Fronto-temporal dementia

[Jackimags]

My 71 year old husband was diagnosed with Fronto-temporal dementia last year after many months of various tests and scans. As this type of dementia is untreatable we have been discharged by the consultant and by the memory service as, basically, there is no treatment available. Fortunately the GP practice we belong to has an Admiral nurse who we see about every 3 to 4 months. We go to various memory cafes, which is lovely, but I never get to speak to other carers dealing with FTD as most of the people there have Alzheimers or vascular dementia and the symptoms are very different. I have enquired about support groups for FTD and the nearest to South Yorkshire is Manchester!! It would be great if there is someone on the Forum who is a carer for FTD loved one.

 

[canary]

Hello @Jackimags and welcome to Talking Point.
There are several members here who are caring for someone with FTD and there are also a few members who have FTD themselves. My OH does not yet have a diagnosis, but has many symptoms of FTD.

Do have a look around - many of the problems that you will encounter are not limited to FTD alone - there is a lot of overlap, so people caring for other sorts of dementia can give valuable advice too. BTW, although there is no treatment for FTD as such, you can get medication for various symptoms such as anxiety, or aggression, so if you have these sort of behaviours dont feel that nothing can be done to help.

 

[karaokePete]

Hello @Jackimags you are welcome here and I hope you find the forum to be a friendly and supportive place.

Here's a link to a past thread about FTD, which may interest you and also contains links to other relevant threads etc. https://forum.alzheimers.org.uk/threads/frontotemporal-dementia-anyone-else-dealing-with-it.110795/

Apart from that, I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information and then found the AS Publications list, which is very informative on all aspects of the various types of dementia and dementia care. If you are interested in this, clicking the following link will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list


You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't been done already.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[lilypat]

Hi Jackimags
I too only have just joined talking point .your post was as if I had wrote it .my husband is 70 and we got our diagnosis just before Christmas, after a year of tests ,,,,although I had been seeing changes for about 2 years but put it down to retirement and been lonely. we too have been discharged by the consultant and by the memory service how have you found explaining it to friends ? When I say ftd everyone looks at me with a blank look .I have started saying he is like a 5 year old that needs guiding through the day . Where we live there is very limited things for us to attend and the ones that are on are when I am at work .

 

[Jackimags]

Hi Jackimags
I too only have just joined talking point .your post was as if I had wrote it .my husband is 70 and we got our diagnosis just before Christmas, after a year of tests ,,,,although I had been seeing changes for about 2 years but put it down to retirement and been lonely. we too have been discharged by the consultant and by the memory service how have you found explaining it to friends ? When I say ftd everyone looks at me with a blank look .I have started saying he is like a 5 year old that needs guiding through the day . Where we live there is very limited things for us to attend and the ones that are on are when I am at work .

I feel that I have become 'a parent' again and although we have been married for nearly 50 years it is like living with someone that, at times, I don't know. I have to admit that friends and family have been brilliant and we have made new friends at one of the memory cafes we go to. There are very odd times when you would not know there was a problem but at other times it is awful. He seems to be suffering from sundowning so the evenings tend to be the worst - but not every night. Probably 5 out of 7 nights. Everyone tends to assume that dementia always means Alzheimers..

 

[Jackimags]

Hi Jackimags
I too only have just joined talking point .your post was as if I had wrote it .my husband is 70 and we got our diagnosis just before Christmas, after a year of tests ,,,,although I had been seeing changes for about 2 years but put it down to retirement and been lonely. we too have been discharged by the consultant and by the memory service how have you found explaining it to friends ? When I say ftd everyone looks at me with a blank look .I have started saying he is like a 5 year old that needs guiding through the day . Where we live there is very limited things for us to attend and the ones that are on are when I am at work .

Hi Lilypat
Well the end of another trying day. I try to take a day at a time with each day different with new challenges. A few weeks ago I was feeling very down and on a routine visit to GP ended up in tears. Against my better judgement she prescribed an anti-depressant and I feel so much more able to cope. Much less tearful and sleeping better.

 

[lilypat]

I feel that I have become 'a parent' again and although we have been married for nearly 50 years it is like living with someone that, at times, I don't know. I have to admit that friends and family have been brilliant and we have made new friends at one of the memory cafes we go to. There are very odd times when you would not know there was a problem but at other times it is awful. He seems to be suffering from sundowning so the evenings tend to be the worst - but not every night. Probably 5 out of 7 nights. Everyone tends to assume that dementia always means Alzheimers..

