When care changes over time


With the incontinence again, it was really more of a trial and error thing for us to be able to cope at home. I could certainly see there were certain moments along the way that it probably would have been a good time to reconsider everything we were doing had we not had that resilience. But we did it. And so now, it’s fast forward to probably the next big crisis, as far as her immediate care goes, or her care needs goes, [which] would have been the hip fracture and the mobility, the loss of mobility.

Because she went being 30 years with a brain injury, but being able to ambulate, down to all of a sudden losing that ability. And in those 30 years of being ambulatory, […] the care was fairly arm’s length. And that was the way that it worked for her. And so, the continuity took a big hit when the mobility, the loss of mobility occurred, because we now had to be more hands-on with her. And that’s not—her comfort zone is just not there with that. So, that was a big point where I think, more than anything, we find ourselves a) on the one hand thinking, “We’ve chosen this and we’ve made a decision to do this for her,” and so there’s that somewhat guilt in thinking that we have we can’t keep doing this…because we made the choice to do this and any other option would be a real break in the continuity for her. Even though, again, the incontinence and the loss of mobility are at certain times along the way, as far as the caregiving journey goes, that would have been a reasonable, I think—most people would think—would be a reasonable time to break things up.

Then ultimately outside of that for myself,[…] again because I’ve been a family caregiver for what I consider most of my life, I’ve always made—whether it’s schooling or whether it’s work—decisions and choices that allow me to continue to be a family caregiver. So again, my transition has been very hands-on in the early years, to now more hands-off day-to-day, and really recognizing that with a young, growing family myself, my mother—I don’t think if she had her say—would want me to sacrifice time with my kids that she didn’t get with her kids, because of her.


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