Help Needed for Caregiver

[robinandmarion]

My dear husband was been on interferon for 1 year; his viral load was 23,000,000, end Stage III.  He began getting sick 2 years ago not knowing it was the hep; had skin infections, pneummonia, shingles, celllitis, fatigue, and a litany of one thing after another.  We were married March of '08, he was diagnosed with immediate need of treatment April '08, out of work May '08 due to illnesses (and has been since) and from June '08 until now has affected his psychological state, (i.e. anger, rage, irrational thinking, etc,), sex drive (non-existent)...he started interferon/ribarivin Sept. '08 but had to stop in Nov '08 due to life-threatening side-effects, began again January '09 with new doc and different protocol whereupon his viral load went up to 23,000,000 (from 14,000,000 in '08); he has been undetectable since May '09 but he is very sick.  He was denied SSI/SSD and we only live off the small amount I make.  We decided to let my two young girls live w/their father since Sept. '08 (he's 1 1/2 hrs away - I moved up here for my husband's sake) during treatment because it's a much more stable environment for them (he also has plenty of money whereas we are now in financial ruins - declaring bankruptcy)....I see them on weekends.  My health has deteriorated as I have several autoimmune diseases that exacerbate when I'm under stress which of course I have been.  I own a home an hour away where I used to live w/my girls; I rent it out to my stepdaughters but it is undergoing foreclosure as they have not been able to pay me and I have no money to pay the bank either (I also suspect they are using drugs)....in a nutshell, in a year's time I've lost my new husband, my daughters, my house, my investments (have had to sell IRA and life insurance to survive), my finances (used to have great credit!),my own health - even my 2 dogs I had to give up when moving here to this rental (my husband want to stay where he knew people during his treatment)....the worst part of it is that my husband used to be gentle, sweet, loving....but no sooner did we get married that all hell broke loose and I've lost him on top of my being the daily target of his rages and angry outbursts....over the smallest things he will explode at me over things and leave me shaking and crying for days...which then causes causes the colitis I have to act up, the adrenals the act up, the migraines, the insomnia...on and on and on....I never know when I'll get blasted with it...he'll be nice and sweet one minute, and I'll get blasted and hit another - like a volcano spewing lava at me out of nowhere!!  I can't take it any more!  I have been a very good caretaker to him - caretaking is a natural for me, I'm very good at it.  It's also what I do in my job (I take care of the severely physically and mentally disabled/handicapped).....but I have been saying to myself for the past several months that I just can't take this any more!  I don't know what to do....I don't want to "abandon" him but I also want a reprieve; I don't want him to feel I walked out on him, but I also have to protect myself and my own well-being....it's also not healthy to walk around the house being virtual strangers, not talking, comunicating - that's tensions and stress too!  We do love each other and when he's in a sane state of mind he tells me how much of a struggle it is for him to not be angry and to reign it in and how he loves me and appreciates me, but I'm the one that's here in the trenches with him, I'm the one taking care of him (no one else does, no one else helps, no one else has any idea at all how very sick he's been either - he just tells everyone he's fine)....I'm the one that sees him day in and day out struggle with getting sicker and sicker physically as well as struggling with his depression.  But I too am struggling with depression and anxiety....what do I do?  The doc has advised him to continue on for 72 months but there is no way he can or will do this - he's stopping end of Nov at 48....2 1/2 more months but I say to myself all the time that I have to get out of here....almost every day I'm crying.....it's so hard......I pray every day and just hang on....thanks for listening....

