Help for spouse

[marcollee]

How do other spouses/partners deal with the bad side effects of Hep  c treatment?

[marcollee]

Thanks for reply. Things not going too bad at the moment. He is not sleeping well, but seems to be holding his own. I do notice the "brain fog" getting worse. Will be glad when its all over and life hopefully gets back to "life without treatment"!!!!!

Good news though, 4 wk viral load, dropped drastically, so at least its not all in vain, gave him and me a boost.

We seem to be muddling through at the moment with everything, but I know things can change from day to day.

Thanks again

[orphanedhawk]

My husband did all the cooking, shopping and managed to go out with me for walks.
Occasionally when I was being horrible, he'd remind me that although he knew my reactions were from the meds, that I shouldn't take it out on him. But most the time, he simply knew that the meds made me crazy and in time, I'd be back to myself again.

Don't forget to take care of yourself so you are able to stay upbeat and not let the side effects of treatment get you down. It doesn't last, truly it doesn't.

[ceanothus]

Try not to worry about things that are still four weeks away. A whole lot can (and likely will) happen between now and then. Actually, if your husband gets as sick as I was at that point, he will not even be able to think about going alone. Not everyone gets that sick, but by about 6 weeks into tx, I was way too foggy-brained to drive a car. Hopefully he will recognize this and won't try to macho his way through it. I didn't drive at all for so long that now, a year after tx I still see my husband start to reflexively want to drive me whenever I'm getting ready to go somewhere. I'm so sorry about how he treats you on bad days, and I hope your signal system works. I wish we had thought of that! I know I had many days where I felt too sick to even acknowledge my husband's efforts or presence, I could only manage to cope by withdrawing pretty deeply during those times. One thing I did a LOT at those times was withdraw into stories. I started getting audiobooks on my iPhone and spent huge amounts of time with my earphones going. Sometimes I was too sick to even follow the story, but I still found it soothing to have it going.

My memory was horrible while on tx, and I found it so important to have my husband with me at doctor appointments. I can't tell you how many times he later told me something the doctor said, and I had no recollection of it at all! I also told him in advance what questions I wanted to ask and then when I forgot them he would remind me gently, "didn't you also want to ask ....?" I had to have timers on my phone to remind me of pill-time, and lived with my phone always at my side or in my pocket. Sometimes I would take my pills and 5 minutes later I couldn't remember if I had or not, so I had to start checking them off on a list each time, and my husband helped remind me to do that.

Bless you for trying so hard to help him through this, and do keep asking questions as things develop. This is a great forum for both info and support!

[cheflady]

hi there babes please dont beat yourself up my hubby was same i felt like i was divorced but i took a deep breath and painted a smile on my face because i knew he couldnt help it, he knew that he wasnt his self he would even joke saying "I wonder what me will come downstairs tomorrow" it was like living with two different men!!! even the dog was stressed! I think its best just to wait for hospital appointment i am sure he will want you there and indeed its better to have two sets of ears, its alot to take in,hopefully your hubby will be undetected when he gets his bloods, my hubby was and stayed that way from wk 4 til end of tx at 24wk. We are just waiting for his 6mth results hopefully he will be SVR. Good luck both of you & if you like you can pm me anytime. Love Jules xx

[marcollee]

Further to my other post and replies, I would like to add, I am supportive always to my husband. I have attended all the hospital visits with him and sit in and listen. I was a nurse, and it helps to have 2 pair of ears. Anyway last Friday, he made me feel like I had out stayed my welcome, and does not want me to go anymore. I am no longer wanted or needed. I would say that he was going through a really horrible mood phase, horrible and weird. The other day, when back to more normal, he said come next time. But it made me feel really strange and now I don't know what to do. The appointment is not for 4 weeks. If I don't go, I know I will only get half a story from him, and I feel that if I went, I feel that I would not really be welcome. I do feel shut out. Its a dilemma!!!

[marcollee]

Thanks for response. Done lots of reading so hopefully that will help as you say. Doing what I can to support him. Trouble with a lot of what I have read, it goes through the disease and treatments and side effects. So I am pre warned. None of if though tells how others can deal with it. Obviously common sense should prevail, but when you are taking the abuse (verbal), its hard. Reading the posts on here have been really helpful. So again, thanks

[marcollee]

