Fronto-temporal dementia

[Jackimags]

Hi well we managed to stay out till 11pm and with some gentle persuading managed a 7am rise, all well till 9am then came down stairs to find him with coat on ready to go shopping,(nothing required) suggested a coffee and we tried the coloring books bought for him at xmas .....after saying to him lots just try another 5 mins at least 6 times he put down the crayons and said in a loud voice .this is so boring !
So we went shopping .. this is where it gets funny he remembered that we were out of bacon and muffins ...and we were ..so not a wasted journey by car in heavy rain .
Back home and after lunch he was on the move again hardly ever sits still. ..so I suggested that we took a bus ride takes longer and he loves sitting on top deck giving me a running commentary on the changes he sees .
At least it had dried up and the sun was out . He was even up for going to a pub for a coffee ..thought it would be better than a cafe more men ...never know if someone might start a conversation.. anyway back home and tea done he is now laid out on sofa snoring lol.
We are in Yorkshire. Never heard about a Admiral nurse , I know what you means about feeling deserted. What worries me is the complexity of this process they are going through I mean how do I know what stage he is at . I cant figure this out .
How are you finding TP I have read lots of interesting articles. Hope your getting a calm weekend and manage to find a little u time .

I meant to ask and you may have told me, have you had a definite diagnosis of FTD? We were a good 10 months getting def diagnosis. Blood tests first. Then brain scan. Then 4 lots of psychological tests which were inconclusive so then a SPECT scan which diagnosed FTD

 

[lilypat]

I meant to ask and you may have told me, have you had a definite diagnosis of FTD? We were a good 10 months getting def diagnosis. Blood tests first. Then brain scan. Then 4 lots of psychological tests which were inconclusive so then a SPECT scan which diagnosed FTD

Hi
It all started with his attitude changing ,doing daft things when driving and parking forgetting to get the gkids from school ,etc etc the list is enless doc said depression but was also concerned enough to refer him to our local memory clinic who sent us for tests , then a ct scan then a mri scan .the consultant a neurologist said he had significantly advanced cerebral atrophy and marked right frontal and temporal lobe atrophy .
My hubby had mercury poisoning as a child also .
Do u think he may have been mis diagnosed?

 

[Jackimags]

Hi
It all started with his attitude changing ,doing daft things when driving and parking forgetting to get the gkids from school ,etc etc the list is enless doc said depression but was also concerned enough to refer him to our local memory clinic who sent us for tests , then a ct scan then a mri scan .the consultant a neurologist said he had significantly advanced cerebral atrophy and marked right frontal and temporal lobe atrophy .
My hubby had mercury poisoning as a child also .
Do u think he may have been mis diagnosed?

My hubby was treated for depression first but I knew it wasn’t. I kept saying to my son and daughter that something was wrong but they kept saying he was ok. But when you’ve lived with someone for 50 years you notice a difference. We went back to gp and that’s when she referred us to memory service. He appears to have behavioural/speech variant of FTD as he loses words and says odd sentences particularly in the evening when he is tired. From what you have said it sounds like your OH has FTD. Are you claiming Attendance Allowance? My hubby had to surrender his driving license which he has fond very hard but we now have a blue badge

 

[lilypat]

My hubby was treated for depression first but I knew it wasn’t. I kept saying to my son and daughter that something was wrong but they kept saying he was ok. But when you’ve lived with someone for 50 years you notice a difference. We went back to gp and that’s when she referred us to memory service. He appears to have behavioural/speech variant of FTD as he loses words and says odd sentences particularly in the evening when he is tired. From what you have said it sounds like your OH has FTD. Are you claiming Attendance Allowance? My hubby had to surrender his driving license which he has fond very hard but we now have a blue badge

