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I hate that I am so nervous about this, I'm 56 years old for crying out loud and I'm having an anxiety attack over the "dementia" word!


First of all, my mom's appointment was originally scheduled for 3/26. I JUST found out yesterday that when she called the office herself about two weeks ago (trying to get a closer appointment because she felt "sick" but then told me they didn't have any other openings) she in fact did get it switched, so now it's tomorrow at 1:30.


The doctor's nurse is going to call me today so I can give her a heads up on my concerns. She also said I should write them down.


Here's the thing-- I have to do all this on the sly. My mom has already told me she wants to "go in by herself" and I can "ask the doctor any questions after". Basically, she doesn't want me in there for the actual evaluation. This is NOT how she normally is, and she has never asked me to not be present for any doctor, until this appointment.


The ONLY reason my mom would not want me there that makes any sense to me is that she plans to lie when answering questions. She tells medical people she is "fine", and will fake her way through. I myself did not see the full dementia until she moved here six months ago which then terrified me and got me to this site.


Has anyone else dealt with a parent in denial, and/or actively trying to mask the problems? What to do? I'm tried of ignoring the 800 pound elephant in the living room. It needs to be addressed. I don't even have a POA. I need to start having these conversations with her, but she will never admit to having dementia until a doctor tells her.... yes, you do.

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Oh, she will still either deny or forget it after the doctor tells her. She doesn't want to lose control of her life. She is frightened. Or maybe she knows, but doesn't want you to know.
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Sad, isn’t it?
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Wow, that’s tough! I go in at all my mom’s appointments. Years ago I waited in the waiting room because I felt it was private between mom and her doctor.

She asked me to go in due to not being able to hear well and she said she had nothing to hide.

I agree with your feelings on the matter and would be suspicious too. My mom isn’t always accurate with her answers but I don’t know if it’s intentional or not because of her hearing problem. Does your mom have a hearing issue? You could say that you want to make sure she heard everything correctly. I know my mom doesn’t hear everything even with a hearing aid, other ear is completely deaf.

This is so awkward for you. I’d be crying too. I think I would be hurt a bit too. Maybe scared too.

I have medical power of attorney but not regular power of attorney. If you are primary caregiver you should have it. Do it soon if it is possible.

What would your mom do if you confronted her? Would she cancel? Can you pretend that you forgot she said that she wanted to be alone and just walk in with her? Would she ask you to leave? Can you tell her that it’s important for you to be there?
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Exhausted, just talk to the nurse when she calls. Ask her to give the doctor a heads-up. Try to cite specifics that lead you to think your mother has cognitive issues. Be concise. Be factual. Remember that this isn't the first rodeo for the doctors --- particularly the neurologists. The medical staff can't give you information if they don't have your mother's permission, but you can give them all the information you want to. You aren't doing anything wrong or sneaky. In fact, you are doing your mother a kindness by helping her doctors understand her needs, and you are doing the medical staff a favor by alerting them to objective facts. I had to do it with my mother's doctors; many people on the forum mention similar circumstances.
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Good advice!
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If this is an in-depth dementia assessment, you can take a deep breath and relax. Your mother is not going to be pulling the wool over anyone's eyes this time.

Some of the tests she has to do unaccompanied anyway, and with some of them your input will be invited. Did the nurse outline exactly what will be included in the appointment?
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CM,

This is comforting to hear. I love this site for confirmation. It’s reassuring to have ideas and answers.
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She can hear okay. I am still going to try and walk in with her, but if she tries to stop me I will not make an issue of it.

I'm waiting by my phone now so I don't miss the call from the nurse, and I will have things written down for the doctor. I think that's all I can do right now. Hopefully the doctor can offer some guidance. My mom can't fake as good as she thinks anymore anyway. I ignored lots of red flags in recent years but that was more my own denial as a defense mechanism because this is my mother, but this doctor won't have my emotional handicaps so should recognize things.

