I understand the behavior differences that were discussed here. I sent my mom's doc an email that highlighted some of her Alzheimer's-related issues, so the doctor was informed, but I wasn't saying anything in front of my mom. Ironically, my mother said, "You must have sent Dr. So-and-So a letter, so the 2 of you would be in "kahoots" with 1 another. (My concern was about my mom wanting to drive. I drove her where she wanted and needed to go, but she wanted to be behind the wheel, but I felt that her lack of judgment would have precluded her from doing that safely.) My mom picked up on the "letter writing campaign," but she accused "people" of coming in a second story window and stealing her cup of (decaf) coffee, siphoning it out of her cup. I guess she forgot that she had just finished the cup. Alzheimer's manifests itself in very unpredictable ways. I even wrote a book about our experiences taking care of my mom during this time: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."

Personally, I do love and trust my wonderful opthalmologist and the wonderful surgeon and therapist who took care of me and my knee replacements.I have in the past 10 years had a hard time finding a good primary care physician, but I have not given up.Medicine and doctors are as a whole great. Nothing and nobody in this life are perfect.We all must do the best we can with God's help.

All this info is just astounding! I went for a n annual free wellness chech at age 84. I was given a "memory test" so called. The nurse was amazed because I very easily scored 100%.All my elderly friends were also similarly tested when they went for wellness checks.Until I read your article, I assumed such testing was routine. i cannot understand why these other people were not given such tests.The test was ratherlong, but extremely easy. it was all oral. My friends also easily passed their tests.Why are some elders tested and others not? Strange!It is especially strange since apparently those in the comments and article were incapable of living independently.My friends and i are all very independent and manage our own households.Why are some tested and others not? Also, i wonder what would have happened if i had not had a perfect score/As to other health symptoms, it is impossible for me to comprehend why anyone of any age would go to a doctor and not tell him or her about health problems. Why do they go to the doctor then in the first place. Are they perhaps forced into going?

My husband was doing this all the time. I discussed his memory loss with his doctor who would trade fishing stories with him, then tell me he was just fine. Every time we went to the doctor for something, my husband was just fine with no complaints.
After a couple years, the doctor finally referred us to a neurologist who made the diagnosis of Alzheimer’s.
Recently my husband had sever acid reflux pain at home but again was completely fine at the doctors office.
I always looked like an over concerned idiot!
I finally got the idea to videotape my husband, using my phone, while he was in pain and complaining. After showing this to the doctor I finally got them to take it seriously and we got more than all the necessary tests and treatment.

This is such great advice, and I wish I'd had it years ago. I'll be sharing it on my Facebook page because it is so important. It's too late now for my mom, she fooled her doctor but good. But he also was not a great doctor. I wrote my own blog post about it and would love for you to see it.

thejessonpress.wordpress.com/2018/02/01/dementia-did-not-have-to-happen-an-angry-rant

Thanks for the great recommendations. While I am fortunate to have a great relationship with my mother in law and her physician is responsive, she resents and denies the "conditions" that we deal with daily, i.e. IBS, Rashes, Shortness of Breath, Aches/pains, etc. As such, I am not sure the doctor has run all of the tests necessary to really diagnose what is going on and she is not open to having tests performed. Definitely a rock and a hard place. Will use the diary and send an email in advance of her next appointment to prompt the conversation.

So frustrating!!!

My Mum does the exact thing when seeing her Doctor. I've been taking care of my Mum for two years. It's been hard and I've not only learned so much about my Mum. I've learned about me. I read your personals and you have helped me ten-fold. Thanks so much for sharing and giving me hope and insight.

Wow. Endless fun! Just think how much of the doctors' and nurses' and your children's time you could waste... and just think how convinced everyone will be of your complete soundness of mind if you pull a few stunts like that. It should settle the argument once and for all.

If you really don't trust doctors, don't register with a doctor. But don't seek medical advice and then ignore it or subvert it and *then* blame the doctor when it all goes horribly wrong.

This is why I advise my friends who are advancing in years to avoid any medical professionals if at all possible. Don't get addicted to doctors! You will live much longer! They are not gods! If an elder ever sees doctors I advise them NEVER to post the names nor numbers of these doctors on their refrigerator doors nor inside the fridge, nor on a post-it, it is a dead giveaway to the kids, who are dying to contact that doc and get the elder incarcerated in an institution. I also tell my friends to supply their doctors with fake contact numbers of nearest living relatives, and if necessary, change doctors. I have seen so many elders scared to death of their own families. Many of these families just don't care...except about money. I have heard so many families threaten their elders repeatedly. It gets to be like an all-out war. I am glad I do not have kids. The incarceration of elders in the name of "care" is a financial racket, just tossing them out.

