When describing to my dementia expert my recent observations of mom’s latest dementia-related symptoms (lack of self-awareness regarding eating difficulties, shuffling gait, inability to answer simple questions at a doctor’s appointment, and unexpected difficulty getting into our Subaru), she asked me, “How does that make you feel.”
There was no easy answer. Mom is not the same person she was when I was a child, a shitty teenager, or a young mother myself. This has been going on for so long, through so many emotions (fear, anger, resignation), and so many phases that I don’t really have words for feelings regarding the advancement of my mother’s disease. Being completely transparent, it has felt like she was going to be stalled-out in any number of phases of this illness for the rest of MY life. Please don’t judge. A rough analogy might be that of a young mama of twins, in a dark moment, thinking she was going to nurse, change diapers, do laundry, and manage ear infections for each errupted tooth the twins fussed through, for the REST OF HER LIFE. In my case, until 27+ months ago, my charge was still driving, setting small cook-top/fireplace hearth/diesel stove fires, mis-managing her medication & finances, and letting food rot in her fridge while she added more victims to the science project DAILY.
Since being in care mom has been fairly stable. Yes, there have been many changes and challenges, but she’s been safe. She can’t fuck up her meds. Her fall risk (while she still is one) has been reduced due to well-designed surroundings. She did manage to set her microwave on fire, but it’s since been removed from her apartment, and she doesn’t remember it ever having been there. Until her newest med, mom could be hell on wheels for the staff, behaviorally. All of these adjustments and managements, over the last 2+ years have been a ‘phase’ where her disease path seemed stable. She was irascible! That’s been kinda normal for my mom my whole life! Reassuring in some ways.
My father and I started talking about my mother’s state of mind in 2004. I am newly 56-years old. I’ve spent 26.8% of my life concerned about my mother’s mentition. Looked at another way, I’ve been challenged with mom’s evolving dementia for 39.5% of my adult (over age 18) life.
No small wonder its hard to put words to how this experience makes me feel.