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no diagnose... feel alone
40years
Posted: Friday, July 29, 2016 7:28 PM
Joined: 7/29/2016
Posts: 7


My husband has always worked 40-70 hours per week.  Self employed. Now he doesnt go to work at all! He doesnt even call work. I also started to notice some memory loss. Co workers had noticed his memory was declining since mid 2015. So, he agreed to see a Neurologist.. who sent him to a Neuropsychologist.  Testing was normal. He has continued to get worse.  His sleep pattern is very broken, no work, has problems with organizing, can get irritable.  We have been married 40 years, and has threaten to leave me three times within 2 months. He only remembers threatening to leave me from yesterday. He does not have normal conversations with me, I have to start them. We do not go out as a couple anymore. He doesnt play the grandchildren either. I am so sad. I lost a Father in law and my own Mother to Alzheimers.  I am concerned he does have a type of dementia. He is only 59. I get lonely. Any thoughts?
Iris L.
Posted: Friday, July 29, 2016 7:48 PM
Joined: 12/15/2011
Posts: 17580


Was the neuropsychologist skilled in working with patients with dementia?  Some neuropsychologist specialize in pediatric disorders such as ADD and autism.  Was the neurocognitive testing comprehensive, lasting about six hours?  Do you have the written report?  There should be conclusions regarding multiple areas of brain function, personality and mood.


Major depression can mimic dementia.  Has he been evaluated by a competent geriatric psychiatrist?


Sleep apnea can cause cognitive and memory changes.  Has he had an overnight sleep study in a hospital sleep lab by a sleep specialist MD?


Is he on medications?  Many medications cause memory and cognitive side effects, alone or in combination with other drugs.  Check out the Beers criteria for seniors, even though he is not technically a senior yet.


Is there any history of old head trauma?  If yes, research CTE.


He should have a thorough medical evaluation to search for hormonal, nutritional or other medical problems that mimic dementia.


If he has not yet been terminated, he should request short term disability medical leave of absence pending completion of his medical and neurological workup.  After the results of the workup, it will be determined if he can return to work, or if he will need long term disability.


Do not accept less than a thorough evaluation.  If you call the Helpline, they can help you find local resources.  Look for a university memory clinic or an Alzheimer's Disease Research Center.  The telephone number for the Helpline is 1-800-272-3900.  Ask to speak with a Care Consultant, who is a specialist on dementia and family dynamics.  In fact, you can ask to speak with a Care Consultant to discuss your own feelings.  Issues may appear to be solely marital issues, when they are due to undiagnosed early dementia or other medical issues.  A Care Consultant is available 24 hours a day, and there is no charge for this service.


If you post on the Spouse/Partner board, you will find other spouses who have been through or are going through the same thing you are experiencing now.  Also, please read this article about anosognosia, if he appears to be unaware of having difficulties.

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 

 

 

Iris L.


jfkoc
Posted: Friday, July 29, 2016 8:40 PM
Joined: 12/4/2011
Posts: 20254


Iris is spot on...the things you are noticing could be caused by any number of things. You must see that a thorough diagnosis is made....every part of the process is vital. Start with this:

http://alz.org/alzheimers_disease_diagnosis.asp

I also want to invite you to the spouse forum....lots of info and support there too.

 