Thanks for your response. I know I ramble a lot on this site because I am still struggling to accept all this and I'm still so afraid of the future. One of the things I know I need is to have a good neurologist on board and this appointment is the first step. I wish I didn't feel so anxious about it.
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Piper,

Honey, ramble on. We don’t mind! This is very upsetting. I’d be upset too. It’s important to get proper results.
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I have been thru a few evals and its going to be hard to fake it. Make a list of everything you are concerned about and have seen. Give it to the nurse. Moms doctor used my list to help him ask the right questions. I was in the room, but sat in the corner quietly. Dr would look over every so often to get my reaction to a question. Mostly shaking my head yes or no.

Its a series of tests. One is memorizing a picture of a simple house, then drawing it. It will be hard getting around a neurologist. Moms was really nice and made her feel comfortable so she relaxed.
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Great answer, JoAnn.

Comforting to hear.
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Piper,

I hope for both of you that she decides to let you go in with her. Maybe at the last minute she will. I am so sorry that you have to deal with this. My heart goes out to you.
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Piper,

I know you are upset. I would be too. But I have to say, you sound prepared. That is a big plus. You’re going to get through this. It’s the waiting, the not knowing stage that is so hard! Once we know something, then we can take the next step. Waiting in limbo is always the hardest for me.
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Yes, my mother use to let me go to her Drs appointments, but than I notice the signs of dementia and she started not wanting me to go to the Dr appointments anymore.

However, I was able to call her Dr's office and voice my concerns they put a note in her file and when she went for her visit her Dr order a CT scan. She could no longer hide or lie that there was nothing wrong. Now, she has me go because she no longer understand what the Dr is telling her.

People lie to Drs all the time. I have seen when pts are asked are you staying on your diet? They say, "Oh, yes I am. I have cut out fatty food, no salt or sugar. Then the blood work comes back with numbers so far out of range...one blood tube after being center-fuse looks like a milk shake in a tube. Plus, they usually didn't lose any weight.

Here is my point, your mom can fool a lot people, she can lie to her Dr, but she can't fool the test results. The test will paint the whole picture. Her Neurologist will get to the truth.

And if mom let's you talk to the Dr afterwards then make a list of questions that you need answers to.

I have found that the truth always comes out! If she does have dementia she will only be able to hide it for so long.

Good luck!
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D1 to pre-op patient -

Er, you're supposed to be nil by mouth.
I know. I am. I haven't eaten anything.
Hello??? I can SEE the chocolate round your mouth!!!

She blamed the relatives.
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Make an appointment with an elder attorney ASAP. Attorneys are able to determine whether or not the person in front of them understands the legal ramifications of the legal papers they are signing. Get all of her important paperwork done such as living will, will, and durable POA both medical and financial.

In fact, I'd bring up the legal paperwork with her neurologist tomorrow. You may have to be blunt and say that you moved her in next door to you but that you cannot be expected to take on the responsibility of caregiving for her without the authority especially not if dementia is on the horizon. Insist on not being kept in the dark.
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Great advice!
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Good luck with everything, Piper. As I said you are well prepared. Doesn’t take the pain or anxiety away but it helps.
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Had a similar situation with my mom. She had an appointment with a geriatric specialist to do her assessment. She was fine with going until she received the paperwork they wanted filled out prior to her appointment. She flipped out....saying she wasn’t crazy, just couldn’t hear (she had hearing aids, and refused wearing them because they “hurt”).
She has unofficially been diagnosed from a past hospital stay. Long story short she fell, broke her hip and is now in rehab. Rescheduled to be seen in July.....long waiting list.
Make an appointment with an elder atty. ASAP. Try to get both health and financial....saves time and you never know when you will need it. Good luck.
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A good friend told me her mom would sit behind her husband, who had dementia, in the room while the doctor asked questions.  The mom would shake/nod her head to the questions the doctor was asking her husband.  The husband had no idea she was doing that and the doctor was able to get some honest answers.  Of course this won't work with every question but it might help.  She also had pre-written notes to give the doctor and she either handed them to the nurse on the sly or emailed them in before the appointment so the doctor could review them.  Best of luck.
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I did the same thing!! I also gave the nurse a list of behaviors when I checked Dad in. Dr told me later how helpful it was.
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When I took my hubs to his first/last neurology appointment, an MRI was ordered that disclosed many issues, which we addressed once I got my hands on the copy of the MRI.

