How was your family member diagnosed?
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. :-(
From there our story differs, though: next we went to mother's GP/PCP, who referred her to the Memory Clinic - bit of a misnomer, Brain Function Clinic would be better - where she saw, eventually, an Older Age Psychiatrist and a Mental Health Nurse Specialist for exhaustive questionnaires and interviewing. Meanwhile she'd been seen twice by the Community Dementia Nurse (they're sent out to our houses to make sure a) that older people aren't dying before they get diagnosed and b) that the caregivers aren't getting either suicidal or homicidal cough-cough) and she'd had a contrast CT scan done because she can't have an MRI.
So that's how we came up with the *fabulously* helpful diagnosis of "vascular dementia with some Alzheimer's involvement - probably."
So… with a fully co-operative (albeit somewhat complex) patient, a full team of medics and nurses who to a man and woman have been wonderful, and a battery of tests as complete as they can do on my mother, that's how far you get. "Probably."
I completely sympathise with your frustration, and certainly your mother's neurologist sounds - I think the technical term is - pretty flaky, but I just wanted to rub your shoulder blades and point out that we're all seriously into the land of known unknowns here. Don't get driven to distraction by not having a clear diagnosis (though do pursue a far better attitude than you've been treated to so far). Best of luck.
I'm the type if I don't feel comfortable with a doctor, I will seek out a second opinion. I rarely do this because I found great doctors on the first go around for myself.
My parents have a wonderful geriatric primary physician, even though my Mom doesn't like her because she tells my Mom that her physical ailments are *age related*, OMG my Mom doesn't want to hear that. My own doctor tells me that regarding my own health, and I am glad to hear it as that tells me it's not something serious :)
Now ive told him all shes doing and he didnt seemed shocked or alarmed just told me it will get worse?
This is why i asked why cancer gets more support in a previous post? my mum was kinda diagnosed last year NOONE has called me in sat me down and explained this illness to me given me support phone numbers? what to expect etc.... EVERYTHING ive done and learnt has been on the internet and this site?
When i think about it WHAT really WHAT can doctors do? mums losing her mind and until she does something very dangerous "shes doing very well"??? WTF
So frustrating but what can they tell us until we know its getting to end stages? the only thing id want from any of them is support and help from social services but dont even get that once someone is living with them and they are being cared for what can doctors do? even a shrink? DRUGS thats all they know!
As far as the other family members, they are very accepting of whatever I tell them but I just want to be sure what I am saying is really what it is. Family and close friends SEE IT.
I think that caregivers who have some understanding of dementia and how the body works may be able to make a fairly accurate guess of what is wrong. But without collaboration from a doctor, it can be like a tree falling with no one listening. Still, it can give us a direction to go. In my mother's case, I know she needs to keep her sugar up some, but not too high. This is very easy to say, but hard to get her to agree, because she doesn't want to change the lifestyle that may have led her to the current condition. If a doctor diagnosed her with this type of dementia, she might listen more. (BTW, I never use the D word with my mother. To hint that her mind is not okay makes her very angry.)