My 88-year-old mother has a habit of laughing at me and calling me a PITA every time I express concerns about her or my Dad. They are both in decline, living in an independent living facility, but as a stroke survivor who has lost almost all of his spoken and written language Dad is much, much more obviously compromised than Mom. Still, I'm not imagining things. Their situation is getting worse. Friday, Dad fell for the 3rd time in about 6 months. The previous 2 times, the hospital said dehydration was the cause, & released him to my mother's care immediately. I understand that dehydration is common among elders, and they sometimes need to be pushed a little bit to drink extra. Dad hasn't been drinking enough & Mom keeps ignoring it and not pushing for him to drink more. She will not allow any other caregivers into their apartment at the facility, even though she complains constantly of what amounts to serious caregiver burnout. Anyway, every time I call or visit, I think very carefully about how to approach my Mom in the most supportive, and compassionate way possible about any concerns I have, because my 16-year-old son is a high-support autistic, & I know what quality caregiving requires.
Here is an example of the kind of input I'd gladly provide, but must be extremely careful about even thinking about bringing up. Dad, my son and I are all on the autism spectrum, I know intuitively as most autistics do that many of our meltdowns are due to or exacerbated by exhaustion, hunger & thirst that autistics of ALL ages (not just elders) have trouble recognizing. Our bodies do not communicate signs of hunger, thirst and exhaustion to our brains efficiently. Many of us have found our own work-arounds, but our family members often don't realize what is going on because they get their information from clinicians and researchers who are about fifteen years behind #ActualAutistics. It is for this kind of reason I am a community advisory committee member for one of the most important annual autism science conferences in the world. In the past eight years, more & more of autistics have been attending and to our immense gratification, more & more researchers have traveled from dismissing us completely, to listening with skepticism, to seeking us out (including me) for input. Last year, a researcher of great renown sought me out for feedback on some preliminary comments he made at a press conference before he gave the formal keynote. He immediately incorporated my comments into that keynote. Along with the support of my wonderful husband and son, this type of experience is how I have regained some of the self-esteem my upbringing damaged.
I get that no one is perfect, and I love Mom. She is intelligent, creative and I think generally does her best to show love as well as talk about it in caring for Dad (when she's not snapping at him to speak even though he can't.) But she's different with me. Last night, when I carefully asked her to please check in with her own doctor about a persistent cough she's had for over 2 weeks (She's ignored symptoms like this for the past 2 winters and ended up getting diagnosed with pneumonia) she ordered me to stop worrying and bugging her. Then she laughed at me. Then she called me a Pain in the A** for the millionth time. Something inside of me broke; I could feel it.
Hours later past bedtime, I suddenly started sobbing. I've had crying jags on & off ever since. She hurt my feelings. Worse yet, she seems to find it funny that she hurts my feelings. I get that some aspects of so-called normal human behavior elude me, b/c I'm autistic. But I also know callousness & rudeness when I see it. Mom may have very little self-control these days, but whether she can't or won't control herself, she's still hurting me & that's not OK with me. I've once or twice tried to bring in other people who care about her to talk to her, but don't want to keep putting good people in the middle.
Thank you for listening.