I felt separate from all of it, like I was in a different universe and not a part of anything.
Agree, completely - more like a parallel universe. You look for slices (30 min to 2 hrs) of time to do things while your PALS can be un-attended.
We had a pretty good separation of duties: I did all the yard work, lawn maintenance, vehicle(s) care, repair and maintenance, all grilling, food shopping, paid bills, and pots 'n pans after dinner, and my PALS did the laundry, in-house cleaning, bedding changes, most of the cooking, dishwasher stuff, etc.
We shared the dog care (she met most of her friends in the community walking the dog
).
Now, things have to be prioritized into those precious little time slots. I used to wax the cars 2x a year; they haven't seen wax in 18 months and I'm lucky to give them a wash. I'm constantly behind the curve in yard work, bush trimming, etc. And, it's not just a question of affordability. I grew up maintaining my family's yard and wrenching cars (whenever my sons visit, we always do maintenance or mods to one of our cars) - I enjoy doing it. But now, these activities are at the
bottom of the priority list
.
And, it's almost like it is NOT a conscious decisions to let these things go, there is just no time left after PALS care and doing the higher priority tasks.
As Karen has said before - this disease REQUIRES a constant effort to shift priorities and adapt to emerging needs.
Ken