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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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I video taped it and when that didnt work, forwarded all calls between 9 pm and 8 am to his cell phone which he accidentially called me from.
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Reply to Stacy0122
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The best luck I've had with doctors all the way from pediatricians to my mother's doctor is to write your concerns and get them to the doctor a few days before the appointment. That gives them plenty of time to know what they're dealing with. I even managed to salvage a terrible doctor/patient relationship with the first pediatrician I had for my kids by sending him a letter asking him to explain everything he was talking about because I had zero experience with babies and wouldn't be offended if he treated me like I knew nothing. He kept that letter in the front of my daughter's chart so he'd see it every time we came in, and it made an enormous difference as to how well we worked together.

My mother's doctor when she was still at home would spend all the time in the world with my mom, but she would only talk to her. That wasn't too helpful, since my mom had dementia and thought she was fine and dandy. I started writing to her a week before the appointments, and even though the doctor refused to learn how to use a computer to make her responses easier, she did manually write her responses and have her staff scan the paper to send back to me.

Working with a doctor really is a partnership. They don't have magical powers to know and understand what's going on in the span of a 10 minute appointment when they have to write everything down in addition to dealing with the patient. Do the doctor and your mother a favor by taking your own copious notes and sending them in before the appointment, so they can be up to speed with your concerns.
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Reply to MJ1929
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See if you can get an email address or send through MyChart (if they are on Epic) for the doctor and send a note before the appointment. I do that with my dad and it allows me to go into more detail than I can just being in the office.
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Reply to Babs75
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Kos Lions mane mushroom powder, capsules are the best so you don't have to make your senior a smoothies everyday. My dad has dementia and these seriously help, he doesn't ask the same stuff every two minutes and doesn't argue with me every night about how he thought he already took his pills and why does he have to take them again when he takes these. It's like 23 bucks on Amazon and I know it works cause I put him on and when I stopped giving them to him he got so bad so fast, back on...better again. There homopatchic too so they don't interfer with blood pressure or other meds. Good luck
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Reply to Idontremember
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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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Reply to Dlievense
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Hda5678: What your mother is doing at her physician's office is called "showtiming." Some elders are able to fool the physician (or anyone else) that all seems well for all intents and purposes. How are they able to "actress/perform" you may wonder? Answer - because the doctor appointment is only for such a short duration that they're able to trick the doctor into believing that all is A-Ok, but you know that it isn't. You'll have to record her tics via use of your smartphone and other creative ways. Prayers sent.
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Reply to Llamalover47
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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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Reply to GrandmaC
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gut reaction answer: find another doctor asap. At least do a consult with a neurologist familiar with dementias. I've said this before, but all the local Alzheimer's Assn and go to a support group, or maybe a couple once or twice. The people attending will have had experience in the community and will guide you to the better providers. You can also keep a log of the comments/behaviors, maybe a notebook, and take that in to show the MD or staff. It is not going to be helpful to have a professional who doesn't listen or believe you.
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Reply to gdaughter
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To make a long story short, The relationships I have with her Drs make all the difference in the world. I have become knowledgeable in all he illnesses, diseases, and diagnoses, The doctors respect my knowledge, research, questions I ask them, and overall awareness of my wife's condition.


Now the long story.
For most of the 36 + years that my wife and I have been married, I have gone to as many of her Dr's apts that I could. For the past 20 years, I have been to all of them.

The doctors all know me well and when I tell them something is different they listen 100%. If fact a few of her drs have said I am more of a colleague to them instead of a complaining spouse.

Before she came home in August after her last PT rehab stay (6weeks during covid, so I could not visit her any during her stay) I had noticed her phone calls had decreased from 10 to 15 times to maybe 1 or 2. When she did call, all she could do was cry.

When she got home, I noticed a large decline in her cognitive functions. I call her PCP's office, left a message for him and within a few hours he called me back saying he had started referral process for a neurologist and had call for her an appointment because he was sure the referral would be approved before the appt, date.

The neuro started the testing, which was causing my wife a great deal to duress. Her anxiety level was through the roof , her answers were no where near being correct and after about 60% of the way through she stated I have enough info for a diagnosis. I can't continue to cause this much anxiety for her. Advanced Vascular Dementia.