Thanks Jules, yes I think knowledge is the key. We have both read loads. What a horrible disease and such horrible treatment, for all concerned. I know what you mean about eggshells. We have only had one bad time, but it is only early days. My husband is only in week 5. I think the sudden change was hard to deal with. At the moment he has gone back to near normal, but I know it will come again, hence the eggshells. Like you say, I need to give him space. I think the dog is going to get more walks!!! We had a good talk on Saturday. We both put our feelings forward. I know its the medication and I know that he cannot help what is happening to him, so it is up to me to deal with it. This time I found it very hurtful, but I think next time, well I hope anyway that I will be better prepared and be able to deal with it better
During this bad time, my husband was walking around the house and living as if I wasn't there, did you experience this? and when I was acknowledged it was not nice. We have also set up a code system on the calendar, so hopefully he can warn me, that he feels bad. Just something I can look at, nothing said. Fingers crossed. He is waiting for results of 4 week viral test. I just hope there is signifcant decrease in the virus, gives hope. How did your husband do, cleared I hope and you are both happy. Regards Marian

[marcollee]

I pressed best answer on one comment, I wanted to press best answer on them all, and now realise I can't. You have all been wonderful. Thank you to you all

[marcollee]

Thank you. We have both read lots and lots about whats going on. I have stopped work now, I had some health issues of my own. This makes it easier for me to sort other things out. He is working at the moment, he has arranged  to do 4 on 3 off, but I think its when he gets to days 3 & 4, he really starts to struggle. Most days something is going on, but its the intensity. In all honesty, I don't think it will be long before he has to have some time off. The first bad "mood" effect came last week. It arrived very suddenly. It was horrible and very hurtful. He is better now, but I feel I am looking out for it to arrive again. We did have a long talk, he does not want to hurt me but can't control it. I know its the medication, so as you say I will be try my hardest to be patient, and when really bad, just walk away from the situation. I think you are right, I need to let him know that it is not acceptable to hurt me or be verbally aggressive. Of course this can only be said in the better times. The first bad time, I suppose was a learning curve for both of us. Will keep in touch, and again, thanks

[marcollee]

Hi there, thanks for your response. I am the spouse and thankfully we do have a good marriage, so as you say that is a good starting point. My goodness if it wasn't, then who knows what could happen. I find dealing with the physical side ok. I do not work and I am a trained nurse, so I can give my time and help. Its the other side of the effects. They came in the 4th week, so suddenly, my husband changed, although I was told how I had become a different person, not a nice one either. I could do no right, there was no reasoning, it was horrible, I have never felt so hurt. Come the Saturday he was returning to his normal self. We had a good talk about it all. He does worry how all this is going to effect me. When it was bad, I don't think he would have cared. So, cut a long story short, I know it is the medication and its going to be up and down. I will have to be patient. I know it will be up to me to deal with it, he won't be able to. We have sorted out a code system on the calendar, to use only when the bad stuff is coming or arrived, then I will do my best to be patient and if necessary walk away from any horrible situations, until it has passed again. I have been with him all the way, always go to appointments with him etc. He told me that he doesn't want me at the next one, that hurt, feel like I am not needed anymore. It is hard because you know it is the medication but I am only human. I will do all I can, and I will do my best, just hope it is good enough.

[ceanothus]

Wow advocate, what a great response! I'm all in awe, all over again, at the magnitude of support given by you, by my husband, and by many other spouses.

[Advocate1955]

