Fronto-temporal dementia

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
I do hope you have a good break @lilypat well done indeed. I have chickened out and our daughter and family are coming over for lunch here, we go for pizzas round the corner. It is a big relief because I won’t have to worry about getting him up etc. and driving over and back. He asked me today where he was sleeping so obviously very confused and can barely function, can’t find anything in the kitchen which is small and compact but feels perfectly fine and leading a normal life!
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
My husband also has FTD - non fluent primary aphasia which means he has great difficult speaking & swallowing - only bandages soft food now. He also has violent moods, normally when he is tired because he's done too much. He was misdiagnosed with Alzheimer's & it took 5 years to get the correct diagnosis. I knew it wasn't Alzheimer's as his level of understanding was so good but no one wanted to listen. We only got a correct diagnosis when he was being screened for a trial.

I can relate to so much of what has been written here. I get no help and no break. He can't cope with me being out of his sight & follows me everywhere. He refuses to go to any daycare, memory cafes etc as they are full of 'crazy people'.

Sorry to bore you with all that not the reason for my post at all! I guess just background information. We've just been on holiday with friends but we had to come back early as he couldn't settle. It was horrendous - at one point I thought he was going to hit one of them he was so angry. He managed to break a salt cellar slamming it down in the table in a restaurant. Anyway I couldn't cope & didn't want to ruin everyone's holiday so we came home.

Whilst we were away my sister & husband moved in as I also look after my very elderly (98) father. I asked them to stay on a few days hoping for some support. We got back this afternoon absolutely exhausted after a very difficult, tense & draining journey, hoping for some TLC & a cooked meal but they've decided to go out for a meal so I'm left cooking our supper & putting dad to bed - after travelling for over 24 hours with very little sleep & an extremely agitated husband. They've also said they are going out all day tomorrow & to the theatre on Sunday night. So much for support!

It actually makes me feel even more alone than ever. I haven't said anything as I don't want to fall out but I feel so upset. Am I wrong in feeling like that, they were due to look after dad for two weeks & we've barely been away for one. I can't also help but feel envious of their freedom to do all the things that I thought we would be doing at this time of our lives. I never for a moment thought our lives would be like this. I feel permanently tearfully & yet find it hard to feel any emotion at all. It's like I'm dead inside.

Sorry to go on. I just needed to tell someone how I feel.
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
My husband also has FTD - non fluent primary aphasia which means he has great difficult speaking & swallowing - only bandages soft food now. He also has violent moods, normally when he is tired because he's done too much. He was misdiagnosed with Alzheimer's & it took 5 years to get the correct diagnosis. I knew it wasn't Alzheimer's as his level of understanding was so good but no one wanted to listen. We only got a correct diagnosis when he was being screened for a trial.

I can relate to so much of what has been written here. I get no help and no break. He can't cope with me being out of his sight & follows me everywhere. He refuses to go to any daycare, memory cafes etc as they are full of 'crazy people'.

Sorry to bore you with all that not the reason for my post at all! I guess just background information. We've just been on holiday with friends but we had to come back early as he couldn't settle. It was horrendous - at one point I thought he was going to hit one of them he was so angry. He managed to break a salt cellar slamming it down in the table in a restaurant. Anyway I couldn't cope & didn't want to ruin everyone's holiday so we came home.

Whilst we were away my sister & husband moved in as I also look after my very elderly (98) father. I asked them to stay on a few days hoping for some support. We got back this afternoon absolutely exhausted after a very difficult, tense & draining journey, hoping for some TLC & a cooked meal but they've decided to go out for a meal so I'm left cooking our supper & putting dad to bed - after travelling for over 24 hours with very little sleep & an extremely agitated husband. They've also said they are going out all day tomorrow & to the theatre on Sunday night. So much for support!

It actually makes me feel even more alone than ever. I haven't said anything as I don't want to fall out but I feel so upset. Am I wrong in feeling like that, they were due to look after dad for two weeks & we've barely been away for one. I can't also help but feel envious of their freedom to do all the things that I thought we would be doing at this time of our lives. I never for a moment thought our lives would be like this. I feel permanently tearfully & yet find it hard to feel any emotion at all. It's like I'm dead inside.

