Diagnosed with Frontal lobe dementia

Janey B

Registered User
Aug 15, 2019
23
Hi folks
Despite already expecting a dementia diagnosis. I have mixed emotions about the outcome. Pleased that something is wrong !!! yet tearful and anxious about the future ( I have had 2 years of erratic behaviour) In fact as we went to the clinic my thoughts were if nothing is wrong with him “I’m leaving “ The diagnosis fits his symptoms exactly although he is 77 years old which according to the info is old for this type of Dementia. His right temporal lobe is badly damaged causing changes in his behaviour. OH thinks nothing is wrong with him. His apathy and lack of empathy has been really hard to deal with. He was a kind loving husband and father and I miss him. Other behaviours which I don’t really feel I can discuss with you all have caused me considerable distress. I wrote to the consultant and explained my difficulties and I am now just hoping for some medication to curb this behaviour. I am seeing the consultant independently next week so fingers crossed
My mind is over active worrying, planning and trying really hard to distract myself
 

canary

Registered User
Feb 25, 2014
11,342
South coast
Hi @Janey B
At least you know now.
I have been told that OH does not have FTD, but he has all the symptoms, so I understand where you are coming from.
He too has apathy and lack of empathy - he sits all day in the conservatory on his android tablet. I have been accused of coercing him, taking him over, telling him what to do and controlling him. I too considered leaving him. Im pretty sure I know what behaviours you are talking about - been there, done that, got the horrified T-shirt :eek: I found it helpful to switch on the parental controls on the wifi ;).
BTW, if he has been prescribed donepezil, please talk to his doctor about this as it can sometimes cause worsening behaviour (especially of the sort that is worrying you)
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
He was a kind loving husband and father and I miss him.
Oh how I empathise with you on this and just wanted to say so because I found that a sympathetic word comforted me a bit. My husband has Alzheimer’s disease but he is no longer the man I married but this dependent child.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Hi folks
Despite already expecting a dementia diagnosis. I have mixed emotions about the outcome. Pleased that something is wrong !!! yet tearful and anxious about the future ( I have had 2 years of erratic behaviour) In fact as we went to the clinic my thoughts were if nothing is wrong with him “I’m leaving “ The diagnosis fits his symptoms exactly although he is 77 years old which according to the info is old for this type of Dementia. His right temporal lobe is badly damaged causing changes in his behaviour. OH thinks nothing is wrong with him. His apathy and lack of empathy has been really hard to deal with. He was a kind loving husband and father and I miss him. Other behaviours which I don’t really feel I can discuss with you all have caused me considerable distress. I wrote to the consultant and explained my difficulties and I am now just hoping for some medication to curb this behaviour. I am seeing the consultant independently next week so fingers crossed
My mind is over active worrying, planning and trying really hard to distract myself
My mum had lady & right hand side damage - infact mixed dementia- if she was a bingo card she’d be two off a full house!
Yes those inhibitions go, not much comfort that as Mums progressed it’s become easier. Mums started memantine & I don’t expect miracles but I hope she can have a better quality of life.

Be brutally honest with the consultant. I emailed ahead of the appointment the issues, I found that easier & less emotive.
Take care of yourself
x
 

Florencefennel

Registered User
Jun 11, 2018
28
Hi @Janey B
At least you know now.
I have been told that OH does not have FTD, but he has all the symptoms, so I understand where you are coming from.
He too has apathy and lack of empathy - he sits all day in the conservatory on his android tablet. I have been accused of coercing him, taking him over, telling him what to do and controlling him. I too considered leaving him. Im pretty sure I know what behaviours you are talking about - been there, done that, got the horrified T-shirt :eek: I found it helpful to switch on the parental controls on the wifi ;).
BTW, if he has been prescribed donepezil, please talk to his doctor about this as it can sometimes cause worsening behaviour (especially of the sort that is worrying you)
 

Florencefennel

Registered User
Jun 11, 2018
28
Janet and Canary, my partner was diagnosed with FTD nearly two years ago, you both described the symptoms perfectly and I think I probably can understand the behaviour problems because I have found some upsetting content on his iPad which is totally out of character. I have learnt a lot about these rarer dementias from an open university website called’futureLearn’, through these free courses, I learnt much about different symptoms and the progress of this dreadful illness. We haven’t heard from our gp since the diagnosis but had a referral to a Memory clinic and have seen a specialist there and my partner was put on Rivastigmine, however I then read that these drugs are not licensed for FTD and may make things worse so now he has been taken off and has no medication. He has also been referred to a Neurologist but we haven’t heard anything back yet. We don’t know of anyone else with this type of dementia, no support groups in our area so it’s good to be in touch with you two. Sorry about the lengthy post!
 

