Frontotemporal Dementia - anyone else dealing with it?

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Cazzita

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May 12, 2018
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Mum has FTD, diagnosed a week ago, It was a shock but not a surprise.

For the last 4 years she has been exhibiting odd behaviour: hoarding - receipts for everything were stuffed drawers, neglecting the house - no cleaning or stocktaking etc. Being unreasonable at times which was very unusual.

She now acts very childishly - she has the behavioural variant FTD - sings children's songs/talks to God/dead people and thinks she has to go to school in the mornings.
She sleeps a lot now but still runs the bath each night (thank you God!) so at least she is fairly clean. She wears Tena lady pants and has a few urinary accidents most weeks and I have found soiled underwear/nightwear, so the FTD is clearly attacking her brain and changing her.

She is also very rude at times, her behaviour is sexualised - very, very unusual for my once refined mother. She also loves sugary stuff and always wants sweets and cake but she is also overweight and diabetic. She conducts an imaginary orchestra constantly too!

So, I am starting this thread to hopefully hear from others who are dealing with this rarer type of dementia. How are you going/dealing with it. How long is this likely to go on? Mum was diagnosed at 80, not early onset like most others with FTD. Anyone else diagnosed later in life?

Would love to hear your stories and hopefully, share advice and tips to manage this.
Thank you.
Carolyn xx
 

SoAlone

Registered User
May 19, 2016
142
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Devon
These behaviours are very difficult to deal with. Although my OH now 78 didn't have a diagnosis of FTD but Alzheimers we were told that the frontotempural lobe damage was substantial and was the cause of the changed behaviour. It was explained to me as 'having no filter' on some occassions. Things which would pass through the mind and be dismissed are now voiced, often very loudly. Aggression is more of a problem with OH than sexualised statements. I can not offer any solutions but I can say you need to have support and some form of care package to give you a break from the more extremes on occassions. I carried on for almost a year and in the end suffered carer breakdown, so please to look for and accept help early.
Good luck on your journey. Keep posting, there are some wonderful people on here with much more experience than me
 

Linbrusco

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Mar 4, 2013
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Auckland...... New Zealand
My Mum 77 has had Alzheimers 5-6 yrs and has been in care for 2yrs.

Dad 80 was diagnosed with cognitive impairment 4 yrs ago and is about to be reassesed, for what we think is frontal lobe dementia.
However Dad has shown many traits since we were kids.
Dad was an ex amateur ( almost professional) boxer from his teens to mid 20’s. He worked with paints & solvents and is a 65 yr smoker.
His brain MRI was in worse shape than Mums. Frontal lobe atrophy , white ischaemic matter, and another area of concern possibly due to boxing and trauma to the head. He denies ever having concussion.
Lack of emotion ( unless crying at someone singing) , apathy, selfishness, short fuse, childish behaviour, practical joker, lack of social graces, lack of cohesive conversation, poor judgement, reasoning etc..... have been apparent for many years, just worse now as hes gotten older.
His actual short term memory is not too bad, but his safety is fast becoming a concern.
 
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Cazzita

Registered User
May 12, 2018
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Thanks for the link @karaokePete , will have a read. Thanks also for your responses @Linbrusco and @SoAlone . It's good to read other recounts of this ******* of a disease . I will indeed be seeking help and have a private care assessor coming out next week as mum is self-funding so will take it from there. Best wishes to all on this fab forum :)
 

