Hep C Discussion Forum

Cinnamon Girl · Guru

RE: Partners help and advice

navigator · Newbie

just want to check in and say 'thank you' - to lindsay in particular, because this post touched a chord - and to all of the people on this board. my husband started triple drug treatment in august, and he has to go the full 48 weeks. i have been lurking around the board, gathering information, encouragment, and most importantly, understanding of what others are going through.

we have a great doctor, did all the research we could before starting treatment, insurance that (so far) is paying for the drugs. but nothing can subsitute for the shared experience of the people living through this.

peace

Lindsay · Senior Member

Humor is key for Renee and I! If she grumbles about taking her meds or needing to eat or drink water, I will sometimes just make a silly face or a bit of a humorous reference to help change the mood. We generally do have a playful relationship, and while that has decreased some due to how Renee feels, we still put in the effort.

I have had to attend more to my self-care. I can't be there for Renee without taking care of my needs too. It's like an airplane ride. You're told to put your oxygen mask on before helping others, including children, because if you pass out, you can't help anyone else!

We also try to take time to do something fun once a week. Usually it is on a Thursday or Friday because that is further from her last interferon shot (she takes them Saturday nights). We've gone to a concert, baseball game, movies, nights out with friends etc. We play with our animals and play games on the Xbox. We play cards and have a nice friendly rivalry when we play.

Sure our lives have changed and I'm sure they will change once Renee is off treatment. We've tried to keep most things in our relationship the same while knowing that it may be longer in between activities or chores or whatever. Sometimes I feel exasperated, but I do know she doesn't feel well. For example, I generally give her a pretty long back, neck, and head rub every day. I had given her a long one yesterday and when she asked for more, I rolled my eyes and sighed. I gave her one because I knew she was in pain but sometimes, yeah, my hands just don't feel up to it or I'd rather just cuddle. I just want to be there for her in the ways she wants/needs me too though.

Lindsay

kandacetb · Member

nikki wrote:
I think what we go through when we're on tx is always well covered, but as a carer looking in from the outside, the sheer hopelessness we can sometimes feel is underestimated. In many ways carers go through the same side effects as those on tx. The mood swings, the deppression, the mind numbing tiredness and the constant worry. Eating can make you nauseous. It is difficult enough to care for someone when you're just waiting for tx to stop, but when tx just isn't going to be the magic bullet you pinned all your hopes on and the sheer frustration of the situation hits you, there's nowhere else for your mind to go. Platitudes make you cross, just one wrong word makes you furious, the injustice gnaws at you every day. A carer ends up just as over sensetive as a patient. But the carer is expected to hold the whole thing together and answer the needs of everyone else.

This section is for carers and supporters, if any of you feel you need to shout at the world for the situation you and your loved one are in, shout.

If you're at the receiving end of a bit of venting, step back, remember that the person who is angry is angry at a whole lot more than just you, and understand. We all know and understand riba rage, well trust me - there is DEFINITELY such a thing as carers rage!!

Nikki xx

This couldn't be more true. I have been sitting here for an hour and a half reading posts on this forum and crying. With Ben on treatment, and three daughters ages 7, 10, and 16 I feel like the burden on me has greatly increased. He still goes to work, alot of overtime, even, to support us and words can't describe how proud I him and all he does.... but there are so many times I feel so ALONE and helpless! I don't want to feel sorry for myself.... I am a wife and mother... I can't feel sorry for myself and care for everyone else.

I am SO, SO glad Ben told me about this forum. This will help me to help him, and that will make me feel better.

