I know what you mean about guilt. It's the gift that keeps on giving, for sure. And the preemptive guilt, where we anticipate some upcoming challenge or event and feel guilty because we doubt we will handle it effectively for all involved. And when we have many, good hearted, loving children and grandchildren who could make things easier for the 24/7 caregiving spouse, they mostly refuse to do so. So I feel guilty about that, because somehow it must be my fault that these loving relatives refuse to help in any meaningful way. What have I done wrong? I say I need a week or two to get some things done that have been on hold for years, and the refusals are adamant. They are afraid her separation anxiety, being away from me, will be too uncomfortable for her. So, we just wait until one of us passes??
I am reading "Travelers to Unimaginable Lands" by Dasha Kiper. It's remarkable how many caregivers of relatives with dementia have similar daily struggles with little or no relief. A line from the book: "How is Mitch? How's he doing? Let me tell you something, the patient is fine it's the caregiver who's going crazy."
Now of course, the "patient " isn't really fine, but you get the point. The author explains how the caregivers' expectations influence their distress over the changes in the loved one. We can explore hundreds of strategies, books, advice, insights and yet still be in the same rut with no light at the end of the tunnel.