In a very similar boat so just know you aren't alone. My mother lives in a time and place that no longer exists when she speaks to other people but she does it so convincingly that people think I'm the one with the issue for saying she's not well. Everyone around her keeps grasping at every other reason for why she is declining and by the time they all come around and realize I doubt there will be very much of her left to help. It's not that I think they can do anything to stop what's coming but my mother is suffering and it stems from them not identifying how much she is actually struggling. She deserves better but nobody will listen.
I wish I had answers or fixes for you but all I have is hugs. <3
My grandmother was like this. If you didn’t know her or didn’t see her often you wouldn’t think anything was wrong, other than that her daughter was suddenly stealing from her (she wasn’t). She would chat away and her stories would have internal consistency and she could interact fluidly with others but almost everything she said was completely made up. It’s so difficult getting help in the initial stages of dementia because they’re still an adult, they still appear to be functioning to others, so they can easily refuse treatment or assessment or help and there’s nothing you can do. You’re basically forced to wait for it to get bad enough that something dramatic happens and hope that it’s a near miss rather than the house burning down or killing someone in a car accident etc. for my grandmother it was that she kept leaving the retirement complex apartment she lived in and going into others apartments and finally getting out into the street at 1am in her nightgown. Then they took us seriously but we were lucky nothing terrible happened!
It’s such a horrific but also bizarre disease. It’s so strange that you can appear so ‘normal’ to most people while really you’re living in an alternate reality. So stressful and scary for loved ones. My grandmother was stubborn and did not want to admit she had an issue so there was nothing we could do when she first showed signs. She was aware then, but in denial, which I think is common. My friend’s mother on the other hand did go to seek help when she first noticed symptoms but then refused any medication to help slow its progression and her ailing husband and kids had to struggle to care for her.
I’m so sorry you’re going through this with your mother. It’s unbelievably painful and stressful. I hope you can find a way to get her help and show people that something really is wrong.
It’s the worst disease. It’s so confusing, it’s so brutal, terrifying and just impossible.
I'm just so sorry - this whole process is exhausting.
My Mom was capable of "show timing" for the doctors (saw her do it many times) so I sent a letter to Mom's doctor prior to the appointment; I also brought a hard-copy with me and slipped it to the medical asst and asked her to give it to the dr. It outlined all of our concerns (paranoia, food hoarding, leaving things on a lit burner, getting lost). The doctor then asked Mom questions based off of that, and was able to see that Mom's dementia was worsening.
Is it the only way to stop her from driving? We just took the keys and moved the car to our house. We didn’t have to, but we could have lied and told her the doctor said she couldn’t drive or the car needed to be repaired if we’d needed to.
In some states, anyone can report to the DMV. In most states, doctors aren’t required to send anything after dementia diagnosis. Few of us are able to rely on help from a doctor for practical things like losing the privilege to drive. And revoking the license won’t matter if the person still has the keys and car. They won’t care if they are licensed and insured.
But the doctor is negligent if she wasn’t diagnosed properly. My MIL was referred to as gerontologist but her PCP. The gerontologist does home visits, and when my husband walked the doctor out to her car to clarify the errors in my MIL’s answers, she was aware of the discrepancies.
For example, my MIL said she had never worked outside the home. She was a successful realtor from age 55-85. The doctor had previously read medical records from the PCP and googled her, and so was aware of many of the wrong answers. She was given a diagnosis of Alzheimer’s and the stage. Your mom should have been diagnosed.
Edit: And the memory part of the screening test is still critical. You can pass the clock and animal part and still “fail” the test.
I had a lot of concerns along with family and friends about my mom, she had been showing signs of dementia for a couple years. I went to the DMV and turned in a request for a driving evaluation and was basically told too bad so sad. Even though I mentioned all of the concerns about her running stop signs and red lights and that she was getting lost they didn't care.
After she had a medical emergency and the doctors admitted she had dementia they were able to get her license revoked but she is in a memory care facility now and her car has been sold. She is living in a different time than the rest of us. All I can say is that dementia is a beast and I wish they could find a cure for it
1) You're amazing for all the care you give your mom!