Morning Jackimags hope this very wet Sunday morning finds you both ok
Up to now we have got not told or found out which type hubby has I saw that there was several,
Speech wise he is very quite , yet sometimes talks nonstop, he struggles to find words sometimes ,
Memory wise he can not remember what day it is seems to think a lot of time its Sunday, has no sense of time (hence the memory day time clock ) also loses stuff all time even after it was given to him 5 mins ago ,seems not to understand adverts on TV anymore
He has never been a big reader has always been a long hours manual worker ,he loves nature programmes and will settle to watch blue planet.
Socially when out he just sits not says a lot seems to struggle to follow conversation yet can join in when asked a direct question
Behaviour wise he needs prompting with clothes ie right order vest then shirt and right way round .coat on to go out coat off when in house (would sit with his hat on all day if not told about it ) ? Needs to be reminded to clean teeth and shave .
If he has a wallet will open and check contents over and over same with coins will count them over and over till he is distracted. Cant seem to sit still .twiddled with fingers or a tissue
Has no sense of empathy
also if you mention something that needs doing ie travel insurance he will not stop going on about it till it's done
I cant let him go to a public loo and say i will meet you in Such shop he would not remember - tried this last week good job I saw him set off down escalator !
He has no sense of direction
Sorry I never meant to go on but I feel at a loss some days as to where we are on this terrible journey
.no blue badge as he is able to walk quite well at moment. We do have a disabled bus pass - means his companion goes free ,the surrendering of hubby's driving licence still a very raw subject .
And yes we got attendance allowance.
Well here's hoping we each get a stress free day

 

[Grahamstown]

And yes we got attendance allowance.

Do you also get Council Tax rebate. If you have a diagnosis letter and a letter from Department of Social Services outlining your benefit then your local council should give the person a 25% rebate on his
/her share of the tax. I applied and the council backdated it to last November when he received his allowance. This is applied to this years Council Tax Bill.

 

[lilypat]

@Grahamstown
Thank you for your reply ,yes we got our letter from the council last week .it mentioned rebate but not what happened to it so thanks for clearing that part up.

 

[Jackimags]

Morning Jackimags hope this very wet Sunday morning finds you both ok
Up to now we have got not told or found out which type hubby has I saw that there was several,
Speech wise he is very quite , yet sometimes talks nonstop, he struggles to find words sometimes ,
Memory wise he can not remember what day it is seems to think a lot of time its Sunday, has no sense of time (hence the memory day time clock ) also loses stuff all time even after it was given to him 5 mins ago ,seems not to understand adverts on TV anymore
He has never been a big reader has always been a long hours manual worker ,he loves nature programmes and will settle to watch blue planet.
Socially when out he just sits not says a lot seems to struggle to follow conversation yet can join in when asked a direct question
Behaviour wise he needs prompting with clothes ie right order vest then shirt and right way round .coat on to go out coat off when in house (would sit with his hat on all day if not told about it ) ? Needs to be reminded to clean teeth and shave .
If he has a wallet will open and check contents over and over same with coins will count them over and over till he is distracted. Cant seem to sit still .twiddled with fingers or a tissue
Has no sense of empathy
also if you mention something that needs doing ie travel insurance he will not stop going on about it till it's done
I cant let him go to a public loo and say i will meet you in Such shop he would not remember - tried this last week good job I saw him set off down escalator !
He has no sense of direction
Sorry I never meant to go on but I feel at a loss some days as to where we are on this terrible journey
.no blue badge as he is able to walk quite well at moment. We do have a disabled bus pass - means his companion goes free ,the surrendering of hubby's driving licence still a very raw subject .
And yes we got attendance allowance.
Well here's hoping we each get a stress free day

You could be talking abou

Morning Jackimags hope this very wet Sunday morning finds you both ok
Up to now we have got not told or found out which type hubby has I saw that there was several,
Speech wise he is very quite , yet sometimes talks nonstop, he struggles to find words sometimes ,
Memory wise he can not remember what day it is seems to think a lot of time its Sunday, has no sense of time (hence the memory day time clock ) also loses stuff all time even after it was given to him 5 mins ago ,seems not to understand adverts on TV anymore
He has never been a big reader has always been a long hours manual worker ,he loves nature programmes and will settle to watch blue planet.
Socially when out he just sits not says a lot seems to struggle to follow conversation yet can join in when asked a direct question
Behaviour wise he needs prompting with clothes ie right order vest then shirt and right way round .coat on to go out coat off when in house (would sit with his hat on all day if not told about it ) ? Needs to be reminded to clean teeth and shave .
If he has a wallet will open and check contents over and over same with coins will count them over and over till he is distracted. Cant seem to sit still .twiddled with fingers or a tissue
Has no sense of empathy
also if you mention something that needs doing ie travel insurance he will not stop going on about it till it's done
I cant let him go to a public loo and say i will meet you in Such shop he would not remember - tried this last week good job I saw him set off down escalator !
He has no sense of direction
Sorry I never meant to go on but I feel at a loss some days as to where we are on this terrible journey
.no blue badge as he is able to walk quite well at moment. We do have a disabled bus pass - means his companion goes free ,the surrendering of hubby's driving licence still a very raw subject .
And yes we got attendance allowance.
Well here's hoping we each get a stress free day

@Grahamstown
Thank you for your reply ,yes we got our letter from the council last week .it mentioned rebate but not what happened to it so thanks for clearing that part up.

