Caringkat Asked January 2014
Mom now wants a second opinion on her diagnosis. Thoughts?
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We went to my mom's GP. He advised her that she has moderate Dementia/Alzheimer's. After the appointment, Mom told me she wants a referral to a specialist. I hoped that she would forget about further diagnosis, as I can only see this as being upsetting to her. Every time I speak to her on the phone, she asks for a specialist so she knows what is wrong with her, and what to expect. I have to respect her wishes, so have asked her PCP to refer her to a specialist. Has anyone had this experience, and how did you handle it? She accepts Short Term Memory Loss, but that is all she can handle for now.
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...isn't remembering things well (same as a gimpy leg or a bad liver).
Get the Dr.s to work with you on "prescriptions" for things like exercise, vitamins, etc. See if you can get a "secret" medical opinion from one of the Drs IN WRITING that states that in his opinion your Mom is not competent to make complicated decisions on her own, in case she attempts to change DPOA, sell the house, etc. Please note that this will NOT prevent
Learning to "3rd party" stuff helps some. It isn't that your Mom is forgetful, it's that her brain isn't remembering thi
Someti
Also get POA for your mom for healthcare and property. Position as taking away a burden and cause for worry if she balks. My mom was fine with me taking over everything - thank goodness.
Also consider setting up a little notebook where you get your mom used to writing down important things to remember. I'm only partially successful with my mom with that idea because I started too late. I'd find little scraps of paper everywhere with notes on them. She could never find her notes because she'd have so many, spread out everywhere, so I tried to keep them in one spot that wouldn't get lost. I also have a whiteboard on her fridge where I write important stuff like when she took her last shower (she's forgotten and taken them two days apart), new food in her fridge, and that she's 94. She can't remember how old she is, so I find little calculations written everywhere, where she's doing the math. :)
My mom has virtually no short-term memory, but she still read the newspaper and works the daily crossword puzzle in it and cuts out articles for my brother and myself. She can't tell you what she ate 10 minutes later or remember an hour later what my brother said in his phone call, but she still knows how to heat up her own food and run her dustbuster.
My friends refer to her as having dementia, but I don't think that's correct. She has lost some of her problem-solving capabilities, but she's very oriented in time and space and manages in an Independent Living apartment with lots of help from me. I hope your mom has something like my mom's situation instead of Alzheimers. I've never had a full work-up on my mom because I've never felt the need.
Never could see how it was ever in anyone's interest not to get a clear picture of reality! Whether you want to look at it or not it's still THERE...
Mother's GP referred her to a Memory Clinic for formal assessment of her suspected dementia. The referral would have led to a brain MRI if she'd been able to have one (she had to have a contrast CT scan instead, not so useful but better than nothing); following that the assessment included a detailed questionnaire, questioning of me as her primary caregiver, and an interview for both of us with an Older Age Psychiatrist specialising in dementia, who has now sent recommendations back to her GP for action.
Now, if you are in the UK, the above is mandatory - which means that the waiting lists are a nightmare because every GP in the land is required to conduct initial memory tests on request, and refer the patient if the initial test shows a problem. So of course the Memory Clinics have been swamped (the new policy guidelines came in last April, 2013). In our neck of the woods, they're triaging by sending mental health nurses to interview patients at home, trying to filter out frank Alzheimer's cases so they can get them in and onto medication a.s.a.p.
In our case, the initial referral in May 2013 led to ongoing support from the Community Mental Health Nurse (and she's terrific, no complaints) but no appointment until December because mother's main presenting symptoms didn't suggest AD.
The whole system's in a bit of a mess, but the good news is that things ARE moving, awareness is rising, and eventually the support structures will more or less fall into place.
How much do you think your mother really wants to know? This is one of the direct questions the OA Psychiatrist put to my mother, and it's an interesting one. If she wants a second opinion because she's hoping she'll be told she's fine, the GP has got it wrong… hm, where do you go from there? But if the second opinion is as thorough and detailed as the one we've now had, she may find it helpful and in some ways reassuring. They were very good at addressing the stigma of Alzheimer's, for example; and explaining the disease in terms of brain function rather than sanity/insanity; but what cheerful thoughts can they possibly supply when it comes to prognosis? "Don't worry, something else will probably carry you off first?"
The only positive things I've been able to think of to say to her are: that whatever happens, I and her lovely professionals will be there to make sure she's safe and comfortable; and that she's doing the right thing getting as much information as possible so that we all know where we stand.
Would you say that the Aricept and Namenda have actually helped? I'm not suggesting they wouldn't, just wondering what you think; though I must admit I wouldn't be hugely keen on my mother's taking them without a really good evidence-based diagnosis (of course I wouldn't dream of stopping them, either, without full medical back-up). What other medications/conditions are in the picture?