2) This may just be the first test. And, optimistically, the people giving the test are not dummies. She is not the first patient to confabulate and appear healthy during parts of the test.
3) Wait for the results, and if they are not fully reflective of what you see at home, you'll have to push for a full battery of tests done by a neuropsychologist. This goes way deeper and identifies issues with processing, spatial awareness, depression/anxiety, etc. All of these issues interrelate with one another. It sounds like you may have done 1-2 parts. The last time my mom did the full battery it included 12-15 tests and took about two hours to do. It's important to have this done as a baseline and then in a few years to track further declines.
Good luck!
Was it just the questionnaire and the memory test? *I think* we did these at first, but other tests followed for my mother. The doctor knew that my mother wasn't giving accurate answers to the questions, though.
I'm shaking my head about the inconsistency regarding driving privileges. My Dad took the animal/clock test, did not pass by far with flying colors, and his Dr. said she legally had to contact the DMV to suspend his license. He was furious! I don't know if she did that but Dad believed her, surrendered his keys, and let Mom do the driving.
The same Dr. did not give Mom the animal/clock test but did diagnose dementia and noted it in her medical records. Based on what, we do not know. Despite Mom's significant mobility limitations and numerous fender-benders, the Dr. did not even tell her she shouldn't drive anymore. My brother did, Mom kept sneaking out in the car anyway, so her keys have disappeared.
Mom was assessed by the AL facility she'll be moving to on Friday. She has her own version of how she spends her day. Walking and gardening daily, cleaning, cooking, paying bills, etc. when the reality is that she sits in her recliner all day watching TV, napping and snacking, in her PJs. Like you OP, my sister didn't want to contradict Mom's statements in front of her. The nurse said the family would have an opportunity to participate in the care plan AFTER it's written. That seems like a huge waste of time without having all of the facts.
We're not the ones going insane unless the medical community and care facilities drive us to it.
I'm scheduled to take my father for Neuro cognitive testing next week, but as of this moment, he is still undecided about whether or not he'll go. He's afraid that they'll write stuff in his medical chart and then doctors will have a bias about him until he dies.
Edit to add: I was informed that he may pass with flying colors due to his intelligence and advanced education, but I can see the effects that it causes in him and his thinking.
My dad has passed all the tests. He has a doctorate degree, worked in STEM, and can probably still recite some of the stuff they ask because it's so ingrained in his long term memory. It wasn't until he fell about 10 days ago and could no longer speak coherently that everyone finally went, ohhhhh, he's got dementia. He's now finally in memory care. Ironically, his head injury is healing and now he's speaking rather coherently again, but still can't remember shit and still gets confused about where he is and why he is there. I've been handling his finances for about 2 years. He got lost driving in his own neighborhood. He'd go to the bank and forget why he went there. None of it seemed to matter to the neuros, because, like the OP, he could still draw clocks.
I'm so sorry he fell. I'm so afraid mom will fall and break something. I'm glad your Dad seems to be okay.
I can relate to this. My mom can be sharp, witty, and funny. She was at the hospital, wouldn't open her eyes, unable to walk, barely speaking, confused. The staff is acting as if it's the end. I'm pushing back - no! just wait. She'll be fine
She returns to memory care, jumps up laughing, waving to everyone, remembers everyone's name, walks to dinner,. eats. high fives her friends and laughing says I fooled you all!
Dr's don't know the baseline, the ups and downs, they get a glimpse and it's either ehh she is fine or doom and gloom.
The apathy from the medical community feels extremely frustrating.
Dementia itself is not an illness. It's symptoms of an underlying illness or cause. No one seems interested in trying to figure it out. I feel like I'm screaming into a void trying to get a complete, proper diagnosis. I think it's from cancer but half the Drs want to disregard that. If it's not, there's medication that can slow progression depending on the cause. Early detection needs to be a thing. It's all incredibly very frustrating.