I was unable to be "prepared" for HIS appointment, and the medical assistants there said, no problem, it does not matter.

I decided, if I was to survive, I could not go behind his back trying to convince the doctors, or anyone, of his condition, and the need for intervention.

The M.D. psychiatrist who first interviewed him knew his diagnosis within the 30 minute interview, and explained (to me) his thought process sounded good on the surface, but notice that he never answers the question, and it goes NOWHERE.

Doctors know, especially specialists.

Maybe, this first time, you could just get your Mom to the appointment?
She must be really nervous too, maybe tell her you will take her to lunch afterwards, or for ice cream?
You have re-confirmed the appointment?

Then you are all set!
Of course, if she is doing anything dangerous, report those as facts, without making a conclusion or an opinion.
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Piper,

Sendhelp has a good point if you can just get mom to her appointment would be a good start and like she stated it is hard to fool a specialist!
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when my mother went for geriatric evaluation, they actually gave her memory tests. When they evaluated her for memory care, again it was a test, a series of questions . They’ve seen it all before and know . If she can fool them , she probably isn't that bad yet. She can try , but she won’t succeed lol!
With her, they did want to evaluate her alone because otherwise they look to the family for cues. It’s hard not to pipe up with the correct answer so if she doesn’t know , just smile or don’t look at her, ie pretend you are looking at your phone or something.
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The doctor can take charge, and ask you to come in the room, saying, " come on,
we need you in here!"

If the doctor is getting nowhere with a cognitively challenged patient, they will often come and get you.

This is something you can ask the nurse.
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There is nothing wrong with you giving the doctor a head's up ahead of time via his nurse and in writing. The office will be used to seniors who 'fake it' and need input from family so they know when the senior is blowing smoke.

I worked in medical offices for years and it was amazing the 'stories' a patient would tell us, thinking they could pull the wool over our eyes.

I see it with my Dad, who is doing incredibly well at age 90. All his shoes are slip on, because he cannot bend down to do up laces anymore. If bits of paper fall to the floor, he cannot pick them up. He has a gripper tool for larger items, but it does not work for flat paper. Dad's long term memory is incredible, but he sometimes gets words like Yesterday and Tomorrow mixed up. He knows what he means, just cannot find the correct word.
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SendHelp,

What a great idea. If the doctor recommends she join in the room it solves everything. Wonderful response!
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If she can successfully bluff them, then that speaks to her competence. Not only is she able to identify the situation she is in, but she's able to come up with strategies to deal with them. That's competence.
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AnnReid Mar 2019
Sorry, but not so. My LO can readily maintain “social banter” but her short term memory runs to a few minutes to half an hour.
The wonderful psychiatrist who diagnosed her dementia described it to me as being like a donut- the shell of recognition and comprehension is very persuasive, but fragile, and the inner circle (memory) is gone. If challenged in her inability to recall, she disintegrates.
She KNOWS she can’t remember things, but maintains herself by joking, asking general questions, commenting about weather or things from her distant past, compliments...... That’s how she “bluffs”.
But she isn’t “bluffing”. She’s protecting who she was before she realized her memory had failed.
By ALL MEANS get in touch with the medical staff before she goes to her appointment. Your observations can be of great value to them, and there may be things your mom be able to do to improve her circumstances starting now.
If she’s attempting to ”bluff” she’s no doubt terrified of letting anyone in on her “secret” but if there are interventions that can be offered to her, there’s no better time than now.
Good luck with whatever you decide to do.
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YES! for 2 years. My mom is still in denial. Sometimes I think she forgets she has a problem. Just recently, she has started saying things like "you know how my memory is..." She won't see the neurologist any more, because he took away her drivers license. She blames me for taking her, and refuses to go back. Her doctor explained all about what was going on (vascular dementia) and then she just forgot it. So, try not to stress about it, learn to roll with the punches (this takes time and I'm not that good at it either)and remember you have to find a balance in living with yourself, and living with your parent who is living with this crappy disease. I wish you the best.
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Before my dad’s first appointment with the geriatric specialist we made a list of his medical history and his concerns. He had previously lived in a different state and while there was told that he had “mild cognitive impairment” which he remembered. I was also able to write some of the things I had noticed on this list. My father’s vision is poor, so he never looked at the paper before the visit. My father minimizes his challenges and is still pretty independent.

