My mother shows all the signs of being Stage 4+ Dementia. She cannot button buttons, zip zippers, write at all on some days (fine motor skills). She is now in a wheel chair due to MULTIPLE falls (she was walking 6 mo ago!), is incontinent of urine, some days can't remember things from day to day, is becoming increasingly non-social (for the past 5 yrs), is beginning to have hallucinations, becomes agitated with us at times when she can't remember things (accuses us of making things up), cannot use a phone or a TV remote on most days, and has poor reasoning skills. One day she fell and laid on the floor for 3 hrs because she didn't think to scoot 2 ft to pull the cord that was in plain sight for help.
We moved her to assisted living 6 mo ago because for 2 yrs she was "forgetting" to eat (she lost 15% of her body wt in 6 wks), and also because of her mobility issues and general safety concerns.
I just spent 6 mo taking her to a Neurologist who did 2 MRI's, an EMG and a lot of blood work (all normal). She is 82 and otherwise is in PERFECT health. They told me this is all "normal aging". I don't buy it. I am an RN myself and I have been watching my mom's decline over the past 5 yrs. But the words from the neurologist deflated me. It is as if they washed their hands of her since they didn't "find the BIG ONE" (i.e., a brain tumor). They have been absolutely no help--except to RULE OUT everything else.
Mom has had Physical Therapy and Occupational Therapy for most of the past 6 mo with no improvement at all. I know in my heart what I see and I don't agree with the neurologist that nothing is wrong; an ER doctor and her previous internist both put in writing that she has dementia. The staff at the Assisted Living facility all agree that she has Dementia. But it feels like it was 6 mo wasted (not to mention the thousands of Medicare dollars) because I expected the "specialist" to confirm what we have all suspected. The very least they could have done was suggest a support group for family instead of pretty much slamming the door in our faces and saying, "she's completely normal". They didn't even do a Cognitive Test because they said it would take 3 hrs and they didn't want to "put her through that".
So, my question to others is: how was your family member diagnosed? Is there anything we are missing? I am at the point of giving up on trying to find answers as to WHY this is happening to her...on trying to restore some sort of quality and independence because nothing has been found. I was at a point some time ago of being "OK" with the Dementia diagnosis but no doctor would look me in the face and SAY IT. Yes, they put it in writing for a diagnosis for a test, but when I asked them straight-up, they would not say anything. Because I have to answer to my family as well as to my mom for what is going on and how we are dealing with it, I NEEDED a confirmation, but I have never really gotten it...except in my heart. :-(