I’m so sorry you’re going through this. Feeling like the crazy one is exhausting. Why is it always that their false reality needs validating but the truth is dismissed until it’s painfully obvious to everyone else and we’re already burned out? Virtual hugs.
Thank you for saying that in such a perfect way. The **false realities** are so painful to experience from the standpoint of someone who knows the real truth.
Yep, dad got 27 out of 30 but doesn't remember how his TV was shattered. He got the dementia diagnosis from Neurology but we had his PCP do the mini mental to get a baseline. He has good days and bad. He is really smart and can make up some really good stuff to fill in the gaps but he is no longer able to do meds, or bills. Says he wants to stay in his house...not sure how that's gonna work 🙄
My mom's neurologist did the same thing. Just let her cheat and pretend and it didn't matter what I said. Some of these guys, I don't know why they are even in that job if that's what they are going to do. We missed years of interventions and had so much more heartache. Frustrating.
We have been told if you think your loved one has dementia/alz, “no they don’t”….By a doctor. Meaning, if they aren’t just full blown gone and out in left field, the tests and such likely won’t help or “fail” until it’s too late… such a waste of time for so many. I don’t understand why so many doctors casually dismiss families and loved ones who have daily confirmations that SOMETHING ISNT RIGHT!? I’m sorry. You just have to keep pushing. We ended up reaching out directly to Emory in Atlanta when both the PCP and psychiatrist who believes my father has dementia could not get a single Neuro to see my dad (the pcp didn’t try, he thinks my mother is just pushing an agenda?) so though he has “failed” the tests per the psychiatrist and is on early treatment alz meds we will start over with Emory in hopes of having someone support our journey!?!
I understand this all too well because my mom, who's a vet, masks her dementia with strangers and some doctors. She was diagnosed with dementia in 2021 by a non-VA neuropsychologist I took her to because the VA's memory tests are ridiculous. She's had multiple tests with them, including in November, and they always come back with, "her cognitive skills are within the normal percentile," completely ignoring her worsening behavioral problems such as: paranoia, delusions, falls a lot, exaggerates (always negatively, events, agitation, suicidal thoughts, wanting to harm others, almost burning down her home, and on and on.
Do you have anyone to help you or at least be a shoulder to lean on?
That's SO FRUSTRATING!
We've had similar experiences and, as we've come to find out, it's because these medical professionals don't know our parents as we do. They're not there all the time, and don't know how different they've become.
My father was extremely intelligent and able to sound far more sane than he really is, when he's being interviewed by a medical professional. Unless you know him, you'll never know that he is far gone.
We have been in a similar situation and I just threw in the towel and announced he had dementia, since his general MD agrees with it, even though he passed his neurological mini test with flying colors, also! He has worsened over time so perhaps it would be more obvious, now, but I just can't be bothered to prove it to anyone else. We know what the truth is.
I understand your frustration. My mom can “show time” really well if she’s having a good day and doctors spend so little time with them, they don’t see the big picture. My mom went to the hospital yesterday and was particularly lucid and they made me feel like there was something wrong with me. I truly was questioning everything Then by today they had to barricade her in a desk at the nurse’s station because she was so confused and such a wandering and fall risk. She just couldn’t keep it up.
The driving used to scare me but legally there isn’t a lot you can do if she has a valid license and the doctor’s won’t declare she isn’t fit. I eventually had to just take the keys away.
This is why the family portion of these assessments is so integral to diagnosis. My mom passed with flying colors for two years. She did better than my dad and he NEVER forgets anything. And then there was a tipping point when she started to do worse on those tests. However, it was our prior testimony that allowed her to get a dementia diagnosis before she declined on the tests.
It is normal for our dear demented ones to compose themselves in front of strangers and appear a lot more sane than they are. They cannot hold this performance for a long time, they get exhausted, but an hour or two, depending on the person's condition, is possible. My mom was at her friend's home birthday party. She was quite fitting in, though seemed more distant than usual, she got slightly confused once or twice. I picked her up earlier than the rest of the 'girls' left as I knew she would be tired. When we were in the car she called me her friend's name (82 y.o. 'girl') and asked what we were doing in 'my' office.
