Chrons care giver

[Maryam]

Hi All,

My husband of 2 years suffers from crohns disease. He was diagnosed when he was 15 years old. He is on Remicade treatment every 6 to 8 weeks. When his treatment is close. He gets very sick. He looses his appetite, stomach pain and constant diarrhea. I have been trying to be patient. But, at times I just loose my patience. I have to make his lunch, dinner and I don't feel comfortable asking him for help because he is sick.

We do miss on day to day activities like going out. due his flare up. Other than he is a very good and supportive husband. All I want him to do is to help a little bit when he gets sick. I am tired of doing everything for him. How do I encourage him or ask him to do things in a nice way without hurting his feeling.

Any suggestion is appreciated.

M.

 

[DustyKat]

Hey Maryam,

Wow, this is hard. For how long is he sick before he receives his Remicade?

To be honest, you have said yourself he is very sick, he sounds like he would be struggling to get through the day. What are you wanting him to do and do you think it is realistic that he can achieve these things?

Dusty.

 

[Jennifer]

Hopefully his GI knows about his symptoms and that his medicine dosage is correct. Once all that is out of the way it takes time to start feeling better. I know its frustrating to not get any help around the house and have to do all the shopping and work and whatever else. Keep in mind though that its also frustrating for the sick person because they don't want to be sick and they don't like someone else doing everything when they have a hard time doing anything.

Maybe you could make a list of things that need to be done around the house and when he's feeling up to it, he could check the list and see if there's anything he feels capable of doing. I'd keep the list limited to realistic things for him to do such as washing dishes, dusting, filing, or basically anything that he can stop doing when he starts to not feel well enough to continue and then sit or lay down to rest. Folding laundry is a good one because you can do that lying down but I wouldn't force it because the pain and fatigue really takes its toll on you.

 

[Dexky]

Hi Maryam, It is hard to respond w/o knowing the severity of your husband's flares. He could literally be unable to help or he could just be used to you doing everything for him. I think it is hard for all of us care-givers to really put ourselves in their shoes but after reading this forum for quite some time, I have come to have a real appreciation for what many of the sufferers go through. It is heartbreaking to imagine that my son could possibly have these problems some day. I also don't want to spoil him when he's just not feeling 100%. It's a hard balance to find. Good luck!!

 

[MADiMarc]

Hi Maryam, My husband does a boat load of work around the house for me when I am feeling ill. I know it is hard on him but he also knows I am not taking advantage because when I do feel better I get up off my butt and do what needs to be done. If you honestly feel your husband is taking advantage (it can happen) tell him. It may not win me any points here and that is okay but you are a person too and you have needs also.
As far as missing out on outside stuff: I hate to tell you it is part of Crohn's. I am lucky as both my husband and I are home-bodies. However, it sounds like we are much older than you all are.
Talk to a girlfriend, rant in the shower, what ever it takes. You need support too!
Michele

 

[Maryam]

.
Dusty: He has been sick for about 3 days. His tummy hurts whenever he eats anything solid. So, he is on a strict liquid diet. I just want him to do simple things like hang his clothes, when I prepare his dinner I have to take it up for him. I think I need to be more patient with him.

Crabby Relish: Thanks for all your suggestions.

Dexy: He has been getting a lot of stomach pain and constant diarrhea. About 3 months ago he a had a fistula that the surgeons removed it. He is getting better. He went without Remicade for 13 weeks. Because of the side effects of Remicade we talked to his GI and he suggested that since Crohns has been managed well on diet he could go on a lower dose or Remicade. So, I think his stomach pain and diarrhea could be due to low dose of Remicade. I do want to do things for him. But, at the same time I want him to take care of himself and be independent when I am not around.

MADi Marc: thanks for understanding. I don't think my husband is taking advantage. But, I think his mom played a big part in his upbringing. His mother lost her husband 15 years ago. She has been a widow for a long time and she has devoted all her life to her kids and doing things for them. which is nice. but, one has to teach their kids to be independent too. He is really nice guy. but, I have to tell him. can do this or this, sometimes I feel I am nagging. My husband is a home body but, not me. I love to go out and explore. It is unfortunate I moved to MA about two years a go and don't know very many people. So, I don't really have any close friends that I can rely or talk to.

 

[Dexky]

Hey again Maryam, you say when his remi time gets close he gets very ill. Does he have good energy otherwise and how long does this period last? It sounds like some tweaking of his meds might help.

 

[MADiMarc]

Dear Maryam,
Others on this site are much more up on the treatments available so I will not say anything toward that part of your post.
You say you have recently moved and that you have no close friends nearby. You love to go out. Okay. Go out. It does not mean you do not love him or that don't wish he felt well enough to go with you it just means you need to get out. You don't have to go to a club or dancing or anything like that. Start small. Go out for a cup of coffee by yourself. Go to a garden store (or whatever type of stuff you like). Do you work outside the home? Go to church or some other thing in which you could meet some people? Develop an interest outside of your husband like a book club or whatever. (I read like a mad woman so that is always my first thought. Yeah...geek alert).
I am passionate about this as when I was first dx years ago, my husband and I were very young. I still wanted to party and blah,blah and he was afraid to. He was so afraid I would get sick again that I started to get sick again! I started to become very depressed and withdrawn. Not good. So, I started doing stuff without him. Not the clubs and stuff just little things. It has worked out well for us and I got to keep my mind intact! It also made it okay for him to go out with his friends and do things in situations I was not comfortable in like sporting events.
Not preaching just concerned for your well being also. Every person's situation is different. You do have people who will listen, even if it via the internet!
Good luck to you and your husband,
Michele

 

[Maryam]

Mark: Yes he gets very tired. His symptoms last about a week. His GP has ordered some blood work on him. so, hopefully once he does that, then we know where we stand.