Janey B

Registered User
Aug 15, 2019
23
Hi @Janey B
At least you know now.
I have been told that OH does not have FTD, but he has all the symptoms, so I understand where you are coming from.
He too has apathy and lack of empathy - he sits all day in the conservatory on his android tablet. I have been accused of coercing him, taking him over, telling him what to do and controlling him. I too considered leaving him. Im pretty sure I know what behaviours you are talking about - been there, done that, got the horrified T-shirt :eek: I found it helpful to switch on the parental controls on the wifi ;).
BTW, if he has been prescribed donepezil, please talk to his doctor about this as it can sometimes cause worsening behaviour (especially of the sort that is worrying you)
Hi Canary
I too have been accused of trying to control him and in some ways it’s true. He has very little control over his life now, I do everything. How I wish this was not so but what else can we do?
Thank you for the suggestion re the wi fi I went to do it then felt guilty, do I really have the right to control this private area of his life as well. This is so hard isn’t it. He is forgetful at times but not really confused, people who do not know him well would not think anything was wrong. It is his behaviour with me that has changed and it is so hurtful.
I now know it’s the dementia causing all this turmoil but that really does not help me I can’t help feeling angry, hurt, used, taken for granted and sad.
Can’t sleep brain buzzing
 

Janey B

Registered User
Aug 15, 2019
23
Oh how I empathise with you on this and just wanted to say so because I found that a sympathetic word comforted me a bit. My husband has Alzheimer’s disease but he is no longer the man I married but this dependent child.
Hi Grahamstown
Thanks for the sympathy, it’s appreciated. We have lost such a lot with this cruel disease. It’s a strange kind of loneliness
 

Janey B

Registered User
Aug 15, 2019
23
My mum had lady & right hand side damage - infact mixed dementia- if she was a bingo card she’d be two off a full house!
Yes those inhibitions go, not much comfort that as Mums progressed it’s become easier. Mums started memantine & I don’t expect miracles but I hope she can have a better quality of life.

Be brutally honest with the consultant. I emailed ahead of the appointment the issues, I found that easier & less emotive.
Take care of yourself
x
Hi DesperateofDevon
Thanks for the tips and good thoughts.
 

Janey B

Registered User
Aug 15, 2019
23
Janet and Canary, my partner was diagnosed with FTD nearly two years ago, you both described the symptoms perfectly and I think I probably can understand the behaviour problems because I have found some upsetting content on his iPad which is totally out of character. I have learnt a lot about these rarer dementias from an open university website called’futureLearn’, through these free courses, I learnt much about different symptoms and the progress of this dreadful illness. We haven’t heard from our gp since the diagnosis but had a referral to a Memory clinic and have seen a specialist there and my partner was put on Rivastigmine, however I then read that these drugs are not licensed for FTD and may make things worse so now he has been taken off and has no medication. He has also been referred to a Neurologist but we haven’t heard anything back yet. We don’t know of anyone else with this type of dementia, no support groups in our area so it’s good to be in touch with you two. Sorry about the lengthy post!
Hi Florencefennel
Good to hear from you. Have things changed a lot since his diagnosis 2 years ago ?
I am in the process of information gathering and reading everything I can find about his condition. I will have a look at the open university website. Not good reading so far I’m afraid but I need to know. His behaviour is the problem not his memory although he can be forgetful. We have holidays booked and there are things we planned to do.( I retired last month!!!) can’t bear to think that life as we know it may be over. I am missing work bored and lonely OH spends most of the day in bed. Feeling sorry for myself
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Hi DesperateofDevon
Thanks for the tips and good thoughts.
Bless you lovely, you really are going through the emotional mill. It’s horrible when those inhibitions are lost. I can’t imagine how traumatic it is for this to be your husband. My heart aches for you

My parents have both lost inhibitions along the way, it was another stage of this disease & I’m grateful to say it has faded
Somewhat!!!

I am to deal with cringeworthy experiences & find a way through making light of it & laughing ; not everyone can do this but it’s my coping mechanism for life - my go to default to stop the tears of grief & frustration over the situation.
Both my parents react well to this diversion tactic & laughter is an amazing release & infectious.