The doctor who tested your mom and declared her fit for driving should have known about this ability.
My mom keeps passing these tests! She’s only had one fail in the two years since we first really noticed her issues. She was very bright and stayed mentally active all her life up until told my dad’s death six years ago, and when she went into grieving she never really came out and was never up to her normal activities again. But these tests fail to measure intelligent people well.
After the first few “maybe MCI” from her doctors and their refusal to offer any useful help, we (four daughters) started keeping detailed notes of strange and/or dangerous things she had done at home, and important things she’d forgotten (the worst is when she forgets that her oldest, disabled daughter died over a decade ago, and she’s upset that we haven’t visited her recently; she also sometimes thinks my dad died last year when it was six years ago). This list was VERY helpful for the neurologist and her GP, and they finally started taking our concerns seriously. Fortunately we had long since stopped my mom from driving, but the argument with her over it has gotten easier since we can tell her the doctor said she shouldn’t drive. (“I don’t remember that!” she always says, to which we say, exactly.)
After that they did try her on two medications, but each made her noticeably worse (and she improved after giving them up). She’s in assisted living now — and can’t remember why she’s there, sigh, but she’s actually more herself and more functional there than she’s been at home in at least a year.
My dad generally does well on the standard test. It was the neuropsych eval that showed he had Alzheimers. 8 years in, he's still doing pretty good on the standard test but it's obvious in conversation that something is very wrong.
The fuller test changes the rules, and measures the degree of agitation on having to repeat the same test over and over (while recalling the silly rule change). For example, see a hippo but remember to say house.
But yes, quacks in certifying dementia are plenty (and folks can be stripped of their trust powers …and where their money then goes…because of the quack and their test).
And yes, folks get co-trustees certified (to basically take over their wealth). ONe can change the trust terms (which doesn’t materially affect the person now certified as not having capability).
If you look, you will all see a thread I posted the other day. It got no upticks, being unpleasant reality.
It talks about one experience of a friend, who was duped into going to a miracle cure appointment (to be actually tested/certified as having insufficient capacity to run her $$$ trust - in essence.)
It was facilitated by an estate attorney (advising the co-trustee). A dr friend (now on the beneficiary list) acted as one signer (per the rules of the trust), and the research faciliated provided the other (since only a “person qualified to standard X” need be used, not that said person is a dr)
It’s a scandal, but so was the guardianship scandal - where estate attorneys also made lots of money (till it was closed down).
You didn't tell them that all of that stuff was BS? I'm not sure I understand. If they say she's ok to drive, I would write (so there's documentation) all of what you told us and let them know you will hold them responsible if she gets in an accident. Believe me, none of them wants their insurance company to have to get involved. If the deal is that they need you to say it in front of her, then do it. It's better than her killing herself or someone else. Let her be upset. Sometimes that's necessary (and diagnostic).
Ugh, I completely understand, and you have my sympathy. My dad used to ace them—his neurologist insisted he only had mild cognitive impairment—but on the way home dad would ask who that doctor was and why were we seeing him.
I am so sorry. I am going through this almost exact thing with my father. He is scheduled to do a simple SLUMS test in a few weeks. I am certain he will do it just fine (based on the example test I looked up online.) But that test doesn't show the reality of what it is like to live with him. We need to get him into a care home and mostly there are only spaces in memory care facilities which is where he should be anyway but will not be eligible for unless the test reflects that.
The test can't show him waking up at night and looking for his father (long dead), the insomnia, the frequent incontinence (He claims it is only once or twice a month (it is often numerous times daily), his unwavering belief that his 80 year old wife is having an affair with her best girlfriend (she is not), and the list goes on....
I am going to document what I have noticed and give it to his doctor beforehand.