[robinandmarion]

thanks again for your feedback and to marc and others too....I really need feedback at this point and read this web site several times a day every day this whole year to learn for the sake of my husband and myself too.  I've been reluctant to share as this has been about him and what I can do for him but I feel like i'm headed towards cracking up here and I figured there must be other caregivers who get to this point too.  He won't try another AD as he hates any drugs whatsoever and all ADs that he's tried do nothing at all for him he feels (I have to agree) - he may be a bit bipolar in which case ADs may not help him at all anyway (his primary had suggested this to him a number of years ago but he never followed up on this - before I met him)....he was also in anger management for 5 years before I met him so this treatment in probably making him particularly vulnerable to control rages...I've never seen this side to him...like I said, he's always been very gentle, sweet, kind, loving, compassionate with me...a truly peaceful soul...but not now...he's lost and..a "broken man" as he puts it himself....and at times I too feel "broken"....I'm sure there are others out there on both sides, patients and caregivers, who feel this too at times...there are so many variables over how treatments goes for each patient and their spouse/caregiver and families....it varies tremendously...I just don't want to not be there for him but I also don't want to "break" myself....such a fine line to walk.....how in the world do other caregivers cope?  perhaps it's the fact that I have no other help? I don't know how you all out there get through this unscathed....and what happens post-treatment?  he seems to have the impression that all will become great, whereas I know better due to all the research I've done....I will be holding my breath and waiting....

[kickboxingmom]

First of all Mark thank you for clarifying about extending from 48 wks to 72 for slow responders.


The only thing I wanted to add to the comments above is that if you and your husband decide to stop treatment at 48 weeks, you should not for a minute feel guilty or feel that your are sacrificing a chance at cure that might come with 72 weeks. The most recent data suggests that an extension from 48 weeks to 72 weeks for a slow responder such as your husband is of slight or no benefit in terms of the chances of cure.

Truth is, your husbands chances of clearing the virus are not particularly great, whether he stops now or continues to 72 weeks. That is a very sad thing that you may need to confront.


robinandmarion,you are so right,it is a xxxxshoot.I really do feel for you.You have been through alot too.You also have to think about YOU.Your autoimmune issues are serious and you should treat them as such.You sound like a beautiful person taking on a new husband and all his problems on top of your own.Then just dealing.You really have to take care of you and take what comes one minute at a time, if that's what it takes.Remember bill collectors can't eat you.I'll send you a private messege.Good luck with everything and I mean that.Tammy

[Lindaz]

Treatment is so cruel at times to the patient and their families.  Like others have said, look at some tablets to help with your husbands depression.  It might be a good idea to speak to his doctor about what is happening also.  They need to know about these things.
I wish you all the best and I hope things improve for you soon.
take care
Linda x  

[Marc1955]

This is a horrible story. I can relate to parts although I don't say that to minimize your suffering. I know what a terribly difficult time this is.

The only thing I wanted to add to the comments above is that if you and your husband decide to stop treatment at 48 weeks, you should not for a minute feel guilty or feel that your are sacrificing a chance at cure that might come with 72 weeks. The most recent data suggests that an extension from 48 weeks to 72 weeks for a slow responder such as your husband is of slight or no benefit in terms of the chances of cure.

Truth is, your husbands chances of clearing the virus are not particularly great, whether he stops now or continues to 72 weeks. That is a very sad thing that you may need to confront.

I feel your pain and sense of being overwhelmed. If your husband stops treatment you can start over the next few months to repair your relationship. Then you will have a partner to work through some of the other issues in your life. Things will seem easier if you confront them together, regardless of what the future holds. He won't get back to his old personality over night, but it will happen over the course of a few months.

Good luck.

[robinandmarion]

thanks so much....think I needed to hear that I can do it and to stay strong....it's just been me telling me for a year and a half and have been alone in this....thanks for all of your replies....my hubby does NOT want to continue to 72 weeks...no WAY.....he is sooooo depressed, he is only a shell of the man he used to be....he's on his third antidepressant and nothing seems to help him....he's also a recovering addict and has remained clean (I hear there is a high rate of relapse while on treatment)...his dear sister, who is was very close to, died last November from this disease....I am worried SICK about him - whether we continue to 72 weeks or stop, either way...personally, I don't know if he would make it past the 48 weeks....he can't do much of anything at all throughout his whole treatment....most days he can't even drive....he's physically and mentally shot, and believe me, he is one tough cat!  He's been through hell and back in his life, and this treatment is tough, tough, tough.....I am scared about my own health as well - although mine is not life threatening, I just get sicker with my autoimmune diseases with the stress......it's a **** shoot whether we stop or go at 48, isn't it?  He can't go anywhere or do anything whatsoever - can't read, think, even conversing gives him trouble.........his mind and spirit is just dark and his light has gone out, you know?

