So frustrated....no diagnosis yet!

Anna7692

My DH had a neuropsych test done end of 2020. It showed marked impairment. The neuropsych dr met with dh, both of our counselors and myself to go over results. She said she would term dh as vulnerable and wanted a driving eval. Wanted us to find new neuro for him and threw out the possibility of MS. She also wanted me to seek conservatorship/guardianship. DH passed driving eval (but they wanted him to have monthly ride-along to make sure there were no changes as well as no phone, radio, conversation while driving). He has forgotten all of that. I found a new neuro that specializes in MS last March. She did extensive workup and did MRI as well as spinal tap. MRI was normal. Spinal tap....beta amyloid was low but tau was in normal range. She said that she believed he has EOAD and that he was right on the border for being diagnosed. She believed that if she tested him in a year (that's a couple of weeks from now)....he would fall in the range to have a diagnosis. She wanted another neuropsych test for medical reasons (first one both of our counselors thought he was dealing with trauma from childhood so it wasn't a neuropsych focusing on medical/dementia although the first neuropsych test kept coming back to EOAD when neuropsych dr ran results). I met with her alone to go over results as she said my dh was too emotionally fragile at that point. She said she had mentioned MS as EOAD is so rare and she doesn't deal with dementia as much as trauma so was hopeful it was something other than that. 

New neuropsych test was done in July by someone his old neurologist had referred dh to. There was no input from me nor dh's counselor which the first neuropsych dr had input from both of us. 2nd neuropsych test was normal!!?? (how is that possible). After we heard those results, my dh told me he needed to call that neuropsych dr back because he'd lied to him and dh said he still thought he had AZ. Now he refuses to believe there is anything wrong with him....it's all me. New neurologist said she wanted to see him again last month (Jan). DH refused to go....he's gone back to his old neurologist who says he's fine (but hasn't once spoken with me nor dh's counselor). This week we just got a letter that the new neurologist has left her clinic! Things are getting bad with risky financial decisions being made. If we had a diagnosis, our trust agreements would take effect. Without a diagnosis, I would have to go to court to seek guardianship/conservatorship. I just can't imagine how much dh would hate me if I did that (he's already mad at me). I'm blamed for things he is convinced I've said/done which aren't true. The sad thing is that I don't think our adult children can see how much he is failing. Have any of you had problems with getting a diagnosis? Have you pursued conservatorship/guardianship? I just can't imagine living like this if he doesn't even have a diagnosis yet and things are so crazy! I just want to run and yet this is not my dh (I don't recognize this version). I'm 90% sure that we are dealing with EOAD and yet that 10% of being unsure, just haunts me. If I'm wrong, I don't think he would ever forgive me and maybe not my kids either. Sorry this is so long!

Paris20

Anna,I am so sorry for all the difficulties you’re facing, in addition to your husband’s symptoms. Having been on these boards for awhile, I’ve read about the difficulties we encounter when seeing a doctor who cannot or will not make that diagnosis. My husband’s neurologist first diagnosed him with MCI. Two years later, that same doctor made reference to my husband’s Alzheimer’s Disease. It was the first time he uttered those words, but in such an offhand way, that I stopped him to confirm what he said. He then added that DH had it for over a year.

Then there was my uncle, who knew something was wrong but was not diagnosed for way too long. Granted, it was over twenty years ago, but my uncle was on a business trip when he realized he was no longer able to read. Still there was no diagnosis until he was probably at stage 5. 

We know our spouse. If your gut tells you something is wrong, follow through on discovering if you’re right. Maybe another doctor, who is willing to tell you the truth, will get to the heart of the matter in your husband’s brain.

hat2

Did his MRI show brain atrophy? My husband was recently diagnoised from his MRI that his neurologist ordered. He was then sent to a psychologist who did quite a bit of testing and she confirmed his diagnosis .He just turned 62. I have been noticing issues for a few years . He was let go from his firm (previous CEO of a financial firm) which is the only way I convinced him to see a doctor.He was the provider. I am so scared for him and myself.

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Anna7692

Paris20, thank you. I think I just need to be reassured that I'm not crazy I think the thing that frustrates me is that my dh's neurologist has been prescribing a med for 12+ years that the new neurologist claimed (based on studies) increases your chance of developing AZ by 84% if you're on the med longer than 6 months! You would think that neuro would at least be aware of that. He thinks we are just having marriage difficulties and of course, I'm the problem. I've only seen him once and that was when we were questioning MS based on first neuropsych dr! He yelled at me and asked me "who the hell told you MS? No, he doesn't have that!"  

My DH now refuses to see anyone except his old neuro so I'm pretty resigned to having to wait for something major to happen which is so sad. It's hard to imagine having to wait years for a diagnosis when living in chaos. I'm sorry that happened for you as well. 

Anna7692

Hat2, the MRI didn't show anything. DH is still working but has a lot of inside support staff. I think without that, he would've been done a long time ago. I have no idea how work is really going and don't feel like I can ask (it's a big company and no one I trust enough for it not to get back to DH). The new neuro had wanted to put him on short-term disability last March and she told us that she didn't think he'd go back to work. DH never wanted to do that and he's still working. He's 59 but I've been noticing behavior changes for at least 6+ years. I'm sad there are so many of us that are dealing with this at younger ages.

