How to best help loved one going through treatment

[thiagirl]

Hi, My father is starting his second round of treatment for his HEP C.  He took the treatment about 2 years ago, it was hell to say the least. At first  the outcome looked good but after 6 months they told him he had to do it again and they are giving him a double dose . My mother has a very hard time dealing with this. I know that unless she takes the shot herself she cant possibly understand what he is going through. I think this is true for most people, unless you are faced with taking that shot once a week ( in his case he has to take two now ) you cant even begin to understand what its like. I love when I read stuff and they say " after the 4th or 6th shot your flu like feelings should go away" my father felt sick the entire 48 weeks. My question is what do other spouses do to help these people during the 48 weeks of hell. I know its hard on the loved one who is not taking the meds themselves, but my mother God bless her has a hard time dealing with my dad. I guess I am looking for people to tell me what they do to cope with the sick spouse taking the medication and the spouse who takes the medication, what your loved one does that really helps you to get through it. I myself am an insulin dependent diabetic and I recently found out I have MS so I have to take weekly shots of AVENOX so I myself have a little better understanding for my dad and his side effects.  but I am looking for answers that might help my mom from people who are going through it themselves. As well as for my dad. any support answers will be helpful and greatly appreciated. Also if you have had to take a double shot for treatment any insight on that would be wonderful.  

[IAmTheWalrus]

I think just being there to offer comfort is the single best thing a caregiver can do. My best moments are when I am being touched. I find my wife's gentle caress of my hair very comforting. There is not much can be done about the SX. Keep water and food available and provide encouragement.  I have done 41 weeks and have 31 to go!

Good luck.

[Deb_c430]

This is so heart breaking and so true.   I have felt all these things.

May I just add one thing?  To remind those who are enduring so much, in a good moment, to remember to thank the care giver,  sometimes I think we dwell on ourselves with good reason, we are sick.  But their lives change also.  For my husband and I just telling him thank you sometimes, means the world to him.

Hither   my heart just aches for you,  that was so emotionally raw,  bless you for strength, your courage and the deep love you have.   I felt like i could touch your lonliness.

I wish i did have magic words,  I don't, but I will say I admire your courage.

Deb

[hitherdither]

I'm sorry to hear your dad has to go through this for another 72 weeks and double dosing at that. My husband is on his 16 shot tomorrow.  It's been hell since week one.  It is very hard to see him go from the strong 57 year old that could work 8 hours a day come home tired with a huge appetite and eat anything and everything he wanted, loving to travel with great sense of adventure, laughing all the time, joking, to the 58 year old that can hardly walk, no appetite, 38 pounds lighter needing me to help him in and out of bed, change his clothes, bathe, open water bottles for him.  He's like an elderly person in his 80s with bad health.  Something I thought I wouldn't see for years to come. I'm 10 years younger than he is.  I help him to the bathroom to throw his guts up or hold the bucket if he can't make it to the bathroom.  I'm scared to touch him for fear he'll hurt because he does hurt. I haven't had a hug from him in 4 months. I don't sleep close to him because I'm scared I'll move in my sleep and cause him pain. His skin is so dry it's flaking off onto the bed.  He's so exhausted it's hard for him to get up so I can change it.  His skin is hanging on him now, no muscles left to speak of. His hair is falling out onto his shirt.  We haven't had a decent conversation in weeks, mostly due to him being tired and just not caring, the other is he can't think of what he wants to say anyway.  I've spent so much money and time trying to find foods that he'll eat, juices he'll drink only having to throw it out or give it away. Beg him to try and eat a little something.  When I take him to his drs. appts. I have to help in in and out of the car hoping he won't loose his balance and fall.  Don't want a hip broken on top of everything else. His doctor wants hm off the meds. He says no. His blood counts have dropped to where now he's only on the shot once a week and shots to build his blood up before he can get back on the pills. He won't give up.