Hi Jackimags
Your so right in the becoming a
Parent bit ..it's all put your shoes on ,take your coat off etc etc .
It's the lack of empathy that's hard after 30 years of joint laughter and doing things together he just sits and just looks at the tv not me when I cry ...with no questions..
I shouted at him the other day can't think why now but no reply or even a hurt look on his face it seemed to just fly over his head .
Why did he seem to act normal when we have a friend down for coffee (total time of 1 hour) then act totally different for the rest of the day ,,,,so said friend later phones and says he seemed ok to him !!
Are you sure he is ill .?

 

[lilypat]

Hi Lilypat
Well the end of another trying day. I try to take a day at a time with each day different with new challenges. A few weeks ago I was feeling very down and on a routine visit to GP ended up in tears. Against my better judgement she prescribed an anti-depressant and I feel so much more able to cope. Much less tearful and sleeping better.

Hi I am sure that your trip to the doctor was meant to be .I know a few people who are taking anti depressants. We all need help now and again .glad your feeling more able to cope .Are you a full time carer ? I am lucky I get to work 5 hours a day so have some ' time off "
But not sure how long for .keep smiling hard I know but I practice in front of a mirror .makes me laugh everyone

 

[Jackimags]

Hi I am sure that your trip to the doctor was meant to be .I know a few people who are taking anti depressants. We all need help now and again .glad your feeling more able to cope .Are you a full time carer ? I am lucky I get to work 5 hours a day so have some ' time off "
But not sure how long for .keep smiling hard I know but I practice in front of a mirror .makes me laugh everyone

Hi
Our daughter has started to come every Wednesday straight from work to have tea with us. For 2 hrs my OH was chatty etc. A few odd sentences but otherwise ok. As she left about 7pm a different person emerged- agitated, cross, argumentative. There are times during the day particularly when other people are there you wouldn’t know there was a problem at all. I too find the lack of empathy, sympathy and conversation so hard. I am a full time carer and can’t leave him in the house alone as he would come looking for me. Let’s see what today brings!

 

[canary]

Our daughter has started to come every Wednesday straight from work to have tea with us. For 2 hrs my OH was chatty etc. A few odd sentences but otherwise ok. As she left about 7pm a different person emerged- agitated, cross, argumentative.

I hope you dont mind me butting in, but I thought I would mention a phenomenon well known on here, which doesnt have a medical name, but we call being in "host/hostess mode" Its a really annoying phenomenon where the person with dementia can sort of pull themself together and seem almost normal in front of medical people and when someone comes to visit. They doent seem to do it purposely (it seems to be a subconscious survival instinct), but it takes a lot of effort and they can only maintain it for short periods of time, so they end up more confused and grumpy afterwards.
So the end result is as you have seen - someone comes to visit, they go into "host mode", the person visiting thinks they are fine and you are exaggerating and you are left with dealing with the aftermath and wonder why they cant do it for you
Its very irritating.

 

[lilypat]

I hope you dont mind me butting in, but I thought I would mention a phenomenon well known on here, which doesnt have a medical name, but we call being in "host/hostess mode" Its a really annoying phenomenon where the person with dementia can sort of pull themself together and seem almost normal in front of medical people and when someone comes to visit. They doent seem to do it purposely (it seems to be a subconscious survival instinct), but it takes a lot of effort and they can only maintain it for short periods of time, so they end up more confused and grumpy afterwards.
So the end result is as you have seen - someone comes to visit, they go into "host mode", the person visiting thinks they are fine and you are exaggerating and you are left with dealing with the aftermath and wonder why they cant do it for you
Its very irritating.

