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My 85yo mother’s dementia has progressed significantly but she can still make enough sense to fool you as long as you don’t talk long. After that she repeats the same questions asks off the wall questions forgets 2 minutes ago all the way to 30 plus years ago. She cries and begs to go to the dr and when we get there she smiles and says she’s fine. When they leave the room she will ask me where are we and why are we here? She has pulled some of her hair out and has developed a constant “tick” of picking and rubbing her face and head. I feel like the doctor thinks I’m exaggerating but it is so much worse than they know. What should I do?

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My 64 year old brother has all the signs of early onset dementia. I live 1500 miles away, have taken over his affairs and booked an appointment with a neurology practice. My niece took her dad there. Before the appointment I sent copies of POA for finance and health, HIPPA form and advanced directive. Then I went online and filled out as much of the patient forms I could. Per their instructions I faxed everything so all he had to do was sign papers and complete a couple of health surveys. I also wrote a two page letter describing all the problems—memory problems, the change in sleep patterns, not being able to solve problems, examples of steep decline— getting a card for someone dying of pancreatic cancer and then not recognizing her name seven weeks later when I told him she died. My niece told me the doctor didn’t spend much time but ordered blood work, MRI and CT scan. He already had the picture.

It might help to schedule an appointment to talk to the doctor by yourself so you can explain things. Geriatric medicine doctors and neurologists are better equipped to help you figure out what to do. Good luck. This ain’t easy.
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JoyfulOne Jan 2021
Excellent info!
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Write down dates and times of the cognitive decline you are witnessing and ask her PCP to make a referral to a neurologist, who will put her through a battery of tests that will indicate the level of her dementia. She most likely will get a brain CT.

If you don't already have durable power of attorney, make an appointment with an elder law attorney. Attorneys are used to determining whether or not their client is capable of understanding the papers being signed.
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Karen51 Jan 2021
Isn’t it crazy that lawyers are better able to diagnose people’s dementia and levels of capability rather than the doctors!
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Give specific times, days or dates. My MIL was really good at masking.
In front of her, I let MD know short, specific instances- like what you related. Tell him/ her how fast the advance is, any weight gain or loss, and the new ‘ tick’. It could be a med side effect.
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I agree that seeing a Neurologist or a Neuropsychologist would be far better than seeing her PCP.
The neurologist or the Neuropsychologist will work with the PCP, the Neuropsychologist will work with a Neurologist and a PCP. They are much more equipped to assess the stages of dementia.
As far as "showing" the PCP decline if you keep notes or better if you can provide a vide of a conversation with your mom that "goes off the rails" that might help.
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You can arrange an appointment with a geriatrics qualified neurologist, psychiatrist, psychologist, licensed social worker yourself. IMNHO, GERIATRIC training is critical.

My LO also could perform “social discourse” adequately, but after her testing the psychiatrist indicated that she was overwhelmed by anxiety that someone could “find out” that her memory had badly failed. Her actual language functioning was far more impaired than had been readily apparent.

If you’re not satisfied with the first try, a second opinion is always an option.
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I have found the best way is to have a letter typed up for the Doctor stating everything you want them to know. When you check in at the desk for the appointment slip it to the receptionist with a note on top that says, please give to Doctor before he sees (name). The Doctor really appreciates it and you feel you have had a chance to state all, so the Doctor knows the full story. They also know patients are real good at covering up for memory loss.
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The PCP or Geratrics doctor would know the truth since there are several stages of dementia. I know that at times, you feel like you are exaggerating the whole thing, but you’re not. It’s dementia and it shows up in my ways. My mom sundowns every day with 2 to 3 hours of moaning and crying for no reason. Although she’s on anxiety medication, it doesn’t really work. When I would tell people about this, they never believed me. Finally I let people witness my mom’s sundowning episodes. And then they believed me! (And realized the hell I have to endure each afternoon.)
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If you are making morning appointments try making them later in the day. Dementia patients usually have more difficulty as the day goes on. This will be harder on you but it is imperative that the doctor understand what you and your mom are experiencing in order to help you manage the situation.
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I have scrolled thru most of the answers, helpful and not. You need a diagnosis to properly treat Mom, there are meds that can help. First ask DR. for a cognitive test! It should have questions like what season is it. I will tell you three words, ask to be repeated later, draw a picture of a clock face with numbers, draw the hands at 1:50 or some other time, spell "world" backwards and count down from 100 by 3s. You can even ask her some yourself, 3 words and have her repeat them, 15 minutes later, remember those words? Can you tell me? Also I agree with the later afternoon dr visit, the confusion level increases. My Mom has had Alzheimer's for probably 15 yrs, diagnosed 8 yr ago, was able to fool everyone for a very long time. Read the book
The 36 Hour Day very informative and helpful. If you do not yet have power of attorney for finance, health care etc. get it. See an attorney who specializes in elder law, too many mine fields to cover here. Best wishes to you and your Mom, they call it the long goodbye for a reason.
I lost my Mom at least 3 years ago, but she is still alive in a memory care near me at age 95. They do EVERYTHING for her, she has no idea who she is, where she is, lives in this moment only. Can not remember what happened 5 minutes ago ( sitting at the table " Mom was lunch good? Has no idea she just ate.) Has no plans for later. She has wonderful caregivers, is not in pain and just tested positive for Covid. I have not physically been with her since March. It breaks my heart everyday. Been on hospice for 20 months, we pray every night she does not wake up. Good luck.
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I have things to tell my husbands neurologist at times so I write her a letter before his appointment. If the message isn’t lengthy I will email her what I think she needs to know.
DL
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