~Kandace

Catie · Veteran Member

Hi Rudolph smile

Your post has expressed fears that I have about my Partner Greg going through the treatment - he hasn't started yet ... I hope we can give each other the needed words to help keep our determination up

in the mean time - i have read the words

it's the meds not the man several times - does this help?

if not then plz take my love and a hugg

Cate XOX

lindacherokee1964 · Newbie

Does anyone else just want this to be done & over, one way or another, my husband was given 2 yrs, 19months ago, now given 3-5 more years MELD only 9, not eligible for transplant, too sick to even do basic things for self encephalopathy from decompensated cirrhois ammonia buildup is making him either be like a 5 year old or out cold for 20-23 hours a day, I now only have my husband 1 hour to 1 day in 6 weeks, He is so much worse, I need a support system, don't have one. Finally gotten VA homemaker 12 hrs week to help when I am not home, I have to work, we haven't gotten disability yet, no more financial resources. I don't know whether to cry, scream, curl up in fetal position or what. He also has heart, diabetes, and other health issues. ANY thoughts, Bham AL support groups any ideas??? confuse

rudolph832 · Member

Happy to report that my hubby has not had a drop to drink since he started treatment 2 months ago. Other happy news, his viral load is nondetectable @ this point so he is responding to treatment! :)

Now on to the next thing.....treatment has been rough on him. Insomnia (now on Ambien which HELPS), fatigue, random physical symptoms like the flu, etc. One thing that's the hardest for me is the HORRIBLE MOOD SWINGS!!! I know I have work to do because I take things very personally but this man can have such a short temper, takes pot shots @ me, is critical often, etc. Can someone please tell me that "this to shall pass"??? I feel very helpless on what to do, how to help. He can get very down @ times. I mentioned that talking to someone may help. His response was "It won't do any good." Any words of wisdom would be so GREAT!!

Vectorwoman · Senior Member

Solitude wrote:

Have you only just read that Guy? Vicky posted that in August. She left and had a baby

Nikki xx

OMG LOL
I didn't notice that it was an August post!!!

rudolph832 · Member

Can I join in??

My husband was diagnosed with type 1 in November. Liver biopsy shows only stage 1 liver damage which was good (per nurse). Going back to Dr. this week to discuss treatment. Looks like Peg pen 1x/week and ribavirin 2x/day.

I am hoping and praying for a smooth road (as much as possible). It is scary when you are faced with the unknown and it looks like side effects vary so greatly from person to person.

Hope to stay in touch with you all along our journey.

One day at a time..................

Solitude · Veteran Member

Have you only just read that Guy? Vicky posted that in August. She left and had a baby

Nikki xx wink

The Dude · Senior Member

Vicki das a great idea. Summin dat should be given a chapter/s in a book about TX brilliant idea. I'm an ideas man confused

an problem solver [not my own so much. Which is a human trait I'm sure] So we gotta lobby for wot we need, good idea Vicki & you an Nick have the credentials das f'sure; all the best Guy aka The Dude

Solitude · Veteran Member

Keep up the good fight smile

CeeGee2 · Guru

Man , you just keep on fighting no matter what comes up. Life is a fight from beginning to end. Today is the one that counts, there are no promises for tomorrow , just for the moment you are in now. We all remain on this plane for the good times, the bad times give the good that rosy tint and makes it all right with your world. Stay strong. CG

nikki · Senior Member

I think you're just doing what we all do. I know I for one, scoured the internet and convinced myself there was no hope for me. Even though you read the good stuff, you only take in the worse case scenarios and apply it to your situation.

I don't think you could be doing any more than you obviously are :o) you are supporting him through it you've got yourself an understanding of the whole disease and you're there for him. Being a carer is really tough.

Nikki xx

Joseebus · Member

You're a fine typist, Danny. We spent some time together tonight (we live separately) and it was nice. Lots of laughing and jokes.

There are plenty of days when I actually forget that this is there, you know? It's not as big of a spectre as I think I initially made it out to be. I mean it would be if I let it seem that way, but I just refuse to. I'm assuming most of you have learned to do the same.

Danny · Senior Member

it WILL pass Joey
but not just yet , every journey starts with a long step , but its sounds like yous stepping in the right direction mate , take comfort in that

my wife struggled with it a lot , because english isnt her first langauge and when she gets upset she makes less sense of it , she loathed theheptologist with a passion ,because he had a really strong scottish accent and she mostly had no idea what he was on about . she got most of her information from asking questions on a website , i was too ill to care at the time and frnakly if she had smothered me with a pillow i'd have been grateful for the end
your partner might be a bit low at times although sounds like hes mostly coping , but he's gonna be awful glad hes got you on teh bad days
sorry i'm not much of typist

-- Edited by Danny at 22:03, 2008-01-11

Joseebus · Member

It was definitely difficult for me in the beginning from a psychological standpoint. I had to keep telling myself that he wasn't going to die and that his hopes for cure from treatment were very high and that I needed to remain optimistic. I looked up every scrap of information I could find on mortality rates and this disease and finally I convinced myself that death was out of the question.

