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Denial of Alzheimer's
K.T.
Posted: Monday, January 16, 2012 9:38 AM
Joined: 1/16/2012
Posts: 126


Hi All:

I am new to the board.  My father-in-law was diagnosed last week with dementia. He scored a 22 on his MMSE examination. 

Tomorrow he is going for a MRI and then to a psychiatrist for further testing.
Dad has been exhibiting symptoms of memory loss on and off for the past 2 years.  He had an MMSE examination 2 years ago and was found to have MCI.  Last Sunday he could not follow my husband and his phone conversation at all.  My sister-in-law was present and said Dad left the room and forgot she was there visiting, hence taking him to the physician that week.  
Right now Dad is calling us "kids" crazy and Mom states " Oh Dad is fine", both are in complete denial of the diagnosis/situation.  So, my question, how do you handle their denial?
Thanks.  

jfkoc
Posted: Monday, January 16, 2012 10:40 AM
Joined: 12/4/2011
Posts: 17525


I would suggest you accept their denial and carefully watch what is going on. One thing....have your father's hearing checked!
Heidi Liane'
Posted: Monday, January 16, 2012 10:58 AM
Joined: 12/20/2011
Posts: 66


who has POA?

who goes to the Dr vistis with yuor dad  whenhehas these tgests done you oirhis wife?

have the Dr explain tohis wife whatis going on what she needs to do whatis to come.

 

the sooner they belive itis goingon the sooner they can gethelp get support too.

Best of ;luck to yuo allI am prior medicaland am very involved with my LO support too.Allthe way evenhave firnedsin the medical proffession who also giveme ideas toread upon toond to try with his dr's approval too. but yes  she needs to accept the fdacthe is  havingmemory troublenad needs  helkp too. sad but true.I said whjen my LO had MCI mild tomoderat ok  with Jesus help we wil take the bulltheby the horns fight this demon learn abuot this deamonand move  fwd., Sofar  my Lois doinggreatnad i am proaudof him .

 

Yeshe has bad daysand good days toobut thatis to come too.Maybe havea home health aide check uotthere house tooor you can too okmakea clear pathway fro huim to walk yurmom tooget rid of throw rugsnad make sure everything is ok toolieka wellness check.


JAB
Posted: Monday, January 16, 2012 11:14 AM
Joined: 11/30/2011
Posts: 740


Hi, KT, welcome to the forum.

 

I'm curious as to what sorts of testing have been done so far.  The only thing you've mentioned is the MMSE, which is a very simple screening test that may sometimes be helpful in determining whether there is a problem that requires further investigation.  However ... it is only useful under very select circumstances.  And a score of 22 can be perfectly normal, depending on the person's background (level of education, whether English is his native language, etc.)  And it cannot be used to diagnose anything.

 

I am extremely uncomfortable with any doctor who does an MMSE and makes a diagnosis on the basis of that, without all the myriad other tests that are needed ... and which your FIL clearly hasn't had yet.  There are all sorts of things that can cause dementia symptoms, many of which are readily treatable.  So ... I wonder just how qualified this doctor is.

 

I'd agree with jfkoc, it's way too early to be jumping to the conclusion that your parents are "in denial".  I'd calm down and see what develops.  Well, actually, if my understanding of the situation is correct, I might tactfully suggest that your parents see a doctor with extensive experience in diagnosing and managing dementias.

 

The best place to look is often a so-called memory disorder center. There's a partial list at:
http://www.alzcompend.info/?p=14

If your state isn't listed, we'd be happy to help you look for something nearby.

 

Just FYI, there's a brief summary of the typical tests for diagnosing AD:
http://www.alzcompend.info/?p=127

 


skericheri
Posted: Monday, January 16, 2012 11:19 AM
Joined: 12/10/2011
Posts: 287


K.T.---Welcome to the message boards.  Your father-in-law's problem of denying that he has any problem is so common that there is a fancy word for it.   That word is anosognosia.

 

Below is a link to a site that contains information about why our loved ones do the things they do and includes anosognosia.

 

 

http://www.alzheimercambridge.on.ca/Understanding%20the%20Dementia%20Experience.pdf 

 

 

Charlie, my partner, suffered from anosognosia.  He was certain that the only thing wrong with him was the result of normal aging.  No amount of arguing would convince him otherwise...so..instead of having A/D...Charlie had a 'little memory problem.  I got him to go to  neurologist appointments by telling him that the neurologist would help him with this.

 

The 'little memory problem' phrase might work with your mother-in-law until the situation degenerates to the point where denial is impossible.


