AveMaria123 Posted June 2018
Husband doesn't have a firm diagnosis after 2 yrs of testing...rest of family in denial about it.
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Even though our grown children and his siblings and mom have asked me what is wrong with him, they now want to think that he is OK. Whenever I bring up the obvious odd things that he says, they try to explain it away. I don't know if they are trying to make me feel better or they are just in denial. So if he is OK, then who is going to validate me and my reality since we have been married for over 30 yrs. He can no longer do the job that he used to do. The last two yrs he has worked under someone else. Is anyone else in this situation?
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the things that he says and does that don't make sense. He used to be a builder, but can't do it any more so he made the first move 2 yrs ago to start testing procedure.
Have his symptoms progressed in the 2 years since he had to change jobs? What parts of being a builder can't he do any more? Besides saying odd things (such as?) what does he have trouble with, or what are his troubling behaviors?
You know that hubbby's behavior is not normal, that he is not himself. You have eliminated FTD as a cause, but there is some other cause operating here. Another kind of dementia? Some other kind of brain illness? Just because you don't have a label for it (yet) doesn't mean it isn't real.
Are there any of your children or in-laws who share your concerns? Perhaps it would be less frustrating to confide in only those not in denial. Avoid the topic with other family. But you do need validation of your reality. Join a local support group of caregivers of persons whose loved ones have dementia. Hearing others' stories will also help you evaluate your husband's symptoms.
And stick around here. Share your frustrations and questions here. Lots of experienced caregivers can relate!
His diagnosis in my mind is FTD but the head neurologist kept waffling that he did have FTD, No he didn't, Yes he did. Husband is tired to being used as a guinea pig. I don't blame him. It will take me awhile to move around this website. Do you have experience with FTD?
Don't be too hard on the neurologist. Dementia is very difficult to pinpoint without invasive brain procedures. So confirmation of a diagnosis can only be made post-mortem at this point. My husband's autopsy did confirm his diagnosis of LBD. In my support group another person's loved one was diagnosed with LBD, tentatively at first and then with more confidence. His doctor (an expert in LBD) was certain this man had LBD ... but his autopsy did not show that disease at all, and revealed a different kind of dementia. I'm not sure that is a big comfort, but uncertain diagnoses is by no means rare.
But whether your husband has FTD or not, he has SOMETHING that creates the odd behavior and interests the neurologist. Denial is not helpful. Again I suggest limiting contact about this subject with family members in denial. (Don't necessarily limit contact with them, just avoid this subject.)
I think I would not have any more testing right now. As the symptoms get worse/change you can revisit that decision. For now, just accept that there is something wrong, possibly FTD, and go forward dealing with the symptoms as they are presented.
Do hang around here, and ask specific questions about caring for your husband. Give us more information about his current limitations and odd behavior, so we can relate relevant experience.
Find and join a local caregivers' support group, for people caring for those with FTD, or for dementia in general, or even just for elders. One gentleman joined our LBD caregivers group when his wife had that diagnosis. Later the diagnosis was switched to progressive supranuclear palsy, but he continued in our support group because he found that we validated his reality and the interchanges were important to him.
If you can't count on support from all of your family, get it where you can!
I suggest that you start a new thread here. Perhaps ask, "Does this sound like FTD?" and describe specifically some of your husband's key symptoms. That would be a way to get the attention of others here whose experience may be similar to yours.
I highly recommend the FTD Support Forum. You will find a wealth of information and support there. On
I am so sorry you are going through this. Even after years of Dad's decline, some relatives are still in denial, especially his brother. While most cases are sporadic rather than genetic, I sometimes wonder if some relatives go into denial for fear of having the "gene" themselves.
Both FTD and ONE are real heartbreakers, and harder on the caretaker than Alzheimer's. Also, because people tend to think all dementias are either ALZ or look like it, getting across to them that your loved one has something wrong with his brain is tough.
I wish you all the best on your difficult journey. There are a couple of books on FTD (What If It's Not Alzheimer's and The Banana Lady). Teepa Show also has some excellent videos on You Tube that I found of immense help.
You might find this thread helpful, too: https://www.agingcare.com/questions/mother-has-had-signs-of-dementia-for-a-year-the-doctor-diagnosed-frontaltemporal-lobe-dementia-437017.htm