After two difficult family meetings, we have all (my father included) decided it is time to move to 24/7 care for my father. The original plan had been to move my father into the spare room so my mother could retain her privacy. But at her request, my father will, at least for now, remain in the bedroom with her.
I called the head of the agency where we get the aides to inquire about the logistics and he assured me that this is not all that uncommon. They balance the need for oversight and privacy by having the aide spend the night right outside the bedroom. That way the aide can hear when my father stirs or asks for help and still provide a modicum of privacy for my parents.
According to both my mother and brother, last week was a difficult one for my father. He was physically very weak. His swallowing issues are also getting worse and he can no longer manage hard food like bialys without softening them first in some liquid. He still has to avoid hot liquids because of his tendency to aspirate them, so he is pretty much limited to soft foods.
Despite his physical challenges, my father was in very good spirits when I spoke to him yesterday. He was in his own world, by which I mean he was conflating fact and fiction about his life, where he lived, how long he had lived there, etc. But I am ok with hanging out with him in his version of reality as long as he is happy there. He knows that he is prone to confusion and forgetting things, but he he tends to be matter of fact about it. He doesn’t seem to be fearful or frustrated with his memory issues. What he complains about most at this point are his frustrations with his physical health.
For some reason, the news that my father was struggling to eat bialys upset me. Usually, I am fairly good at keeping perspective, but sometimes I remember where this whole process ends and I lose my equilibrium. Learning that my father was basically losing one his favorite foods made me question his quality of life. My brother reminded me that while this past week had been a difficult one for my father, the previous week had been a great one. We need to take the bad with the good and look at the bigger picture and not measure his quality of life moment-by-moment. That advice helped me regain perspective. And served to remind me why my brother is such a good congregational rabbi. Yes, I am a very proud big sister, why do you ask?
And as long as I am kvelling, let me take a moment to brag about my not-quite-6-year-old niecelette who biked 5 miles with her father last weekend.