It's also a difficult adjustment to allow yourself to believe that the "relationship" doesn't have to end during treatment. There are days (plenty of them) when he's my same Trent - just as he always was and I cherish those moments. The days when he's lethargic and ill we just lay together and cuddle and watch TV and even that is heaven to me.

I think that from the psychological standpoint I had a very hard time with this, but with each day I feel better able to be completely supportive. I am not going to do him any good whatsoever if I'm a wreck.

My motto: One day at a time, nothing is ever as bad as it seems, and this too shall pass.

Minerva · Guru

Hi Danny,

The need to have a space where you can speak without feeling like you are adding any pressure to those closest to you is important, and able to share your worries and/or concerns too. I know Kobi is behind you 100%. If being here helps then i am glad and hope it helps to get you thru your time until you are both together again.

Love and hugs
Heather
xxx

-- Edited by Minerva at 17:39, 2007-12-02

Danny · Senior Member

my wife was fantastic , even when i shouted at her for being an irritating ....who was trying to force me to eat when i didnt want to
when we got the bad news of no response she just said ok, lets look for another way i'm not giving up without a fight, when i went into liver failure, i said i'm going to die now arnt i, she just scowled at me and said , dont you f** dare quit now danny we're not even halfway yet, so i didnt.
i dont want her to come here to this forum , we dont normally have secrets , but i need sometims to talk without her, to talk about her even.
but i cant even breath without her support thats for sure

nikki · Senior Member

Elaine,
how are you today hun? How is your son? I just read your post and my heart goes out to you both. I can understand why your son is in a pit of despair. He has gone through so much and it must seem like it's never going to be over. But he has the faith in you to be able to tell you he is lost. You must have a very close bond - that is so precious. You're a lucky lady. You're his mum.... of course you want to take away his pain, and it must be killing you that you can't. But at least he feels he can tell you how bad it is for him, and show you how much he needs you still. You need to have someone to lean on too, and we're all here for you. Lean on us. I don't think there is anything to add to what you are already doing for him. He has all the support he needs from you and feels able to let go in front of you. Just keep being his mum, it's what he needs and you are giving him just that.

Take care

Nikki xx

nikki · Senior Member

Hey Alison,
good luck today for you and Clive. You must be in shreds. My thoughts are there with you both and I hope to the bottom of my heart that you get a result you can cope with. I'm not going to say stay strong, sometimes you need to have someone be strong for you instead. So cry, scream, kick the wall if it helps, but let it out. I always worry that if I start crying at times such as you are facing today, that I'll never stop, and if I don't stay strong, who's going to keep the family going etc etc. So for me to let go, I need to be away from everyone at home, or have them go away from me. And yes, I cry and cry and cry sometimes until there just aren't ant tears left. And I feel like crap the next day, but the day after that, I start to get things back in control and into perspective. Is there any way Clive and the kids could go and visit some family or friends for a weekend, and maybe you could have a close friend over to stay and just sit down and talk and relax and watch a crap film with popcorn and just be normal? Someone you can be honest with and let the feelings out?
You need to make time for you too Alison, just to breathe.
I hope so much things are ok for you today.

Love

Nikkixxx

p.s. I'm away for the weekend, so if you post and I don't reply, that's why. If you want to talk privately to me, my email is nikki@multitask.fsnet.co.uk. don't feel obligated, but I know it's been very difficult for me to open up and share some of the experiences I have done. And I always think it's easier to type than speak. Nikki xx

Minerva · Guru

Hi Elaine,

I think your son is very lucky to have you!! Keep using the forum - it can help just to let it all out.

Stay strong for yourself and your son will take strength from that. smile

My best wishes for you both.