And sometimes they do the opposite (for probably the same reasons)--keep things from family and tell all to the doctor. Meanwhile, you're sitting there in the appointment shocked as you're hearing for the first time of symptoms that they're having. It's infuriating, because here you are, thinking you're there to help them and had they told you something sooner, you could have helped. But instead, they keep it from you and save it for the doctor. In my mother's case, she puts an awful lot of stock in medical professionals.

Husbands do the same thing…my Dr. sent me home with the form for baseline questions for memory status etc….no one in the family knows how to get the information…he just argues with us and says among other thing we didn't explain it right or wants to know why that question…not much help there.

Good article, but what to do when a parent is in denial? What can a doctor do when he suggests a psychiatrist? This has happened to me last yr. I told the doctor that my Dad is in denial, and that he did not think that he had any emotional problems. He has recently ran me off, and threatens to call the police on me when I have come to help. He has accused me of causing him to have heart problems after our short visit. He has called relatives to accuse me of all kinds of things; from being a liar to stealing. He has caused me stress, but this is nothing new with him. He has been this way for most of his life, says his own sister.

WHERE was all this advice, when I needed it?!
It might have helped at least organize my thots and helped me to focus on a "recipe" for how to proceed more effectively!
Mom actually had ONE Doctor, who actually went to read the letter I submitted just prior to that office visit with Mom, which prevented his just giving her a narcotic pain med. She was so sweet, coy, school-girl charming, he ALMOST fell for her request. But he chose to go re-read the letter I'd just submitted for her chart. Came back into the exam room, and wrote an RX for something more like a strong NSAID. IF we'd been able to keep that Doc, there might have been far better evaluations, documentation and help.
Mom learned what that RX was, once in the car, and was LIVID. But she didn't know I'd put that letter in her chart there.
Trouble was, that did -zero- good, when she was later admitted to a hospital in another town to handle a larger health issue. Staff there only heard "suicide risk in the past", so ordered a Sitter....and had a Shrink come do a quickie evaluation. By that time, Mom figured out I'd told them about her, and was plenty furious.
So she told them to block me from interacting on her behalf with anything...except it was OK to go home with me again...and handle her affairs by herself, when she'd not been able to handle them for several years already??
Go figure?! ...But where she could continue raging.
She's been expert at "show-timing" for years: "company manners" or putting on the "best show of normal" they can, are survival tactics in almost any animal, including humans.
Some life circumstances cause this behavior to be more pronounced.
Animals instinctually fake normalcy to prevent predators attacking.
Humans do it too; fear of losing autonomy is a more visible, socially acceptable, rational-sounding cause--it's real, too.
But the root cause of the need to hide physical and mental defects goes much deeper, is an automatic deeply ingrained instinct, which can still work amazingly well in those who are compromised by some levels of dementias or mental ills.
Bottom line? It's survival fear.
Fear is pernicious at any age. Learn to reduce fear, and it gets some bit easier to function.

Excellent article - and so very very true. Family needs that type of advice because in our experience it was so darn hard to get help for Mom. She can "charm the socks off" everyone, pretend she is funny and happy and aware, which she isn't - she shows her real self only to her family. She can act perfectly normal in front of others and fooled the doctor for years! When she is confused she pretends her hearing aids aren't working so people don't know she hasn't a clue what is going on. She takes her cues from others around her, laughs when they do, frowns when they do yet is totally unaware of anyone else but herself. She is in survival mode, hiding out of embarassment or whatever. I had to make a list of her behaviors and gave it to the doctor ahead of time to make sure she asked her specific questions and tested her for severe dementia. Even with her new doctor, it took two visits to convince him. Sadly, the doctor listens more to the obviously incompetent senior patient than to family. Doctors should be prepared at every visit to ask qualifying questions of dementia patients to determine the severity especially when family expresses concern. It wasn't until Mom's doctor FINALLY asked her questions like "where do you live" "what day is it" "who is the president" etc that Mom was caught out and confused, and FINALLY the doctor diagnosed Alzheimers (could be any form of dementia, but the point was, we were finally given some legal way to move Mom where she got the help she needed! Thank you for the article. I hope doctors read it!

Good things to know! I hadn't considered writing a letter to the doctor with my observations. Mom, for the most part, is good at indicating new issues. We make a list prior to her doctor's visit so that she doesn't have to remember everything and so that we agree on what might be new and different symptoms.

