Posted 2/14/2010 10:03 PM (GMT -7)
Hi. I am the caregiver, my husband is the one with Crohn's. I had a very very very tough time with his diagnosis. Yes, I know we all agreed to "In sickness and in health", but most people including me expect the in sickness part to come later in life. Unfortunately for people with Crohn's, it affects them in the prime of their life - it isn't an illness associated with age. You know, I expected the usual stuff, high blood pressure, high cholesterol, arthritis, maybe having to take some meds, needing maybe 1 surgery in life to deal with something, maybe even God forbid, the big C in old age. Crohn's was completely unexpected and unwelcome.
I think it hit me really hard because the Crohn's and C-diff landed my very healthy, very fit husband in the hospital for 45 days, where he lost so much muscle, and became a shadow of his former self. It really really scared me, and I wasn't mentally prepared. I'd never before faced chronic illness, something that can strike at any time, something that hangs like the sword of damocles over your head, and can fall at any time. I felt completely out of my depth, and for a while there, it was all I could do to stick by my husband I love so very much. Not that I didn't love him, I did, and still do - but I couldn't watch him suffer, and it seemed that there was nothing I could do that actually helped . . .the surgeon was talking about sending my husband home with 2 stomas. . . Remicade was such a scary medication to be faced with, especially when his aunt had died of MS . . . my life went from perfect to complete misery in no time at all, and I couldn't deal with it.
My mom had to come all the way from India to help me face each day as it comes. That's the trick I was missing - I didn't know how to take it a day at a time, and sometimes I still don't. I wanted quick answers, miraculous recovery, and my old life back. And I convinced myself I couldn't be happy without that perfect life back. Well now, I sing a different tune. I work very hard to take it a day at a time, and even if my husband's health isn't perfect, we can still have a perfect day doing the things that his health will permit. Everytime worry for the future threatens my happiness today, I willfully try to set aside that worry. Meditation and making conscious choices about the things I expend my mental energy towards has helped make my todays happy.
My husband normally takes care of me - he does the laundry, the dishes, wakes me up in the morning with just enough time to get ready, makes coffee for me in the mornings even though he never drinks any . . . and when he is sick, he can't do any of it. He's so weak, and so in pain, and so it is a hard adjustment for me. I not only end up worrying about him, and this anxiety and depression makes it even harder for me to do the chores around the house and take care of him. But now I have a better handle on things. I don't feel bad if something doesn't get done, I just do it later. And I smile at my husband, and do my best for him, and try to gauge when to take him to the hospital, and wait of course impatiently for him to get better.
It's been a hard road, but one I am finally coming to some peace with. I am ok with the limitations this illness has placed on my life, and I am dealing with the uncertainties of the future. I think perhaps your spouses need to accept this illness - not try to wish it away. It will not go away, it must be dealt with, it must be accepted, and you both must come to find happiness together despite the illness. Also, dealing with this illness has shown me that I am capable of a great deal of compassion, empathy and strength when it comes to my husband. I hope your spouses find that well of strength and compassion inside as well. My husband and I are closer today than ever before, because we understand that our time together is so very precious.
I hope things get better for both of you. I know that there isn't much in the way of ideas to make things better in here, but maybe my experience will help you and your spouse work through some issues. Perhaps reading this gives you greater insight into your relationship. Here's another thing - I considered that perhaps I wasn't cut out to be strong and stay in the marriage with my husband. But then my mom asked me, what would you do if you ran away? Will you respect yourself? Will you love him any less if you ran away? Will you be able to build any kind of life for yourself carrying that much guilt around? And she was totally right - I would have had a very crapty life if I walked away from my husband, because I really do love him, and running away didn't actually help either of us.
Sorry I have no great words of wisdom. But I do know it's hard. I hope you both find love, and answers soon. I wonder how much of your husbands "we don't click" is because he is scared, and how much of it is real. He should face the fear, and maybe then, your relationship will have a chance.
Hugs. Hang in there!