K.T.
Posted: Monday, January 16, 2012 11:30 AM
Joined: 1/16/2012
Posts: 126


The folks are going to their GP for diagnosis.  They are doing an MRI and further testing this week due to the MMSE examination.  Dad  originally took the MMSE 2 years ago and scored a 28 at that time, is now at 22.  He is a retired contractor/builder, college educated.  He lost 6 points in 2 years.  I believe he may be further along in his dementia that what the MMSE found.  

He has been hitting other cars trying to park, not paying attention with driving, cannot do the bills anymore keeps making mistakes,not able to use his camera anymore, struggles with the computer where he use to be an avid e-mailer, etc.......He definitely has some type of dementia, we just don't know if it is Alzheimer's, vascular etc.  

 

We are definitely seeing memory issues, us kids. Mom is in denial of them, she keeps calling it "old age".  Dad cannot remember conversations we had within days of said conversations.  Prime example, he is going for physical therapy exercises and cannot remember to do his exercises twice a day, or how to do them, even though he has been through 3 weeks of physical therapy.  So, to me, that sounds like a huge memory issue.  

Us kids are worried about driving for one, what if he has another "memory lapse" while driving???  
So, to me, this is a huge case of denial on Mom's part.  Dad, well, he just cannot remember well enough to know what the heck is going on. 

skericheri
Posted: Monday, January 16, 2012 11:44 AM
Joined: 12/10/2011
Posts: 287


K.T.---In my opinion a GP (even a relatively knowledgeable one) does not necessarily have the expertise to make an A/D diagnosis.  There are so many different kinds of dementia that can be caused by various things...a diagnosis by a Neurologis is a must. 

 

 Please do not argue with your Mother-In-Law about your FIL's condition.  Concentrate on winning your FIL over and getting a HIPAA wavier that will allow his doctor's to freely exchange information with you.


K.T.
Posted: Monday, January 16, 2012 11:54 AM
Joined: 1/16/2012
Posts: 126


Dad will be tested by a psychiatrist this week, more memory tests will be given. Why the GP is going with this type of physician I personally do not understand.  I would prefer a neurologist myself.  

We were happy Dad at least got into the GP for some testing, we originally got him in their for arthritic neck pain!  

No one has the POA at this point, no one has signed any release of medical information either.  My sister-in-law went with for the office visit, she is also a patient of the physician and gave the physician her take of what has been going on privately before the visit.

We aren't arguing at all with them, just seeing how they are reacting and us "kids" are talking between ourselves.  

 

Dad is extremely stubborn, so we were very lucky he let my sister-in-law drive him to the doctor.  


Forgot to mention he fell 4 weeks ago on ice and landed smack on his right shoulder, which he had MRI's for and it showed a mild rotator cuff tear.  He can hardly move his arm, hence why my sister-in-law had to drive! 


EFT
Posted: Monday, January 16, 2012 12:08 PM
Joined: 12/16/2011
Posts: 393


KT, if at all possible, one of the kids should go to the appointments for further testing and definitely get the HIPAA form signed. Doctors cannot share info with you or anybody else without the waiver - I fill out all paperwork for my mom at doctors ("here, let me help you with all these forms") to ensure they would share info with me. I even signed her name and the doctors' office never knew the difference - they just want the completed form to comply with the rules. 

If it is impossible to get the waiver, you can still talk to the doctors; they just can't tell you anything specific about your LO. I always type a note to my mom's doctors and hand it to the nurse. The top of the page has big bold letters indicating that the doctor should read BEFORE the examination. I express all concerns, observations, etc. That way, the doctor has info but doesn't have to have a conversation with me in front of my mom. It can certainly help steer the examination to address specific issues. My mom has AD, but I opted to not tell her the diagnosis. She knows she has "some memory problems", and it is very frustrating for her.

There are some causes of dementia-like symptoms that are treatable, and should be ruled out.

I completely understand your frustration. It's all scary. Is there any possible way to discourage the driving?

Good luck and come back to let us know how it's going.


JAB
Posted: Monday, January 16, 2012 12:12 PM
Joined: 11/30/2011
Posts: 740


K T, please try to calm down.  You really are jumping the gun.

 

MMSE scores can vary all over the scoreboard, affected by all sorts of things.  It truly is not a very helpful test at all.

 

From what you've said, the GP is doing precisely what the GP should be doing.  There are all sorts of tests that need to be done, such as blood tests, an EKG, maybe an EEG, and so on and so forth, to rule out the many dozens of things that could be causing your FIL's symptoms, and a GP is the one who does those.

 

If none of those produce an obvious reason for the symptoms, then brain imaging is usually done, either an MRI or a CT scan.