Since I dover separate from her medical transport so one of her aides could go with her, we did not talk for about an hour, After she was home and settled back in bed, she asked "What did we go to that dr, for." The next day she asked " When is my drs' appointment this week. Completely wiped her visit from her mind.

To make a long story short, The relationships I have with her Drs make all the difference in the world. I have become knowledgeable in all he illnesses, diseases, and diagnoses, The doctors respect my knowledge, research, questions I ask them, and overall awareness of my wife's condition. ( I have had no medical training. My occupation was retail management (problem solving) I became disabled in 1996 about 15 years before my wife was no longer able to work. I am not supposed to lift over 10 lbs, no bending, reaching stretching etc. to help avoid pain increase. I am the primary caretaker for my wife as I am the only one with her for about 16 to 18 hours of the day. How can you stay within the above restrictions while changing diapers, transferring back and forth from bed to wheelchair even with a Hoyer lift.

Again, the relationship you have, or build, with all doctors and the knowledge of your LO conditions are two of the most important ingredients in getting proper care for the individual in your charge.
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Reply to garylee
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I'm not exactly sure what steps you're looking to take. It's really important to keep it simple when reporting to doctors but don't hesitate to state your case. Whatever you say will go into his notes, and this is very important for the future. For instance if you apply to Medicaid, her doctor will eventually need to fill out a "disability" form if you need home care for your Mom. Dementia is a diagnosis accepted by Medicaid for that purpose.
I know exactly what you're saying about your Mom. My mother can pull the wool over anyone's eyes when it comes to a short conversation. She is 98, witty and engaging. But when that conversation ends, she doesn't remember a word of what was said or who she spoke to. She doesnt remember when she ate, what she ate, or even IF she ate. She has no idea what her meds are and will take them twice if left out. She leaves the water running. If she goes anywhere, Doctor, hospital, or family party - its gone from her mind a few hours later.
The list grows.
It sounds like your Mom shouldn't be left alone anymore and you need help at home for her. You can private pay someone local for a few hours to give yourself a break. You can install cameras so you can monitor her from your cell phone. If you are planning to apply for Medicaid so that you can get her a home aide, it's a lengthy process - especially if she has assets. So contact an elder law attorney to be sure you are doing it "right". It's the best thing I did for me and Mom - but Medicaid laws are changing rapidly - so don't delay.
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Reply to NYCmama
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Take a video of the “tic” when she is at home. Play it for the doc. Play a recorded conversation where she did poorly for the doc.
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Reply to KlondikeCrazy
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I learned about show timing here on the forum. I had definitely observed it, but didn't know it had a name. As my LO aged, she increasingly considered doctor's appointments to be more of a social call or entertainment - as opposed to a fact finding mission. I remember going to her house to take her to doctor so-and-so and this caregiving nightmare of a person was dressed, alert, and had made an attempt at putting on makeup. Interesting. At the appointment, it continued. Any time she realized she had said the wrong thing, she would giggle and bat her eyes at the doctor - believing this made her mistake go away. I was sitting just where LO could not see me and I reacted to each thing LO said with a facial expression (look of surprise, dismay, shaking my head) - and doctor would subtly acknowledge that he saw me. It can take a while to get others to understand, but their obligation is to the patient and they have to balance what they are being told with what they can document themselves. It was hard to remind myself of this when I was seeing behavior and tendencies that no one else seemed to see. There was no end in sight as the non-medical onlookers in my life were painting me to be the "confused" one.

I agree with other posters that a letter to the doctor or even a video could help here, but it depends on how well the video actually reflects the behavior (a doctor is not going to watch a lot of footage) and/or how well the note expresses the true need in a concise but clear way.
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Reply to Mysteryshopper
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bowgirl Jan 16, 2021
I have a question, how does proving the decline change the caregiving situation. I do not mean to be rude, do you want to change something? What do you see changing if declines are proven? My mom has her better days. Some days mom is very wiffy, stress and too many things going on at once seem to make it worse. We intend to keep her in her home( her choice) and move her next door to me or in my house when the time comes.... She can manage the house, and some pruning and yard work. Not my first rodeo, I have already had my grandparents til the end and an Aunt til she went to a retirement home. In both cases this was their choice. but no significant dementia, just too feeble to take care of day to day things and cooking.
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Video her throughout the day. Then send that to the dr before your visit with a letter to explain details of what is going on. Maybe that will help.
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Reply to my2cents
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Just take the steps now that you need to be your mothers voice legally. Make sure all her doctors have a copy of POA and if there is a living will of her wishes and healthcare directive make sure they have a copy of that too. Another one to consider that your mother does not have to sign only the POA is a do not resuscitate order. If they do resuscitated it could be more harmful like breaking of ribs and puncture of the lungs. My brother signed this once our mother went into a memory care center. Start now and get all documents in order if you haven't already, because you will need them.

