How can I help my crohns spouse if I am sick?

[SandyUte]

My husband, Doug, is a sweetheart and dear man, as anyone who knows him on this forum knows. HE is the one with crohns, and right now is in a flare, but I also have chronic health conditions and he ends up being my caretaker more than I do his. Long story condensed (greatly), I've had one smaller, but major stroke, which has in turn led to seizures that are not well controlled. Even had two TIAs (small, and no permanent damage) strokes just in the past week or so. Because my problems are so much more visible than his (I've had seizures everywhere) and people are so put off by their don't know how to take his crappy disease, (pun intended), although he has to think about everything he puts in his mouth, as well as where the next toilet is, I don't know what to do for him both as a spouse, or how to raise community awareness (even with family, close neighbors) to help them ask how Doug is some times. I know he could use a kind word or thoughtful gesture by our generally very caring neighbors also. He is always the smiling silent sufferer, and he is not much better in energy, etc. than me.
What do you do when you both have "issues?" He really needs some "are you okay" words from others. How do I divert words of kindness that are always meant for me to him? Or at least some acknowledgement that he is sick too? What can I say in casual conversation that will help him? He is my life, I just want to give him some love and attention for a change, as he does everything for me.
I would also like some suggestions how to make the burden, just keeping house and cooking, less if anyone has suggestions. (by the way, our diets are supposed to be just about opposite - full grains, fresh fruits and vegetables, nothing processed or salted for me, while, you crohnies see the problem.)

 

[Spooky1]

Lucky he has a spouse that cares the way you do. Just think of it like this... some of us don't have any support so we have to try and care for ourselves. He'll cope i expect. Forgive yourselves if housework etc goes to pot. Us chronic ones are used to it. just prioritise.

What can you tell him? get him to read your thread here. I think he will know you love him.

Best wishes to the both of you.

 

[SandyUte]

Thanks, Spooky. I guess another question is how do I get people to
acknowledge his illness? nobody seems to understand with his problems. it also seems to be ignored or undermined with mine. How do you train, teach explain your illness to anybody?

 

[SandyUte]

I'm really, really feeling frustrated I can't do more for Doug. Does anyone, an IBDer, have any other suggestions, something that would be helpful to you by your spouse or significant other for someone with physical limitations? I really don't want to be a lump on the log. what can spouses/others do to show support more?

 

[Spooky1]

Am sending you both some humour. When people are stuck with illnesses that won't shift then certainly a sense of humour can only help.

Am trusting you both read the joke thread and also the funny photo thread on here.

best wishes

 

[sanni]

For me the most important feeling from my special one is that he makes me feel wanted and important to him. So just tell him how important he is to you even if he allready knows it. And give him a kiss.

As for the other part of giving knowlege to neighbours. Thats hard. Does he want everyone to know about his problems in the first place is one thing to think of. If yes I would say a crash course on Crohn's is in place. Explain its a illness he has all his life and that in order to feel better he needs to care forhimself everyday and have medication. And tell your friends that not all sicknes is seen to the outside. But if he wants to keep it private then let them give you the attention and you can the in return give that attention back to him.

 

[SandyUte]

thank you both. the humor thing DOES help. Doug likes to read to me and reads me a lot of the funnier jokes.
Regarding the neighbors, that is a harder one. Doug doesn't necessarily want the neighbors to know all the details, it is more like he doesn't want to be ignored as a person, especially when he is hurting too. I think he feels he is ignored in his personal needs, but he doesn't want to go tell the world he hurts either. he just doesn't want everyone to expect that he is okay handling all my problems, because he is not. (I hope this makes sense. we have a big sense of community here which is nice in some ways.)

I think he just needs a break from his responsibilities, more than anything. the good news, I think I am on the cusp of getting better medical care (I hope. my faith in getting good health care has gone way down from several medical nightmares, though.)

you don't know how much both of your answers have helped. I even needed to get it straight in my head what I really wanted. you have helped so much!