Does my (ex)partner have bvFTD?

Panda72

New member
Nov 19, 2017
4
0
Hi, I've signed up to the forum because I have a pressing worry that has my life stuck and stagnant. I've been with the same man for all my life until I left him 4 months ago. I left him chiefly because of neglect and a sense of being abandoned which had been getting worse for years. I didn't want to leave him, but felt I had no other option as he kept wounding me over and over.

When I left he was completely unperturbed and neither expressed nor showed any emotion. The same day I left I discovered (by accident) that he had gone out to buy KY jelly because he intended to have sex with a woman he knew. It didn't happen - he told me he threw it away and he definitely did break off contact with this woman - so I put it down to a grief reaction, but this incident is symptomatic of his behaviour generally, which I have found unfathomable. He is completely different from the man I knew, or thought I did, up until his forties, when he started to behave 'oddly' and with an increasing callousness.

People think he is a very kind, sympathetic and helpful man, and he was, but his behaviour has become so very odd. At least to me. The trouble with this is I don't know if what I'm looking at is simply someone who has fallen out of love or if there is a genuine personality change.

The things that are really noticeably different about him is that he no longer seems to feel anything very much at all, and he can be stunningly insensitive about what he says and does. I had barely left before he started telling me about dating sites he was using and the women who he was sharing time with; he maintains he is not dating anyone. I have twisted my brain into knots wondering if this is just some way to make me feel jealous, and that would make sense, except for the fact that he doesn't actually seem to care whether I'm there or not.

Not long after I left he was over at my new house, helping me with redecorating (we have stayed 'amicable' but it's been hard for me) and I broke down, simply from sadness and loss, and while he hugged me and said he missed me too and loved me too he was really just parroting what I said. I got no impression that he meant any of it, or indeed really registered any deep feeling at all.

He has systematically become very engaged in his career (as a performer) and fills his time with it entirely - in fact he jumped into it with both feet when I left, another hurt that I felt acutely but don't really understand. He will let nothing come between 'gigs' and his life and will cheerfully stand you up for something unpaid and of no particular importance.

In short he's become very callous and insensitive and really just doesn't seem to be functioning like a human being at all. I privately call him the Golem, because he's like a stone man.

He exhibits very little classic dementia traits except for some problems with memory, but they are very minor and could easily be senior moments. (He's 61). The only traits he shows like that is he can't remember what he's told to who, doesn't retain a lot of what you tell him and sometimes looks very blank when you say something to him or point something out, like he can't quite work out what it is, or what he's supposed to say or do. He has a kind of mask-like face and I did actually worry a few years ago that he was developing Parkinson's like his sister (that and the fact that he suffers form frozen shoulder and has lost his sense of smell).

I realise this is all terribly vague but I know that the behavioural variant of Frontotemporal Dementia has showing a lack of empathy and appearing selfish as primary traits and he definitely has this in spades. But is his 'selfishness' just because he no longer loves me and has a great new exciting life, or is it because actually something is wrong with him and he can't help himself?

There's only one or two other oddities I'll mention. He's taken up being an artist's life model and is thinking of doing 'Boylesque' (male burlesque), both of which are a little uninhibited, for want of a better word, but again, this could simply be his equivalent of buying a red Porsche or dyeing his hair and buying a Harley Davidson.

I'd be very grateful for anyone who cares for someone with bvFTD or who knows the condition well in some other way who could give me advice on whether any of this has any medical significance whatsoever, or is just normal signs of me being dumped! I know the condition is a rare form of dementia, which doesn't help because it makes it all the more unlikely, but his behaviour is just so strange that I can't help feeling there's something amiss. Many thanks!
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello Panda72
I wanted to post to welcome you to TP, though I have no similar experience to draw on to even begin to answer your questions
this community collectively offers up a wealth of knowledge and the members are generous in sharing their own situations - someone with more knowledge may well come along to offer their insight; it may take it a little time as given that many members are carers, they can only pop in when time is good for them
I am so sorry to read of all the worry and upset and heart break you have in your life right now
you have certainly found the right place for sympathy and consideration
best wishes
 

Panda72

New member
Nov 19, 2017
4
0
hello Panda72
I wanted to post to welcome you to TP, though I have no similar experience to draw on to even begin to answer your questions
this community collectively offers up a wealth of knowledge and the members are generous in sharing their own situations - someone with more knowledge may well come along to offer their insight; it may take it a little time as given that many members are carers, they can only pop in when time is good for them
I am so sorry to read of all the worry and upset and heart break you have in your life right now
you have certainly found the right place for sympathy and consideration
best wishes

