Is dementia a selective disease? for instance around most of this patience family there is a normalcy towards them and not the aggression that occurs between one of her children. This one has been the primary care giver since she was only recently diagnosed even though this has been a concern that she had this disease for years and she just again was diagnosed in the end of May with this now being in the late stages?
You wrote "The challenges I had was that the staff in ER's and other facilities aren't trained in dementia or neurology and would often not recognize the symptoms. They would just ask a couple of questions and then post "alert, aware of surroundings, etc." Then when I wasn't there - they would ask her things and accept her answers."
TWELVE hours after my father shattered his other hip this Mar 2015, yes, 12 hours!....the hospital doctor wrote about the same thing in his notes that my father was alert, verbal, aware....but when I walked into the hospital room, he could not tell me why he was there. He did not know he had broken his hip the night before...he thought he was in the hospital because he was short of breath due to asthma. But the doctor's visit that morning had my father down as just as normal as could be.....must have been in a rush, not cared, wasn't trained, I don't know. BUT the 2d doctor who came in the next day and spent some time examining my father and maybe had some ALZ/Dementia training wrote completely different notes to the effect that 'could not question Mr XXXX due to his inability to follow the questions and give clear answers to his current state of health'. Yep, I get copies of every single doctor or hospital visit including copies of x-rays, labs, etc, for our files on him.
But there is also true fluctuation in cognitive abilities. In Lewy Body Dementia that is one of the identifying features, and I believe it happens to a lesser extent in other kinds of dementia. My husband had good days and bad days, good hours and bad hours. He wasn't faking the bad times to get attention, and he wasn't show-timing the good times. There were actually fluctuations in how his brain was working.
Gotta say it was SO NICE to have professionals see what I see, and agree that yes, we have a problem.
Her cardiologist however, saw through it and wouldn't let her answer his questions with a question :) or an open-ended answer.
She had standard phrases that she'd use when talking to strangers. They didn't know she had been repeating the phrase to everyone.
And when we'd go to a doctor, she would ask me questions (repeatedly) while waiting in the exam room (ie) which doctor is this? why are we here? etc.. so that when the doctor came in, she could make remarks that indicated she was more lucid than she was.
At age 88 my family doctor diagnosed my father with ALZ and multiple medical issues from labs, x-rays, testing. He had already fallen and broken a hip. he was in a wheelchair, but very mobile in it.
I had been taking care of my father for about 19 years at that time so I knew he had ALZ and had multiple health issues.
My father's regular doctor had been seeing my father every 3 months for about 20 years. He NEVER diagnosed ALZ or any medical problems.
He had been in another nursing home for 11 months, I had him moved to this new facility and a new doctor suggested my father would soon be needing Hospice Care. So this was not a new thing.
I then asked her what did they talk about, did he lead the conversation, was it general conversation, did he state zero pain or medical problems, etc.
She said 'yes, that is how the conversation went'.
I then said "how many 89 yr old men who were coal miners, hunted, fished, were very active their entire lives, broken hip less than a year ago, wheelchair bound, history of bed sores, etc., have zero medical problems or aches or pains?"
Pause to think about that one.
She recapped the conversation as him taking lead, asking HER questions.
This is an evasive mannerism of an ALZ patient. Keep the attention away from themselves, they want to lead the conversations and chats.
the primary care-given (family member for example) is the one who recognizes all behavior changes. Family and friends who rare visit see the 'normal side' of this patient. They think YOU are the crazy one since the patient has normal conversations, acts just fine around them. It is a defensive mannerism.
Most aggression will be directed toward the primary care-taker. Everyone else gets the pleasant person. However, once the ALZ gets to very late stages of this disease, the patient will most likely display their ALZ to everyone and can no longer mask it because they no longer have the abstract abilities (due to brain deterioration) to do so. Good luck with all of this.
I'm glad that not everyone loses their independence with age, I know someone who actually ran a farm well into his old age. He doing everything around the farm and he was still driving at that age. However, at some point his kids took the keys and will no longer let him drive just because of his age. This was for his safety despite the fact he had a clean driving record and was no threat on the road. It seems like at some point other people started taking over farm duties sometime around the time that he got a hospital bed. I'm not sure how long he lived after that, but he was mentally sharp just because he kept busy