Ernest

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Jan 23, 2018
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Hi Cazzita. My OH has FLD. We have been together for 35 years.He had a brain injury 12 years ago but the FLD was only diagnosed in January. I had been warned that dementia was likely at the time of the accident but it still has come as a shock. Since the accident, he is now 72, I am 65, his behaviour changed. He coped OK at home on his own. We don't have children and his only brother doesn't live very near. I went to work and as long as I kept to certain routines everything was fine. I needed to phone him regularly and if I missed a call to him I would find several messages asking where I was, basically I had to work my life around him to make it easy. He disliked company and would often take himself outside if I had visitors for lunch or anything. He disliked any sort of change so organising jobs that needed to be done in the house were very stressful for him. last year I began noticing changes. He would fall more often but get himself up. He began to get confused with reading instructions for using any new equipment such as a mobile phone. He'd tell me that he could change TV channels with it and then get very angry with me when it didn't work. To cut a long story short, after falling 4 times and being in hospital 4 times since January, I've had to make the most awful decision of my life, taking him to a CH near where we live. I simply couldn't cope with his mood swings, ordering me about to do this and that for him , being very incontinent especially at night when I would have to change the bed 3 or 4 times because he'd wet the bed even though he wore pads. We live in a very small cottage with just a living/dining room , kitchen and tiny cloak room so the thought of putting a bed downstairs wasn't an option. Also I would have to have full time carers which are just as expensive as being in a CH. We are self funding. I'm told that one of the symptoms of FLD is that the message to move a leg in order to walk, doesn't get through. Some times my OH simply cannot move his leg to walk. It's horrible watching him look down and I know he's trying to move but he can't. He doesn't accept how impossible it would be for him at home and that he is in the CH so that he is safe. He gets extremely angry and frustrated which I can understand. I feel very, very guilty that he is there but, as everyone tells me, I have a life too so its for the best. In my heart of hearts I know he wouldn't cope here, nor I cope with him. I'm probably not being much help here for you but be assured that you aren't alone in this. TP is such a relief when you've had a bad day and feel as if you are the only one putting up with aggression, then absolute sweetness !! talking of which, my OH wouldn't ever eat desserts or sweet things. Since the accident he has more of a sweet tooth than me which is saying something. I used to have to hide biscuits !! Keep reading the posts on TP. They will be much more helpful than I have been but I'm struggling too !!
Take care of yourself.
 

Cazzita

Registered User
May 12, 2018
617
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Hi Cazzita. My OH has FLD. We have been together for 35 years.He had a brain injury 12 years ago but the FLD was only diagnosed in January. I had been warned that dementia was likely at the time of the accident but it still has come as a shock. Since the accident, he is now 72, I am 65, his behaviour changed. He coped OK at home on his own. We don't have children and his only brother doesn't live very near. I went to work and as long as I kept to certain routines everything was fine. I needed to phone him regularly and if I missed a call to him I would find several messages asking where I was, basically I had to work my life around him to make it easy. He disliked company and would often take himself outside if I had visitors for lunch or anything. He disliked any sort of change so organising jobs that needed to be done in the house were very stressful for him. last year I began noticing changes. He would fall more often but get himself up. He began to get confused with reading instructions for using any new equipment such as a mobile phone. He'd tell me that he could change TV channels with it and then get very angry with me when it didn't work. To cut a long story short, after falling 4 times and being in hospital 4 times since January, I've had to make the most awful decision of my life, taking him to a CH near where we live. I simply couldn't cope with his mood swings, ordering me about to do this and that for him , being very incontinent especially at night when I would have to change the bed 3 or 4 times because he'd wet the bed even though he wore pads. We live in a very small cottage with just a living/dining room , kitchen and tiny cloak room so the thought of putting a bed downstairs wasn't an option. Also I would have to have full time carers which are just as expensive as being in a CH. We are self funding. I'm told that one of the symptoms of FLD is that the message to move a leg in order to walk, doesn't get through. Some times my OH simply cannot move his leg to walk. It's horrible watching him look down and I know he's trying to move but he can't. He doesn't accept how impossible it would be for him at home and that he is in the CH so that he is safe. He gets extremely angry and frustrated which I can understand. I feel very, very guilty that he is there but, as everyone tells me, I have a life too so its for the best. In my heart of hearts I know he wouldn't cope here, nor I cope with him. I'm probably not being much help here for you but be assured that you aren't alone in this. TP is such a relief when you've had a bad day and feel as if you are the only one putting up with aggression, then absolute sweetness !! talking of which, my OH wouldn't ever eat desserts or sweet things. Since the accident he has more of a sweet tooth than me which is saying something. I used to have to hide biscuits !! Keep reading the posts on TP. They will be much more helpful than I have been but I'm struggling too !!
Take care of yourself.

