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Thank you so much everyone for your advice and kind thoughts. She's also refusing a mammogram and bone density scan so I guess I shouldn't be surprised she doesn't want to see a neuro. I don't live close nor are we very close but I do care about her and don't want her to suffer. I think I got my dad to agree to meet a social worker while I am there which I am hoping will be a huge help, and I think my brother is coming around too to the idea that she is no longer capable of making the best decisions for herself. The three of them have a dynamic that I don't really understand (and that I opted out of myself, by moving far away) but it seems to be somewhat working for them -- and truthfully I am not willing to be fully hands on in terms of inviting them to live with me so ultimately I need to accept that I have limited influence.
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OkieGranny May 2021
She has dementia and she is 74. Does she really need other tests? What good will a bone scan do or a mammogram? There are too many tests done on seniors, and especially seniors who already have serious medical conditions.
"You are at some point going to need to get a POA that is DPOA activated, or may need to be representative payee."

1) POA/DPOA for both would be a good idea ingeneral, if it can be accomplished before she progresses too far down the road. The need can be explained as necessary in case of emergency, and if you have one yourself, even better! Show it to her.

2) NO POA is needed to be SS Rep Payee. Federal entities don't even honor them. I was able to sign up via my local SS office easily - called, made appt, answered the Qs and waited for approval. Didn't need anything I brought along OR my mother.

The only time I needed something from a doc was for her pension, which was my dad's and it too was federal. Without ANY testing, I was able to get the doc we had at the time (fairly recent addition, due to the impending move to MC) to write what little was required, although it took 2 attempts to get just the right words! Were it not for the pension, I could say I needed advanced testing and medical/doctor documentation for NOTHING.

"You are going to require proof of dementia from several MDs (or guardianship or conservatorship)."

While there are situations where this might be true, it isn't always. IF the POA document specifies this is needed, then yes. IF one has to go the route of guardianship, that will be part of the process anyway. Otherwise, there's no need to rush out and upset her to get this done. Make sure you really NEED the verification first.

My mother never saw anyone other than a PCP (and the only test I am aware of was attempted by the latest doc office about 2+ years into already living in MC!!) I never had to show proof of dementia to anyone, not the banks/CUs, not the CC company, nor even the MC facility. In her case, it was most likely vascular dementia. I base this on her weight and being on BP meds for a long long time, as well as the progression.

There are cases where the "type" would be important, as there might be medications to alleviate some symptoms (or some to be avoided as well.) But there are ways to rule out other forms of dementia, often by symptoms observed and progression. For the most part, there are no medications that really are going to help. As noted above, there are some medications that should be avoided for certain types of dementia and some medications that can alleviate symptoms, if all other methods aren't working.

Unless you really really need specific documentation for something, why put herself and yourselves through this? The doctor has identified her as having moderate memory loss AND she became aggressive during the testing. A neurologist test is going to be more intensive and last longer. Given her reaction/behavior for this initial testing, I wouldn't want to be there!

As for discussing it with her, I NEVER used the "D" word around my mother. First of all, she mistakenly thought it meant you were "off your rocker", aka crazy. It doesn't mean that of course, but there was no changing her mind, even before dementia kicked in! Each person has a different experience, but often there are comparisons in symptoms and behaviors. In my mother's case, her world view was regressing in time. There was clearly short term memory loss (forgetting she said/did something, repeating statements and questions multiple times in short order AND denying there was anything wrong with her.) She was beginning to forget more recent activities or people (she was confusing my daughter with one of her cousins, someone I'd heard about a lot but never met!) She would insist that she was find, independent and could cook (nope X 3.) She would also state that yes, she might forget things, but she was old and entitled to forget things once in a while - problem is it wasn't once in a while, but there was no point trying to convince her otherwise! It's easier to go with the flow and work around whatever they believe.
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To be honest, few people really like seeing a doctor. Your mom might suspect a serious illness like AD and doesn't want to hear it. Fear feeds denial. She may not really see it as a problem and attribute her memory problems as normal aging. Maybe she doesn't like any kind of dr visit, or just doesn't recognize a problem (anosagnosia).

