Diagnosed with Frontal lobe dementia

canary

Registered User
Feb 25, 2014
11,344
South coast
The apathy and lack of empathy is hard to take. I look at OH and he seems so "normal" that it is easy to slip into thinking that he is perfectly able to do things and he is just being difficult. Actually, though, he is not able to do them - he cannot work out how to do things. In OHs case he is able to tell you how to do things, but he is not able to take this knowledge and apply it to real life. So many people are taken in by this. They check he "knows what he is doing" and when he reels of what he has to do they say "OK, you know what to do" and let him get on with it - but he cant do it. All his skills have been gradually lost over the past few years and now he even requires help with showering.

It is difficult to change your mindset, but I have had to step back emotionally to protect myself. I now know that I cannot rely on him for anything - I am on my own and if I dont do something, or organise someone else to do it, it simply wont get done. OH used to be such a practical man and did a lot round the house; the first time I realised that he he no longer knew how to paint a wall it nearly broke my heart. He kept picking up the roller and brushes, looking at them and putting them down again. Eventually he walked away.
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
The apathy and lack of empathy is hard to take. I look at OH and he seems so "normal" that it is easy to slip into thinking that he is perfectly able to do things and he is just being difficult. Actually, though, he is not able to do them - he cannot work out how to do things. In OHs case he is able to tell you how to do things, but he is not able to take this knowledge and apply it to real life. So many people are taken in by this. They check he "knows what he is doing" and when he reels of what he has to do they say "OK, you know what to do" and let him get on with it - but he cant do it. All his skills have been gradually lost over the past few years and now he even requires help with showering.

It is difficult to change your mindset, but I have had to step back emotionally to protect myself. I now know that I cannot rely on him for anything - I am on my own and if I dont do something, or organise someone else to do it, it simply wont get done. OH used to be such a practical man and did a lot round the house; the first time I realised that he he no longer knew how to paint a wall it nearly broke my heart. He kept picking up the roller and brushes, looking at them and putting them down again. Eventually he walked away.
That is so true. If only someone had explained this to me a year or two ago it would have saved me getting so frustrated. It's taken all that time for me to accept that a grown man who has always been able to do things now can't purely because he doesn't understand what I'm saying and what he needs to do. The thing is that although I now know why it doesn't stop me from getting frustrated. I have to keep telling myself.
 

Florencefennel

Registered User
Jun 11, 2018
28
It does thank you some hope it will pass soon. What a good word “Randy” going to call my OH RH from now on. He has been driving me mad for over a year and is getting worse (did not think possible) It’s a primal need and the more he is relieved the more he needs. His obsession with porn and other sites does not help. Don’t know how to cope with this, distraction is no good the only way I can get some respite is to fall out with him which is exhausting, upsetting and is not how I want live. We have fallen out more times in this last six months then in all our 48years together!!!
The consultant is aware and I am seeing her independently soon. Hoping for some help medication wise as I can’t see any other way.
Just wish this phase would come to an end soon it’s spoiling our relationship both cross and dissatisfied with each other.
Oh dear, randy is such a good description, I haven’t been able to tell anyone,, except vague hints in front of OH to the specialist so although I sympathise greatly, I’m so glad I’m not alone with this. He has hundreds of young women on his Facebook page so I quickly un friended him so they didn’t land on my page! Occasionally I read them to check the content and just hope this phase will pass on.
I am very glad we moved, it was hard and OH was very confused but I do feel much safer knowing I can manage house and garden without killing myself!
Today, my daughter & son in law took us to a large garden centre about 45mins drive away. Later my lovely sil said, I had no idea what you are coping with...he’s asked me 5 times where he is and what day is it! Pretty simple stuff compared to some of it but I felt understood and acknowledged which was great!
Yes, sometimes I think I can only react by getting angry and upset which, of course, makes me feel mean and unkind. However, I do notice that he feel the difference in my mood and doesn’t carry on but appears rather sheepish, like a child that knows he’s done something wrong but not sure what! Oh life is so different and unnatural, isn’t it?
 