It’s so hard on all this disease, I wish you inner strength & laughter for your day today & the following.

Ps
Yesterday was a difficult day shall we say- my friend & I, on the way to collect Mum from respite care to visit Dad in care home, passed some twitchers in camouflage with all their vast equipment & something childish came over me.
I started to giggle & said wouldn’t it be funny if I beeped my horn & all the birds flew up! My friends shock & surprise at this out of character comment was compounded when - after driving past still giggling ......... I tooted the horn!

No the birds didn’t take flight on mass but the silliness & giggles helped me

I know I’m a bad person...... but the thought still makes me smile.
 

Florencefennel

Registered User
Jun 11, 2018
28
Hi Florencefennel
Good to hear from you. Have things changed a lot since his diagnosis 2 years ago ?
I am in the process of information gathering and reading everything I can find about his condition. I will have a look at the open university website. Not good reading so far I’m afraid but I need to know. His behaviour is the problem not his memory although he can be forgetful. We have holidays booked and there are things we planned to do.( I retired last month!!!) can’t bear to think that life as we know it may be over. I am missing work bored and lonely OH spends most of the day in bed. Feeling sorry for myself
Yes I feel things have changed quite quickly but because I made the decision to move from our large house and garden as a precaution against an unknown future, there has been obviously a lot of disruption, practically and emotionally for both of us. We have moved to a village close by and now have a bungalow but pwd is convinced he moved here alone and I just came to stay recently! ( I long to ask who did all the packing and unpacking from a 4 bed house to this 2 bed and all the work since!!) Hey ho!
The specialist thinks there is an element of Alzheimers as his memory is increasingly affected. I can see the logic of that but the main difficulty ( amongst all the rest), is the FTD symptoms of apathy and lack of empathy as well as judgement ( he will agree to people who come to the door offering to do jobs ). All this from a previously highly intelligent, private person who has disappeared into dementia.
Glad you have holidays booked, Janey remember that ‘ one person with dementia is one person with dementia ‘ and don’t get too pessimistic about your future journey. I have to read everything about this illness but it is hard to take in and I have always wanted to know as much as possible about living well with it but don’t think I am succeeding at all at the moment. Take care.
 

canary

Registered User
Feb 25, 2014
11,342
South coast
I understand only too well what you mean about others not seeing the problems.
do I really have the right to control this private area of his life as well.
As everything progresses you will find that you will have to "interfere" more and more in his life. I didnt want to either, but I was too distressed to ignore it and the behaviour wasnt just staying on his android, IYSWIM...........
I have also had to safeguard our finances as OH started getting taken in by financial scams (he sent £5,000 to someone who was probably in Nigeria and the money was never seen again). The trouble is that he doesnt believe that there is anything wrong with his behaviour, so I have had to do so much behind his back and deceive him into thinking that things are his idea ;) . It felt very wrong to start with, but it was necessary for both his and my future.
 

Janey B

Registered User
Aug 15, 2019
23
Same here it’s me that’s wrong all the time, trouble is I start to believe him ??? He thinks his demands/behaviour are normal nothing wrong with him!
I think his internet practices make him worse and no doubt if things don’t improve soon (so much hope for the medication) I will be looking at the internet settings. Just knowing it’s an option has helped a lot Thank you for the tip. JB
 

Wifenotcarer

Registered User
Mar 11, 2018
267
Central Scotland
My OH also has an FTD (with Alzheimers) diagnosis. He also had a long spell, around a year, when he was shall I say 'randy'. This started prior to diagnosis and was neither worse nor better when he started Donepezil. I found it hugly upsetting, but having told all to the consultant and later the SW, they took the issue seriously which resulted in OH getting a place at Day Care once a week.

At home I developed some strategies. I discovered that if the doorbell or the phone rang, it was as if someone had thrown a bucket of cold water over him. Therefore, I kept a wireless bell push to hand which I could ring without him knowing and rush to answer at the front door. Same with mobile phone - ring house phone from mobile, answer house phone and pretend to have a conversation.