@Grahamstown
Thank you for your reply ,yes we got our letter from the council last week .it mentioned rebate but not what happened to it so thanks for clearing that part up.

hi lily pat. You could be talking about my hubby on all counts in your post. Even down to the fact that he thinks every day is Sunday!! I applied for a blue badge and got rejected because he could walk 100 metres without a walking stick. I phoned Age UK and they came to the house and filled in an application for me and within 3hrs we were approved for a blue badge. The Admiral nurse told us that everyone with dementia is entitled to one. I also got a radar key so we can use disabled loos. They can be applied for on line £4.50. We all need all the help we can get!!!Do you live anywhere near Meadowhall? Have a good day. Love Margaret

 

[lilypat]

@Jackimags
It's hearting to know that that there are others in the same position as I.
What stage would you describe your OH is at ,I hate to ask ,but as you say we need to help each other. I will have to ask at our surgery about Admiral nurses ,but its a very small village surgery .We had a very nice lady from age UK do our attendance allowance form,thank goodness. We have the key it's been a life saver .
Sorry no we don't we live near Meadowhall .

 

[Jackimags]

I think we’re in the third year. I started noticing subtle changes a couple of years ago.

 

[Wifenotcarer]

You could be talking aboupost. Even down to the fact that he thinks every day is Sunday!! I applied for a blue badge and got rejected because he could walk 100 metres without a walking stick. I phoned Age UK and they came to the house and filled in an application for me and within 3hrs we were approved for a blue badge. The Admiral nurse told us that everyone with dementia is entitled to one. I also got a radar key so we can use disabled loos. They can be applied for on line £4.50. We all need all the help we can get!!!Do you live anywhere near Meadowhall? Have a good day. Love Margaret

 

[Wifenotcarer]

We got a blue badge (it took 6 months of toing and froing)by applying on the amended form for those with a mental disability rather than mobility issues. We applied after an incident at the supermarket when OH left the store, complaining that a flickering strip light was making him feel peculiar. As I was half way through the checkout I could not follow immediately and when I did get out I could not find him. Eventually found him in another part of the huge car park, trying to open cars with his house keys.

 

[Jackimags]

Not a bad day all things considered. A few “strange” conversations and ime learning to appreciate the rare good days-they help me cope with bad ones. I’ve just looked outside and it’s SNOWING!!!

 

[lilypat]

@Jackimags.
As weekends go very quite in this household .apart from never ending counting of £1 coins .
And him spending 15 mins looking for glasses ...sat atop of his head ...
Monday's mean work for me and for him a visit from a old work colleague.

 

[Lady M]

Morning Jackimags hope this very wet Sunday morning finds you both ok
Up to now we have got not told or found out which type hubby has I saw that there was several,
Speech wise he is very quite , yet sometimes talks nonstop, he struggles to find words sometimes ,
Memory wise he can not remember what day it is seems to think a lot of time its Sunday, has no sense of time (hence the memory day time clock ) also loses stuff all time even after it was given to him 5 mins ago ,seems not to understand adverts on TV anymore
He has never been a big reader has always been a long hours manual worker ,he loves nature programmes and will settle to watch blue planet.
Socially when out he just sits not says a lot seems to struggle to follow conversation yet can join in when asked a direct question
Behaviour wise he needs prompting with clothes ie right order vest then shirt and right way round .coat on to go out coat off when in house (would sit with his hat on all day if not told about it ) ? Needs to be reminded to clean teeth and shave .
If he has a wallet will open and check contents over and over same with coins will count them over and over till he is distracted. Cant seem to sit still .twiddled with fingers or a tissue
Has no sense of empathy
also if you mention something that needs doing ie travel insurance he will not stop going on about it till it's done
I cant let him go to a public loo and say i will meet you in Such shop he would not remember - tried this last week good job I saw him set off down escalator !
He has no sense of direction
Sorry I never meant to go on but I feel at a loss some days as to where we are on this terrible journey
.no blue badge as he is able to walk quite well at moment. We do have a disabled bus pass - means his companion goes free ,the surrendering of hubby's driving licence still a very raw subject .
And yes we got attendance allowance.
Well here's hoping we each get a stress free day