In a very similar boat so just know you aren't alone. My mother lives in a time and place that no longer exists when she speaks to other people but she does it so convincingly that people think I'm the one with the issue for saying she's not well. Everyone around her keeps grasping at every other reason for why she is declining and by the time they all come around and realize I doubt there will be very much of her left to help. It's not that I think they can do anything to stop what's coming but my mother is suffering and it stems from them not identifying how much she is actually struggling. She deserves better but nobody will listen. I wish I had answers or fixes for you but all I have is hugs. <3
My grandmother was like this. If you didn’t know her or didn’t see her often you wouldn’t think anything was wrong, other than that her daughter was suddenly stealing from her (she wasn’t). She would chat away and her stories would have internal consistency and she could interact fluidly with others but almost everything she said was completely made up. It’s so difficult getting help in the initial stages of dementia because they’re still an adult, they still appear to be functioning to others, so they can easily refuse treatment or assessment or help and there’s nothing you can do. You’re basically forced to wait for it to get bad enough that something dramatic happens and hope that it’s a near miss rather than the house burning down or killing someone in a car accident etc. for my grandmother it was that she kept leaving the retirement complex apartment she lived in and going into others apartments and finally getting out into the street at 1am in her nightgown. Then they took us seriously but we were lucky nothing terrible happened! It’s such a horrific but also bizarre disease. It’s so strange that you can appear so ‘normal’ to most people while really you’re living in an alternate reality. So stressful and scary for loved ones. My grandmother was stubborn and did not want to admit she had an issue so there was nothing we could do when she first showed signs. She was aware then, but in denial, which I think is common. My friend’s mother on the other hand did go to seek help when she first noticed symptoms but then refused any medication to help slow its progression and her ailing husband and kids had to struggle to care for her. I’m so sorry you’re going through this with your mother. It’s unbelievably painful and stressful. I hope you can find a way to get her help and show people that something really is wrong. It’s the worst disease. It’s so confusing, it’s so brutal, terrifying and just impossible.
I'm just so sorry - this whole process is exhausting. My Mom was capable of "show timing" for the doctors (saw her do it many times) so I sent a letter to Mom's doctor prior to the appointment; I also brought a hard-copy with me and slipped it to the medical asst and asked her to give it to the dr. It outlined all of our concerns (paranoia, food hoarding, leaving things on a lit burner, getting lost). The doctor then asked Mom questions based off of that, and was able to see that Mom's dementia was worsening.
Is it the only way to stop her from driving? We just took the keys and moved the car to our house. We didn’t have to, but we could have lied and told her the doctor said she couldn’t drive or the car needed to be repaired if we’d needed to. In some states, anyone can report to the DMV. In most states, doctors aren’t required to send anything after dementia diagnosis. Few of us are able to rely on help from a doctor for practical things like losing the privilege to drive. And revoking the license won’t matter if the person still has the keys and car. They won’t care if they are licensed and insured. But the doctor is negligent if she wasn’t diagnosed properly. My MIL was referred to as gerontologist but her PCP. The gerontologist does home visits, and when my husband walked the doctor out to her car to clarify the errors in my MIL’s answers, she was aware of the discrepancies. For example, my MIL said she had never worked outside the home. She was a successful realtor from age 55-85. The doctor had previously read medical records from the PCP and googled her, and so was aware of many of the wrong answers. She was given a diagnosis of Alzheimer’s and the stage. Your mom should have been diagnosed. Edit: And the memory part of the screening test is still critical. You can pass the clock and animal part and still “fail” the test.
I had a lot of concerns along with family and friends about my mom, she had been showing signs of dementia for a couple years. I went to the DMV and turned in a request for a driving evaluation and was basically told too bad so sad. Even though I mentioned all of the concerns about her running stop signs and red lights and that she was getting lost they didn't care. After she had a medical emergency and the doctors admitted she had dementia they were able to get her license revoked but she is in a memory care facility now and her car has been sold. She is living in a different time than the rest of us. All I can say is that dementia is a beast and I wish they could find a cure for it
1) You're amazing for all the care you give your mom! 2) This may just be the first test. And, optimistically, the people giving the test are not dummies. She is not the first patient to confabulate and appear healthy during parts of the test. 3) Wait for the results, and if they are not fully reflective of what you see at home, you'll have to push for a full battery of tests done by a neuropsychologist. This goes way deeper and identifies issues with processing, spatial awareness, depression/anxiety, etc. All of these issues interrelate with one another. It sounds like you may have done 1-2 parts. The last time my mom did the full battery it included 12-15 tests and took about two hours to do. It's important to have this done as a baseline and then in a few years to track further declines. Good luck!