Oh @Ernest, thank you so much for your post, I appreciate it more than you know! It is so good for me to hear about anyone who knows anything about FTD as there is not that much information about it and I want to know as much as I can.
So sad about your OH's accident, life is so unfair sometimes and now it's lead to this awful FTD. How sad too that he is now in a CH but it IS for the best as how could you keep on coping? You have clearly done your bit and your best - as we are all doing and we all know how hard it is.
I think it must be especially hard when it is your life partner. I can't bear the thought of it happening to me or my husband but who knows what's waiting in the wings?
Can I ask you what variant your OH has? My mum's is behavioural and while she is not aggressive, she is rude, inappropriate and demanding with no empathy for anyone! Sometimes it is hilarious but other times it is obviously sad. She now shuffles along with very small steps yet a year ago, she walked normally.
It's all bloody awful isn't it?
Mum was sick this week - I didn't know as it was in her en suite but she came downstairs and just sat watching TV without mentioning it. Later when I went upstairs, it smelled terrible and I couldn't believe it when I walked into her bathroom! Yet she was sitting there as if it was all okay.
I cleaned it up (never imagined that I could) but she said she would have 'done it later.' Weird old thing this dementia...
I hope that you start to take time out for yourself now and have a life for yourself. You deserve this break.
Thank you so much again, for responding . Carolyn xx
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Hello @Cazzita
I have hesitated to reply as the neurologist had diagnosed my OH with FTD, but recently it had been decided that he dosent have this. We are still without a diagnosis, although he has all the symptoms of behaviour varient (with a bit of semantic thrown in) FTD and his neuopsychology tests show anterior brain dysfunction. He had a road accident many years ago and after this developed temporal lobe epilepsy. The latest thing being explored is whether he has Chronic Traumatic Encephalopathy (CTE) - which is what boxers and American footballers tend to get.
I have found the change in personality so hard to deal with, the explosive rage, the loss of empathy, the giving away of money and lack of inhibitions a constant challenge. He says very little to me now and I have learned that trying to hold a conversation (like we used to) often results in misunderstandings and accusations. We therefore live in very long periods of silence.
 

Littlebear

Registered User
Jan 6, 2017
133
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Devon
Up until last week I thought my OH had Alzheimer's. He was diagnosed in 2013 and although I always questioned the diagnosis I was told he was atypical.

Last week he was completing his screening for a drugs test which involved a lumbar puncture and analysis of his spinal fluid indicates he does not have Alzheimer's. We are now being told he probably has Progressive Non Fluent Asphagia (PNFA), one of the FTD varients - it affects speech. I've spend 5 years trying to learn everything I could about Alzheimer's & now I have to start again. There seems very little information out there on FTD and even less on PNFA. Is there anyone out there that knows someone with PNFA? What I have managed to find out makes me even more amazed that it wasn't diagnosed at the beginning. Everything we told the specialist points to it. We could have avoid the horrific side effects of Donepezel had we known. Any advice would be much appreciated, I just want to know what to expect in the future.
 

MAMMYGRANNY

Registered User
Jan 26, 2016
69
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Hi Littlebear,
There is lots of information on the AFTD website www.aftd.com. There is also a group called the FTD support forum which is similar to talking point but is for people who are supporting a person who has FTD. I am sorry that you are dealing with this very stressful illness as I am also caring for my husband who has it. Hope you can find those sites.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
FTD is a rare form of dementia and doctors may never have come across it before - PNFA is even rarer.
Im afraid FTD is often misdiagnosed, but Im glad you now know what you are dealing with.
 

Cazzita

Registered User
May 12, 2018
617
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Oh wow, it's just not good enough is it? Far too easy to misdiagnose and I too would be very annoyed if my mum was on the wrong drugs for a period of time for something she didn't have and as you know, mum is only diagnosed becaue of a list of changes I gave them!
Thanks for the pointers to an FTD forum, I will definitly be looking into it. Thanks @Littlebear and @canary for sharing. So much is wrong with the system and with dementia seemingly the next big thing, changes need to be made. I guess it is difficult for the doctors too but the fact that people are long term on drugs they don't need is very worrying :(
 

Tigre

Registered User
Aug 16, 2017
1
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El Ejido Spain
Up until last week I thought my OH had Alzheimer's. He was diagnosed in 2013 and although I always questioned the diagnosis I was told he was atypical.

Last week he was completing his screening for a drugs test which involved a lumbar puncture and analysis of his spinal fluid indicates he does not have Alzheimer's. We are now being told he probably has Progressive Non Fluent Asphagia (PNFA), one of the FTD varients - it affects speech. I've spend 5 years trying to learn everything I could about Alzheimer's & now I have to start again. There seems very little information out there on FTD and even less on PNFA. Is there anyone out there that knows someone with PNFA? What I have managed to find out makes me even more amazed that it wasn't diagnosed at the beginning. Everything we told the specialist points to it. We could have avoid the horrific side effects of Donepezel had we known. Any advice would be much appreciated, I just want to know what to expect in the future.
Hi
My husband was diagnosed relatively quickly with primary progressive aphasia, non fluent variety.
I noticed several years ago he was slurring his speech quite a lot. At first it seemed to be when he was tired or had had a glass or two of wine(not a lot), but after few months his speech deteriorated at all times and eventually I managed to get him to see the doctor. He was referred to neurology and after an MRI scan & SPECT scan PPA was diagnosed. They put him on Donezepil which made him ill so was stopped. He then was on Galantamine which affected his liver. I think they only gave him these drugs to be seen to be doing something because I have since learned that neither are effective for his condition. Over the year and a half since diagnosis he has lost all power of speech & only makes noises.He is also now totally deaf which I’m told is partly due to age (74) & partly to the illness. We have been communicating in writing but I notice now his grammar is not right & it is becoming increasingly difficult to understand what he is trying to say.
Through all this his memory both short & long term is perfect. He appears to be able to read books &spends a lot of time doing soduko. He also does all the cooking at home without problems.
He has some signs of FTD such as lack of empathy,fixed routine etc but at present I can cope with that.
Because of the communication problems he has retreated into himself & no longer wants to socialize, & seems to be a bit disgruntled if I chat to people which makes it hard for me to have a social life. We have always done everything together in our 36 years of marriage, something in retrospect I wouldn’t recommend.
I also would like to know what to expect but with this type of illness every case is different so no one can tell us.
I just know that unless you have experienced it is really difficult to get people to understand.I do try to keep upbeat &look on the bright side but it is not easy!! We just know things will not get better.
 