40years
Posted: Friday, July 29, 2016 8:47 PM
Joined: 7/29/2016
Posts: 7


Iris L. I am assuming the neuropsychologist specialized in dementia.. not sure!  Yes the testing last 7 hours.  The results showed no Alzheimer's only attention problem, which he has had some, not severe though.  Blood work and MRI were also good.  He does have sleep apnea, but he always uses his mask and we go to his appointments.. and yes he had a sleep study test.  I had a private consultation about the testing.. and once again, he said it was all attention.  He has had 5 farm equipment accidents in less than 2 months.. and the doctor said all from attention. I asked, why has it gotten so bad in the last 2 years.. He didnt know.  He still questioned me about his sleep apnea. I felt like he thought I was lying on well he uses his mask.  I showed the results to my own doctor... she said, this test only test for Alzheimers.. she also said he could have another type of dementia...  is this true from your knowledge of the testing?  He has worked with solvent type chemicals for 42 years.. I asked about exposure... once again his response was its all attention.  He does get fixated on things.. example.. he has never ever read, well he read anywhere from 10 hours or more a day.. for a month.. now he doesnt read. He would watch you tubes on how to fix his car.. for 3 months. He knows how to fix things.. never could fix it..  he would watch them all day and night in between sleeping.  He sleeps 4-6 hours then he gets up in the middle of the night.. usually takes a morning nap and afternoon nap.. sometimes for a long period of time.. other times he is restless gets up and down. He did have a minor head injury a long time ago.. not severe.  MRI was normal.  They went through the medication list and was pleased. He is a diabetic on insulin for about 5 years. Not in the best of control... better control now that he doesnt work. He cannot do.. facebook or email... always forgets the passwords.. we have changed them 7 times this past week...  he or I write them down.. then he cant figure out which password works. It is constant.  He messes up the computer constantly and his phone. Since we are self employed, there is no disability available. One of the reasons I did the testing was to try for Medicare disability.
40years
Posted: Friday, July 29, 2016 9:09 PM
Joined: 7/29/2016
Posts: 7


Thank you!
Iris L.
Posted: Friday, July 29, 2016 10:06 PM
Joined: 12/15/2011
Posts: 17580


40 years, he has had an extensive workup. I would ask the neurologist what condition causes so much attention deficit.  Adults can have attention deficit disorder, but that usually begins in childhood, and results in a spotty education and a spotty career.


The diagnosis of the dementias is a rule out diagnosis, meaning all other possible medical causes must be found and ruled out.  Some dementias show more difficulty with executive function than with memory.  


It is possible that the issue is major depression.  Has he had aggressive treatment for depression, including antidepressants and talk therapy for at least three months?  Major depression can mimic dementia, and there is also overlap between depression and dementia.


I also have sleep apnea and use CPAP.  Sleep apnea contributes to my cognitive impairment, but sleep apnea is not the major contributor.



The current doctor admits that he doesn't know why your husband has worsened in two years.  Dementia is a progressive disorder, meaning it only goes in one direction, which is worse, unless it is stabilized, as in my case.  I was a pediatrician in my career, so I know something about diagnosis and patient care.  If the doctor is unsure, seek a second opinion.  


Seek a university memory clinic or an Alzheimer's Disease Research Center.  You can google ADRC or call the Helpline to ask for the best memory center in your area.  You might want to consult a specialty diagnostic center, such as Mayo or Cleveland Clinic.  If you go to a specialty center, they will review his initial testing results, and perhaps order some more of their own.  


Unfortunately, not all neurologists are specialists in the dementias.  I consulted a neurologist in 2007 who ordered a PET scan and said, since it was normal, I was fine.  But I wasn't fine.  It took me another year to finally get an appointment with a dementia specialist.  Even after his evaluation, I sought out a second opinion at an ARDC.  Despite getting conflicting results, I began treatment, and the rest is history.  I have been on Exelon patch and Namenda for seven years.


If you get a diagnosis of one of the dementias, he would be eligible for Compassionate Allowance for Early Onset Alzheimer's Disease.  Usually a specific diagnosis is required, but I have recently read that a PWD (person with dementia) was awarded SSDI (Social Security Disabilty Insurance) benefits with an MCI (mild cognitive impairment) diagnosis.  He must work with a knowledgeable neurologist, because the conclusion of SSDI will be based on the medical reports that his condition makes him unable to work.  (There was just some recent discussion about the wording on the Spouse/Partner board.  You might want to peruse those threads.  I'll see if I can locate it.)  (Sorry, I cannot locate it, because I don't remember the thread it was on.  But I believe it was within the past week or so.)


Your husband is welcome to join us patients if you can assist him.  

Regarding technology and other devices--We can still use our brains and figure things out, but somethings are not worth struggling with.  We call simplification, "accommodations."  We learn to accommodate our illness.  We use simpler technology and simpler devices. 


   He needs a simpler computer setup.  There  is no point in expecting him to remember because he cannot.  His best tactic is to write things down that he wants to remember, such as passwords.  Is he able to do this?  This is what we do.  We have had discussions about it.    