Unless your mother is unsafe, maybe the goal of this appointment is to develop rapport with the doctor and come up with a plan of tests. So as the “bad news” comes in she’ll be a little more open to hearing it.
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Dear Exhausted Piper,
I moved my 85 yr. old mother in with me in March of 2018 after my dad passed away in October of 2017. I had mom evaluated by the insurance company that I set up for her shortly after moving in with me and learned she had already been suffering short-term memory loss, which truly upset her to the point of tears. When the evaluator told her, she began to start crying and I immediately asked her, what's your mother's name? She replied correctly and, I told her, You remember what is important and nobody cares about a hamburger, peach and a pencil. That comment lightened the situation and I gave her a hug.
Later last year on October 20th, I took my mom to the movies and noticed she was quietly but repeatedly asking me the name of the movie. I simply responded each time and figured she may have been tired and that is what caused the excessive questioning. However, when we exited the theater, she asked me where the woman whom brought her there was and if dad was back at the house sleeping. She was also referring to people and family members who were clearly not there and deceased. When I explained that I was the one whom brought her, she replied, "No, you met us here." I asked her if she knew who I was, and she replied, "Of course I do, you're XXX." Mom thought I was her sister, whom died more than 15 years prior and I realized later that the dad she was referring to was her own.
I took her to dinner thinking that perhaps she was tired but, strange and inaccurate comments and questions continued. When we got home, I called her doctor and could not get an appointment early enough. I kept correcting mom in the beginning but there was no rationalizing with her - she was in denial and utterly confused. She did not remember my dad passing and refused to believe it. Everything coming out of her mouth was a confused fantasy and inaccuracies.
I ended up telling her the following morning that I'd heard from dad but he did not tell me where he was and simply gave me an address we had to go to. Of course, it was a made up plan for me to get mom to the emergency room of a neighborhood hospital. Her doctor could not see her fast enough and I knew something was seriously wrong.
A nurse evaluated her upon arriving and they admitted her immediately. I stayed with mom in the hospital because I did not want her to be frightened or further confused. A CT scan, head x-ray and other tests revealed that mom had suffered minor strokes, which affected her brain. The strokes basically launched her into moderate stage dementia within the span of a movie.
When they released her, they basically sent us home with no preparation for me on how to deal with someone whom had dementia. I went out of my mind for a few days until I arranged for an aide to come in and help me. No one in the hospital told mom that she had dementia - they told me.
After the hospital, I took her to a different neurologist because I found the ones in the hospital to be inadequate and dismissive. I went to that appointment with her and the aide. When mom asked me why she was there, I explained that it was just a check up to make sure she was okay and that I was being checked out too. I took steps to speak to the doctor, nurses and any assistant(s) so that they would not say the word "dementia" in front of her because mom was not aware or accepting of it. Thankfully, with a lot of work on my part, they complied. I did not allow them to speak to her without me in the room.
Once the dementia meds kicked in, things got a little better but, of course, dementia is not curable. I downloaded a book from Amazon called "The 36-Hour Day" as well as others to help me become more enlightened. The underlying advice in most seemed to be, keep them calm, happy and safe. Don't point mistakes or inaccuracies to them if it makes them feel bad or unsafe. Pick your moments. Some moments may be more lucid than others. .
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Thank you for sharing your story, and I'm sorry you and your mom are dealing with the dementia. You seem like a very caring daughter and did all the right things, you mom is very lucky to have you.

My mom had her appointment- I updated on that here: https://www.agingcare.com/discussions/neurologist-appointment-and-more-testing-447319.htm?orderby=recent

It sounds like your mom's dementia is also vascular dementia. I'm learning that the progress is different than Alzheimer's in that decline happens in steps, that can sometimes be very rapid because of mini-strokes. It sounds like your mom had a significant step down at the movies. Thankfully she was with you when that happened and you were able to keep her safe.

