When you talk to people outside of caring, especially some politicians, they talk about duty. One in particular has no truck with the idea of supporting carers, because she held down a job as an MP and a second job to boot. Oh - and was able to afford care staff coming in to cover, without having to deal with social services, etc.
Life's not like that for the rest of us, given that we're human. We feel that we must care for our loved one. We feel guilty when we have a "moment of weakness" when we feel a bit sorry for ourselves. Because this is not what we signed up for, not really.
When I got married, I was looking forward to growing old together. Not having bits fall apart and drop off. Not the pain. Not the stress. But they came along anyway. The hard part is getting used to it because what you're going through is grief. A very real loss of the life you had and that you expected to hold onto.
You need to plan in some time out for you. I'm a bit of a photography nut, and I'll arrange with my wife and son that they're set up for the day and I'm off out with the camera for 2-5 hours. Yes, I'm on call, but I can do what I want and go where I want and just take photos of things that catch my eye.
I got this one a few years ago.
That time out gives me a chance to unwind and get my thoughts off the merry-go-round of caring.
My wife has got involved in a research project, and so will have more time thinking about things that make her feel less disabled. It's all good because for some of that time I'll be supporting her, and the rest will be time to get out with the camera. Win:win.
Do you have a hobby or interest you can spend time on? Is there something your wife can do that helps her to think about what she can do rather than what she can't?