If her PCP referred her to an oncologist would she go or would she just blow it off. There are many types of cancer, some quite curable, some not. Basil cell cancer, if caught early, is very curable, pancreatic cancer, not so much. It's important to know which.

So to with memory issues. The PCP is not trained to administer cognitive testing, nor do they have the time during a patient visit. A neurologist is trained in identifying cognitive problems and their many causes. If your mom is diagnosed with dementia, it's important to know what the cause is. Dementia refers to symptoms and, in itself, is not a disease. If your mom exhibits short term memory loss but can function normally around the house, she may not even have dementia but mild cognitive impairment, which could lead to dementia.

The neurologist can determine the cause. Pseudodementias mimic dementia symptoms, but are not caused by neurological degeneration and may be completely treatable. Thyroid problems, med interaction and even severe stress can mimic dementia. These are rare but they are real. The same as with cancer, it's important to know what you're dealing with.

So yes, she needs to follow up on the PCPs referral. However, nothing's going to happen overnite, so I wouldn't constantly pressure your mom. You have plenty of time. Respect her feelings. As her symptoms progress, she may be more willing to see a neurologist. Keep a record of what you observe. At some later time you might show her what you've seen, but go forward with compassion.
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Yes, she should see a neurologist if it is recommended. It’s true, meds are not always as helpful as we would like but a doctor visit is still in order to discuss further details and concerns.

Wishing you peace during this difficult challenge.
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IMO in order to get around her reluctance she doesn't need to hear about your suspicions or anything about your research into dementia, in fact pushing that agenda will only cause her to dig in her heels. How about something like this:
"Mom, you're way too young to have to give in to this, I want you to see someone to find out what is going on and who can help treat it so you can keep your independence".
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dearstraits May 2021
I agree with you and haven't mentioned anything about dementia. Getting her to primary care was difficult enough, she only went because the DMV requested medical evaluation.

It is difficult because she both asks me for help and then doesn't accept advice that contradicts her world view. Obviously she is scared and I feel bad for her.
You are correct about medications. There is no known medication that for certain works for any dementia. However, there are huge differences in types of dementia and it is important to know. For instance Frontal lobe dementias are different than Lewy's and if you look up Dementias they will give you symptoms. Some involve hallucinations. Some are a result of multiple small strokes. The staging is very crucial. You are at some point going to need to get a POA that is DPOA activated, or may need to be representative payee. You are going to require proof of dementia from several MDs (or guardianship or conservatorship). Only you can decide what to do about this, but it is important. You can sit with your Mom and tell her that this needs to be done, and if it isn't done with cooperations, then it is only a matter of time before she is loaded into ambulance by EMT and taken to hospital where all of this will be done without her input, making it a good deal more difficult for her. Tell her of the changes you are seeing. The fact that she is reacting with such adamant outbursts is in itself diagnostic.
If you cannot get her cooperation then indeed you are up the creek until this comes to a head. And it will. You can do wellness checks. But soon enough it WILL come to EMS taking her in an ambulance for evaluation. It will be VERY difficult at this time to get anything but guardianship, certainly more difficult than getting POA. You may have a very small window of time in which to act now. That is the sad facts of the case. I sure wish you good luck. This is fairly early onset, and that's often one that progresses more quickly. OR it may be anxiety and depression. You can't know without a full evaluation.
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dearstraits May 2021
Thank you, AlvaDeer. I did read about types of dementia. She seems to be fine physically (no tics or spasms, no signs of stroke, and nothing in bloodwork) and she doesn't have symptoms of Lewy Body. Plain old Alzheimers is my guess.

I was reading about anosognosia which seems to fit perfectly and also explains why she doesn't think she needs POA. My dad seems more willing to talk about end of life stuff. I am hopeful that if she seems him agreeing to POA for himself she will be more likely to follow suit.
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