When I feel down, which is alot, I have to know he's doing this for me, for us, for him and he'll get better.  Even tho when I look at him and don't recognize the man I married.  But, will he get better?  Will he be the same person he was 4 months ago?  He's missed spring, his favorite time of the year. He doesn't even pet the dog anymore let alone me.  I go places alone missing him every place I go.  Riding down the rode missing the conversations we'd have about the flowers or the people, everyday things we used to take for granted.  Having dinner at a resteraunt, going shopping for groceries together.  It's like someone has died.  Lost....never going to come back and when and if they do they'll never be the same.  This is what this treatment does to people. The people taking the treatments and the caregivers of the people taking the treatments. I envy those poeple that say they can work, workout, walk, eat, gain weight.  Yes, I get a little upset when someone complains about not being able to excercise but for 1/2 an hour instead of 2 hours.  God, I wish my husband could sit up for more than 5 minutes at a time. I sound bitter. I am. Sorry.  I don't post much on these board, mostly because I don't have anything good to say, nothing I can say to make anyone else feel better about the situation.  This is horrible and theres no way around it. I read the comments hoping someone will come up with some miracle that'll give me my husband back.

I know he's hurting and I feel so helpless it's unbelievable. If I could I'd take this from him and do it for him. I love him that much. He knows how I feel and how badly I want him to feel better.  I've listened to suggestions on what to feed him, how to take care of him. People just don't realize I've done, bought, cooked and read everything there is and nothing works, so don't even suggest anything. I've been there and done that.  The best thing for you to do is be there for your dad no matter what it takes.

I want my husband back.

[meki]

You're very welcome to print it out... Those are my words - I wrote them specifically for thiagirl - because sometimes, that's just what is needed. Honest truth.

So - if they can help you in any way - PLEASE use them in any way you see fit.

Hugs!

Meki

[fuzzy1dar]

You do have a way with words!  That sure hit home....I should print it and give it to my son's dad so that he might understand the sx of tx and what I have been going thru the last 3 months of tx.  My 16 year old son is very understanding about the way I feel and how tx has affected me....his father has been on my case because I've been having allot of the same sx as explained in your post above...maybe if he knew that this is how tx affects allot of people me included he would be abit more understanding!

[meki]

I did only 24 weeks - so I cannot imagine more than that. But I know what I went through with those 24.

Have your dad contact Andiamo - or any of the 72 weekers - they have their own club... LOL - if you can call it a club.

I'm a lucky one - I SVR'd --- I'm one year and a couple of months past the last day of my treatment now... And what an amazing difference already - I'm just healing as we go.

Life is going to be good for me.

I'm here to lend the same support I was given - that made it possible for me to get through everything --- the sides ---- the insanity --- the fog...

I don't know if I'll be here forever - but I think I owe it to myself and those who helped me through some of the toughest times of my life --- the belief that it CAN happen.

And that life CAN get better.

It is nice to have family members on here - and it will be great to have your dad here.

Much luck to you and your family.

Meki
PS. Wanting to give up because it is so hard is VERY common. But tell your dad this: Some people can take this SOC - and have very little side effects. Others - it is bad - some fall in between. Perhaps he will go to the least possible sides when he treats again.

[thiagirl]

Yes he has to do it again for 72 weeks and right now for the next few months a double dose, I love when they say it wont be worse than the single dose me and my dad think that must be a joke . I had him read your response and he smiled he is going to join the site, which I think will be good for him, and I will set my mother up as well although I did tell him its better if they don't tell eachother what there nicknames are so neither one of them gets offended by what the other one may say.  Thanks again it was very helpful . by the way how long have you been on TX? or have you stopped? My dad is about ten years older than you as I have read that the older you get the TX affects you differently, either way he is a strong guy, last time I remember him calling me up in tears telling me he can't take it anymore that he wanted to give up, they were some of the hardest things I had to listen to, then I had to get tuff with him and encourage him to stick it through, my mother would be quick to say maybe you should stop, but I knew how much he wanted to stick it out and how many people quit cause its so bad. now faced with 72 months and a double dose I know he is scared that it may be alot worse than before, but he told me he is doing it no matter what. If it doesnt work this time they told him he might have to go on maintenance, which means taking the shots every week for the rest of his life which he doesnt even want to think about, we are praying it will never come to that , he does have one of the harder hep c to cure, but we have faith that he can beat this thing. thanks again good to meet you on hear ...

