Does the doc diagnose based jon CNS neurocognitive test?

Tabatha68

My DH(age 56 now) had neurocognitive testing in 2016 and got an score of 75% for his age , was diagnosed with depression and was told there wasn't anything wrong with him,despite the things I saw.

Fast forward to 2023, I got him back to a neurologist, he just had a new CNS neuro test, scored  overall in the 45% , except for his Reaction Time score which was in the 10% range. So the testing doc's comments are "his scores do not indicate MCI". We don't actually see the doc for the official results until April, but I am trying to prepare for that.

Dh just rolls along not seeming to care one way or another. He hasn't worked in over a year, he spends his days puttering around in the yard and in his garden with no other responsibilities. I literally do everything in our lives. He cannot remember stuff, cannot pay attention , you know the drill. 

I cannot accept going back in to the doc to have them tell us that everything is normal. It is clearly not. He went from a man who worked good jobs for 34 yrs of our 35yr marriage, He rarely took sick days.  He can't plan things anymore. Nothing about our life is "normal" anymore.  And while I can accept a diagnosis of dementia because that would at least explain things, to go in and be told there is nothing wrong might push me over the edge, and I don't know if I can stay in my marriage at that point because while he is happy and stress free , I am not. I no longer have a partner that participates, there are no real conversations, no affection or attention, and so on. I miss the love of my life , my best friend cause that is not who he is anymore. 

Any advice would be appreciated.  If the tests don't indicate a disease, what can I do??

Pat6177

Tabatha, first of all, you are not crazy. You live with the man and you see the symptoms. If it walks like a duck and talks like a duck… well, treat it like a duck. In other words, use the coping mechanisms that caregivers of PWD use. Care for your DH in ways that we caregivers of PWD do. If you are told that nothing is wrong, you say thank you very much and you find another path to a diagnosis. Yes, a good diagnosis is important. But a lot of people never get a diagnosis, maybe because they refuse to go to a dr or they are good at showtiming, or the clinician they go to may not have experience with dementia. But you know something is wrong and that it’s probably dementia. So follow the advice that members here provide: see an elder law attorney and get your legal affairs in order. That attorney should be able to help you position your DH to qualify for Medicaid if you’re not able to private pay for long term care. Start looking for ways to care for yourself. Many members here find that the only way forward is with acceptance of the disease. Find a support group. None in your area? Find one online. Start one. What has helped you through difficult seasons of your life before? Your spirituality? Support from family or friends? Deep breathing? Are you able to leave your DH home alone? If not, is there day care in your area? Acting as if your DH has dementia is not going to hurt him. It will help you to be a caregiver. My guess is that when you do get a diagnosis that makes sense and explains the symptoms that you see, your caregiving won’t change much.

Tabatha68

Thank you so much for your kind words. 

We don't go back to the doc to find out the formal test results or diagnosis until April, but I've seen the results on LO's online portal. If they say he's "fine" , not only can I not get him on SSDI, but of course HE takes that info and believes it. So then anything I say gets disregarded cause "he's fine", ya know? And at that point I just want to scream, well then go back to work cause acting like you are a kid on summer break is getting old , if you're "fine". 

Honestly I wouldn't care if he didn't go back to work if he would just help out at home. but, no, its all on me. If something is broke, it stays broke cause he can't figure out how to fix it or just lacks any interest in fixing it. And I don't have the desire to fight about it anymore.

They also tested him for the APOE4 gene and he does have 1 copy of it. 

I  have Poa and wills, and such in place. I got us both coverage for Long term care about 6 years ago because I knew something was off with him and because I have seen what happens when a loved one does not have LTC in place. 

He doesn't work anymore so a diagnosis would help with getting him on SSDI as he is otherwise not old enough to draw regular SS. My job pays the bills. 

So far I can leave him home alone and only worry a little bit. He hasn't left the stove on, although he has left the sink running, . 

Most of the time our youngest daughter can be here with him if I am not. She works from home and is a great help. 

I am wondering if they will recommend that he stops driving since his Reaction time score was 10%.  I already do most of the driving but if I am not home , sometimes he will drive to the store and it worries me. 

As far as self care, I work. It gets me away from the house. My schedule is split so I do work from home some of the time and I have to be very firm about the fact that I am not to be bothered,because otherwise he will be right at my side interrupting me to tell me about something growing in the yard/garden. 

I really miss our old life , the one where I didn't have to be responsible for everything, where I had an adult partner in life instead of feeling like I am a parent to my spouse. 