My husband has treated and failed treatment 3 times.  I read a lot about Hep C and the liver and tried to give him information to help him learn as well.  He isn't one to remember appointments and remember to get labs drawn, etc., so I did all of the scheduling and went with him to most/all of his appointments.  He also isn't one to think about keeping paperwork, etc., so I made an expanding file folder and organized all of his information about the liver, Hep C, treatments, bills, reports, prescriptions, etc., so that we could find them easily.  He was pretty overwhelmed right away after he was diagnosed, so I didn't tell him everything that I read (it made him anxious), so I picked what I thought was the most important and most hopeful information to share with him.  By the time we got through all of the preliminary stuff (genotype testing, vaccinations, CT scan, ultrasound, liver biopsy, etc.), we had a lot of information.  At that point it was pretty straightforward that he needed to treat, since he hadn't treated before, so we dove in.  How did I support him through the specific treatment?  I organized his medication, made sure things were refilled on time, set alarms so that he would take his medications on time, made sure there were proper foods in the fridge so that he could make lunch and take snacks to work (we work different shifts), called to make sure he woke up to get to work, with his permission I talked to his doctor/nurse about side effects and picked up whatever was recommended, I kept looking for different foods (spices, temperatures, textures, etc.) that might taste good and help him eat.  He managed to work almost every day through three failed treatments, but our two kids and I had to take over all other responsibilities besides sleeping, eating, taking medicine, and working, for him.  He had no energy left for anything else.  We (all 3) just kept supporting, encouraging, and helping...There were times that he wanted to quit, when it seemed like treatments weren't working, but all 3 of us kept encouraging him.  There were times that he was anxious, irritable, or depressed due to both the chronic illness and the effects of the medications, but we kept encouraging him to get up, take a walk, have some dinner, be a part of the family, etc.  There were times that he was a bit too irritable, snappy, or angry at me or the kids, which is obviously a side effect of the meds, and the kids and I would talk to him at another time about that and let him know that it's not OK to hurt our feelings.  I'm fortunate that my husband trusts his doctors and trusts me to keep a watch on things, so he let me help him answer his doctor's questions about mood and irritability so that they could better address those side effects.  So, in that regard, as far as the anger/depression, we did have our days with that in all 3 failed treatments, but it was occasional, the kids and I understood, but we also didn't accept being treated in a verbally aggressive way.  We gave him his space, and talked to him at another time, so that he would understand the impact of his words on us.  If it were just me, I might have been able to just give him his space and say it's the meds, but I had my kids to think about too.  I knew that if we talked to him in calm times about it, he would try harder not to lash out at us.  Again, I became sort of his spokesperson when we talked to the doctor as well, so they could add an antidepressant, or increase the dose of an antidepressant or antianxiety med.  These are tough meds and can cause some serious mood/anger problems, so I tried to stay on top of talking with him and talking with his doctor about that.  There were times that he would say things that sounded vaguely like suicidal ideation.  I think it was more anxiety, depression, and feeling overwhelmed, but when I did probe him about it, he might say something like, "Gosh, how do people handle this, without jumping off a bridge?"  Nothing specific, but scary enough.  I would again try to give him a bit more information (information is knowledge), listen to what his fears really were (being a burden on us), and then try to help him find ways to reduce his fears while at the same time working with his doctor to reduce anxiety and depression.  Overall, bumpy and difficult time, not all a walk in the park, but manageable.  To be honest, I don't know how people can do this without family or friend support, and I applaud those of you who can/did.  There were days my hubby couldn't walk, let alone get groceries, prepare a meal, or drive.  I still tease him about one day when we were walking from the parking garage of the hospital to his doctor's office, he was very anemic at the time so we were headed in to get labs and see the doctor, and he was walking so slowly, I had to walk backwards, literally, to stay pace with him (and I wasn't walking fast)!  We laughed that day, and we still laugh about that.  My advice is:  information, listening, helping with the logistics (meds, food, chores, labs, appts), giving them space when they need it and letting them rest when they need it, but also push a little and encourage them to walk outside once a day, join the family, be out and about a little bit, to avoid depression, and monitor the side effects so that you can help communicate them and get what's needed to manage them right away.
Feel free to drop me a note or PM me if I can answer any specific suggestions.
Advocate1955

[ceanothus]

Welcome to the forum! Can I ask whether you are the patient or the spouse? I recently completed my third time of treating HCV, and finally it was successful. I would never have made it without this forum or without my husband's amazing support. Patience is the number one necessity for the spouse. He helped with all the household stuff like shopping and cooking and cleaning, he drove me anywhere I needed to go (I was badly brain-fogged by the meds and had really slow reaction time), and he worked hard at ignoring it whenever the drugs made me short-tempered. People who are single manage to get through the treatment but people with supportive spouses have it much better. The hardest situation of all is those poor souls who have troubled marriages to begin with or unsupportive spouses. This treatment can really take a huge toll on them.

[asle]

Hi there, and welcome to the forum.
The best way a partner, spouse or friend can help someone on treatment, is to read as much as possible about HCV, the treatments available, and the side effects.
Once someone is aware of the side effects and how to help manage them, then it becomes much easier to help someone through their treatment.
They can keep notes, and lists of questions to assist you at all appointments, and can shop and have a choice of foods available for you.
A support person who is up-to-date with the treatment sx will be able to see the changes to the treating person, and make the right calls.
Good luck, if you're the treating person.

[Dee1956]

Hello there, my husband was a saint. I think the number one thing you need is a lot of patience. The first time I was able to work about 32 hours a week most weeks. When I got off work I would come home, get stuff ready for the next day and go to bed.  I had a hard time dealing with the mail and bills but I did it.
The second time with Incivek, Peg, Riba I was so sick during tx, there was not much I could do other than eat the 20 grams of fat 3 times a day and just try to get through it.  After the first 12 weeks it improved some what but I did get other problems with infections.
My husband did all the shopping and cooking.  I did what I could when I could.  I have to say that it was a one day at a time tx to deal with. I never knew how I would feel from day to day so I made no plans while on tx.  If I woke and could do something we did it, otherwise I survived the tx.
There is a lot of help on here. any questions you have will be answered. Take care, keep in touch
Dee