This is what I did for my mother....I live 650 miles away from my parents and when talking with them, I had noticed that something was off with my mother. My father told me he wanted me to take my mother to her doctor because she has her doctor totally fooled. I made an appointment a couple months off so I could go for a visit but in the meantime like response below from "katepaints" I too sent a letter, along with a list of things that my mother had or was doing or saying, and a copy of POA (my brother & I are both listed on POA). The doctor asked her all kinds of questions but when she asked my mother how do you think your memory is of course my mother said fine and I spoke up and said "mom I don't think your memory is as good as it once was." I could tell she was agitated that I said that and I said why don't you let the doctor just checked you out remember how you mentioned that your sister memory was way off like she couldn't remember her address and we just want to make sure you are ok so if something ever does happen the doctor knows what to do". My mother agreed, so her doctor referred her to a neurologist, which did a number of tests plus an MRI. After a couple week the neurologist said that she has Alzheimer's. My brother knew what this meant right away, my dad really didn't know but knew it was bad and my mother just sat there unresponsive; it didn't register with her. At least we had a diagnosis and we knew what we were dealing with and not to question or get upset with mom when she does certain things or says certain things. Unfortunately, 6 months after this diagnosis my father passed away so my mothers care fell onto my brothers shoulders since I lived so far away. My brother stayed every weekend with my mother and during the week (unless I came up to give everyone a break for a couple of weeks) we managed to find a couple of people to help in her care that we paid and we did this for 2 more years, until my mothers care advanced to the point that she needed more care than we could provide and we moved her to a memory care center and she passed 2 years later.
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Reply to Sandyinstl
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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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Reply to TomUs225
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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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Reply to LoveLea
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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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Reply to Marylepete
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Why do you need to prove something to the PCP? Be glad she's with it enough to know things & be able to pretend. Do you love her or want control over her finances. It's a slow disease, be grateful for the times she seems to know what's going on.
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Clsykatt Jan 16, 2021
Kelkel You clearly do not understand the problem. I found your insinuation of being in control of finances vs caring insulting! Being grateful for a slow decline when being faced everyday with hardship over caring does not address the real question being asked here!
HDA I am in the same boat as you!
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Your mother sounds exactly like my Mother-in-law. We saw obvious signs of decline, but she insisted she was fine. Acting on the advice of an elder attorney, my husband went with his mother to a doctor visit and listened carefully to the questions he asked. He also asked for a copy of the questions. MIL had blatantly lied on questions involving activities for daily living. So, armed with the questions, we wrote a two page letter to the doctor giving a straight answer to each question along with examples.

Later, when we sent him court paperwork for guardianship and placement in assisted living, he had all the information he needed for an informed response.
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Reply to VeronicaJo
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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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Reply to NYDaughterInLaw
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Karen51 Jan 16, 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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Reply to JoyfulOne
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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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Reply to katepaints
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JoyfulOne Jan 14, 2021
Excellent info!
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"She cries and begs to go to the dr and when we get there she smiles and says she’s fine."

Don't you just love that? My mother pulled that a few times. She was already in MC when the leg/knee pain, complaints, wailing, etc... I'm certain it was because she never had her knees "done", despite saying for years she should do it (SHE said it!) One staff member was up my butt about it.** Really? What is any doc going to do about this? She was maybe 95 at that time, with dementia. Not about to put her through surgery! I DID make effort to have ortho check (PCP at the time prescribed SO much tylenol and ibuprofen, it was scary!) I DID get her to the ER first, where she promptly said she was "fine." By the time we got into a bed, pending some tests, I listened to her moan and complain for FOUR hours! They found nothing (but didn't repeat xray, as they'd done one maybe 6-7 months before - yeah, fine, but things CAN change!)

After I made appt with ortho, but it so far out, I begged them to get us in sooner, which moved it up a bit. She was "beyond" the whole pain thing by then, but I had him do the injection, just in case (he did xrays, and said if she were 20 yrs younger, we'd be talking surgery!)