Sorry to go on. I just needed to tell someone how I feel.
I feel so sorry for you. You really need some support. It’s one thing looking after your father but it’s another caring for your OH with FTD. People vary so much with symptoms. I feel very fortunate that I have support from family and friends. Can you not get some carer support from somewhere? I have a sitter for 3 hrs one day a week and daycare one day a week. Gives me time to recharge the batteries! You need to look after yourself or you’ll be no good to anybody. Do you not have access to an Admiral nurse? Like you, holidays are a thing of the past. He just doesn’t settle. I do feel very envious when friends talk about their hols. I have had to take on all the driving as hubby had to surrender his licence and prefer to just drive locally. I think our holiday will be sitting in the back garden. Do try to get some help. Take care
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
Thank you. I know I need help but I don't know how I can get my husband to accept it. I can leave him for a short time on his own, he's quite safe but when I come back he's so angry & agitated that it's just not worth it & he won't entertain the idea of carers, Day Centers or the like. Can't even understand why I suggest it. Very occasionally he will go to a friend's house to watch rugby with him. Last time he did that I did more work in an afternoon than I'd done the previous week, it was such a relief. I took him to the doctor just before we went away because his agitation was so bad but other than want to hand out pills to calm him he did nothing. I'm thinking of asking the doc for a referral for me to see a counsellor to see if that helps. I know I can't go on like this, especially with no holidays to recharge the batteries!

Does your OH still follow most of what's going on? Today mine asked me what the loo was for (first time but like me he's exhausted) & struggles with so many things, like showering, but he still understands what's going on around him & has the most amazing powers of observation. Such a strange disease.
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Thank you. I know I need help but I don't know how I can get my husband to accept it. I can leave him for a short time on his own, he's quite safe but when I come back he's so angry & agitated that it's just not worth it & he won't entertain the idea of carers, Day Centers or the like. Can't even understand why I suggest it. Very occasionally he will go to a friend's house to watch rugby with him. Last time he did that I did more work in an afternoon than I'd done the previous week, it was such a relief. I took him to the doctor just before we went away because his agitation was so bad but other than want to hand out pills to calm him he did nothing. I'm thinking of asking the doc for a referral for me to see a counsellor to see if that helps. I know I can't go on like this, especially with no holidays to recharge the batteries!

Does your OH still follow most of what's going on? Today mine asked me what the loo was for (first time but like me he's exhausted) & struggles with so many things, like showering, but he still understands what's going on around him & has the most amazing powers of observation. Such a strange disease.
There is less support out there for FTD than other forms of dementia because it is so rare and the symptoms are so different to Alzheimer’s tho there is some overlap ime sure. I can’t leave my hubby alone in the house because he would try to find me. He can however take our little spaniel out for a walk because he knows I am at home. I bought him a mobile with a tracker on tho he’s not aware there is a tracker on it. There could always be a first time he gets lost. Thank goodness that my hubby accepts care. I got really down and very tearful all the time and my gp suggested an anti-depressive. I wasn’t keen but she assured me they were not addictive and I have felt SO MUCH BETTER and able to cope. Try and find out if your area has an Admiral nurse to give you some advice/support. Because there is no treatment for FTD we have been discharged by the consultant and the memory service so would feel deserted if it wasn’t for the AN who sees us every 3 months. I also find this forum very helpful. I really understand how you feel and would love to give you a hug. How old is your hubby? Take care x
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
There is less support out there for FTD than other forms of dementia because it is so rare and the symptoms are so different to Alzheimer’s tho there is some overlap ime sure. I can’t leave my hubby alone in the house because he would try to find me. He can however take our little spaniel out for a walk because he knows I am at home. I bought him a mobile with a tracker on tho he’s not aware there is a tracker on it. There could always be a first time he gets lost. Thank goodness that my hubby accepts care. I got really down and very tearful all the time and my gp suggested an anti-depressive. I wasn’t keen but she assured me they were not addictive and I have felt SO MUCH BETTER and able to cope. Try and find out if your area has an Admiral nurse to give you some advice/support. Because there is no treatment for FTD we have been discharged by the consultant and the memory service so would feel deserted if it wasn’t for the AN who sees us every 3 months. I also find this forum very helpful. I really understand how you feel and would love to give you a hug. How old is your hubby? Take care x
I have found a number and web address to find out where your local Admiral nurse is. 08008886678 or email direct@dementiauk. .Org. Hope it helps x
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
I went on a dementia course run by Alzheimer’s society and someone read the following poem which helped me understand better:
Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
A very sad & moving poem. Thank you. I do try & understand what my husband is feeling but it's hard to imagine what is going on inside his head. My husband is soon to be 69, he was diagnosed with dementia at 63 though I had seen changes for several years before that but I'd put it down to stress. He was King, gentle, a highly intelligent professional, great fun to be with & very adventurous. In his youth he was a very successful sportsman - rugby, cricket, swimming & an excellent skier. We married relatively late in life, the first time for both of us and sadly had no children but will built a wonderful life together. Never in my wildest dreams did I think my life would ever be like this. I thought we would be travelling the world seeking new adventures.

