My mom is 85 this year and exhibiting increasingly demented behaviors. She has caregivers around the clock now, but I just found out that the overnight caregivers have NOT been telling us what she's really like at night.
She does not sleep. She sits up until 4:00 or 5:00 in the morning because she is insomniac, and is afraid to go to her bed. She feels "trapped". She dozes in her chair for 20 minutes at a time a few times a day, but never rests.
If the caregivers try to encourage her towards bed, she gets angry and thinks they are "controlling" her. She retreats into a posture similar to a 5-year old who doesn't want to be told what to do but doesn't really know what's good for them.
She sits in her chair and takes her clothes off for no reason. She complains that her undergarments don't fit right.
She is now refusing to eat regularly, there is something "wrong" with everything that is presented to her. "Too wet, too dry, too early, too late, I don't think I'm supposed to eat that". Then someone has to make her toast at 4:00 in the morning because she thinks she is nauseous, when in reality she's just starving.
My brother was living in the home with her,but 5 months ago he had a health crisis and ended up disabled in the hospital. Mom has gone badly downhill since hes been gone. He won't be able to come back home. I don't know if at this point having him home would make things any better since he wasn't really the "hands-on" caregiver anyway.
She is having panic attacks on an increasing basis. She will suddenly become very agitated, and start heading for the door of her house, feeling "trapped" and claustrophobic, or thinking her caregivers are somehow keeping her "prisoner". She will go out the front door, walk up and down her driveway, but still think she is "trapped". Escaping does not fix the panic.
She has multiple myeloma, vitamin deficiencies, protein deficiency, we suspect celiac (I have it, my son has it, one of my daughters has it). She also has a couple of tiny thyroid nodules (8 or 9 mm) and has borderline low thyroid hormones (T4 is .8, bottom of range IS .8). Osteoporosis. An MRI a couple of years ago, when this all started, revealed no strokes, no other damage in the brain, no atrophy.
An EEG revealed what the doctor thought were "micro-seizures". She was supposed to get the 3-day EEG, but at the time my brother was in charge and he never set it up.
What do I do?
Institution? Moving her to an institution will kill her. I live 600 miles away from her, but find myself in charge now. And very uncertain what to do next.
Thanks, if anybody has read this far.