Thankfully this phase/stage petered out. Nowadays I can safely give him a hug or a peck on the cheek without fear of him trying to take it further. Hope this helps.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Yes I feel things have changed quite quickly but because I made the decision to move from our large house and garden as a precaution against an unknown future, there has been obviously a lot of disruption, practically and emotionally for both of us. We have moved to a village close by and now have a bungalow but pwd is convinced he moved here alone and I just came to stay recently! ( I long to ask who did all the packing and unpacking from a 4 bed house to this 2 bed and all the work since!!) Hey ho!
The specialist thinks there is an element of Alzheimers as his memory is increasingly affected. I can see the logic of that but the main difficulty ( amongst all the rest), is the FTD symptoms of apathy and lack of empathy as well as judgement ( he will agree to people who come to the door offering to do jobs ). All this from a previously highly intelligent, private person who has disappeared into dementia.
Glad you have holidays booked, Janey remember that ‘ one person with dementia is one person with dementia ‘ and don’t get too pessimistic about your future journey. I have to read everything about this illness but it is hard to take in and I have always wanted to know as much as possible about living well with it but don’t think I am succeeding at all at the moment. Take care.
Oh yes those door to door salespeople who seems cannot read a yellow & black sticker saying NoCold Callers! But can explain a legally binding contract!
 

Janey B

Registered User
Aug 15, 2019
23
My OH also has an FTD (with Alzheimers) diagnosis. He also had a long spell, around a year, when he was shall I say 'randy'. This started prior to diagnosis and was neither worse nor better when he started Donepezil. I found it hugly upsetting, but having told all to the consultant and later the SW, they took the issue seriously which resulted in OH getting a place at Day Care once a week.

At home I developed some strategies. I discovered that if the doorbell or the phone rang, it was as if someone had thrown a bucket of cold water over him. Therefore, I kept a wireless bell push to hand which I could ring without him knowing and rush to answer at the front door. Same with mobile phone - ring house phone from mobile, answer house phone and pretend to have a conversation.

Thankfully this phase/stage petered out. Nowadays I can safely give him a hug or a peck on the cheek without fear of him trying to take it further. Hope this helps.
My OH also has an FTD (with Alzheimers) diagnosis. He also had a long spell, around a year, when he was shall I say 'randy'. This started prior to diagnosis and was neither worse nor better when he started Donepezil. I found it hugly upsetting, but having told all to the consultant and later the SW, they took the issue seriously which resulted in OH getting a place at Day Care once a week.

At home I developed some strategies. I discovered that if the doorbell or the phone rang, it was as if someone had thrown a bucket of cold water over him. Therefore, I kept a wireless bell push to hand which I could ring without him knowing and rush to answer at the front door. Same with mobile phone - ring house phone from mobile, answer house phone and pretend to have a conversation.

Thankfully this phase/stage petered out. Nowadays I can safely give him a hug or a peck on the cheek without fear of him trying to take it further. Hope this helps.
My OH also has an FTD (with Alzheimers) diagnosis. He also had a long spell, around a year, when he was shall I say 'randy'. This started prior to diagnosis and was neither worse nor better when he started Donepezil. I found it hugly upsetting, but having told all to the consultant and later the SW, they took the issue seriously which resulted in OH getting a place at Day Care once a week.

At home I developed some strategies. I discovered that if the doorbell or the phone rang, it was as if someone had thrown a bucket of cold water over him. Therefore, I kept a wireless bell push to hand which I could ring without him knowing and rush to answer at the front door. Same with mobile phone - ring house phone from mobile, answer house phone and pretend to have a conversation.

Thankfully this phase/stage petered out. Nowadays I can safely give him a hug or a peck on the cheek without fear of him trying to take it further. Hope this helps.
My OH also has an FTD (with Alzheimers) diagnosis. He also had a long spell, around a year, when he was shall I say 'randy'. This started prior to diagnosis and was neither worse nor better when he started Donepezil. I found it hugly upsetting, but having told all to the consultant and later the SW, they took the issue seriously which resulted in OH getting a place at Day Care once a week.

At home I developed some strategies. I discovered that if the doorbell or the phone rang, it was as if someone had thrown a bucket of cold water over him. Therefore, I kept a wireless bell push to hand which I could ring without him knowing and rush to answer at the front door. Same with mobile phone - ring house phone from mobile, answer house phone and pretend to have a conversation.