If you have read this far, just know I am unburdening my frustration and sadness. I am normally an optimistic positive person. But I cannot see anything positive about this anymore. I cannot talk to my beloved about any of this. I don't want to dump all this sadness on my daughters and friends. 

I tried going to counseling but after 2 visits she said, " well it looks like you have great self control, be sure to call if you think you need any more appointments." I think she decided that since my "problem" was unsolvable, she couldn't help. I really just needed someone to listen , didn't expect her to fix anything.

I feel very alone in this battle. There are no support groups locally, when I have joined some on FB, it just made me feel more discouraged.  

Well I've got to get busy with my day, Thanks for listening. Tab

mrahope

Just a small suggestion for you about the counseling.  I, too, hate to overburden my other relatives or friends and have sought counseling.  IMHO, it doesn't matter if "you have good self-control".  I do, too.  You're not seeking to change yourself by seeing a counselor, so much as to get some support and a "safe space" to try and unburden yourself.  We can't stay strong if we keep on adding weight to ourselves.  I would urge you to try another counselor/therapist who might be more understanding of your needs.

Marta

If it is dementia, it will progress to a point where there can be little doubt about the diagnosis. Social security will pay retroactively to the time he could no longer work. 

Was he fired from work because he couldn’t perform?  Were there disability benefits with that job?  I think you need legal advice proactively to maximize the chances that your husband will qualify for SSDI. 

Iris L.

Tabatha68 wrote:

  If they say he's "fine" , not only can I not get him on SSDI, but of course HE takes that info and believes it. So then anything I say gets disregarded cause "he's fine", ya know? And at that point I just want to scream, well then go back to work cause acting like you are a kid on summer break is getting old , if you're "fine". 

If your DH has dementia, then he has anosognosia.  He truly believes he is fine.  You cannot convince him otherwise.  You have to accept that anosognosia is real.  It is a feature of dementia.  You cannot fight it, because you will remain in the condition you are in, of wanting to scream, because anosognosia does not go away.  You will have to use work-arounds, which the members talk about, to get things done.

Iris

M1

I would agree with considering getting an experienced attorney involved if SSDI eligibility is at stake.  That attorney can perhaps guide you to other physicians for another opinion.   And if you're not already doing it, document everything.  I'm sorry it's so difficult.  Your grief would be enough without all the additional obstacles thrown in the way.  Please keep us updated.

Twin Mom

You didn't say where his testing has been done.  I believe if the testing comes back with a diagnosis of "he is fine", I would try taking him to a university medical training center with a geriatric psychiatry division that is actively involved in research.  In the interim I would be video taping all of his odd behaviors and daily issues you are struggling with.  I don't think anyone believed me at the level I needed them to understand until I started pulling out the videos.  Until the videos were viewed, everyone was in the let's wait and see mode.  I think mostly because my DH was "too young" and he was great at performing for short periods of time.

   The day of the diagnosis...he told me on the way to the appointment I was going to be mad at him because he had had a good night sleep and was going to do very well with his appointment.  The geriatric psychiatrist interviewed me alone first and then began interviewing DH.  My husband did fantastic for about the first 45 minutes (I was seriously worried ...all was fine), however, after one of the questions my husband's mind took a left turn and he never returned so to speak.  The diagnosis was made including "lack of competence to make decisions". I received a phone call on the hour drive home from our attorney because the psychiatrist had already let him know the diagnosis.

   Did anything change, not really...but I now had a diagnosis.  We had LTC insurance and I was able to immediately apply for the benefits.  It was approved without delay.  Honestly, I think had we stayed with community based physicians we would still be without diagnosis.  It seems nobody wants to be responsible for placing the label.  We are 7 years since diagnosis (2016).  Husband had quit work and driving 4 years earlier.  He did the right thing by quitting when he did as he was a physician and was not happy with his own performance.  Not a single member of his group ever said anything about his performance but he was evidently aware enough that he knew he needed to take himself out of the game.  He has now been diagnosed with bvFTD. 

Joydean

One thing on SSDI, they will only retro pay for 2 years back. When my husband had head injury and I tried to get SSDI because his doctors recommended it, they wrote all kinds of letters. Dh was still denied and stated he would have to go to unemployment office to get tested to see if he could preform any type of work. This was a 3 day testing, dh didn’t make it through 4 hours. Unemployment office sent in their letters. SSDI wrote and said he was approved and 

“sorry he should have been approved before but they could only pay 2 years back. “  don’t know if that’s changed but that was our experience. I was surprised that all the doctors and there were several, their letters didn’t make a difference. 

Iris L.

From what I was told, colloquially, it is routine to deny the majority of applicants on the first try thinking that only the truly needy will be persistent.

Iris