(** this staff member was asking me if I liked seeing my mother in such pain. No tootsie, but if the ER finds nothing, what do you expect me to do?? She suggested Urgent Care. Pshaw. They don't have her records, mom can't explain anything, and could deny pain. WHAT would they be doing? Nothing. Nothing like adding a guilt trip, eh?)

If PCP doesn't do regular cognitive tests, or brushes off your concerns, clearly this is the wrong person to work with. Many PCPs don't have enough experience with dementia and CAN be fooled, since they spend so little time with the patient. It might be best to highlight your concerns, list all the signs you see, either through a letter or if they have it, a portal, before mom's appt. Then, leave mom in the room with the doc and/or techs. With you there, she may be more "propped up." The first doc visit we had for this, she started on me, so I left the room. The doc was outside the room and talked to me first. He agreed to do up the letter I needed to become rep for the federal pension, but sadly trying to work with his office, despite documents for what was needed, regular calls, letters, portal notes, nine months later I had nothing!
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Reply to disgustedtoo
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LakeErie Jan 16, 2021
I have no idea what you’re trying to say.
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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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Reply to AnnReid
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The patient portals where you can communicate with your doctor has proven to be a real timesaver for both patient and dr!

I've found that a quick, succint question to one of my drs will often result in a much quicker response than making an appointment (sometimes WEEKS out) and if it something he needs to 'see' he has me make a FU appt.

You can do a bullet point listing of mom's changes. This is kind of how they diagnose anyway--looking at all the 'top issues'.

And YES! It is important to see the right doc! My hubby is a liver transplant patient and his PCP does not like to deal with ANY drama that crops up with that.

(FWIW, many people complain , moan and groan and when finally in the drs office, they say 'oh I'm fine'. Teeth grindingly frustarting for the poor person who took them there.
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Reply to Midkid58
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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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Reply to Grandma1954
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You inform the PCP that she/he is not qualified to judge the level of dementia present nor to do the proper testing to test for it, and that this must be done. You begin a diary of daily activities you see, actions you see. You keep it short and sweet, incident after incident and give it to the neuro-psyc specialist. Some of what you are describing may come under "psych" diagnosis. You need to know what you are dealing with, have it thoroughly tested and staged. If that doesn't work then you make yourself the greatest pest they ever came across.
After Covid leaves you can make ER visits until you get the testing done. Until then, not wise to do.
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Reply to AlvaDeer
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If she's actually been screened for dementia by her PCP, she should be referred to a neurologist for more definitive tests. You can show the dr how far dementia has progessed by journaling her behavior. Many patients act fine when visiting their dr., but you will have your observations to prove otherwise.
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Reply to sjplegacy
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Your Mom need a neurologist. Dementia is out of the PCPs experience. A neurologist will test her. He may order labs to rule out anything physical. She should be checked for a UTI. Write down what you have seen. I always did my notes in 14 font and one page. Short and sweet. What she is doing when she seems OK in front of people for short periods is "showtiming". If her symptoms get worse in late afternoon into the evening, thats "sundowning".

This is what my list was like:

1. Shows signs of sundowning
2. Shows signs of showtiming
3. repeats the same thing over and over.

Give ur list to the receptionist and ask her to give them to the doctor. This gives the Dr. a basis for his questions to her.
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Reply to JoAnn29
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Hda5678, I responded to your other, very similar question. The tick may be caused by her medication, if she's had any new additions or changes in dosage. You can take her to a different doctor if you feel they are not seeing what they should. Did they even give her a cognitive exam? The one that involves drawing a clock and putting the time on the hands? And remembering the 3 words? My MIL had "apparent competency". This is what the social worker called what was going on with her: if you asked my MIL general questions like, "how are you doing?" "What's up?" etc. she would give back answers that seemed appropriate. But when you asked her specific questions like, "What's today's date? Who is the President/VP? What season are we in? She could not answer the questions. We were missing her symptoms for a long time because of this. Video your mom being asked these questions and then take that to her doctor if necessary. Please remember that if someone has medical PoA for her they do not need to wait for a medical diagnosis to provide help for her or even apply for Medicaid. A facility administrator can interview her and be able to determine if she can manage in AL with some extra services (like medication distribution) or MC.
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