Cazzita

Registered User
May 12, 2018
617
0
Hi
My husband was diagnosed relatively quickly with primary progressive aphasia, non fluent variety.
I noticed several years ago he was slurring his speech quite a lot. At first it seemed to be when he was tired or had had a glass or two of wine(not a lot), but after few months his speech deteriorated at all times and eventually I managed to get him to see the doctor. He was referred to neurology and after an MRI scan & SPECT scan PPA was diagnosed. They put him on Donezepil which made him ill so was stopped. He then was on Galantamine which affected his liver. I think they only gave him these drugs to be seen to be doing something because I have since learned that neither are effective for his condition. Over the year and a half since diagnosis he has lost all power of speech & only makes noises.He is also now totally deaf which I’m told is partly due to age (74) & partly to the illness. We have been communicating in writing but I notice now his grammar is not right & it is becoming increasingly difficult to understand what he is trying to say.
Through all this his memory both short & long term is perfect. He appears to be able to read books &spends a lot of time doing soduko. He also does all the cooking at home without problems.
He has some signs of FTD such as lack of empathy,fixed routine etc but at present I can cope with that.
Because of the communication problems he has retreated into himself & no longer wants to socialize, & seems to be a bit disgruntled if I chat to people which makes it hard for me to have a social life. We have always done everything together in our 36 years of marriage, something in retrospect I wouldn’t recommend.
I also would like to know what to expect but with this type of illness every case is different so no one can tell us.
I just know that unless you have experienced it is really difficult to get people to understand.I do try to keep upbeat &look on the bright side but it is not easy!! We just know things will not get better.

Thanks for sharing @Tigre . You are so right, things will not get better. It's kind of weird that they get any medication at all really. I don't feel that any of the meds my mum is on are helping anything.
Yes, every single case is different I guess. Maybe we just need to have feedback to reassure ourselves that we are not the only people on the planet dealing with this.
Wishing you lots of love and luck on your journey xx
 

Ernest

Registered User
Jan 23, 2018
141
0
Oh @Ernest, thank you so much for your post, I appreciate it more than you know! It is so good for me to hear about anyone who knows anything about FTD as there is not that much information about it and I want to know as much as I can.
So sad about your OH's accident, life is so unfair sometimes and now it's lead to this awful FTD. How sad too that he is now in a CH but it IS for the best as how could you keep on coping? You have clearly done your bit and your best - as we are all doing and we all know how hard it is.
I think it must be especially hard when it is your life partner. I can't bear the thought of it happening to me or my husband but who knows what's waiting in the wings?
Can I ask you what variant your OH has? My mum's is behavioural and while she is not aggressive, she is rude, inappropriate and demanding with no empathy for anyone! Sometimes it is hilarious but other times it is obviously sad. She now shuffles along with very small steps yet a year ago, she walked normally.
It's all bloody awful isn't it?
Mum was sick this week - I didn't know as it was in her en suite but she came downstairs and just sat watching TV without mentioning it. Later when I went upstairs, it smelled terrible and I couldn't believe it when I walked into her bathroom! Yet she was sitting there as if it was all okay.
I cleaned it up (never imagined that I could) but she said she would have 'done it later.' Weird old thing this dementia...
I hope that you start to take time out for yourself now and have a life for yourself. You deserve this break.
Thank you so much again, for responding . Carolyn xx
Hi Cazzita.
My OH has awful mood swings, can be really angry over very simple things like accidentally dropping something, then in a second being absolutely fine. He has lack of insight so cannot understand that coming home is not an option. He says I should just bring him home and leave him to get on with it. He doesn't see that there's more to it than that, getting his food, getting to the toilet etc etc . He collects things. It's the paper napkins from his meals at the moment. He has a pile of them and if I try to throw away used ones he gets cross. His attention span is very short consequently he can't concentrate on anything. He'll constantly change TV channels hardly ever watching a complete programme. He dislikes noise so will often turn off the sound. He won't refuse food so even though he's eaten a lot if he's offered more he'll eat it. He's developed a sweet tooth !! Sometimes it seems as if he's forgotten how to walk. He gets up from a chair but then can't move. He has lost his sense of humour and we don't have much of a conversation as he doesn't want to talk about anything even though I try. I'm sorry if this sounds all doom and gloom. I don't know how else to describe his situation. I do hope your Mum goes along ok. We're all in this together. Xx
 