rainbowcat

Registered User
Oct 14, 2015
139
My father has frontal lobe damage (although his formal diagnosis is "alcoholic dementia with a vascular component") and he has been through some awful hyper-sexual phases. We had a webcam installed so we could keep an eye on his health, but what we often got was an eyeful!! I'm not kidding when I say he could (ahem) "go on" (by himself) for over 16 hours a day, and making demanding phone calls to me because "women" (scammers) were emailing him needing money and he wanted to send them money so they could visit him...we were SOO thankful when one of his falls smashed his laptop...! :eek:

I would agree that removing the "triggers" could help. We sorted Dad out with a basic computer a few months after he broke the laptop, and in that short period of time, he'd partially forgotten how to use the internet, meaning while he could type in his desired sexual phrases into google, he then couldn't work out what he was supposed to be clicking on next.
 

canary

Registered User
Feb 25, 2014
11,344
South coast
I must say that installing the parental controls on the wifi removed a lot of the triggers for OH, but there were still times when it was pretty awful. That seems to be a thing of the past now that erectile dysfunction has raised its ugly head (or rather, doesnt - if you see what I mean :eek::rolleyes: )
@Florencefennel - I can understand you not wanting to say anything in front of the specialist, but its something that s/he does need to know. Why not write a letter and send it to him/her? Thats what I did, and still do just before appointments.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
It does thank you some hope it will pass soon. What a good word “Randy” going to call my OH RH from now on. He has been driving me mad for over a year and is getting worse (did not think possible) It’s a primal need and the more he is relieved the more he needs. His obsession with porn and other sites does not help. Don’t know how to cope with this, distraction is no good the only way I can get some respite is to fall out with him which is exhausting, upsetting and is not how I want live. We have fallen out more times in this last six months then in all our 48years together!!!
The consultant is aware and I am seeing her independently soon. Hoping for some help medication wise as I can’t see any other way.
Just wish this phase would come to an end soon it’s spoiling our relationship both cross and dissatisfied with each other.
You can speak to his GP & there are gentle medications that help reduce his desires .

Think bromide but more modern.....
if a loved ones behaviour is becoming unacceptable then please don’t be shy in talking to the GP or CMHT. This is dementia affecting his brain, part of his illness.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
@Florencefennel, I know that people telling you it’s common behaviour depending on where the dementia is affecting the brain doesn’t always help.

My personal experience of this type of behaviour this week....
here goes ....
My mum is up for respite care near me. I went to get her so I could take her to see Dad near by in his care home.
Mild mannered gentleman came up to me while I was speaking with staff member & took my hand. He then gently placed it on his genitalia, I said kindly ‘ no my lovely I don’t do that & removed my hand & patted his arm.

It’s the disease & help for your husband to interact at a more socially acceptable level is available. Please don’t be embarrassed by this, if he was incontinent you’d ask for help - this isn’t any different.
It’s a loss of inhibitions
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,810
Nottinghamshire
The thing that lead me to Talking Point in the first instance was my dad’s sudden and extreme interest in sex. He’d made inappropriate advances to my friend and to his eldest granddaughter. They both learned to avoid certain areas of his bungalow where he would corner them and become very cuddly in a creepy sort of way. Thankfully he never tried anything worse so I think he was aware that they were “out of bounds” but not aware that his behaviour was not proper.

He was convinced that he was going to find himself a woman “under 40” in spite of the fact that he was well into his eighties...either online or at the local marketplace :eek:.. and he went on and on about it regularly asking me to bring him a woman when I asked him what he wanted from the shops...eventually I realised he wasn’t joking!!!

I understand just how challenging this behaviour can be, especially as it is so out of character. My dad was such an old fashioned gentleman - everyone used to comment on it before dementia. My brother thought it was funny...it was anything but!