[meki]

LOL - well I can't speak for others --- but that's sometimes how I felt... So I just typed it out - since you needed something... Something to maybe get her to understand that it isn't her fault - and to just put life on hold.

And I would never for a moment doubt anyone saying that they felt like doo doo  LOL!

I know what this TX feels like for me - and I can't imagine your poor dad having to do it again.

I think having your mom read here on this site would be the most excellent thing for her to do.

I'm glad you liked it - and hope - in some small way it helps.

Meki

[thiagirl]

LOL.. that was perfect i am going to show my dad, my mom is like most mom's wants to fix the problem, and she gets frustrated when she cant. I know that its a double ended problem, I feel for him because being sick myself I can relate, but being a mom I know how hard it is to not be able to fix it, like my mom. For myself I feel bad that my husband has to give me a shot once a week into the muscle, it is a big scary needle, it hurts  and I never know how I will feel in the morning, I get the flu symptoms the chills , I am tired. But I know that what my dad is doing is beyond anything I can imagine. My mom, she really is someone who would never understand unless she gets the shot. My dad told me yesterday after his first dose, he thinks that health care providers and spouses should be required to take one shot just so that can really have a clue. Thank you for your answer he will love it.  I will print it out for my mom because I think she thinks he is not feeling as bad as he says , that maybe its  really not that bad he is just a whiner . Then I know she is scared and helpless and feels bad. its sucks all the way around. I am going to get her to join this site because I think it might help her talking to people who are going through treatment and are married to people who are going through treatment thanks again that was good.

[meki]

" I know that unless she takes the shot herself she cant possibly understand what he is going through."

Truer words have never been spoken.

Here's a quick answer... There will be more, to be sure.

Stay far enough away that your noise doesn't affect me, or your perfumes or colognes don't overpower me... Or so that you don't hurt my aching bones --- or steal the air that I feel that I can't get enough of. Stay far enough away so that I don't feel like growling at you for absolutely no reason, but for some reason seems to be the most important thing at that moment to me.

Don't talk to me... Because nothing you're going to say is going to make much sense to me in the first place, and it makes me angry that for some strange reason I feel like I'm in a bubble and can't communicate properly back to you and I'm frustrated.

Don't touch me because it hurts - because right now my skin is on fire and it itches and there is nothing I can do to put that fire out or scratch that itch.

Don't play loud music or turn up the tv to blaring - because I'm sensitive to sounds and lights.

If I'm in a dark room - leave the lights off. If I'm in a bright room - leave the lights on. Sudden changes in lighting or temperature take on a whole new meaning for me --- and it's usually painful or very uncomfortable.

If I seem like I can't hear you - or I  take forever to answer your question - don't take it personally - I may not be able to push past the fog in my head. I hate that I can't talk back to you - or carry on a full conversation. In my head I'm feeling guilty as it is and frustrated that I can't... Because it seems like it should be there - right on the tip of my tongue, but I just can't seem to find it. And I don't know how to find it. I don't even know where it is. So please don't just stand there waiting for my answer, I can't give it to you.

Hold me when I ask for it - because I need it desperately right then.

Love me no matter how much I yell or scream - or just lie there looking sicker than a dog.

Cook for me - even though I tell you I can't eat it - maybe an hour later I'll be able to taste it - or maybe it will not make me throw up again or I won't be queasy for the next 24 hours and it might be alright.

Know that sometimes no matter what you do - because you're not me, going through these things, you just can't possibly understand it.

Understand that none of this is personal... Or maybe that it's more personal than anything I've ever done before.

Know that I am doing this for you.

[thiagirl]

Oh  and  on an side note my dad is on a 72 week treatment this go around so knowing how hard 48 weeks were 72 weeks seems that much worse . except that after you start taking these treatments I imagine one week is one week to long to be taking them.