I know those days of frustration and just being tired and not feeling like you can take another day ..heck another minute before you crack ..... Big hugs and prayers to you both ....this site is a big help for me personally and some what therapy to get my feelings and thoughts of my shoulders ...its just nice to have you guys opinions and prayers and that I'm truly greatful ......along with listen to a lot of music .... I can honestly say this has got to be one if the hardest thing in life to overcome . We can all do it ....the caregivers and person who is fighting the illness ...like in with anything. Something worth fighting for isn't easy ......but in the end its priceless....
Posted 9/22/2011 4:53 AM (GMT 0)
Connie,

  Yes, to your question is he just going to give up and die.  He says yes, that he is ready.  Maybe he doesn't want to be evaluated and risk being told he is not a canidate and then all hope is gone.  This way he can always feel like a transplant may be an option, he just isn't ready to do it yet.  I don't know, but yes, it is hard to accept.

  All...thanks for all the input on ANGER.  It is helpful to read that many of you also deal with anger and ways to cope.  I too, keep saying "it's the disease" and I try to accept that for a while this is what our life will be like and "it is what it is".

  I know it's frustrating for hubby, too, as he feels useless and says he feels like even with a transplant he will be fighting Hep C, which will be busy destroying his new liver.  Which is true, as Carol can attest to.

  Natasha, hope today went smoothly as possible.  Carol thinking of you and found your post re: anger humerous and it lifted my spirits.  Thanks, I needed that to go on to the next day with a kinder heart. 

  Have a nice evening all.  Tonight my Mom lit 3 small teacandles in a glass bowl and she says they are burning to remind us all to "Remember to appreciate the beauty in the sparkling among all the pieces of broken glass"  I like that tonight.  I will dwell on the beauty.

Good night.

Angie1053

Posted 9/22/2011 12:21 PM (GMT 0)
Angie my husband was scared and no so sure about getting a transplant , for the fear of things that could go wrong in surgery...rejection ect ....I told him I know it scary ..I have the same thoughts to but I also told him you can either take the chance at a new life or just die if he choose to opt out and it won't be pretty so he agreed to want to do work up ...which is very frustrating when you are so sick ...we almost didn't get it done in time before he really got sick .....we all get mad at what our lives have become ...and I really don't know where the man I married has gone .....just answering a simple question is like pulling teeth I get frustrated.....then I have to remember he really has no controll over this disease that has taken over his body ...have you had a serious talk with him ? On how the end will be ..its not pretty ..maybe he should read some of out post ...can you handle it when he gets really bad ....or I say ....will u be by his side when it gets really bad ...for its tiring ..frustrated...and just feel like you can't no more .....at least with transplaant th eir is hope and to have normalcy and our Lives back .....wish I had a candle to light for you ...no candles in hospital......hope things get better for you soon

Post Edited (blonde504) : 9/22/2011 6:26:17 AM (GMT-6)

Posted 9/26/2011 5:12 PM (GMT 0)
Bump.
Posted 9/26/2011 11:38 PM (GMT 0)
I moved this here from the main page:

worriedgirl
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i want to post this song as it touches the heart. its by alan jackson and its called sissy's song but i think could be for anyone guy and girl.

http://youtu.be/zCvgXw-Bh04

Why did she have to go
So young
I just dont know why
Things happen half the time
Without reason
Without rhyme
Lovely, sweet young woman
Daughter, wife and mother
Makes no sense to me
I just have to believe
She flew up to Heaven
On the wings of angels
By the clouds and stars and
Passed where no one sees
And she walks with Jesus
And her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me....
Loved ones she left behind
Just trying to survive
And understand the why
Feeling so lost inside
Anger shot straight at God
Then asking for His love
Empty with disbelief
Just hoping that maybe
She flew up to Heaven
On the wings of angels
By the clouds and stars and
Passed where no one sees
And she walks with Jesus
And her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me....
It's hard to say goodbye
Her picture in my mind
Will always be of times
I'll cherish
And I won't cry 'cause
She flew up to Heaven
On the wings of angels
By the clouds and stars and
Passed where no one sees
And she walks with Jesus
And her loved ones waiting
and I know she's smiling saying
Don't worry 'bout me....