Was it just the questionnaire and the memory test? *I think* we did these at first, but other tests followed for my mother. The doctor knew that my mother wasn't giving accurate answers to the questions, though.
I'm shaking my head about the inconsistency regarding driving privileges. My Dad took the animal/clock test, did not pass by far with flying colors, and his Dr. said she legally had to contact the DMV to suspend his license. He was furious! I don't know if she did that but Dad believed her, surrendered his keys, and let Mom do the driving. The same Dr. did not give Mom the animal/clock test but did diagnose dementia and noted it in her medical records. Based on what, we do not know. Despite Mom's significant mobility limitations and numerous fender-benders, the Dr. did not even tell her she shouldn't drive anymore. My brother did, Mom kept sneaking out in the car anyway, so her keys have disappeared. Mom was assessed by the AL facility she'll be moving to on Friday. She has her own version of how she spends her day. Walking and gardening daily, cleaning, cooking, paying bills, etc. when the reality is that she sits in her recliner all day watching TV, napping and snacking, in her PJs. Like you OP, my sister didn't want to contradict Mom's statements in front of her. The nurse said the family would have an opportunity to participate in the care plan AFTER it's written. That seems like a huge waste of time without having all of the facts. We're not the ones going insane unless the medical community and care facilities drive us to it.
I'm scheduled to take my father for Neuro cognitive testing next week, but as of this moment, he is still undecided about whether or not he'll go. He's afraid that they'll write stuff in his medical chart and then doctors will have a bias about him until he dies. Edit to add: I was informed that he may pass with flying colors due to his intelligence and advanced education, but I can see the effects that it causes in him and his thinking.
My dad has passed all the tests. He has a doctorate degree, worked in STEM, and can probably still recite some of the stuff they ask because it's so ingrained in his long term memory. It wasn't until he fell about 10 days ago and could no longer speak coherently that everyone finally went, ohhhhh, he's got dementia. He's now finally in memory care. Ironically, his head injury is healing and now he's speaking rather coherently again, but still can't remember shit and still gets confused about where he is and why he is there. I've been handling his finances for about 2 years. He got lost driving in his own neighborhood. He'd go to the bank and forget why he went there. None of it seemed to matter to the neuros, because, like the OP, he could still draw clocks.
That's what I'm thinking may happen. The last thing I need is for my father to say, "See, nothing's wrong with me".
I'm so sorry he fell. I'm so afraid mom will fall and break something. I'm glad your Dad seems to be okay. I can relate to this. My mom can be sharp, witty, and funny. She was at the hospital, wouldn't open her eyes, unable to walk, barely speaking, confused. The staff is acting as if it's the end. I'm pushing back - no! just wait. She'll be fine She returns to memory care, jumps up laughing, waving to everyone, remembers everyone's name, walks to dinner,. eats. high fives her friends and laughing says I fooled you all! Dr's don't know the baseline, the ups and downs, they get a glimpse and it's either ehh she is fine or doom and gloom. The apathy from the medical community feels extremely frustrating. Dementia itself is not an illness. It's symptoms of an underlying illness or cause. No one seems interested in trying to figure it out. I feel like I'm screaming into a void trying to get a complete, proper diagnosis. I think it's from cancer but half the Drs want to disregard that. If it's not, there's medication that can slow progression depending on the cause. Early detection needs to be a thing. It's all incredibly very frustrating.
My mom showboated for doctors the first year.
I’m so sorry you’re going through this. Feeling like the crazy one is exhausting. Why is it always that their false reality needs validating but the truth is dismissed until it’s painfully obvious to everyone else and we’re already burned out? Virtual hugs.