Hi Shedrech, many thanks for the response; I appreciate it. I do feel very foolish posting this and worried about his behaviour/my situation for well over a year before leaving, convinced it must be my own mental illness, rather than my partner's, but I thought I'd put it out there and see if it rings any bells for anyone. I myself 'discovered' the condition by reading, of all things, a reality magazine where a woman's husband had the problem and it revealed itself by inappropriate sexual behaviour and comments followed by 'selfish' and callous behaviour. The trouble is all these things are observational and I could quite easily be seeing things 'through a glass darkly', given my circumstances. He's a poet so is an intelligent and articulate man, so unless he actually lost his mental faculties there would be no way of knowing if this is a genuine problem or not. I'd hate to think I'm sitting about wasting my life on him when he's just a b*stard!
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
Hello @Panda72 and welcome to talking Point.
I care for my OH who has bvFTD and I recognise all of the symptoms that you mention (even the loss of smell).
The problem with FTD is that to begin with it is all so "woolly" and sounds like a mid-life crisis, marital problems or depression - in fact, my OH was "diagnosed" with all of these things before his diagnosis of FTD.
Unfortunately, it is impossible to say definitively from the symptoms that it is FTD, your ex really needs blood tests to rule out any other problems, and a referral to a neurologist who knows about FTD. Too many doctors dismiss any sort of dementia if the memory is OK, even though people with FTD can have no problems with short-term memory until the dementia is extremely advanced. OH passes the Mini Mental State Exam with no problems at all. My OH has had MRIs (which are normal), a SPEC scan (which shows problems in the frontal lobes), a lumber puncture (non-conclusive) and neuropsychology tests (which show deterioration in working memory, executive function and language - all typical of FTD)

Would your ex be willing to be tested forhis problems? My OH was convinced that all his problems were my fault and we ended up with him being referred to the cognitive clinic in a very roundabout way. In the meantime I would make a journal about all the odd things he says and does because the history as related by someone who knows him well is very important when diagnosing FTD.

BTW - him throwing himself into his career may be because he is beginning to have problems at work and it takes him much longer to do things - just a thought.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
unless he actually lost his mental faculties there would be no way of knowing if this is a genuine problem or not. I'd hate to think I'm sitting about wasting my life on him when he's just a b*stard!
That is just so typical of FTD - I found I was constantly flipping between "he has got something horribly wrong with him" and "hes just horrible and Im leaving". What kept me gong was the knowledge, deep down inside, that this was not the man I married and he had changed so much,
 

Raggedrobin

Registered User
Jan 20, 2014
1,425
0
Hi Panda
You put your situation very articulately and it is not at all foolish to consider these things. I don't have experience of frontal lobe dementia but I just wanted to say it does sound like an awful dilemma you have, between whether he is having a mid-life crisis or it is dementia. What comes across is that something in the jigsaw of who he isn't isn't fitting and having known him for years that is very worrying.

I am writing because if you shared the same GP or went to the same surgery, would it be worth you makign an appointment for yourself to discuss exactly what you have said to us with his GP? The GP can't discuss him, their patient, with you, but you can discuss your concerns with them, so you can convey what your fear are to someone who may be able to help. I hope this suggestion helps.
 

Panda72

New member
Nov 19, 2017
4
0
That is just so typical of FTD - I found I was constantly flipping between "he has got something horribly wrong with him" and "hes just horrible and Im leaving". What kept me gong was the knowledge, deep down inside, that this was not the man I married and he had changed so much,

Thank you, Canary. I actually managed to broach the subject with him today (unfortunately not without some tears - why is it you can live with someone for 40 years yet still have problems having 'difficult' conversations?) and we discussed various childhood problems we'd had that made emotions difficult to discuss. He certainly seemed quite 'sane' and understood (and agreed with!) the points I was making. However, he did also say that he found his lapses of memory worrying and if they got too bad he would definitely go and see about it, so I feel more reassured by that. I think that his lack of emotions is just something he does to try and deal with them (by not dealing with them!). He learned this as a young child when his father would go off for years (to work abroad) and he was left with a depressed mother to deal with.

Anyhow, I feel embarrassed now at having brought this up, but also reassured that a) it's a legitimate concern and b) he seems to take the possibility of being (potentially) ill as a real concern and that he won't just ignore it. I think we made some progress! Thanks again for your help; I do appreciate it.
 

Panda72

New member
Nov 19, 2017
4
0
Hi Panda
You put your situation very articulately and it is not at all foolish to consider these things. I don't have experience of frontal lobe dementia but I just wanted to say it does sound like an awful dilemma you have, between whether he is having a mid-life crisis or it is dementia. What comes across is that something in the jigsaw of who he isn't isn't fitting and having known him for years that is very worrying.

I am writing because if you shared the same GP or went to the same surgery, would it be worth you makign an appointment for yourself to discuss exactly what you have said to us with his GP? The GP can't discuss him, their patient, with you, but you can discuss your concerns with them, so you can convey what your fear are to someone who may be able to help. I hope this suggestion helps.

Thank you, Robin. We don't share a doc any longer, since I moved away, but as I said to Canary (it's all birds today!) above I actually managed to talk to him about it today for the very first time, and while it would have been better to talk to him BEFORE I left, better late than never. He took it all very seriously and was contrite for any hurts he had caused. Unfortunately that is no guarantee he won't just do it again, but hey, inch by inch. He also said he would go to the doctors if things got worse or he showed clear(er) signs of having problems.

Anyway, we'll see how it goes. Thanks again for your reply. It was immensely helpful just being able to air it with someone before I saw him. It always helps to crystallise things when you see them written down, and when someone who doesn't know you from Adam tells you you're not going insane!
 

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