Hi lilpat,
Just catching up on TO, OH YES, I empathise! It sounds like mirror imagine of OH!
Unfortunately OH is now immobile( stroke made everything worse) but all the symptoms are OH to a tea.
We are almost three years down the line of diagnosis ....... following EEGs , Brian MRI, memory tests, seen by neurologist here we are "..........
First it was MCI then suspected Lewy Bodies Dementia now following the stroke and my insistence at more memory tests told by memory nurse still awaiting appointment for confirmation. It is Mixed Dementia Vascular/Alzheimer’s.....I heard learn that it’s a case of keeping on, keeping on, and keeping on more...
Wishing you well and you will , as I have, find so much empathy, support and informTion here on TP.
Wishing you a peaceful day. Regards Lady M

 

[Jackimags]

@Jackimags.
As weekends go very quite in this household .apart from never ending counting of £1 coins .
And him spending 15 mins looking for glasses ...sat atop of his head ...
Monday's mean work for me and for him a visit from a old work colleague.

@Jackimags.
As weekends go very quite in this household .apart from never ending counting of £1 coins .
And him spending 15 mins looking for glasses ...sat atop of his head ...
Monday's mean work for me and for him a visit from a old work colleague.

Hi
How’s your day been? The speech therapist has been again today. Asked if we would be interested in taking part in a research project at Sheffield university and is going to get me some details. I know it won’t help us but anything that will help future generations can’t be a bad thing. A carer/sitter comes for 3 hrs in the morning so I can get out. Hope you have a peaceful night

 

[lilypat]

Hi all ok here apart from nearly losing OH in town turned my back for 5mins looking in a shop window and he decided to head off down nearby escalator. I had let him go to the gents on own as he insisted rather than the disabled one. he walked right passed me .lesson learned

 

[Jackimags]

Hi all ok here apart from nearly losing OH in town turned my back for 5mins looking in a shop window and he decided to head off down nearby escalator. I had let him go to the gents on own as he insisted rather than the disabled one. he walked right passed me .lesson learned

Scary!!we went into M&S yesterday and I stopped to look at something and he’d gone. It’s. the simple things like that make shopping a nightmare. Can you leave your OH at home on his own? I can’t now as he would go looking for me. He takes our little cocker spaniel out for a walk on his own every day and no problem/ so far! I did get him a Doro mobile which incorporates a tracker so I can always get a map reference exactly where he is. We always have to be one step ahead don’t we. Have a good day

 

[Jackimags]

Hi all ok here apart from nearly losing OH in town turned my back for 5mins looking in a shop window and he decided to head off down nearby escalator. I had let him go to the gents on own as he insisted rather than the disabled one. he walked right passed me .lesson learned

I meant to ask you this morning. Does your OH ever have tears? If my OH gets up a bit more muddled than usual he sheds a few tears. I was told it’s because emotions are controlled by the frontal lobe

 

[lilypat]

Scary!!we went into M&S yesterday and I stopped to look at something and he’d gone. It’s. the simple things like that make shopping a nightmare. Can you leave your OH at home on his own? I can’t now as he would go looking for me. He takes our little cocker spaniel out for a walk on his own every day and no problem/ so far! I did get him a Doro mobile which incorporates a tracker so I can always get a map reference exactly where he is. We always have to be one step ahead don’t we. Have a good day

Hi yes at the moment I'm ok with him at home alone I am only gone 5 hours and in fact only work about 5mins from home.mondays a friend calls in the morning. Tuesday he has a small group to go to in the village hall (it's just near where I work ) I have to pop down and get him set off to it , work are brilliant about it .
He seems to be ok at the moment but I know the day will come when I will have to sort something out.

 

[lilypat]

I meant to ask you this morning. Does your OH ever have tears? If my OH gets up a bit more muddled than usual he sheds a few tears. I was told it’s because emotions are controlled by the frontal lobe

Hi No tears at the moment. He seems to have a none expression face .it takes a lot to get him to laugh ...usually a very old daft movie .we can sit for hours with no conversation...not like before ...we where the couple sat in pub nattering away about everything .