Thanks for the article on caring for yourself. I find this a really struggle.
We have a very supportive church community, and our two daughters and their families also care a great deal, although they both live at a distance.
Right now we are enrolled in hospice, but because of the long nature of our journey with this disease, we are always at risk for being discharged (US Medicare pressure is to get people out of hospice). It will be much harder if we do not have the nurse and social worker to help us strategize.
My fear is that folks will tire of this story, since it is so long and slow, and they can't see the little steps of decline I see every day. I also wonder about my stamina to walk alongside if my husband's illness lasts for another year, or longer.
But I'm so glad to have found your site, glad you let US-ers read it, and it gives me a sense of not being along.
Nouce