Do you mind telling me what meds your mom got where you saw some improvement? My mom is already on meds to control her BP and cholesterol, and also aspirin. The neurologist didn't suggest any additional meds at this point, but did write an order for physical therapy and more neuro-psych tests.

How is your mom doing now? Is she able to take care of her own hygiene and feed herself? I'm glad that my mom is still able to function independently in those areas, but the mental decline remains a huge worry for me. I will check out the book you mentioned, because like you nothing prepared me for dealing with dementia. I've learned a lot in the last six months from reading online and this site, talking to my own doctor and now this new neurologist who thankfully was excellent with my mom.

I like the advice of keeping them calm, happy and safe. I will always keep my mom safe. That's why she is here. Now the calm and happy.... I try my best but those two are challenges. My mom has always been a negative person and also narcissistic so keeping her happy is almost impossible. I get moments, and good days here and there, which I've come to cherish because they are rare... but in general it's a challenge. We're finally getting some sun and warmth in my area so I'm taking her to sit on the beach for awhile today. This will be her first trip to the beach even though we live a 3 minute walk from the coast. I hope it will go okay.

Best wishes to you and your mom.
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Hi Again,
There is much more that I can say and share but I am getting ready for work now. Please feel free to ask me any questions if you feel comfortable enough to do so.
Wishing you strength and courage on this journey that has no manual.
There are similarities, but no two cases are exactly alike. Each case is as individual as the individuals involved.
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Yes, Dear....My Own Mom's Sad Situation and "Denial" And how She Snowed the doctors to get more meds when they should have cut her off and sent her to a Specialist but when she refused. They "Killed" Her with Kindness.
We are Burying My Mom May3d...Please, Save your Own at Home MOM. She is Worth it.
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Parise, I'm so sorry, what happened? I'm assuming your mom passed since you say you are burying her May 3rd, so I'm so sorry for your loss.
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Let her doctor know ahead of time, of your concerns. They will do a mini mental. tell the doctor what you would like for your mom to do like make you POA ( ask him to give it as an 'order'). Hopefully he will ask to speak to the both of you together if he feels she has cognitive issues. What I have learned, is that whenever possible get the 'authority to be the bad guy. you will have enough battles on your own. When my dad, one brother took my mom to a geriatrician to find out what was going on and he gave her Alzheimer's diagnosis, she looked at me and said, "You brought me here just to tell me that!" Several days later when I wanted to talk about how we should prepare deal with it, she told me to never use the word, Alzheimer in her presence and not tell anyone (especially her mom, who would say to me that something was amiss with mom and i should get her to a doctor.). It is amazing to me how the mind can't process something correctly, yet can come up with a logical excuse of why it happened the way it did, After some time the explanations become less logical. The other thing I have learned perhaps because they can't make logical sense of things they are very attuned to emotions. Ex; My mom 6 years after my mom had the ALZ diagnosis, she was living in ALF, but I would take her back to the farm when I visited my dad. During a visit my mom asked dad, "Are you my dad?" Deaf Dad says "What?" I quickly intervene saying it is time to get back to the ALF. As we walked to the car Mom said to me" You know, I miss my dad. I miss everything. Everything is such a mess." She knew from my tone of voice she said something inappropriate, but at the time of saying it, there was no recognition of its lack of logic.
Summary: Be aware of your emotions and how you are displaying them. Let everyone else be the bad guy with the bad news, when you can. Find creative ways to save their pride and feeling of independence as long as possible. I, at one point put high priority about safety and cleanliness, but have come to feel if others are not at risk and I have done all I can do without decreasing mom's
contentment, let it slide. Her quality of life is going to get worse, so attempt to make it the best it can be. Look for the blessings. One of mine was that my mom had to quit working because of it, so I got more leisure time with her than I would have, she was more open with her thoughts, as long as it was not about the ALZ.
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Thanks for sharing. I updated on the neurologist appointment here:
https://www.agingcare.com/discussions/neurologist-appointment-and-more-testing-447319.htm?orderby=recent

What you said about let the authorities be the "bad guy" is exactly what I had in mind when I had to "sneak" my note of concerns to the doctor. I will not focus on "you have dementia" to my mom, ever. I see no need to stress her about it. She heard what the doctor said, she knows she's slipping. After her neuro-psych eval, then I am going to gently suggest we get a durable POA in place "just in case we ever need it", and as long as she agrees, then I plan to just put it aside and pretend (with her) that life is normal, even though it's FAR from normal.