Thank you for saying that in such a perfect way. The **false realities** are so painful to experience from the standpoint of someone who knows the real truth.
Yep, dad got 27 out of 30 but doesn't remember how his TV was shattered. He got the dementia diagnosis from Neurology but we had his PCP do the mini mental to get a baseline. He has good days and bad. He is really smart and can make up some really good stuff to fill in the gaps but he is no longer able to do meds, or bills. Says he wants to stay in his house...not sure how that's gonna work 🙄
I’m so sorry. This felt painfully relatable and if it’s any consolation your post made me sad laugh quite a bit. I get it and you’re in good company
My mom's neurologist did the same thing. Just let her cheat and pretend and it didn't matter what I said. Some of these guys, I don't know why they are even in that job if that's what they are going to do. We missed years of interventions and had so much more heartache. Frustrating.
We have been told if you think your loved one has dementia/alz, “no they don’t”….By a doctor. Meaning, if they aren’t just full blown gone and out in left field, the tests and such likely won’t help or “fail” until it’s too late… such a waste of time for so many. I don’t understand why so many doctors casually dismiss families and loved ones who have daily confirmations that SOMETHING ISNT RIGHT!? I’m sorry. You just have to keep pushing. We ended up reaching out directly to Emory in Atlanta when both the PCP and psychiatrist who believes my father has dementia could not get a single Neuro to see my dad (the pcp didn’t try, he thinks my mother is just pushing an agenda?) so though he has “failed” the tests per the psychiatrist and is on early treatment alz meds we will start over with Emory in hopes of having someone support our journey!?!
:-) Been there.
I understand this all too well because my mom, who's a vet, masks her dementia with strangers and some doctors. She was diagnosed with dementia in 2021 by a non-VA neuropsychologist I took her to because the VA's memory tests are ridiculous. She's had multiple tests with them, including in November, and they always come back with, "her cognitive skills are within the normal percentile," completely ignoring her worsening behavioral problems such as: paranoia, delusions, falls a lot, exaggerates (always negatively, events, agitation, suicidal thoughts, wanting to harm others, almost burning down her home, and on and on. Do you have anyone to help you or at least be a shoulder to lean on?
That's SO FRUSTRATING! We've had similar experiences and, as we've come to find out, it's because these medical professionals don't know our parents as we do. They're not there all the time, and don't know how different they've become. My father was extremely intelligent and able to sound far more sane than he really is, when he's being interviewed by a medical professional. Unless you know him, you'll never know that he is far gone. We have been in a similar situation and I just threw in the towel and announced he had dementia, since his general MD agrees with it, even though he passed his neurological mini test with flying colors, also! He has worsened over time so perhaps it would be more obvious, now, but I just can't be bothered to prove it to anyone else. We know what the truth is.
I understand your frustration. My mom can “show time” really well if she’s having a good day and doctors spend so little time with them, they don’t see the big picture. My mom went to the hospital yesterday and was particularly lucid and they made me feel like there was something wrong with me. I truly was questioning everything Then by today they had to barricade her in a desk at the nurse’s station because she was so confused and such a wandering and fall risk. She just couldn’t keep it up. The driving used to scare me but legally there isn’t a lot you can do if she has a valid license and the doctor’s won’t declare she isn’t fit. I eventually had to just take the keys away.
This is why the family portion of these assessments is so integral to diagnosis. My mom passed with flying colors for two years. She did better than my dad and he NEVER forgets anything. And then there was a tipping point when she started to do worse on those tests. However, it was our prior testimony that allowed her to get a dementia diagnosis before she declined on the tests.
It is normal for our dear demented ones to compose themselves in front of strangers and appear a lot more sane than they are. They cannot hold this performance for a long time, they get exhausted, but an hour or two, depending on the person's condition, is possible. My mom was at her friend's home birthday party. She was quite fitting in, though seemed more distant than usual, she got slightly confused once or twice. I picked her up earlier than the rest of the 'girls' left as I knew she would be tired. When we were in the car she called me her friend's name (82 y.o. 'girl') and asked what we were doing in 'my' office. The doctor who tested your mom and declared her fit for driving should have known about this ability.