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Anna7692

Victoria2020....thank you! You have given me a lot to think over! My dh is not a willing participant at this point. (He is healed and I'm the awful person who dragged him all over last year trying to diagnose him with dementia). I have not seen an Elder Lawyer yet, but think that probably needs to happen asap. We did see an attorney last year and had our trusts, POA's, etc updated. My dh would be irate if he knew I was seeing an elder attorney but I do need direction especially since his neurologist is worthless and the good neuro left the area. My dh has also made clear, he will not see another neurologist. Thankfully no one is dealing with the childhood trauma except his counselor. My dh would not resign as trustee....he is of the opinion right now that I have no right to an opinion and men make decisions! The odd thing is he's never been like this before and up until 6-7 years ago (out of 37 years together), we rarely fought. I have worked in finance/banking/bookkeeping my entire adult life so it is odd having him question my abilities in this area. It's pretty clear I need to talk to elder law attorney and find out next steps. You're right, I would hate for dh to lose his job and the benefits he would receive from them if he went out on disability. Thank you again for all of your tips/advice!

Iris L.

Anna7692 wrote:

Victoria2020....thank you! You have given me a lot to think over! My dh is not a willing participant at this point. (He is healed and I'm the awful person who dragged him all over last year trying to diagnose him with dementia). 

Anna, please read about and understand anosognosia.  This is a feature of the dementias that causes the PWD to be unaware of having dementia.  He truly believes he is fine and will resist and become upset if you confront him with reality.  So don't  do this.  You will have to learn work-arounds from the members.  With anosognosia, he will never be a willing participant.  

Does his job require an annual performance review?  Discreetly try to see if he has had any warnings for poor performance.  He could be fired at will and lose benefits.  If it come to this, he can take short term disability pending completion of his medical and neurological evaluation.  Then, depending upon the results, he can apply for long term disability.  If he is retirement age, he could just retire.

Make sure the evaluation is thorough to exclude dementia mimics.

Best wishes.

Iris L.

dayn2nite2

I think because he is still working, you are in a position of probably either having to find an ally in his office who will tell you what his performance truly is (and forcing him out on disability if it's not good) or just forcing him directly onto disability because he really could get fired.

They hide performance well.  I finally had a sympathetic person in my mom's office let me know what was really happening and I pulled her out immediately.  And they wouldn't call me until she was falling asleep in the office, leaving in the middle of the day for "emergency" and hiding work in a drawer that she couldn't complete.  She was just a day or so away from being fired and losing all her benefits.

You are in a race against time because if you are seeing things, his staff is also.

Dutiful One

Anna,

You've received some wonderful feedback here.  Please know that you are not alone. I am in a similar situation with my spouse, and my readings here have led me to realized that there are many others who are struggling to get a diagnosis.  Self-doubt is part of the process; I went through it with my mother. In her case, it was not as difficult to get a diagnosis as it was to get an accurate one.  A primary care doctor diagnosed my mom with MCI, or "at risk", without any specialists.  She read my  mother the list of symptoms and concerns I had sent ahead of an appointment, which fueled Mom's paranoia and mistrust, especially at me. The dr. told Mom she'd reverse the condition by going for daily walks. Mom lived on  winding, country road with no shoulder or sidewalk. The doctor said that wasn't a good excuse, and shamed her for giving up her gym membership. She told Mom that doing crosswords and word search puzzles would do nothing to help stimulate her mind. This doctor took her off needed medications cold turkey. It was a horrible year and set the diagnostic process back significantly. It was only after I was able to change doctors that we got more help, and then we had to start all over again. It took time, but we got there.

Now that I'm going through this with my spouse, who started showing signs while my mom was still living, I am not surprised at the time it's taking to get results.  With Mom, there were hurdles. In this situation, it's roadblocks.  My spouse is in his 50's. I began to see red flags when he was 49 years old. I did the same thing with him that I did with my mom: I contacted his doctor with a list of concerns. The doctor called my husband and told him everything I'd said. I know, there are patient rights, but this caused a lot of problems. In another case, my spouse was in the ER, and I asked to speak to the doctor alone, but he refused, saying whatever I had to say, needed to be said in front of my husband.  This did not go well.  

What I have been told is that yes, my husband has an impairment, but until he is willing to seek help, there will not be a proper diagnosis. I've also been told, he's too young; it's probably just a mental illness (as if having "just" a mental illness is somehow easy, sheesh!);  it's a marriage problem; and the list goes on, but he's "too young" to have any form of dementia. Interesting how he's not "too young" to have diabetes, hypertension, atherosclerosis, pulmonary problems, hearing loss, and other conditions.  

Anyway, I get it.  As others said, you will need to do your best to stay calm and in control.  I know the fight or flight feelings you're probably having, and seeing him capable and confident one day but falling apart the next day can lead you to question yourself. But as a social worker told me, "You've been married a long time. You KNOW this guy. You know something's not right." She was a great resource, actually.  She flagged his chart and sent a recommendation to his doctor for testing, so the wheels are turning--slowly, but they are turning.  Keep reaching out, you'll find understanding and support here. Like you, I'm sorry this is long....I don't have time to edit because my dh is sitting here pushing me to get ready to leave, an hour earlier than we'd already decided to go out today. He lives by his own timeline.