I know I'm depressed, I'm permanently on the verge of tears & have shut off my emotions as its the only way I can cope. I do plan to go to the doctor next week but I'm hoping for counselling rather than pills, at least initially. The only problem is how can I go without my OH coming with me. I will ask about an Admiral Nurse.

Thank you so much for your advice & for listening, it helps so much. It's my birthday today so I plan on having a large drink tonight! Xxx
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
A very sad & moving poem. Thank you. I do try & understand what my husband is feeling but it's hard to imagine what is going on inside his head. My husband is soon to be 69, he was diagnosed with dementia at 63 though I had seen changes for several years before that but I'd put it down to stress. He was King, gentle, a highly intelligent professional, great fun to be with & very adventurous. In his youth he was a very successful sportsman - rugby, cricket, swimming & an excellent skier. We married relatively late in life, the first time for both of us and sadly had no children but will built a wonderful life together. Never in my wildest dreams did I think my life would ever be like this. I thought we would be travelling the world seeking new adventures.

I know I'm depressed, I'm permanently on the verge of tears & have shut off my emotions as its the only way I can cope. I do plan to go to the doctor next week but I'm hoping for counselling rather than pills, at least initially. The only problem is how can I go without my OH coming with me. I will ask about an Admiral Nurse.

Thank you so much for your advice & for listening, it helps so much. It's my birthday today so I plan on having a large drink tonight! Xxx
Happy Birthday. Sometimes I feel so angry that our normal living has been curtailed and there seems no light at the end of the tunnel. Every day is the same, some worse, some slightly better. Luckily our gp has 7am appts so I can leave hubby asleep in bed but that’s the only time I can leave him. I was going to go down the counselling route but would have been impossible having to take him with me. Hope you get something sorted. Enjoy your drink. We’ve just had a g& t!
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
Happy Birthday. Sometimes I feel so angry that our normal living has been curtailed and there seems no light at the end of the tunnel. Every day is the same, some worse, some slightly better. Luckily our gp has 7am appts so I can leave hubby asleep in bed but that’s the only time I can leave him. I was going to go down the counselling route but would have been impossible having to take him with me. Hope you get something sorted. Enjoy your drink. We’ve just had a g& t!


Thank you. I'm just enjoying one! We seem to be experiencing very similar things & not just the G&T. How old is your husband & what form of FTD does he have?
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Thank you. I'm just enjoying one! We seem to be experiencing very similar things & not just the G&T. How old is your husband & what form of FTD does he have?
Speech and behaviour. His speech in the morning is not too bad but the more tired he gets we have some very strange obscure sentences, some part sentences and at bedtime we have a total loss of words. We were referred to speech therapy and advised lots of flash cards. Logic seems a big problem and timing is a big issue so don’t tell him about anywhere we need to be till 10 mins before. Some days he could make a cup of tea but Usually he can’t. He was diagnosed at 71 but think we’re probably in the third year.
 