This had been going on for about 6 months before I found TP and someone suggested that medication could be the cause. I did a bit of research and found that Donepezil could be the culprit and his dose had been increased from 5-10mg about 6 months before. Fortunately the doctor at the memory clinic (who’d never heard of this side effect) agreed to reduce the dose back down to 5mg and the problem disappeared within a week.

I had to be persistent to convince him that the meds could be the problem but I received a phone call from him the next day saying that he’d done some research on the matter and agreed that it could be the cause and could I let him know what happened.

Dad was also prescribed a low dose of sodium valproate to calm him but this was not needed after the donepezil was reduced.
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
Yes, sometimes I think I can only react by getting angry and upset which, of course, makes me feel mean and unkind. However, I do notice that he feel the difference in my mood and doesn’t carry on but appears rather sheepish, like a child that knows he’s done something wrong but not sure what!
That's exactly the reaction I get from my husband. I did comment on my husband's behaviour on another post. He will often stand looking out of the window and then come and tell me about what he sees, which is always of a sexual nature. Things that he says other people are doing outside, (things they'd get arrested for if they really were). I do find it upsetting and although I've read that I should just go along with it, I can't. I now put my hand up and say "enough, I don't want to know" and I get that sheepish look and he goes away mumbling to himself.
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
I did a bit of research and found that Donepezil could be the culprit and his dose had been increased from 5-10mg about 6 months before. Fortunately the doctor at the memory clinic (who’d never heard of this side effect) agreed to reduce the dose back down to 5mg and the problem disappeared within a week.

I had to be persistent to convince him that the meds could be the problem but I received a phone call from him the next day saying that he’d done some research on the matter and agreed that it could be the cause and could I let him know what happened.
This is interesting. My husband is on Donepezil 10mg and has been for a few years, but his problem, which I commented on in the last post, has only just started. Unfortunately my husband isn't under the memory clinic and only sees the doctor about his condition once a year. Also, I've just learned that my doctor has left the practice. Maybe I should push for more help.
However, I'm also wondering about whether to ask for a reduction in his medication as his behaviour isn't too bad compared to others.
 

canary

Registered User
Feb 25, 2014
11,344
South coast
although I've read that I should just go along with it, I can't.
I have not found Compassionate Communication to work as well with OH as it did with mum (who had Alzheimers).
With OH he is still very aware and his memory has only recently become a problem. The difference is, though, that OHs behaviour and loss of abilities were the first sign, rather than memory loss, and it was the fact that he had lost the understanding of what was appropriate that led to many of the problems. It was only my horrified reaction that made him realise it wasnt acceptable. Yes, Ive seen that sheepish expression many a time too - the same expression as that of a dieter caught with their hand in a biscuit tin. They know its not what they are supposed to do, but dont consider it a big deal and their only regret is that they have been caught.
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,810
Nottinghamshire
This is interesting. My husband is on Donepezil 10mg and has been for a few years, but his problem, which I commented on in the last post, has only just started. Unfortunately my husband isn't under the memory clinic and only sees the doctor about his condition once a year. Also, I've just learned that my doctor has left the practice. Maybe I should push for more help.
However, I'm also wondering about whether to ask for a reduction in his medication as his behaviour isn't too bad compared to others.
It’s probably not the donepezil. Dad’s behaviour started as soon as his dose was upped. I just didn’t put 2 and 2 together. I think it’s worth having the conversation. There might be something that can help. I always thinks it’s worth trying something out (e.g reducing dose) for a while to see if it helps. I’m not a doctor though.

I also found that there is help out there but you have ask and be prepared to be pushy to get it.
 

