Treatment and spouses distance

Week 6 on tx for my husband.  He might as well be a million miles away.  I can take him being sick, but the shut down to those he says he loves.  Does it get better?  And please don't recomend a anti depressant.  HE WILL NOT TAKE ANOTHER PILL.  Especially one that he feels labels him "crazy" in his eyes.  Do you all ever move past this in treatment?  I need support before I leave him.  But don't get me wrong at this point I'll take the the pills!

[jmjm530]

I've seen several identical posts like yours here. It's unfortunate he won't consider an anti-depressive (ADs), and in fact some doctors prescribe ADs to all the patients prior to treatment. I know you said it in jest, but def seek counseling yourself, including ADs if warranted. This could be a very difficult year for you. I really can't say what is going on with your husband, but some of us do shut down on treatment because we feel so helpless. It can be a gigantic ego crush, it was for me. I'm sure others will come by with better advice, but try and remember that after this is all over he should return to the way he was before it all started. These drugs are very powerful, therefore keep in mind that he does not have the control over things that he used to.

-- Jim

[jmjm530]

Part of the problem with Hep C treatment for many of us is that we're not sick enough to be in the hospital but certainly no where near well enough to function normally. For example, if your husband was very sick and in the hospital you'd probably accept his distant behavior as part of his condition. But as Hep C patients, we're for the most part not in the hospital yet some of us feel like total zombies. I likened my treatment at times to dying without the relief of death, and it never seemed to end. Also what is very common is that people treating feel that no one around them understands what they are going though. That's how I felt, and I still feel that today! This mindset can create isolation and withdrawal. Ever see what an animal does when it's sick -- it goes into a corner by itself.

-- Jim

[jankar]

He can't be crazy because it is the medication that causes depression and anxiety.  Take the AD's - he needs all the help he can get.  My partner knows I am not there - sometimes I come back for a while and we laugh and joke like we used to but a lot of the time I feel so bad I just need to lie down. I cannot concentrate for long periods of times and often cannot carry on a long conversation - long is 10 minutes.  I get a headache and tired.

Treatment is very hard, especially for the first 12 weeks .  I am week 25 and I understand it better now but it is still horrible - get some help for yourself so you can get through it with him.

[FlGuy]

You have written before of hubby's nastiness.  Now that he's in week 6 you and he are now eligible to read and maybe be privileged to apply some of the relevance of treatment to yin - yang and feng shui.  Not scientific or real accurately analogous by any means, but there is a lesson to be learned.  May be a better representation is the effects of the positive ends of two magnets being pressed together.  The point is that there is a balance in the family in which the proper distance neither repels or attracts.  In my own case it took a while for my wife and kids to feels the proper distance during treatment.  As I've written before, there is no excuse to be wicked mean and nasty for a patient on these meds.  But giving and taking the right amount of space will make the temptations for those occasions a little less frequent.  If you are hovering about him, stop it.  If he is whining and complaining from anther room, close the door.  Worse on shot nights for you? Ditch the guy and go to a movie with your friends. Let him stew in his own misery
If you see yourself as his caregiver drop a bottle of water nearby him every once in a while, but don't wait around for either appreciation or abuse.  As long as he's taking the meds and still breathing, let him be.  There is really little you can do.  It's all on him and he's just got to suck it up.

[GreatBird]

That's really some of the best advice I've seen. I think one of the reasons I'm doing well with my husband is that he ignores me most of the time and gives me my space but does check on me and makes sure I have what I need. Plus, it's real obvious that he cares how I feel, he just isn't pressing it.

[Isobella]

I'll second that....Great advice.  I'm in week 35 and it is hard because I don't look sick, but I am for sure not myself.  

I want to be left alone most of the time...mostly because I use all energy on getting things done and don't always have leftover energy to be nice/patient/understanding or whatever is required.....but it is still nice to know hubby cares (from a safe distance, lol)  

I think it is important for the one txing to realize that they are the ones who have changed and to try to rein in their nastiness.  People not txing are not going to be able to fully relate.  That's why this forum is a life line for many of us.  Maybe your husband would enjoy the forum??

These meds can deplete our seratonin levels-some people adjust better than others-some benefit from an anti-d.  Maybe your hubby would take the suggestion better from a doc than from you.  

Let him know you care.  And then have that night out at the movies.  It will make you feel better and that will help in the long run.

Good luck to you both.

[jdwithhcv]

"I think it is important for the one txing to realize that they are the ones who have changed and to try to rein in their nastiness."

Could not have said it better!

[Isobella]

I am guessing that one of my co-workers is wishing I had realized that Saturday morning as opposed to Sunday, lol!!

[Kristina538]

I echo the good advice FiGuy;   my partner and son got used to me just the quiet crazy lady floating around the house that they kept away from, because she couldn't handle human interaction.

I asked them to please make their own decisions without checking with me and went into my own wee world.  When I needed a hug they gave me a hug.  The rest of the time I pottered around trying to cope.  Every time I worried about either of them, I lost it and ended up in tears because I was no use to anyone and then would get despondant about being so hopeless.   So they coped, and I kind of coped, and now I'm 3 months post treatment and I've come back home.

There is recovery and he will return;  in the meantime, let him know him he's loved, make sure there's food in the fridge and remove yourself a little from his tx'g life.   There is nothing either of you can heal at present apart from treading water and being kind to each other until it's through.