 

And depending on what is found there, a psychiatrist or psychologist typically runs a battery of neuropsych tests.

 

THEN it is common for the loved one to be referred to a neurologist, who pulls all of the information together, decides whether any additional testing is needed, and, finally, comes up with a diagnosis.

 

Most of the symptoms you're describing could be due to vision problems.

 

Take a deep breath.  Back off, let things take their course.  Unless and until a qualified neuro concludes that your FIL has a neurodegenerative dementia, you have no idea whether he does or not.  But it takes time to get to the point of needing a neuro to be involved.

 

 


jfkoc
Posted: Monday, January 16, 2012 1:31 PM
Joined: 12/4/2011
Posts: 17525


Your mom may call it old age forever. That is pretty much what we used to call it. That or senility.

 

A diagnosis of what is causing "the old age memory" can help. Many physical issues such as B12, Thyroid, Parkinson's and depression can cause and/or increase "dementia" problems. See about a through blood workup.

 

The bottom line is that what ever name one wants to call it you are going to have to learn the best way of giving aid.

 

Wrong, the real bottom line is your father must stop driving. Any accident caused by someone with a diagnosis of decreased mental ability is a really serious liability and if/when he causes bodily harm  could you live with it.  . 


K.T.
Posted: Monday, January 16, 2012 2:19 PM
Joined: 1/16/2012
Posts: 126


Agree with the driving......but we cannot take the keys away until we have an official diagnosis.....so we are chomping at the bit, so to speak, to get the tests run.  My husband can't walk in their home and go, okay, give me your car keys without diagnosis from the physician.  

Realize the MMSE is a basic test, but it needed to be done so we could get other testing completed. 

Don't know what type of tests the psychiatrist will do, anyone know what the standard tests may be?  

As of yesterday both the folks thought Dad just had to go for an MRI and nothing further........they "forgot" about the psychiatrist and testing.  

Right now we are sugar coating everything.  


JAB
Posted: Monday, January 16, 2012 3:59 PM
Joined: 11/30/2011
Posts: 740


Ummm... I'd suggest you think twice about marching into their home and making any sort of demands, with or without a diagnosis.  Your gung-ho attitude is really making me nervous.

 

You and your husband don't have any legal rights to dictate what will or won't be done, you know.  And unless you offer help with tact and diplomacy and compassion, you're very likely to create a rift that will not be easily healed.

 

Stress can cause dementia symptoms, all by itself.  You may be making things worse by pressuring both of them to "accept" a diagnosis that hasn't even been made.

 

That said, if his driving truly is an issue, because you no longer think he's driving safely no matter what the problem might be, then what does a dementia diagnosis have to do with anything?  Are you saying that if the doc says oh, hey, his problems are just due to low vitamin B12, you'll think it's OK for him to continue driving?

 

Express your concerns about his accidents, suggest that he have a thorough eye exam, offer to drive him to appointments and such until you figure out why he's having problems driving.

 

My husband stopped driving a year and a half before he was diagnosed.  Voluntarily.  Because I approached him about my concerns carefully, and lovingly, and with ideas on how he could get where he wanted to go without driving there himself.


crella
Posted: Monday, January 16, 2012 8:08 PM
Joined: 12/21/2011
Posts: 47


Welcome to the board.  I agree with JAB that stress alone can bring out dementia symptoms. Being hard of hearing or having bad eyesight can cause dementia-like symptoms, vitamin deficiencies can too. It may not be dementia!

 

 

My MIL was diagnosed with 'mixed dementia', AD and vascular dementia, about 6 years ago. She was in Stage 4 or 5 when she had her last MMSE and scored a 22, after scoring a 15 the last time! A 23 for someone who can't tell one season from another, had short term memory of about a minute at that time...the MMSE isn't the definitive yardstick of dementia we thought it was. Additional testing will tell you much more.

 

 


K.T.
Posted: Monday, January 16, 2012 8:22 PM
Joined: 1/16/2012
Posts: 126


Dad has had lens implants and cataracts removed, now does not even need glasses.  Blood panel done 3 months ago, thyroid, etc...all fine.  Blood pressure fine.  He is very healthy, except arthritis.  Not even high blood pressure. 

MRI is tomorrow...they will compared to last MRI 2 years ago when he was diagnosed with MCI.  We will see what happens.  

All very difficult because MIL is bipolar with other issues and cannot care for him properly is the big issue..plus we are 1000 miles away.....hubby is the only person they will listen to.  I am venting...my Mom was diagnosed with leukemia a few weeks back and they are 1000 miles in a different direction.  I just needs things resolved..or wish they could be quickly, feel like I am on a roller coaster.