The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.

Post Edited (worriedgirl) : 9/26/2011 4:25:58 PM (GMT-6)
Posted 9/28/2011 10:41 PM (GMT 0)
Natasha,

  Wondering how everything is with you and the kids?  Did you make it through the visit and is husband back with his sister?  Thinking of you and hope all is as OK as possible.

  All the feedback on anger was so so helpful to me. Thanks all.  Helps me feel that I can set it on the back cuboard for awhile, and be the warm caring spouse I strive to be.

  So glad to hear of the two recent transplants and best to those patients and caregivers. 

Angie1953

PS.  Bump

 

Posted 9/29/2011 2:11 AM (GMT 0)

Angie, just a note:  When you posted, it automatically bumped the thread up to the top of the page.  It's when nobody has posted for awhile and the thread is sliding towards page 2, that we bump a thread.  In the case of this caregiver's thread, we do want to keep it near the top...but it's not necessary to "bump" if you are posting or if the thread is near the top.

Hugs,

Connie

Posted 9/29/2011 5:01 AM (GMT 0)
Thanks for the info Connie

Angie1953

Posted 9/29/2011 10:08 AM (GMT 0)
i posted the lyrics of sissys song to my facebook page and the next day i had a comment from my friend telling me how that gave her comfort because her sister died and that it was posted at the perfect time like it was God who wanted it there. i am really shocked but it gave her comfort and i am happy for it.
Posted 9/29/2011 1:54 PM (GMT 0)
Worried Girl,

  Thanks for posting lyrics to the song.  Different things comfort different people and sometimes they just come at the right time.  Today my comfort is a little buckskin colt that I'm teaching to lead...and I can understand it is music for some. Thanks for posting it.  I see you are a veteran member. It is comforting to see people that people have been on this forum for a while. 

Angie1953 

Posted 10/1/2011 1:48 AM (GMT 0)
Natasha...all okay out there? Thinking of you and your family.

Angie1953

Posted 10/2/2011 3:02 PM (GMT 0)
hi angie, thank you for thinking of me. have managed to be on to have a quick catch up of posts but had no time untill now to update on the manic situation here!! hubby is refusing to go back to sis in law so i have spent the last week going through every legal channel i can think of to get some advice or help to get him out of the house!!. it would seem he has rights to property and as he is deemed mentally incompetent the local authority will not house him either!. i have been told that if i were to claim domestic violence abuse then they will move me and the three children to a womens refuge, (one room),. my husband is many things but he has never raised a hand to me or the children and his abusive attitude now is down to his illness, however hard that is to manage. i cannot and will not lie about my situation so it looks like untill hubby decides otherwise he will be here.

i am angry because he did nothing to avoid getting himself this ill and now we all face the consequences,,,, again.
i just cannot get through to him how much this is distressing the children with his constant mood swings and nastiness.
still,,, this is where we are at. guess i just have to make the best of a bad situation. i keep reminding myself how much i will miss him (as he used to be) when he is not with us anymore, and the devastating effect it will have on the kids and i try to keep it together that way.

how is every one doing??? angie? how are things with you?
xxnatasha.xx
Posted 10/2/2011 7:31 PM (GMT 0)
Natasha, I was in this situation once.  I consulted a lawyer.  He told me if I were in fear of hubby, I could have him removed.  He had never hit me, but there were plenty of times where I felt he wanted to.  He would shout at the top of his lungs and ball his fists up.  I had already gone to stay with a friend temporarily.  I called and told him that I was going to call the police and have him put out due to my feeling in harm's way.  He left voluntarily.  I told him he could come back in 6 mos. if he was sober and had his anger issues under control.  It ended up being 3 mos. because my aunt from out of town had come for a visit and they really liked each other.  We ended up getting a divorce, but the point is that you can threaten him and he may go voluntarily back to his sister's.

I do realize that it may be different in your country.

Hugs,

Connie

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