Yes this is a problem for me too. I am caregiver firmly 90 year old husband. He is still handsome and charming and dresses to the nines when he goes to see the doctor. He makes polite chitchat and really goes the extra mike. At home he wallows in self pitt, wearing an old bathrobe and moaning and groaning and asking questions that indicate he is mentally somewhere else. I was beginning to think he was "exaggerating" his problems at home. I see that he is to some degree acting both at home and in the doctors office. I guess that is normal andI have to make allowances. It was helpful to read everybody's comments on this.

Amen...so true. My husband is exactly like this He's barely able to walk across the room but he tells his Dr that he can hike! WHAT? It's unbelievable how great he feels when he sees his cardiologist and has no issues. So I just shake my head and I try and tell the Dr that no, he can hardly walk let alone hike. But it's hard to do because you are all in the room together. So, I usually just let my husband say what he wants...it's his health. He won't go even go to the Dr. unless his prescriptions are expired and he HAS to go in.

This is very frustrating, because our doctor overestimates my grandma's ability. He "can't believe" she's worse at home than when she is at his office; to him she's a sweet little old lady who's sharp for her age. To us she's a nightmare screaming all the time. He has been very passive in her treatment plan, and he's pretty much useless. So frustrating.

My mother is in a memory care assisted living with later stage dementia. She sits quietly mumbling all day long to herself, shaking, itching at her legs, wiggling in her seat, and begging to die. The staff treats this as "okay" because she is quiet, stationery, and she is able to pull off the "polite behavior" when anyone makes small talk with her. As a family we are going mad watching this , as we feel it's mental torture as opposed to any physical pain. She is given a slew of medications to "calm her down", none of which are working and we are told she can't take anything more or she will be unable to walk or function at all. At our wits end as to where to go from here..all I know is if that were THEIR mother they would feel completely differently as to what's "okay"....

It is a waste to go to these drs for my dad. They walk in the door and see dad and say well you look good. They don't see him while he is at home with my sis and me. I guess he does look good cause dad wants us to shave him, and get him all nice looking for the dr. to tell you nothing. Maybe dad looks too good that they don't think nothing is wrong with him. Maybe we need to carry him to the dr. office smelling, not shaved, hair not combed, trach area not cleaned, then maybe they will say well something must be wrong with this man. It just get so old going to these drs appts. and not learning anything new. Dad has a appt on valentines day at duke. And that is going to be yet another wasted trip and gas. And i really do not like his dr up there. But i know sis will want me to go with her and dad. Just a waste of time these drs appts. ugh....

oldcodger2 .... you have said the other things that are on my mind. We are definitely put between a rock and a hard place, damaging our own health, well-being and relationships in the process. And why is it we are good enough to deal with all the unpleasantness, but not good enough to be trusted in our efforts to make things better and safer??? And when things hit rock bottom ... it's quite true we could be seen as being neglectful, even though we've had no legal authority or obligation to oversee our parents and their issues. I agree with others that we do have to respect our elders' right to make their own decisions and live their lives as they choose. However, if they are a sinking ship, and we have done all we can to avert the situation, they should not expect us to go down with them .... and neither should anyone else. I only pray that if I am lucky enough to grow old, that I will have faith in the two beautiful children my spouse and I have raised, with our values, to do right by me .... and that I will never, ever put them through the pain and agony that that my father is causing me.

EXCELLENT ADVCE!!! THANKS! For decades we have been playing this game from one doctor to another. My 35 years-past-deceased step-father had quite a reputation, and the medical community does not listen to me...or something like that! It is heartbreakingly infuriating. I have had so much incontinence cleaning to do lately and continuous hourly reminding about meds and safety. I did not want to go into the medical field and I am daily punished.

I hate going to the doc with mom too because I have to sit there and go along with everything mom says. Since becoming her prim. caregiver I moved in with mom and became financially dependent on her so I have reversed back to childhood in terms of what I can say and do although I'm needed for the caregiving aspect. Mom's neurologist must think that because I'm the caregiver that I'm free to be me and speak the truth. I wish the drs had a little more insight into family caregiving dynamics and could figure out that there is a reason I'm sitting there next to mom like a stone statute staring ahead like an idiot. The drs can be so clueless. Her neurologist even asked me "Is that true?" about something mom said that was at best a half-truth. Oh, of course Ms. Doc it is soooo true.

Good for you to see the need to 'switch' doctors. Shame on him. I hope you get the care and help you need in the days ahead. My thoughts are with you.