Love and hugs
Hxxx

Anna · Senior Member

Hi Elaine,

Sounds very tough to see your strong son feeling defeated. I think you should remind yourself that even though he's exceptional (because everything I've heard about him, I think that's the correct word to describe him), he's bound to feel down from time to time, by all he has to contend with. And your job is remind him of all he does have: loving relationships (you and his fiancee, to start) and the very positive mental attititude that he normally carries and that affects people (even those who don't know him) and I'm sure there's so much more. Elaine, you know I think you are a great mom; it's what drew me to contact you in the first place. I also know that just when things look the most dire, they can turn around and that's my strong wish for Nick.

Love,
Anna.

-- Edited by Anna at 19:41, 2007-09-06

child24angel · Member

Many thanks Lau, We are trying
Thank you

Hugs
Elaine

LaurieBluesGuy · Guru

Hi Elaine,

this virus is a horrible thing isn't it ? It's natural to fell that sometimes you're never going to clear it and I know your son has been through several treatments. It's hard to recommend a course of action, but you've just got to get him to stay positive. The medical world is advancing all the time and ther are always new remedies on the horizon although they come along slowly.

I realise it must be hard for you too Elaine, but hang in there you're doing a great job and you have the love and respect of us all.

Lau

child24angel · Member

Hi everyone,
Just need some postive reinforcement.?
How does a mother or care giver keep going?
How do I remain steadfast and strong?
Please, insights? I can hardly breathe, function
These last 3 days have been very hard, scary
mad , insane.
My son very very rarely cries.....the last two days
he has been talking of the virus has defeated him
and he will never be cured. He has lost hope .
In himself, everthing in general, I have never seen him like
this. I am trying so hard to keep him positive. We all
are. He just left to go to his home......and hugged me
and said he is lost. I am lost.....I am hanging on
my a thread here. I can't seem to get it together?
Please , any suggestions?
Hugs
Elaine

Minerva · Guru

Hi folks,

My dad has been fighting cancer for years.....cleared it, then we had a scare and he has been on trial tx (including interferon recently) for year and a half...but had to come off it due to the sides......i understood but was worried bout it coming back.

He now has a few health probs, tumour on his nose (which is not maliganant) but due an endoscopy for his throat too.....its a bit like always waiting to see if it has re-occurred or not......which sounds awful cry

........but my dad's spirit is what always carries me thru!!

Lost my mum 13 years ago to cancer....wasn't brought up with them (knew and met them tho during stages of my upbringing - long story) but was fortunate to have the time to make amends, thankfully before she went!! X

My dad did have bowel cancer a few years back and had it removed and chemo etc.....then a shadow on his lungs....which tx sorted....now the tumour on his nose.....which they want to remove. He is 67, fitter than me and one hell of a good man!! wink

.....but what he doesn't know, is that he has been my inspiration all thru my tx (cos he doesn't know i had hcv).....and i continue to be his support, and loving daughter forever!!

Im sorry if i have gone off topic!!...but maybe i havent.....

Good luck on Friday Alison!! smile

......use my dad as inspiration?......X

Alison and Nikki, you are BOTH inspirational women in my humble opinion!!

Love and hugs
Hxxx

alison · Member

Hi Niki,
You have put down exactly what its like to be a carer...
i also feel sick to the stomach some days as i don't know what the day is going to
be like..
i didn't want my life to be like this but it is so we have to make the best of what we have..

there is always the question going over in my head...why can't there be a tx for clive
and how much longer is this going to go on...all i can do is look at the frustration on his face.

on friday we go for his 6 month scan on his liver,for cancer

take care everyone, alison

nikki · Senior Member

Speaking as a sufferer and a care giver, I think it is sometimes hard to seperate the two. I lost my mum to cancer last year, and have seen my youngest through some very tought times, some of the tx she has had is very similar to ours in terms of side fx.

I think what we go through when we're on tx is always well covered, but as a carer looking in from the outside, the sheer hopelessness we can sometimes feel is underestimated. In many ways carers go through the same side effects as those on tx. The mood swings, the deppression, the mind numbing tiredness and the constant worry. Eating can make you nauseous. It is difficult enough to care for someone when you're just waiting for tx to stop, but when tx just isn't going to be the magic bullet you pinned all your hopes on and the sheer frustration of the situation hits you, there's nowhere else for your mind to go. Platitudes make you cross, just one wrong word makes you furious, the injustice gnaws at you every day. A carer ends up just as over sensetive as a patient. But the carer is expected to hold the whole thing together and answer the needs of everyone else.

