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My 81-year old mother had an initial battery of tests with a neurocognitive practice before moving far enough away from them that we now need to see someone else going forward. I found a nearby practice, made an appointment, and sent them the results of her tests (not great, and she very clearly has executive function challenges). And my mom flat-out refuses to go to this appointment. She says she's going crazy trying to manage things like scheduling dates with friends and organizing paperwork, but she won't accept that her brain is changing and get help for it. She lives independently in a continuing-care retirement community. Any suggestions?

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I agree with Alva.

First priority is to ensure her will, DPOA, and health care proxy are done. If and when she gets a formal diagnosis of dementia, she will no longer be considered legally competent to sign such documents so that needs to be in place first if at all possible.

Second — a formal diagnosis of dementia can be very useful specifically to activate the DPOA. If your mother has dementia and is driving, handling money in any way (paying bills, filing her own taxes, contributing to charity, using credit cards or debit cards) she can endanger herself and others. The only legal way that I know of to take these things away is a combination of the DPOA and a letter from the diagnosing physician stating that she is no longer capable of driving and no longer capable of handling her own financial and business affairs.

If she has already given up these things, you are ahead of the game.

Last thought. If she has dementia and anosognosia (frequently happens with dementia) then you may end up having to use white lies to get her to do critical things that she is resisting. Bathing, changing her clothes, taking pills. Seeing a new Dr might be one of these things. Maybe you can avoid getting a diagnosis. But another thing they can be helpful is getting prescriptions to quell really bad behaviors that sometimes surface with dementia.

I went thru it all with my dad. Cut he was not in a continuum of care place (lived in his own home) so that made it more difficult.

Good luck!
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Reply to Suzy23
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TBSmith Feb 20, 2025
Thanks so much! We have some of these pieces in place, and she is letting me handle her money for the most part, but I’ll be adding some of things you mentioned to the critical to-do list.
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If she's in continuing care, they must have a house medical practice that can serve as her PCP. If you switch her over to that, they'll have eyes on her often, prescribe for her, etc. They'll obtain her past and present medical records, which will inform them of her cognitive state. They'll know when it's time to switch her over to assisted living/memory care. That takes some of the burden from you.

As for the neurologist, that is upsetting her. No point in it, IMO. Leave mom alone, and let her care community do more of the work involved. Be her daughter, not her antagonist. Nothing is to be gained from opposing her at this point. What happens will happen. Amen.
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Reply to Fawnby
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TBSmith Feb 20, 2025
Good advice, thanks! My mom has seen the in-house nurse practitioner, and many of the residents use her as their PCP. I’ve been encouraging mom to do the same, and we’ll lean on them as much as possible.
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Please don't waste your time trying to pinpoint what type of dementia she has or forcing her to accept her impairment. As long as you already know it's dementia, and not some other medical problem for which there'd be a treatment, I would only work on getting her in for her free annual Medicare wellness exam.

Tell her she needs to establish a primary doctor so that IF she needs any type of medical care or medications, she's already ahead of the game. Once you pick a doc for her, create a portal for her and inform them of her prior testing/diagnosis (so you may need to request her medical files from prior doc). As long as she has a primary doc lined up, you're good to go. You need to make going to her doctor NOT about forcing her to accept her diagnosis, but to establish a relationship and have continuity of care, for now.
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Reply to Geaton777
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TBSmith Feb 19, 2025
Wow—thanks for this! Sounds very reasonable and doable. I'm going to read this a few more times, and share with my siblings.
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You need to stop suggesting anything is wrong with your mom's mind. She's obviously suffering from anosognosia, meaning she's incapable of accepting her diagnosis. My mother lived in a Memory Care Assisted Living facility and until the day she died, said her doctor was "full of sh!t" for even suggesting there was a thing wrong with her. She was fine and dandy, it was all the OTHERS who were "crazy" and "stupid". She lived to 95 and had to be on Ativan and Wellbutrin max dose to keep her calmed down from insisting I was hiding her dead parents and siblings in the closets at the Memory Care.

Your mother lives in a CCRC so they will let you know when she needs to move from living independently into AL. Speak with admin about the situation and make sure mom sees the in house doctor from now on. I found the neurologist to be 100% useless for mom. It's not like there's a drug to prescribe to cure them, only meds to treat the symptoms, which any doctor familiar with dementia can easily handle. What dementia patients need is not to be poked and prodded with questions about their memory, but treated with kindness and empathy, left alone to enjoy what's left of their lives, in peace and comfort. I brought mom lots of snacks and chocolates, things she didn't eat while "watching her weight" before dementia claimed her mind.

Good luck to you.
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Reply to lealonnie1
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TBSmith Feb 19, 2025
Thank you! Great advice.
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I would speak with the managers of the Independent Living and tell them that they should approach mom with a "needs assessment evaluation" to be done by her doctor so that they can continue to provide her adequate care in IL.

You should not make this an option. Tell your mother that she will need to keep this appointment for a baseline for her IL community and that you will assist her in getting there. Whether this means taking time off from work or whatever it means you are going to be instrumental in getting her there.

I am hoping documents are done? POA? Advance directives? POLSTS? If not, this is the time also to discuss this with you mother. I would be very firm that this isn't really a matter of choice at this point and at her age, and that this is something that simply needs to get done. That you will assist in it, and that's that.
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Reply to AlvaDeer
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TBSmith Feb 19, 2025
Thanks for your input—I'm very new to being a caregiver for a parent, and there's so much to know! I've been thus far reluctant to share anything with the wellness team at her CCRC, not wanting to raise any red flags. She's only been there for less than 2 months, and we're all hoping she'll be able to live indepently for a while. But I agree that they should have a baseline, and they likely have people and services available that can help my mom AND me. The community's cognitive test as part of the application was pretty basic, and she was accepted, so I guess they've taken a calculated risk. The results of the testing we had done independently were not obtained until much later. POA, Advance Directives and POLSTS are in place.
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Well, there really is no help, dementia is a disease of the brain that has no cure.

I took my stepmother to one, they gave her all kinds of tests and said she had dementia, but didn't know what kind, watch her and bring her back in 6 months. it was a total was of time.

She stayed in AL for 3 years then we moved her to MC where she stayed until she died.

We and the facility observed her and we knew when it was time for MC.

There was no reason to take her back to the neurologist.

Me, I would just let her be, you will know if she is declining.
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Reply to MeDolly
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TBSmith Feb 19, 2025
I appreciate you sharing your experience! My hope in seeing a professional (at least once more!) is that my mom will accept the diagnosis (we never even got to review the test results with the doctor that tested her), and maybe accept some guidance as to how to manage some of the areas of her life that have become so challenging. Right now, she just gets hostile when I suggest anything is wrong with her memory/mind.
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