I tried typing up my observations before my husband was diagnosed with Alz. When we arrived the doctor did one short memory test, and said he was fine. I asked if he read my letter, he said yes. I asked if it was in the file, he looked and said it must be up front. When they brought it to him, it had never been opened. I looked at it, and at him, and he turned red. Time for a new doctor. We went to a memory clinic for two days of testing. They appreciated may detailed observations and asked questions about it. Sometimes, it takes going to the right doctor.

My MIL is the same way. Forgets what day it is, forgets her meds, complains of aches and pains constantly - NEVER has a good day. The sun NEVER shines - EVER - for her.

Yet, if someone stops by to see her or calls her - she is chipper as a little birdie in Spring! No complaints! All is well in her world. Same with Doctor visits. She complains of this or that until NOT taking her to the doctor would basically be neglect on our part and then when she gets to the doctor - she tells him she is 'doing pretty good for an old lady' as she puts it.

The Doctor jokes with her and she jokes with him. They laugh and have a pretty good time. I have to remind her about why she is there.

Even though we know why they do it (for attention or be prove their independence) - it does not lessen the frustration. We get to hear them harangue about how awful they feel all the time. (I then feel guilty because I get so exasperated. I know she doesn't feel great or even close to good - ever).

But, everyone else gets to see the 'sweet little old lady.' Her other kids think we are making it all up - they can't see anything wrong with mom. We does her hair for them, puts on make up, dresser nicer, walks straighter. If they call or visit (rare occasions) she looks and sounds like a completely different person. She tells them, I'M FINE - YOU DON'T NEED TO WORRY ABOUT ME.

No, THEY don't have to worry about mom - WE do it for them :0(

As for that lovely question "Do you feel safe at home" - that is legally required if an older person or child is taken to the ER. (she had to go last year due to sciatica). I wonder what would happen if an elderly parent happened to be 'mad' at you at the time and decided to say 'YES' just for the heck of it? In this day and age, a person is guilty until proven innocent.

Yes, I know how that feels. My dad was very big on nutrition and eating healthy; yet, he didn't research medications when prescribed. He played Russian rulet! We took him to his doctors' appointments and became knowledgeable about his health conditions, but the final decisions were his. I have 5 sisters and a brother and 2 of my sisters are nurses. I am glad we were able to discuss medical issues with my sisters that were able to explain things to the rest of us. While I feel my dad's meds aided in his demise, we can all feel guilt-free about the outcome. My dad passed away in March of 2011 and we miss him terribly. What we won't do is lay the guilt on ourselves. We honored my dad by allowing him to make his own choices. When he was taken to the hospital the very last time, we knew he had certain serious health issues. What we failed to focus on was that my father had rheumatic fever as a child and his heart condition was much worse than we were aware of. That was a difficult to accept. We focused on following his wishes by doing whatever modern medicine could do to address the immediate and urgent medical condition at the moment, and keeping him comfortable. We made sure he always had someone visiting and tending to his needs, and my brother and sister flew in on a rotating weekly schedule to make sure he had a chance to be with all his 7 children and 18 grandchildren. There comes a time when we must allow our adult parents to make their own decisions about their remaining days, and step back and embrace their choices - whether we agree or not. As long as an adult can make their own decisions, they should be allowed to do so. I can only focus on my "self". I know it would kill me to think that someone I knew or loved wasn't taking my feelings into consideration - or overlooked asking me what I thought or wanted - merely because I was old.

My dad is 85, has diabetes, had heart surgery years ago. He refuses to excercise or follow a proper diet. He does NOT want advice from me or his other 2 kids. He will not sign a POA giving any of us the right to discuss issues with his doctor. We have sent the doctor numerous letters outlining our concerns, and we have had phone conversations with him. Since our dad puts on his best "game face" when he goes to the doctor, that is what the doctor acts on. We have tried using logic with our dad (he went through the same thing with his own mother), we have expressed that our only concern is for his welfare, but nothing changes. It is very sad and frustrating to watch a disaster coming in slow motion, but that is how my siblings and I feel .... powerless, and like we are the "bad guy" for trying to do the right thing.

DT - boy, I can relate to your comments. After months of verbal abuse (and despite the fact that I brought it to my mother's attention), I too had to take a step back. I can relate to the frustrations, but there is only so much a human being can take! I actually told one of my sisters that I had to take a step back and they needed to step up to the plate a bit (which they did). Thank goodness, I do have sibling support. I realized I was taking a step back because I knew if anything happened to my mother, I would have been so devastated, I would have become a recluse. So, the question is: did I step back because of the abuse, or was it that I was so close to my mother, that I needed to separate myself from the situation as a form of self-preservation? It makes you think about the human condition and survival mechanisms. Would I have taken it so personally if it were a client that I was caring for? I really don't know.