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Mom lost her husband after a long battle with prostate cancer and basically, she was where you are now for the last two years of his life. It's been 3 years come February since he died, and it's still tough for her - battling guilt and relief, and the latter does not diminish the former.
Since D was terminal, Mom knew that it was a matter of time, and I think because she knew that there would be an end, it was easier for her than for others who may know there will be an end - eventually - but have no idea how far away that end is. I know it sounds horrible, but terminality can be a blessing for the family. My ex's father was chronically and severely, but not terminally ill, and I know ex's mother had a very hard time. (I like ex's mother, and keep in contact with her; it's just ex I can't deal with anymore.)
Mom's salvation for the last 6 months were her anti-depressants. She was on Lexapro and it kept her on enough of an even keel that she didn't feel the need to either smother him in his sleep or slit her own wrists (her phrasing, not mine). She also spent 1 evening a week at a support group run by the local Cancer Society and had two nights a week of respite care for her husband (she spent one with her Eastern Star group and one playing bunko with her friends.) Hospice provided the respite care for the last 13 months; the VA provided assistance, also. Having her network probably helped her a lot.
Her therapist (who happens to be a good friend of mine from when I was in school to become a therapist) constantly helped her remember that D. (her husband) had the right to be cranky, but not the right to be critical. There was a level of pushback that Mom had to do with him - she said it was along the lines of dealing with a cranky child. She walked away from him when he'd be rude, or say something to the effect of "I know you didn't mean to phrase that so it sounded like you wanted to hurt me and make yourself sound like a bastard. You want to try again?" And if he was still critical, that's when she'd shrug, walk away and go meditate for a few minutes. One of the reasons people in pain are critical and cranky is to drive others away, so that they don't feel guilty about being a burden, about hurting. It's the obverse of "leaving before you get left" that goes on in dating. When we're sick and hurting, we paradoxically want people to leave us so that we can feel at least a little justified and because we can't spare the emotional energy to deal with other people. It's a weird reaction that makes very little sense emotionally, but when looked at in a mammalian sense... Humans can't crawl off to a cave to curl up and die, so we create emotional caves to serve the same purpose.
As for the intimacy.... well.... mom had/has the greatest selection of "toys" known to man (and talked about them constantly... yes, it was TMI for an adult daughter...). (I have no idea how one would go about getting rid of them, so I assume she still has them.) And while I'd rather not have heard about them, I'm very much a believer in the positive effects having them had on her. If going into a store is too much, you might try ordering something online. Since she'd done a lot of her grieving before D. died, she went back to dating about 6 months after he died, and with his blessing. (D was friends with her current squeeze, and had approved of a post-death relationship with her current guy.)
Talk to your doctor about getting a referral to therapy if your insurance covers it - you've got to have someone that you can talk to who is your advocate. If that's not possible, the American Cancer Society runs support groups. Get involved with one. What you're going through is one of the hardest things people have to go through, and there is no reason why you should be going through it alone. Same for your husband - ACS has home volunteers that will come in and talk to him, and a therapist or social worker who specializes in end-of-life and catastrophic illness will probably help him a lot.
And finally.... this is something to consider, not something to act upon. You might want to talk about redefining your marriage as open if the situation looks to be long-term and not terminal. That would depend entirely on your own moral and ethical stances, what the prognosis for the next few years is, financial and emotional needs.... With some people, however, it works and works well. It's not a decision to be taken by everyone, and not to be taken lightly, but there's a lot more to marriage than physical intimacy, and a lot more to emotional health than marriage.
Good thoughts headed your way, Bullwinkle.
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