Thankfully this phase/stage petered out. Nowadays I can safely give him a hug or a peck on the cheek without fear of him trying to take it further. Hope this helps.
Oh yes those door to door salespeople who seems cannot read a yellow & black sticker saying NoCold Callers! But can explain a legally binding contract!
Oh yes those door to door salespeople who seems cannot read a yellow & black sticker saying NoCold Callers! But can explain a legally binding contract!
Hi Florencefennel
Good to hear from you. Have things changed a lot since his diagnosis 2 years ago ?
I am in the process of information gathering and reading everything I can find about his condition. I will have a look at the open university website. Not good reading so far I’m afraid but I need to know. His behaviour is the problem not his memory although he can be forgetful. We have holidays booked and there are things we planned to do.( I retired last month!!!) can’t bear to think that life as we know it may be over. I am missing work bored and lonely OH spends most of the day in bed. Feeling sorry for myself
Oh yes those door to door salespeople who seems cannot read a yellow & black sticker saying NoCold Callers! But can explain a legally binding contract!
 

Janey B

Registered User
Aug 15, 2019
23
Yes I feel things have changed quite quickly but because I made the decision to move from our large house and garden as a precaution against an unknown future, there has been obviously a lot of disruption, practically and emotionally for both of us. We have moved to a village close by and now have a bungalow but pwd is convinced he moved here alone and I just came to stay recently! ( I long to ask who did all the packing and unpacking from a 4 bed house to this 2 bed and all the work since!!) Hey ho!
The specialist thinks there is an element of Alzheimers as his memory is increasingly affected. I can see the logic of that but the main difficulty ( amongst all the rest), is the FTD symptoms of apathy and lack of empathy as well as judgement ( he will agree to people who come to the door offering to do jobs ). All this from a previously highly intelligent, private person who has disappeared into dementia.
Glad you have holidays booked, Janey remember that ‘ one person with dementia is one person with dementia ‘ and don’t get too pessimistic about your future journey. I have to read everything about this illness but it is hard to take in and I have always wanted to know as much as possible about living well with it but don’t think I am succeeding at all at the moment. Take care.
Saddened to hear things have changed so quickly. I am actively looking for a bungalow like you I want to be prepared. Can’t manage the garden etc and am ashamed to say get angry when I have to do it. We have had an awful year I have been cross with him re the lack of help and support around the house and his lack of empathy. Changing my mindset gradually and it is helping.
Early days yet only diagnosed this week but I suppose it does not get any easier for us. As OH thinks all is well at the moment I am hoping it stays that way for him.
Take care too
 

Janey B

Registered User
Aug 15, 2019
23
Bless you lovely, you really are going through the emotional mill. It’s horrible when those inhibitions are lost. I can’t imagine how traumatic it is for this to be your husband. My heart aches for you

My parents have both lost inhibitions along the way, it was another stage of this disease & I’m grateful to say it has faded
Somewhat!!!

I am to deal with cringeworthy experiences & find a way through making light of it & laughing ; not everyone can do this but it’s my coping mechanism for life - my go to default to stop the tears of grief & frustration over the situation.
Both my parents react well to this diversion tactic & laughter is an amazing release & infectious.

It’s so hard on all this disease, I wish you inner strength & laughter for your day today & the following.

Ps
Yesterday was a difficult day shall we say- my friend & I, on the way to collect Mum from respite care to visit Dad in care home, passed some twitchers in camouflage with all their vast equipment & something childish came over me.
I started to giggle & said wouldn’t it be funny if I beeped my horn & all the birds flew up! My friends shock & surprise at this out of character comment was compounded when - after driving past still giggling ......... I tooted the horn!

No the birds didn’t take flight on mass but the silliness & giggles helped me

I know I’m a bad person...... but the thought still makes me smile.
Thank you not feeling/finding the funny side of anything at the moment. But your post made me smile carry on being bad you are wonderful.
 

Janey B

Registered User
Aug 15, 2019
23
My OH also has an FTD (with Alzheimers) diagnosis. He also had a long spell, around a year, when he was shall I say 'randy'. This started prior to diagnosis and was neither worse nor better when he started Donepezil. I found it hugly upsetting, but having told all to the consultant and later the SW, they took the issue seriously which resulted in OH getting a place at Day Care once a week.

At home I developed some strategies. I discovered that if the doorbell or the phone rang, it was as if someone had thrown a bucket of cold water over him. Therefore, I kept a wireless bell push to hand which I could ring without him knowing and rush to answer at the front door. Same with mobile phone - ring house phone from mobile, answer house phone and pretend to have a conversation.

Thankfully this phase/stage petered out. Nowadays I can safely give him a hug or a peck on the cheek without fear of him trying to take it further. Hope this helps.
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.