His life will have to become a great deal simpler.  Remove excess stuff around the house.  Get simpler devices.


On the Spouse/Partner board they will tell you about getting legal documents, such as POA (power of attorney) and making other financial and legal arrangements.

 

Iris L.




40years
Posted: Friday, July 29, 2016 10:56 PM
Joined: 7/29/2016
Posts: 7


Iris L.   Really appreciate all of your great advice and suggestions. 

The doctors and I do not see depression, so no there has been no treatment. 

My primary care doctor did suggest to wait 6 months, and get another opinion.She also said go t an Univeristy or Mayo.  The problem will be getting him to go since they said there was nothing wrong with him.  They did not even suggest a follow up appointment.  When I went for a private consultation, the doctor said, if he gets worse in 3-4 years to come back..   Well you could imagine how I felt about that comment. 

He does write his passwords down, but as I said before, they are not organized with date etc.. and it makes it difficult to figure out which password is current. I do like the idea of finding simpler electronics for him to use.. I will check on that, thank you!  

Some days I just want validation.  I am looking through some of the other threads. 


a_step@a_time
Posted: Sunday, July 31, 2016 1:55 PM
Joined: 11/21/2015
Posts: 237


40years, congrats on 40yr marriage. you are smart and observant, you KNOW something wrong.  I assume MRI would reveal if have brain tumor, wondering if any of those tests would reveal something like vascular dementia.  Keep at it. Maybe ask doctor for help applying for soc sec disability.  Maybe try naturapathic doctor. They seem more open to test for disorders by looking at nutritional deficiencies then lead to further investigation. *hugs* to you!
a_step@a_time
Posted: Sunday, July 31, 2016 2:03 PM
Joined: 11/21/2015
Posts: 237


40years, I'm not familiar with insulin but wonder if like pill medicine... If get new brand _  or company change formula _ could there be allergic reaction?
Iris L.
Posted: Sunday, July 31, 2016 4:08 PM
Joined: 12/15/2011
Posts: 17580


40 Years, you might want to have a telephone consultation with a Care Consultant from the Alzheimer's Association.  The Care Consultant is a social worker with expertise in dementia and family dynamics.  They can help with validation and help with the long period of the diagnostic process.  Call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant.  One is available 24 hours a day, and there is no charge for this service.  


Also, you might join the Chat Room in the evenings.  Many of the spouses chat.  Click on "Chat Room" on the dashboard above, and then click on the chat room where you see members, which is usually the spouse/partner chat room.


Step, the purpose of doing the imaging studies is to search for something to rule out, such as a brain tumor, or evidence of a stroke.  Having a "normal" MRI does not negate a dementia diagnosis.  In fact, a "normal" MRI tends to rule in a dementia diagnosis.  It sounds contradictory, but it is so.  


More sophisticated imaging studies may be more specific to one of the dementias, but insurance companies currently consider many of them to be experimental, and won't pay for them.  One way to obtain them is to become part of a clinical trial.


Iris L.


40years
Posted: Sunday, July 31, 2016 10:24 PM
Joined: 7/29/2016
Posts: 7


Thank you...  the MRI was normal for his age.  Thank you for the support.
40years
Posted: Sunday, July 31, 2016 10:26 PM
Joined: 7/29/2016
Posts: 7


Interesting about the MRI...  good to know.  I will call the phone you posted. Thank you once again.
BillBRNC
Posted: Monday, August 1, 2016 10:10 AM
Joined: 12/2/2015
Posts: 1018


40years, this is just my two cents given what you've described and what the tests have ruled out. I would try as hard as you can to get your family doctor to refer your husband to Mayo's memory assessment clinic, with a diagnosis something like worrisome cognitive decline with everything else being ruled out by testing. Or as close as you can get to this. Then go have the full exam and tell them everything, and beg for a Glucose Pet Scan. It can find things that the neurotesting appears to have ruled out or determined as normal, particularly during early phase. This is my two cents. I had a hard time getting a formal diagnosis, but I finally got full exam by a memory assessment clinic and a Pet Scan, and it showed early onset Alz and Lewy Body Dementia. Not a good diagnosis, but at least I now know the score. Good luck.