I also hear you on saving their pride. My mom has always been a proud independent person. She never wants any weakness exposed. I can play that game, because the last thing I want is for her to stress out more. Like on the way home from the appointment, she made one comment about the memory test and I chimed in that I forget stuff all the time, and we laughed together and then it got dropped.

So in front of her, I make light of all of this stuff. When I'm alone is when I fall apart.
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When my Mom had an evaluation with a geriatric neurologist, he only had me in the room for the first 10 minutes or so. Then he tested her for the next two hours using exams specifically designed to determine if her level of cognition. When we went back for the results, I was amazed at the intricacy of the questions. And, even though I knew my Mom was declining, I was shocked at how poorly she did. She is also a master at hiding what is going on. But, there was no way she could hide it with the questions she was asked. If you don't feel this neurologist or the tests he performs are able to give you an accurate evaluation of your Mom's cognitive function, ask her PC for a referral to a neurologist who will. Of course, this won't change what is happening, but at least you will know what you're dealing with and be able to make more informed decisions for your Mom's future care. Best to you and your Mom.
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Thanks Ava. She did the mini test at the appointment, and will be going to the neuro-psych eval next. The doctor said it's about four and a half hours and if she gets tired they can split it into two sessions. That seems like a long time, so it will be extensive.

I'm curious about what questions they will ask? Do you know any specifics from your mom's test? On the mini- MMSE she got a 20 out of 30. But the doctor kind of gave me a warning imo about the other test- because she said some people with dementia can get a perfect score on the MMSE depending on their previous brain reservoir, like a person who worked all their life as a physicist.

She also asked my mom if she was right or left handed (she is left handed) and made a note of it in her chart. I wonder why that matters?
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Once a person reaches a certain age, memory loss is inevitable whether it’s dementia, Alzheimer’s, or Lewy body. Yes, some drugs may help but there is no cure. Why is it so important to make sure that your LO is told that this is occurring? It won’t change a thing! In most cases they won’t remember anyways and they’ll continue to insist that everything is fine. Instead of insisting that the doctor be made aware of every sign and symptom, and provide a diagnosis, devote that time to finding a good environment for your LO. The cards will play out.
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Mom1928 Mar 2019
Very true! It's nice to confirm what we already know I suppose. It did not make a bit of difference. My folks insisted they were fine, although we knew better. We had bad doctors too. They did nothing to properly diagnose. But just handed out the typical meds, which in our case did not work and really made them worse. So, I focused on learning how to deal with it myself so that I could deal with them. It a hard road
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I just went through this last summer. I knew things weren’t “right” with Dad but things got worse when he moved in and I could see how he functioned day-to-day. To make matters worse, as a retired medical professional, a dementia diagnosis carries a real stigma for him. Prior to the appt, I contacted the office and discussed my fears that he would cover up etc . On the day of the appt, they asked that I sit in. They asked him a lot of questions and then asked me for my view which was quite different. The neurologist is highly trained dealing with this issue. I suspect they will want your input. It was hard for me to answer some of the questions as I knew it would upset dad but now 6 mos later, Dads accepted the diagnosis and things are calmer - for both of us. With a proper diagnosis, we’re treating dad’s diagnosis as best we can and I have a clearer understanding of the causes of his behavior and the path we are on.
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Yes I have. I visit the doctor's office beforehand with a typed list of questions or a brief list of my observations (sort of a heads up so to speak) addressing your concerns about your mom. Otherwise the doctor is not getting the true picture of what is really going on. Also, it becomes a complete waste of time and money for everyone involved.
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