[lolitriqui]

I lost my family while I was on TX; my wife just couldn't wait any longer to go out and have fun. In my mind, influenced by the TX, all was going well. You have to understand that this medication plays you in a very strange way. Many times I was just waiting all day  for the phone to ring, than as it happened I didn't pick it up. Now six months after TX we both are so sorry for all that happened but there is no way back from here. The result, my five year old daughter has to grow up with her parents separated. Patience is the only advice I can give you. This is all awful, but it will pass. If you keep that in mind you have a good chance in saving your family. Good luck to you.
ciao
Chris

[jonney4141]

i feel for you and hope it gets better, try to understand that it is not your husband but it is the drugs, i too am very different since i started tx (only 3 weeks) and my husband spotted it right away and confronted me, i am glad he brought it to my attention (he said i was acting mean) i do take ad's which are helping. i also notice i am not as talkative as i normally am, and just can concentrate on my job (getting that done). it definantly is a different ball game, but just to get this virus out of me and get some energy back so i can live life to the fullest will be worth it. try to look at him as a sick person, people who are diabetic need insulin, and without it get very sick, go into coma's or die etc.etc., so your husband is no different and is sick, how do we treat sick people? so pray for him, and maybe go to counseling for your sanity. i am sorry this is happening it does not seem fair, but we all need to have compassion for each other, it will be worth it in the end. if you need to vent we are all here for you----- let it out on us!!!!!!!!!!!!!!!!!!!!!!!!!!

[Trinity4]

Agree with everyone. Don't want to be doted on. It's not all about me and I think we forget that sometimes on tx. Just try to make the best of it for now until his time is over.
He will come back eventually.  

[lchou]

Also agree.  Luckily my husband has been very tolerant of me wanting to be "a million miles away".  He just keeps reminding himself that it won't last forever and that it is all worth it.

[portann]

Amelia: "He might as well be a million miles away.  I can take him being sick, but the shut down to those he says he loves."

It sounds like it's his withdrawal that's bugging you more than anything.

I wouldn't hit myself over the head about your frustration but try instead to find an outlet or concrete strategy that will improve your own quality of life, rather than wanting him to change.

For example, if you throw yourself into a new pastime today (music, movies, art, craft, etc.), you will have accomplished something by the end of his tx that you can be proud of and will forever be associated with 'that tough year on tx'.  And he may benefit from a pastime, too. Both my husband and I decided on some practical goals for the year. I've almost accomplished mine and he, well, he got side-tracked.

Many of us on tx talk about a kind of personality withdrawal that comes over us. I can't emphasize this enough but can't explain it either. Some days, my vocal chords don't work. Quiet, give me quiet. And I'm normally a chatterbox who can drive a good man around the bend, unless he removes his hearing aid.

My husband has had no problem AT ALL with my withdrawing. In fact, he rather likes it, since it gives him more time to read. This could possibly be a gender issue or at least personal disposition.  He's typically happier not talking and I'm happier talking. My not talking is a source of contentment to him, not resentment. If the shoe were on the other foot, it may have played out differently.

I admit if he were on tx and actively driving me away, it would be hard to magnanimously walk away and let him have his tx space. I'd have to work at it but I would, since we committed to coming out of this together.

[merryBe]

if you could only get him to see that whats happening is not a weakness...its a destruction of tissues and chemicals needful to the brain.

the treatment drugs strip the brain of it's normal level of several chemicals, notably the serotonin that tends to keep us calm, and let's us cope without becoming overly stressed becomes very short in supply. This allows other STRONG brain chemicals to have too much influence, notably one that causes agitation has a freer reign.

In studies done on monkeys some drugs cause extreme amounts of norepinephrine and this leads to agitated and angry behavior and outburst. At the same time the liver, which has been sick, may not have been producing enough cholesterol, which also lowers the serotonin levels. The cholesterol acts as a protectant in the brain of serotonin.

Hence you see why doctors prescribe antidepressants for people on tx. The drug in the SSRI class are known as serotonin uptake inhibitors. That means they stop the serotonin from becoming bound (taken up) and allow it to stay free and reuasable in the brain longer.

The ribavirin acts like a stimulant or speed to the body. It cause more norepinephrine to be made and stay in play. This chemical is a cousin to adrenaline, (the fight or flight response hormone). Any increase in this can cause anienty and evtn mania, hence the inability to cope, and tendency to lash out without control.

the riba will not entirely leave your system for 6 months after tx...and it takes 5-6 to build up to the levels it will remain at, but you should see some improvement each month as he comes off of it. I would tell you to just be patient with him, but of course I just explained why his behavior is not a reflection on his patience, or love, or on self control or the lack thereof. He is being chemically altered.

Not only does the tx destroy brain chemicals, it can destroy as much as 80% of the DNA/RNA in each cell. SO this tx. is no walk in the park.
My best description is, it feels like someone took a cheesegrater to my brain, and like I'm walking around in the scratchiest woolen longundies...


All that said I would encourage you to try to keep your stresses to a minimum by helping him avoid people and places that add to the stress until he is fully recovered.
If he wants to veg on the couch, let him...just bring the cool cup of water and remember what you see on the outside may look no different, but his insides are in a war zone.

Try to get something for him to read about changes in brain chemistry...like what I just wrote...or a pamplet from your doctor explaining it...or find an online pamphlet you like.

If he could understand its normal...happenes to everyone...maybe he would cry uncle.

The nurse practicioner at my liver clinic said "this is the only treatment that has grown marines who have never in their life shed a tear being reduced to pools of tears".

That says it all.  About 30% of people drop out of tx. The majority are men, who are refusing any anti-deppressants...but just cannot take it alone.  How sad that their pride is keeping them from saving their own lives.  I will pray for your hubby Amelia.

MB