[kickboxingmom]

Here's the deal.Your husband needs you.You need him.Sounds like you've lost and or are losing everything else around you.It's time to take a deep breath and be the man for awhile.If you don't your going to get sick and then what ?Put it in your head what it will be after hubby does his 72 weeks.He has to to be able to have a chance of beating this horrible thing that has changed him to this point.If he can handle the tx you can handle him...If you let his actions get to you you won't make it with your gut and other problems.Every morning get up and just do what you have to do to get through the day or night.He has told you what you mean to him and if you feel the same keep drudging thru.Sometimes the water is going to gush at you.Take a deep breath and you'll see it will pass and you'll look back some day and say, what was I thinking.It's ok to cry it rids you of toxins.Your children need you too.More than you know.Don't ever look back and say, I should a, would a, could a.Look back and think.I did the best I could with what I had.If you love him and he's not abising you stick by him.This tx is horrible and you really can't help yourself at the outrage.You would not have wrote on this forum if you didn't want opinions.If you love your family and want it all to get better, get the over it and give them all a kiss and tell them you love them, ya know ? You have to be the glue that holds your family together.You'll start feeling better and slowly things around you will start getting better.Positive thoughts, positive reactions.By the way it's nice to meet you.Good luck to you and hope things start getting better and they will but only you can make that happen at this point.It sounds like your letting it get the best of you.Don't ! Look at what you want and don't let anything or anyone STOP you...You can do it and at this point you have no choice.                                                     Huggs,   Tammy

[Marcia2202]

First I would like to say that I am very sorry about your situation.

The medications are definitely mind altering and your husband should really consider getting onto anti depression medication. They take care of clinical depression, anxiety and the rage. These are all caused by the drugs. Most of us who have been or are on treatment took them.

Your husband being stage 3 might not really have the time to wait for the newer drugs to come out in 2011. I think it is probably the wisest decision to continue with treatment until 72 weeks, if he can.

Wishing you all the best. And my sympathies go to you.

Marcia

[newleaf09]

I'm not sure about mood disturbance before the start of TX (though I have seen a few studies connecting deppression to HCV, probably because of the terrible stress of being diagnosed with a life-threatening illness), but interferon is definitely connected to mood disturbance, usually either depression or irritability (anger, crankiness, rage) in 1/3 to 1/2 of patients.  Your husband would be a good candidate for the addition of an SSRI type antidepressant.  Many of us have used them to manage that particular side effect of interferon therapy.

I had the irritability side effect myself, and was prescribed Lexapro.  I had to try several others before settling on Lexapro.  The others made me hyperactive and that period of finding the right one was miserable but I stuck with it and it paid off by evening out my mood so I did not bite everyone's head off.   I ended up only needing a half dose (5 mg/day) to do the trick but some may need twice the dose (20 mg/day).  Whatever it takes.  I stopped the AD after finishing the therapy, with no ill effects.  If I had still been unreasonably irritable I would have continued using it.

There is a shift in philosophy going on right now about therapy.  A patient who is not very responsive could extend treatment time or they could stop at 48 wks and wait until 2011 to retreat (if the virus becomes detectable again) with one of the protease inhibitors added to the standard IFN/riba therapy.  2011 is when the PI drugs are expected to be approved by the FDA.  I don't think there has been enough research done yet to determine which is the best course.  A good discussion of the pro's and con's should take place with your husband's doctor.

[HCA]

I'l tell you one thing-if your husband took from January to May to reach undectable on treatment he has very little chance of staying that way if he stops at 48 weeks like you want to.
He has something of a chance if he does 72 weeks like the doctor suggests.
Sorry about your troubles but I haven't replied to give you sympathy,but to warn you against stopping the treatment.