This section is for carers and supporters, if any of you feel you need to shout at the world for the situation you and your loved one are in, shout.

If you're at the receiving end of a bit of venting, step back, remember that the person who is angry is angry at a whole lot more than just you, and understand. We all know and understand riba rage, well trust me - there is DEFINITELY such a thing as carers rage!!

Nikki xx

LaurieBluesGuy · Guru

Hi all,

My wife was simply wonderful thru this, and had to put up with a lot of silliness from me. (TX does scramble the brain doesn't it ? )

I think, in hindsight, that she had a tougher job than me. She had a business to run, my boys to get to school, the finances to arrange, etc ...

I wasn't well and the TX wasn't nice due to my low blood levels to start, but I still think she did better than me to be honest.

I was surprised she didn't want to join the Forum though, but then again the other Forum was too aggressive and she would have given a few people a telling off so I'm glad she didn't.

But partners are incredibly welcome here and undescribably important ..
..

Lau

nick · Veteran Member

Hi Elaine - please feel free go on and on - can't imagine you'd be kicked off the forum for that! A good 'stream of consciousness is really useful I think. I know that my blog helped in that way - it was really therapeutic just to sit down and write what I wanted to and get things off my chest.

Perhaps it also highlights the fact that as well as the patients, there are the 'silent victims' of Hep C - who should not be expected to just sit back and suffer in silence. I really believe that anyone who has been through treatment cannot fail to respect and admire their partner/suporters more as a result - and looking back, that admiration just increases.

I always told Vicki that I hoped I would be able to repay her some day for all the care she gave me, and I hope that during her pregnancy, and after the baby is born (about 3 weeks now), I've lived up to that and will continue to do so. I suppose I can appreciate that perhaps the situations are different, as the baby is rather my fault (it takes two though ...). I certainly know that after all she did for me, I have not minded or resented one second of looking after her.

Keep up the good work, Elaine - and feel free to vent.

Nick

child24angel · Member

Hi all

As a mother, it is hard sometimes to vent...I love my son
with all my heart, it breaks my heart to see him like this.
He has his finance', we talk and get along great. I explain
things to her as I know them, mood swings etc. she loves him.
However, I had him first lol right???

I see him and/or talk to him every single day we are
very close. I go with him to most of his doctor appointments
He will usually only open up to me about his diseases.
I know how hard it is to try and keep a balance between
caregiving, work, and my daughter. I always , always put his
needs first. I would do anything for him.
Yes , I have to keep the household running. I do. (I try)
I hate seeing him like this and it hurts. I can't fix it.
Mom's are supposed to fix everything. I was supposed to protect
him.

I have some idea what he is going through, by seeing him , on tx
and off tx however, I am not the one on tx or have HCV.
I would take this pain from him if I could.

I could go on and on.....and may sometime, (you may kick me off
your forum) lol, It is nice to have a place to talk and vent from
a supporters point of view.

You are all wonderful !!

Hugs,
Elaine

nick · Veteran Member

Spot on Heather.

I also totally agree with Alison how unfortunate it is that more supporters don't get involved in forums. I think part of that may be because some patients want somewhere private to go where no-one knows them, and they can say what they like without it having an impact on their partner. A bit like seeing a counsellor.

I think this is a really good reason why having more than one forum/online support system is really good. It means people can share when they want to, but also have total confidentiality elsewhere. It depends on the individuals, of course.

It also means that the partner can 'let off steam' about the patient's irritability/bad temper/anti-social moods/bad habits etc etc etc without worrying - or maybe air concerns about health that they prefer not to discuss with the patient (eg mental health).

-- Edited by nick at 09:31, 2007-09-02

Minerva · Guru

Hi all,

Personally, i think no.8 is meant more as a 'generalisation' as in, the person on tx often feels like it is all about them whilst they are going thru the tx, and it is usually other's who notice the sides and changes in the other person, and often have to adapt.