Hi Canary
What you have wrote is spot on for my OH ,after visitors have gone he also seems very tired ,

 

[canary]

Yes, @lilypat . Unless you have seen it yourself it seems unbelievable. OH goes for tests and passes them straight off, then comes home and then hes up that night washing his hair at 2.00am (sigh)

 

[Jackimags]

Think it’s going to be a long night. Can’t convince OH that we are not going out tonight. Shoes on, shoes off, coat on, coat off. Only joined the forum yesterday but learnt so much from other people dealing with FTD. THANK YOU

 

[lilypat]

Yes, @lilypat . Unless you have seen it yourself it

Think it’s going to be a long night. Can’t convince OH that we are not going out tonight. Shoes on, shoes off, coat on, coat off. Only joined the forum yesterday but learnt so much from other people dealing with FTD. THANK YOU

Oh dear not good .We are dealing with a power cut of 3 hours now ! and it's driving him mad .I have been to bring him back downstairs twice keeps thinking its bed time . I know your probably on the ball but can you hide them i remove OH it seems out of site out of mind ? or distract him pop some music on or something .I have given OH some playing cards to sort (thank goodness for camping lamps ) thinking of you keep strong

 

[Jackimags]

Oh dear not good .We are dealing with a power cut of 3 hours now ! and it's driving him mad .I have been to bring him back downstairs twice keeps thinking its bed time . I know your probably on the ball but can you hide them i remove OH it seems out of site out of mind ? or distract him pop some music on or something .I have given OH some playing cards to sort (thank goodness for camping lamps ) thinking of you keep strong

Morning
Hope your electric is back on. That must have been a nightmare. OH wanted to get up and dressed at 12.30am and again at 5.30am so not at my brightest this morning. Just sat him down with some colouring but not sure how long that will last! Will be interesting to see how his mood changes when we have family round for coffee this morning. Hope you have a good day

 

[lilypat]

@Jackimags Hi we got the electricity back on at about 10pm so straight to bed for both of us . Sorry to hear about your disturbed night . .my OH thinks 4am is a good time every morning to get up lol.which is hard when I am at work . ..our day has been fairly quiet a short run out to grab some groceries. Then I managed to get the "whole " ironing done as he really got into a old film ,with only a few interruptions. . Just wish some family would call to break up the day ..well must not grumble .

Ps Hows your OH with clothes. ?

 

[Pouli]

@Jackimags Hi we got the electricity back on at about 10pm so straight to bed for both of us . Sorry to hear about your disturbed night . .my OH thinks 4am is a good time every morning to get up lol.which is hard when I am at work . ..our day has been fairly quiet a short run out to grab some groceries. Then I managed to get the "whole " ironing done as he really got into a old film ,with only a few interruptions. . Just wish some family would call to break up the day ..well must not grumble .

Ps Hows your OH with clothes. ?

Ironing? IRONING? Oh lilypat, are you sure you aren't Superwoman? I can't remember the last time I did any ironing, even for myself. My fashion statement these days is clean but crumpled. Best wishes.

 

[Jackimags]

@Jackimags Hi we got the electricity back on at about 10pm so straight to bed for both of us . Sorry to hear about your disturbed night . .my OH thinks 4am is a good time every morning to get up lol.which is hard when I am at work . ..our day has been fairly quiet a short run out to grab some groceries. Then I managed to get the "whole " ironing done as he really got into a old film ,with only a few interruptions. . Just wish some family would call to break up the day ..well must not grumble .

Ps Hows your OH with clothes. ?

Ironing? IRONING? Oh lilypat, are you sure you aren't Superwoman? I can't remember the last time I did any ironing, even for myself. My fashion statement these days is clean but crumpled. Best wishes.

@Jackimags Hi we got the electricity back on at about 10pm so straight to bed for both of us . Sorry to hear about your disturbed night . .my OH thinks 4am is a good time every morning to get up lol.which is hard when I am at work . ..our day has been fairly quiet a short run out to grab some groceries. Then I managed to get the "whole " ironing done as he really got into a old film ,with only a few interruptions. . Just wish some family would call to break up the day ..well must not grumble .

Ps Hows your OH with clothes. ?[/QUOTE
He has always been very particular about his clothes but I have to put his clothes out for the following day - or the same ones would go back on. Bit of a fetish with handkerchiefs- I had 25 in one wash this week - and socks!! He did wake up the other morning with 4 tea shirts on!!
Do you have family living locally?

 

[lilypat]

Ironing? IRONING? Oh lilypat, are you sure you aren't Superwoman? I can't remember the last time I did any ironing, even for myself. My fashion statement these days is clean but crumpled. Best wishes.

@Pouli superwoman I wish .then the house would be clean the fridge full the paperwork filed the garden tidy etc etc No I am afraid I cant claim that title .lol

 

[lilypat]

@Jackimags Thanks my OH is not at all bothered about his clothes , I too lay out his clothes and changed them as needed.
Yes my husbands family live locally .