Michele: Thanks for all your suggestions. oh you know I hate going to clubs etc. I work part time two days a week. I wish I had a full time job that would occupy my mind. My husband got diagnosed at a very young age too, He was only 15. Oh I love reading too. What authors do you like? I am also very much in to Healthy cooking, eating. I found an interesting book about a crohns patient. who cured herself with holistic approach. Her name is Jini Patel Thompson. I have got two of her books and I am trying to finish reading that.

Thanks for all your support and suggestion Michele.

 

[Jenny06xx]

Maryam I feel for you as when I'm I'll like now, in constant pain tired but can't sleep constant diarrhoea. ( you know the drill lol) all I want to do is lie down and eat painkillers like smarties to get some relief, which is something I cannot do with two small children to look after a husband who works 60 hours a week just to keep us afloat I feel Like s..t most days lately an I feel useless !!! But I am doing all the things that I have to do if a lot slower, if I'm stuck on the loo for an hour in the morning and it makes me late to get the kids to school so be it !! It takes me all day to get the energy to clean the house but I do it ( mainly when the painkillers kick in) if I'm up all night in pain I still have to manage alone the next day.
My hubby has been fantastic he did everything for the 3 weeks I was in hospital and is still helping out after work , but I hate it when I can't do things I feel like I'm a bad mum an wife and sometimes have to call my hubby from work as I can't get off the sofa to pick the kids up due to pain. An sometimes I get the odd comment like "why isn't the house done" or similar and I understand why coz he's been in work all day I haven't .
What I'm trying to say lol is....
When he's really bad you will know and if I was him I would love to stay in bed all day and do nothing, so if it's an option an you can manage I'd let him do it.
When he's ok ask him for help if he doesn't realise he's being lazy he won't stop lol
I

 

[effdee]

I think the idea of having a list of a couple things he could do at his own time/pace is a good idea. Whenever I'm having a good period during a flare I try and do whatever I can just to be up and moving. Encourage him to do more when he feels that he can, and I'm sure he'll help out. He can sort laundry for the wash and fold it afterward from bed. If it keeps bothering you and nothing changes, just be blunt and talk about it. Tell him you feel swamped with things to do and would really appreciate some help doing things when he's up to it. I don't know your husband, but I think he'll understand where you're coming from.

MADiMarc is right. You shouldn't stop going out just because he can't. I know I'd want someone who is taking care of me to get out and do what they please and let me fend for myself while I can. Plan something ahead of time and leave him as prepared as possible.

 

[Cat-a-Tonic]

Maryam: I agree with those who have said that you should do some things for yourself, by yourself. Meet new friends! You don't have to spend 24/7 at home taking care of your husband. Sure, there will be times when he feels so miserable and weak that even something like folding the laundry will seem like an impossible task to him. I remember during one of my flares last year, I was so weak and light-headed but I tried to do the laundry anyway. I had to stop and rest for about 15 minutes halfway through, and literally catch my breath and try not to pass out, because it was so difficult and so much herculean effort even to fold & put away laundry. So please know that if he says that today he can't do anything to help around the house, he probably means it!

Someone in another thread explained things this way, which I really liked so I'm going to use it here. Basically, in autoimmune diseases such as Crohn's, the body is both creating the inflammation and then fighting it. It's extremely draining - so much energy is being devoted to both endeavors that sometimes we feel like we've got absolutely nothing left, no strength whatsoever. Think of the worst stomach virus you've ever had - you were in pain, weak, miserable, on the toilet or over the toilet or a combo of both, and just felt absolutely awful. And that was just your body fighting the virus, your body wasn't the cause of the illness. For us, it's like double that during a bad flare! So please do cut your hubby a little slack if he isn't able to help you at all some days. And please do take care of yourself too - it's been well documented that long-term caregivers are under tons of stress, so please make sure you don't neglect your own needs.

 

[MADiMarc]

Maryam,
I read trash, trash and more trash! I love the old who done it's and I cannot help but read the J D Robb books (you know, Nora Roberts other name). I can read them all at once or in little spurts and not loose track of the plot or characters. When I was younger I was into Russian novels but they are hard to follow when taking pain killers! I like the Stephaine Plum series as I grew up in NJ and it just makes me laugh because it is true and she is just nuts.
I will have to look for the book you mentioned. I pretty much gave up serious reading after grad school. I just couldn't take it anymore!
Michele

 

[Nica]

Maryam,

I understand how it can be very frustrating being the caregiver. I was married about 3 years when I got Crohn's. My husband works about 60 hours a week and then has to deal with me sick. When I first got sick I encouraged him to go out and do the things he likes. I agree with everyone else posting that you should find outside activities just for you. ( I think everyone should do that regardless of Crohn's to make a long term happy marriage) Now my husband and I are pretty much home-bodies. I am the one who wants to go out and play more so than he does.

Is it possible to know when his next infusion is so you can both plan for the down time he will need? Maybe he can help out in more ways when he is well? I personally take the down time when I need it, I learned that I flare to the hospitalization point if I push myself too hard. So, if that is the case with him he may not be able to do much of anything at that point. I know that 2 days before my humira shot I start to slow down, there is just no energy. I plan for it now I make up dinners ahead of time and put them in the freezer, do the grocery shopping before hand, don't plan any fun stuff during that time it might help you both if you tried that.. I hope this helps you some....

 

[Jennifer]

I found an interesting book about a crohns patient. who cured herself with holistic approach. Her name is Jini Patel Thompson. I have got two of her books and I am trying to finish reading that.

Interesting reads are always fun as long as you know that there is no cure for Crohn's.