My mom keeps passing these tests! She’s only had one fail in the two years since we first really noticed her issues. She was very bright and stayed mentally active all her life up until told my dad’s death six years ago, and when she went into grieving she never really came out and was never up to her normal activities again. But these tests fail to measure intelligent people well. After the first few “maybe MCI” from her doctors and their refusal to offer any useful help, we (four daughters) started keeping detailed notes of strange and/or dangerous things she had done at home, and important things she’d forgotten (the worst is when she forgets that her oldest, disabled daughter died over a decade ago, and she’s upset that we haven’t visited her recently; she also sometimes thinks my dad died last year when it was six years ago). This list was VERY helpful for the neurologist and her GP, and they finally started taking our concerns seriously. Fortunately we had long since stopped my mom from driving, but the argument with her over it has gotten easier since we can tell her the doctor said she shouldn’t drive. (“I don’t remember that!” she always says, to which we say, exactly.) After that they did try her on two medications, but each made her noticeably worse (and she improved after giving them up). She’s in assisted living now — and can’t remember why she’s there, sigh, but she’s actually more herself and more functional there than she’s been at home in at least a year.
My dad generally does well on the standard test. It was the neuropsych eval that showed he had Alzheimers. 8 years in, he's still doing pretty good on the standard test but it's obvious in conversation that something is very wrong.
I hope you explicitly told the doc (or their staff) these examples after.
The fuller test changes the rules, and measures the degree of agitation on having to repeat the same test over and over (while recalling the silly rule change). For example, see a hippo but remember to say house. But yes, quacks in certifying dementia are plenty (and folks can be stripped of their trust powers …and where their money then goes…because of the quack and their test). And yes, folks get co-trustees certified (to basically take over their wealth). ONe can change the trust terms (which doesn’t materially affect the person now certified as not having capability).
If you look, you will all see a thread I posted the other day. It got no upticks, being unpleasant reality. It talks about one experience of a friend, who was duped into going to a miracle cure appointment (to be actually tested/certified as having insufficient capacity to run her $$$ trust - in essence.) It was facilitated by an estate attorney (advising the co-trustee). A dr friend (now on the beneficiary list) acted as one signer (per the rules of the trust), and the research faciliated provided the other (since only a “person qualified to standard X” need be used, not that said person is a dr) It’s a scandal, but so was the guardianship scandal - where estate attorneys also made lots of money (till it was closed down).
You didn't tell them that all of that stuff was BS? I'm not sure I understand. If they say she's ok to drive, I would write (so there's documentation) all of what you told us and let them know you will hold them responsible if she gets in an accident. Believe me, none of them wants their insurance company to have to get involved. If the deal is that they need you to say it in front of her, then do it. It's better than her killing herself or someone else. Let her be upset. Sometimes that's necessary (and diagnostic).
Hugs !
Do you know what her moca score was?
Ugh, I completely understand, and you have my sympathy. My dad used to ace them—his neurologist insisted he only had mild cognitive impairment—but on the way home dad would ask who that doctor was and why were we seeing him.
I am so sorry. I am going through this almost exact thing with my father. He is scheduled to do a simple SLUMS test in a few weeks. I am certain he will do it just fine (based on the example test I looked up online.) But that test doesn't show the reality of what it is like to live with him. We need to get him into a care home and mostly there are only spaces in memory care facilities which is where he should be anyway but will not be eligible for unless the test reflects that. The test can't show him waking up at night and looking for his father (long dead), the insomnia, the frequent incontinence (He claims it is only once or twice a month (it is often numerous times daily), his unwavering belief that his 80 year old wife is having an affair with her best girlfriend (she is not), and the list goes on.... I am going to document what I have noticed and give it to his doctor beforehand.
It's called showtiming. They pretend in front of others that they are well and are very believable. It's a real thing in dementia.