I think support for everyone during tx is essential, i know my kids needed it from time to time and i definately did!! Perhaps fortunately, i was single during tx....methinks that was wise...in my situation....i couldn't have imagined being in a r.ship on tx....but i do not think anyone here would undermine the situation you are in Alison, and quite the opposite. It cannot be easy for you all.

To an extent, my kids became 'carers' during my tx, because they did have more responsibility placed upon them...but that is something that is not always recognised, the effect tx has on those around the 'patient'....

Love and hugs
Hxxx

-- Edited by Minerva at 23:57, 2007-09-03

nick · Veteran Member

Agree with u Alison - important for the supporter to be functioning as well as possible to offer the best quality support - and at times that means taking difficult decisions about priorities.

Sometimes, in putting the patient first, the partner may need to consider their own interests.

I also think there's a lot to be said for keeping things as normal as possible for the patient and the rest of the family.

Almost impossible to get right all the time.

I certainly know that Vicki was unwell for some time after my tx finished - mainly because she wouldn't allow herself to be ill while I was going thru it.

alison · Member

Its a shame more supporters don't join these helpful forums..sometimes we need to let people know how we feel...

I know Clve is hurtng but i'm hurting too as there is nothng i can do to help him..

His liver has decompensated twice..i can tell you that was not nice to see

he has had 16 pints of fluid drained from his stomach...

he was at one stage also having an endoscoy once a fortnight...

so i needed all my inner strength to go back and forward to the hospital

look after 2 children,work and run the house,the list goes on so i needed to put myself

first...

Terrylee8 · Member

I believe the 10 steps came from Chrissy several months ago. I posted them so that we can get some content on our site as it's a little bare right now. Tx is tough on both the care giver and the patient any way you cut it. My own experience finds me having a much tougher time than my care giver.

alison · Member

I don't agree wth you terry about the supporters needs coming second...
if i don't put myself first who will look after clive and the children...

everyones needs are different..i don't think you should have numbered them in a list..its a tough virus and all its complications,its dam tough being a supporter too!! blankstare

Terrylee8 · Member

With the help of many on this forum and by reading probably hundreds of posts, A list has been put together about what you should keep in mind while helping a loved one through this TX.

1. Only bring up the illness if absolutely necessary.

2. Be patient.

3. It's not him/her, it's the drugs.

4. Don't let an idle mind create crazy thoughts.

5. Don't push too hard, you'll push him/her away.

6. Listen and don't talk so much.

7. Be available, but don't nag.

8. It's all about him/her right now, your needs are secondary.

9. Tell him/her how much you care about him/her, but don't expect anything back.

10. "This too shall pass"

nick · Veteran Member

I know one of the things which helped me was always having Vicki being there when I wanted her - hospital appointments, doing jabs etc - I also know that if I had asked her not to be, she would have done so without question.

Maybe that's a start on the list - be there when your partner wants you, but be willing to withdraw without judging if your partner asks.

Vicki2502 · Member

Hi everyone!

Just thought i would get this section going with this.

I thought it would be a good idea to have partners/supporters, and patients, to talk of their experiences.

Basically, partners/supporters could tell of their experiences of Hep C/Tx and what helped ease the discomfort of it all. Could be something they did to help their partner through tough times or what they did to help themselves when they felt stressed and useless (something which all supporters know about very well!).

Patients could give their points of view as well. Maybe something your supporter did/didnt do that helped you through the rough times. Maybe ideas of how supporters can help. What made it that little bit easier for you?

Im sure you get the drift of what i am saying. Basically, put together general guidelines that any new partners/supporters can refer to in a "time of need".

This sort of info is invaluable to all of us, i think. Us partners never know if we are doing things right or not and need all the help we can get to help our loved ones through the crap Hep C and the tx throws at them.

I will put my own piece on here over the next few. Just gotta get my head round it all and remember what i did!! Brain fog exists in pregnancy too! Now i know how frustrating it must have been for Nick! weirdface

Anyway, hope everyone is well! Lets see how this goes!

Vicki x

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