hatto22

Registered User
Aug 24, 2018
11
0
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.
Hi Jackimags, my mum has FTD aka Picks disease. She got really bad last year and I found out about a medication called Memantine. It's been really good for her. My mum was very bad at the time and it doesn't sound like your husband needs anything like that presently. However for the future it's worth noting. It doesn't work for everyone so I've been told but it has been very successful for my mum.
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Hi @Jackimags @Grahamstown
Thought I would share how we are coping been away from home .
1st night went well even if we slept with a bright hall light on and door wide open ! Thought it was better than a accident in the night as every door and room was a total mix around than at home ..
Never gave that a thought :rolleyes: when booking a cottage .I mean who looks at a room plan
Today very calm got to see the family and spend quality time with them .and the best thing was seeing the 2 young grandsons playing with OH .He got restless at about teatime asking if we were going home or sleeping another night so we retired back to our cottage and with some easy watching tv and a quite teatime we are all calm down ..so much he is a sleep. Lol.
It's been great been able to catch up with your posts tonight hi and cheers to @Littlebear too .I know how your feeling i am glad you found us .
So up to now a very successful trip just the run home in the morning to do hopefully the weather will 'be calm for this novice driver .
Well a little drink is in order I think and maybe a go at the crossword ..Oh this high life I lead lol :)
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
Hi @Jackimags @Grahamstown
Thought I would share how we are coping been away from home .
1st night went well even if we slept with a bright hall light on and door wide open ! Thought it was better than a accident in the night as every door and room was a total mix around than at home ..
Never gave that a thought :rolleyes: when booking a cottage .I mean who looks at a room plan
Today very calm got to see the family and spend quality time with them .and the best thing was seeing the 2 young grandsons playing with OH .He got restless at about teatime asking if we were going home or sleeping another night so we retired back to our cottage and with some easy watching tv and a quite teatime we are all calm down ..so much he is a sleep. Lol.
It's been great been able to catch up with your posts tonight hi and cheers to @Littlebear too .I know how your feeling i am glad you found us .
So up to now a very successful trip just the run home in the morning to do hopefully the weather will 'be calm for this novice driver .
Well a little drink is in order I think and maybe a go at the crossword ..Oh this high life I lead lol :)

I'm pleased to hear your trip went well. Sounds like you both really enjoyed it. Enjoy your evening & have a safe trip home tomorrow. X
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Hi @Jackimags @Grahamstown
Thought I would share how we are coping been away from home .
1st night went well even if we slept with a bright hall light on and door wide open ! Thought it was better than a accident in the night as every door and room was a total mix around than at home ..
Never gave that a thought :rolleyes: when booking a cottage .I mean who looks at a room plan
Today very calm got to see the family and spend quality time with them .and the best thing was seeing the 2 young grandsons playing with OH .He got restless at about teatime asking if we were going home or sleeping another night so we retired back to our cottage and with some easy watching tv and a quite teatime we are all calm down ..so much he is a sleep. Lol.
It's been great been able to catch up with your posts tonight hi and cheers to @Littlebear too .I know how your feeling i am glad you found us .
So up to now a very successful trip just the run home in the morning to do hopefully the weather will 'be calm for this novice driver .
Well a little drink is in order I think and maybe a go at the crossword ..Oh this high life I lead lol :)
Sounds like a success. So glad you’ve had some quality time with your family. Have a safe journey home x
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Hi. How was your trip home. Sounds like it’s been a successful trip. Hope you managed to avoid the rain today.

Hi It was a good trip and I learned a bit about what to expect when we go abroad also gave me a few ideas on how to help us both .OH was wide awake by 4am managed to get him to lay back down till 6am then up and he was ready for home it's as if he needs that reassurance of his own chair etc .as we set off early hardly any traffic and once home managed to get washing done and out on the line a great day if a tad windy. How are you doing ?
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Hi It was a good trip and I learned a bit about what to expect when we go abroad also gave me a few ideas on how to help us both .OH was wide awake by 4am managed to get him to lay back down till 6am then up and he was ready for home it's as if he needs that reassurance of his own chair etc .as we set off early hardly any traffic and once home managed to get washing done and out on the line a great day if a tad windy. How are you doing ?
Had a remarkable day and evening yesterday. Had some confusing sentences but no agitation or sundowning. When do you go abroad? So pleased it all went well for you this weekend. Take care
 

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