Janey B

Registered User
Aug 15, 2019
23
I must say that installing the parental controls on the wifi removed a lot of the triggers for OH, but there were still times when it was pretty awful. That seems to be a thing of the past now that erectile dysfunction has raised its ugly head (or rather, doesnt - if you see what I mean :eek::rolleyes: )
@Florencefennel - I can understand you not wanting to say anything in front of the specialist, but its something that s/he does need to know. Why not write a letter and send it to him/her? Thats what I did, and still do just before appointments.
I wrote a history and explained my difficulties before the appointment. It’s really hard talking in front of OH and I don’t want to upset him
 

canary

Registered User
Feb 25, 2014
11,344
South coast
@jenniferjean - there is a variant of Alzheimers that is variously known as behaviour variant Alz (bvAlz), frontal lobe variant, atypical Alzheimers and probably a few other things. Basically it is Alzheimers that instead of causing memory problems as the first symptoms and following the usual path of Alzheimers, starts in the frontal lobes and causes very, very similar symptoms to FTD. It can sometimes be extremely difficult to tell them apart and this is why some people have the diagnosis of exactly which dementia it is, changed over time. This is what has happened with OH - he had a diagnosis of FTD to start with, which the neurologists have decided is not what he has - although they realise that he has something and he has all the symptoms of FTD. Its just that the scans do not support this diagnosis and he has a lot of physical symptoms too, which do not seem to fit in any little box.
 

Florencefennel

Registered User
Jun 11, 2018
28
I must say that installing the parental controls on the wifi removed a lot of the triggers for OH, but there were still times when it was pretty awful. That seems to be a thing of the past now that erectile dysfunction has raised its ugly head (or rather, doesnt - if you see what I mean :eek::rolleyes: )
@Florencefennel - I can understand you not wanting to say anything in front of the specialist, but its something that s/he does need to know. Why not write a letter and send it to him/her? Thats what I did, and still do just before appointments.
Yes, I agree that sending a letter before we see the specialist would save the embarrassment of explaining.
Also it means that I have time to think about what I need to discuss before we get there.
 

Florencefennel

Registered User
Jun 11, 2018
28
@Florencefennel, I know that people telling you it’s common behaviour depending on where the dementia is affecting the brain doesn’t always help.

My personal experience of this type of behaviour this week....
here goes ....
My mum is up for respite care near me. I went to get her so I could take her to see Dad near by in his care home.
Mild mannered gentleman came up to me while I was speaking with staff member & took my hand. He then gently placed it on his genitalia, I said kindly ‘ no my lovely I don’t do that & removed my hand & patted his arm.

It’s the disease & help for your husband to interact at a more socially acceptable level is available. Please don’t be embarrassed by this, if he was incontinent you’d ask for help - this isn’t any different.
It’s a loss of inhibitions
 

Florencefennel

Registered User
Jun 11, 2018
28
Thank you D of D. That post was well put and makes me feel less queasy about this behaviour...do women have similar problems or is generally a male thing? With my PWD it’s mostly on the internet and only occasionally directed at me, although when we on holiday earlier this year, he asked me if we lived together...just testing the water?!
 

Florencefennel

Registered User
Jun 11, 2018
28
@jenniferjean - there is a variant of Alzheimers that is variously known as behaviour variant Alz (bvAlz), frontal lobe variant, atypical Alzheimers and probably a few other things. Basically it is Alzheimers that instead of causing memory problems as the first symptoms and following the usual path of Alzheimers, starts in the frontal lobes and causes very, very similar symptoms to FTD. It can sometimes be extremely difficult to tell them apart and this is why some people have the diagnosis of exactly which dementia it is, changed over time. This is what has happened with OH - he had a diagnosis of FTD to start with, which the neurologists have decided is not what he has - although they realise that he has something and he has all the symptoms of FTD. Its just that the scans do not support this diagnosis and he has a lot of physical symptoms too, which do not seem to fit in any little box.
Interesting...this is has happened to my Pwd, after being given a definitive diagnosis of FTD, after another scan, this was changed to bvAlz or frontal lobe variant. His symptoms are definitely FTD but his memory is becoming far worse ( Alzheimers?) although his speech and mobility are fine so seems like the worst of both worlds! I have say that explanation is clearer than anything I’ve read previously and has very helpful.
 
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