Imposter syndrome

Chammer

 DH finally was able to have CT of head completed last week and it shows no mass, lesion or bleed, no midline shift, grey-white matter differentation normal, ventricles clear, symmetrical and normal in size, no hydrocephalus, no abnormal intracranial enhancements, mild carotid artery stenosis – an essentially normal CT.  It was ordered by his physician for blurry vision and dysequilibrium.

While I am happy that it is normal, it provides no clues that something might be going on inside his head.  DH, whether he has MCI, dementia, or a psychiatric condition, doesn’t believe anything is wrong with him (I know about anosognosia).  He is an active alcoholic and maybe that is the only issue here – his B1 and B12 levels are normal so can’t even really blame his almost daily heavy aclohol consumption.  Getting any kind of neuro or neuropsych eval will most likely not ever happen without a catastrophic event.

I am joining the chorus of several others here – he has always had a difficult personality and our 30 yr marriage has been a challenge for sure.   It has become even more so with his personality changes and mental changes over the past 4 years, to the point that I am not sure how much longer I will be able to tolerate and maintain my own sanity.  I love the difficult, challenging man I married, but this doesn’t feel like him.  All the hard parts of him have been amped up and I don’t get the soft parts anymore.

My MIL had AD which is why I initially joined the Alzconnected forum for help in 2016 - I wasn’t an “imposter” then, but today, I feel like an imposter.  

M1

No need that I see to feel that way chammer.  We all come with different stories and different needs.  As has been said before, because it is a public forum you have to be selective, take what helps and leave the rest.  

Yours is a good example that a normal scan doesn't really mean much.  Says nothing about the microscopic-level changes that must be going on.  I'm sorry it doesn't lend any clarity to the situation.  And still, you're left to cope or deal however you can.  Maybe that's where the forum can be of some help, regardless.  

Ed1937

Chammer, I'm sorry you can't get answers, but you're not an imposter. You don't really have to be "tagged" with anything to get the benefits of the forum. But I know if he was DX'd with something, it might at least make you feel like you knew what was going on.

Dutiful One

Chammer,

Every so often you read a post and think, "Wow. I could have written a lot of that."  Yours is one of those. 

I've come to the conclusion that just because there is no diagnosis, that doesn't mean there is no dementia.  As a social worker once told me after asking how long I'd been married to my spouse, "So, you KNOW this guy. You know something's not right." Of course, there was more to the conversation than that, but that line, "You KNOW this guy," resonated with me. 

After 30 years, you know your husband. You know him to be difficult, you know the challenges you've faced with him and how he'll most likely respond to the suggestion of getting further testing. You know what it will probably take for him to be get help. Although my husband doesn't drink alcohol, the other characteristics you described sound like him. 

What's important is that you know your husband has an impairment.  At some point, everyone is in the pre-diagnostic stage. Some take longer than others, and some never get a definitive diagnosis. You are still living with his changes, and you still need support. From one "imposter" to another, it's important to remember that we aren't posers. We are experiencing a real situation and need real help.  This is truly a painful time. 

storycrafter

Many similar things in our story, Chammer. You are not alone. And by all means, you're not an imposter.

The scans showed/continue to show nothing abnormal for my husband's age. (They are mainly used to rule out other things first. Fifteen years later they now begin to show a little frontal lobe atrophy.)

It was the psychiatrist who prescribed helpful meds to moderate his behavior that was so helpful in the beginning years, while we searched for answers. When I showed him a written list of my observations/changes and concerns, he referred us to a neuro psych for testing and that provided a very helpful evaluation, especially when dh was tested again two years later.

The neuro psychologist was able to compare dh's previous baseline testing to the current tests, in other words, compared my husband to himself on subsequent tests, which showed the kind of losses he was having. It was only those comparisons, along with my personal itemized, short and factual notes, that told the doctor my husband has FTD, behavioral variant.

The first few years when he began having issues, the doctor/s ordered a few tests, but, paid no attention to my questions and concerns. They said something was going on, but they didn't know what. It was only when I began writing things down, dating them, pointing out the changes from his previous characteristic behavior, that they began to pay more close attention.

Eventually things became bad enough that I felt desperate and thought we needed a divorce after a long marriage. He had a depressive episode such that I feared for his life. Then I provided another written list of the latest behavior changes, and requested help to cope with quality of life issues (implusive behaviors disrupting our lives, personality changes like - wide mood swings and increased anger, marked increase in anxiety and sleep issues, serious depression, odd decisions, loss of good judgment, loss of empathy, marked indifference and apathy, inability to repair some things he used to do easily, etc.).

Please pardon the length of this note. I write hoping it might reassure you that you're not alone in the bafflement, confusion, and frustration of this difficult time you're going through. In our case, many years later, my husband is now on medications that thankfully help him immensely and they have given us both a better quality of life. It's given me time to adjust, learn, and develop a support system which is making a big difference for my own quality of life.

Everyone's situation is different. There is support out there. Keep reaching out until you find the help you need to navigate. We cannot do it alone. One of the first things I did was get to an Alzheimer's local meeting, a great source of information on local resources and helpful references. Don't hesitate to use the Alz helpline and ask for a Care Consultant. Wishing you courage and strength.

mrahope

FWIW, no one here is an "imposter".  We all know beyond any doubt that something is wrong with our spouse or partner and they are not the person we once knew.  Like storycrafter, I find myself documenting some of the behavior as it happens.  I've never shared this with the doctor but I find it helps me to know that I'm not the one who is imagining things.

JudyMorrowMaloney

Chammer, you are not an imposter.  I would be curious to know who interpreted the result of the CT scan.  If it was a primary care doc, then I would see about having a neurologist review them.  My DH was having the same issues and it turned out he had frontal temporal dementia.  His primary care doc. totally missed the boat when assessing him.  She blamed his symptoms on his history of depression and anxiety but I knew something else was wrong.   Even his psy. was clueless.  I think alot of these docs need to go back to school and get a little more training on recognizing dementia symptoms because so many of them are clueless.    I guess it goes to show that when all you have is a hammer, everything else looks like a nail.

Josie in Podunk

Chammer - you are no imposter.

After doing all the things I have no concrete answers beyond a nebulous diagnosis stated as MCI of Unknown Cause.  In the now 8 years since that diagnosis he has only changed moderately overall….memories old and new, executive decision making, etc.  

And, I, too, have felt like an imposter more than once as I face nowhere near the trauma in my life as so many here do.  I have my days where I rail to the universe in my frustration when he has tough days.  I come here and read finding these folks battling their loved ones demons on a daily basis and wonder at their strength (as if they have much other choice). They are, frankly, my very human, fallible, wonderful, frustrated, loving heroes.

No matter the depth of the diagnosis…we are Tribe.

Another Day

Chammer - you're not a scammer....or an imposter. Leave that behind. You're in the same boat as so many of us are and Thank God we have people who have come before us and they offer great advice. I'm not cheering the fact that they have already dealt with what we're going through, but since they have why not glean what information we can from their experience(s).  

I want to say more, but my time is up for the moment. Hang in there!

Denise1847

Dear Chammer,  My heart goes out to you.   You know something is not right and the doctor should take you seriously to conduct more tests.  For example, was a mini-mental assessment done?  Please take care of yourself and protect your peace.