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Caringkat Asked January 2014

Mom now wants a second opinion on her diagnosis. Thoughts?

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.

horserider Jul 2015
her from changing a will. The competency bar for that is very, very low.

horserider Jul 2015
(stupid mouse).
...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

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horserider Jul 2015
Fairly sure that 2nd neurologist will also diagnose dementia, equally sure your Mom won't accept that diagnosis either. The problem is that the same part of the brain that is "broken" is the one that can analyze whether it's broken...Catch-22.
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

CalliLaine Feb 2015
My mother was living in her own home in a senior community. I lived two hours north and was caught completely off guard by her early onset of AD (68 years old). She took four days' worth of her medication at one time and landed herself in the ICU and remained inpatient for 5 days. During the inpatient stay, she had an assessment by a psychiatrist and a head MRI; she was subjected to the mini-mental exam and then I was told she could not be discharged from the hospital without 24-hour care. I had her see a neurologist and she was DX'd with moderate AD. She has assets but 24-hour care in her own home was a minimum of $15/hour--out of our range for sure! I placed her in an ALF about 45 minutes east of my home (daughter) and about one month of living there, she managed a phone call to her attorney asking to change her DPOA from me to that attorney! Luckily, the attorney declined assignment and suggested Mom get a second opinion. So, weeks later and a lot of work changing her insurance (there's no Medicare Advantage plans in my county), finding her a new primary doctor and getting a referral to a neurologist--we are in a holding pattern, waiting until 4/15 to see the second neurologist. Mom believes that the HMO system she was in (before the DX of AD; she LOVED this HMO system) has her dementia dx all wrong and she's fine--doesn't believe she belongs in ALF. This is my worry, the 2nd neurologist doesn't agree with the first and I'm left with what to do with Mom? The in-home care costs are still prohibitive....I notice more and more paranoid thinking on her part every time we get together (weekly). Should I write a letter to the 2nd neurologist explaining how her dementia manifests? Her communication skills are high level but she cannot formulate/execute a plan nor problem-solve. Talking to her, though, you'd never know she was compromised....ugh, just so lost in all of this!

pamstegma Feb 2014
Yes imtired bill paying can be quite a challenge. Our county taxes come out in January and MIL hid the bill because she didn't want to pay it. She shoved it into the stack of paid bills. Fortunately, we are on to her game, she hides all the bills she doesn't like in the paid stack.

blannie Feb 2014
Imtired, I'd suggest you take over the finances for your mom. There's no way my mom could handle any of that now. I do all of that for her. She just eats and reads and does what she wants to do that doesn't involve any kind of decision or outreach on her part. I handle all doctor appts (they have my phone, not my mom's), I fix her meds (in containers marked by day and time), finances, etc. She's barely able to keep up with her meds (she keeps forgetting to take doses). She's still able to function (thankfully) because of habit, not memory.

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. :)

Caringkat Feb 2014
Thank you for your replies. Blannie, your mom sounds identical to my mom at this point. Still functioning and competent in lots of ways, but short term memory non-existent. I will bring her to this Doctor next month, and not tell her in advance. You're right, she can't know in advance. Mom had shared her plan of the doctor appointment with a friend, and the friend told her the doctor would ask her questions and "evaluate" her. Well, that was enough to scare mom off. The word evaluation to my mom means being evaluated for competency, which was not why we were going...Argh... Got a call from her Banker this morning. Mom forgot that she asked me to put her utilities on auto pay. She went to the bank yesterday, upset because of course, she forgot that she wanted auto pay set up. Wow. Every day is something new...I know you all feel my pain, thank you.

pamstegma Feb 2014
Imtired, make an MD appointment for say, 1PM. Just tell Mom you are going to lunch, and take her to the MD office afterward. Don't give her time to think about it. Surprise her and take advantage of her confusion.

blannie Feb 2014
Imtired my heart goes out to both you and your mom. I imagine she knows in her heart that something major is going on in her brain and she both wants to know what, but is afraid to know what. And you're caught in the middle.

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.

Countrymouse Feb 2014
Ugggghhhh, feel for you. Have you actually cancelled it, though? Would it be worth holding back and seeing if you can just whisk her casually into the car and off to the consulting room, la-dih-dah, making nothing of it, all routine, nothing to worry about mother…?

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...

Caringkat Feb 2014
I just wanted to follow up. Mom told me to cancel the doctor's appointment, two days before we were to go. She said it would not be in her best interest, and doesn't want to be asked a bunch of questions. I think she knows she has a problem, and does not want to hear it. I can't say I blame her...Back at square one...

cher062 Jan 2014
I am assuming mom is still competent. If she is asking for it then let her have it. I would look for a good neurologist. There are a lot of meds that can slow down memory loss to almost a halt. My mom after her stroke was diagnosed with dementia (not caused by stroke) neurologist actually referee her to a psychiatrist to be evaluated and to help her deal with the diagnosis. Definitely helped her. So if she is asking for it go with it.

Countrymouse Jan 2014
Can't blame your mother for being livid about the diagnosis! - it's just that she's wanting to shoot the messenger. Very hard. But facts are facts; they won't change just because she doesn't like them; and if she won't listen to all the information at least you can. Best of luck x

Caringkat Jan 2014
Thank you Countrymouse, and I loved pstegman's reply, ha! We are located in California. Mom wants a second opinion, as she is in denial of her doctor's opinion of her condition. She went from thinking highly of him, to saying, "What the hell does he know!?" I feel the meds have helped overall, but god only knows if she is taking them regularly and as directed. I have tried weekly pill boxes, notes, labels, doesn't matter. Mom says that she wants to know what's wrong with her, and prognosis, but I know she will not take it well. Mom has no other health conditions to speak of and pretty healthy other than short term memory loss and confusion at times. Shes in her early 70s.

Countrymouse Jan 2014
Imtired2 where are you? I'm just wondering if you're in the UK because you refer to a GP - didn't think that term was common in the US?

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?

pamstegma Jan 2014
When Mom wanted to stop her meds I told her "OK, stop all of them. Where's the Will, because it will all be over in 48 hours."

Caringkat Jan 2014
Thank you pstegman. I have requested the referral from mom's GP, and hopefully mom will be able to handle whatever the outcome of further testing is. Right now, she believes she has old age related memory loss, and is in denial of Dementia/ Alzheimer's diagnosis. She has been on Aricept and Namenda for the past year to help with memory. A well meaning friend of moms told her that these medications can make her worse off and more confused, so now she wants to stop her meds...Arrgh...

pamstegma Jan 2014
Good diagnostics require a Neurologist specializing in dementia and the associated tests such as an MRI or CT of the brain and a neuro-psych evaluation. That way proper treatment can be described and a better prognosis will be part of the picture.

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