Cazzita

Registered User
May 12, 2018
617
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Hi Cazzita.
My OH has awful mood swings, can be really angry over very simple things like accidentally dropping something, then in a second being absolutely fine. He has lack of insight so cannot understand that coming home is not an option. He says I should just bring him home and leave him to get on with it. He doesn't see that there's more to it than that, getting his food, getting to the toilet etc etc . He collects things. It's the paper napkins from his meals at the moment. He has a pile of them and if I try to throw away used ones he gets cross. His attention span is very short consequently he can't concentrate on anything. He'll constantly change TV channels hardly ever watching a complete programme. He dislikes noise so will often turn off the sound. He won't refuse food so even though he's eaten a lot if he's offered more he'll eat it. He's developed a sweet tooth !! Sometimes it seems as if he's forgotten how to walk. He gets up from a chair but then can't move. He has lost his sense of humour and we don't have much of a conversation as he doesn't want to talk about anything even though I try. I'm sorry if this sounds all doom and gloom. I don't know how else to describe his situation. I do hope your Mum goes along ok. We're all in this together. Xx

We certainly are @Ernest. Sorry to hear that your husband is like this, I guess it is awful for them too if they have any inkling at all that they are like that??
My mum is changing and I don't like it either. She is very childish and moody, very critical of everyone and everything, shuffles along in baby steps and is constantly singing nursery rhymes or hymns, clapping and orchestrating. It is all driving me mad and today I had an outburst, shouting at her and of course I feel bloody awful about this now! But I also feel at the end of my tether and shattered with it all.
So depressing! Carers are starting on Monday and I really cannot wait. Then I go back to work full time in September and teaching high schoolers will be a breeze compared to this!
Good that we can come on here and not be judged but get the understanding that we need.
Really hate this FTD!
Take care Ernest and look after yourself. Let me know how things go x
 

Ernest

Registered User
Jan 23, 2018
141
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We certainly are @Ernest. Sorry to hear that your husband is like this, I guess it is awful for them too if they have any inkling at all that they are like that??
My mum is changing and I don't like it either. She is very childish and moody, very critical of everyone and everything, shuffles along in baby steps and is constantly singing nursery rhymes or hymns, clapping and orchestrating. It is all driving me mad and today I had an outburst, shouting at her and of course I feel bloody awful about this now! But I also feel at the end of my tether and shattered with it all.
So depressing! Carers are starting on Monday and I really cannot wait. Then I go back to work full time in September and teaching high schoolers will be a breeze compared to this!
Good that we can come on here and not be judged but get the understanding that we need.
Really hate this FTD!
Take care Ernest and look after yourself. Let me know how things go x
I do hope Cazzita that things become a little easier once the carers settle into a routine. My OH is much happier if he knows things happen at the same time. . I too was a teacher and believe that our training has helped in the management of FTD.
Take care and I find a G&T helps a great deal after a stressful day !!! ( In moderation of course!)
Xx
 

Cazzita

Registered User
May 12, 2018
617
0
I do hope Cazzita that things become a little easier once the carers settle into a routine. My OH is much happier if he knows things happen at the same time. . I too was a teacher and believe that our training has helped in the management of FTD.
Take care and I find a G&T helps a great deal after a stressful day !!! ( In moderation of course!)
Xx

Thank you @Ernest and of course - mine is a Pimms and lemonade!
Yes teacher training certainly makes us organised for sure! Just hope this does become more maneageable as I have had some very black thoughts lately, racing heartrate etc and just wanting to run away. Not helpful to anyone, I know but some days are damn depressing. Mum is SO fat now, really huge - over 14 stone and only 5ft 2 - I feel like she is eating herself to death. Which reminds me, do people who stuff themselves on FTD eventually lose all this weight when it becomes severe?
 
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