Fronto-temporal dementia

[Jackimags]

Am I the only one who thinks what is the point of it all. Had an awful day. Knew from the time he woke up that my OH was in a bad place. Maybe it was the time change but he's been horrible all day. Lots of angry outbursts, shouting, hitting things & general upsetting behaviour. Ventured out to the super market where at least there were no outbursts & to the pub this evening for a quick drink but there's no pleasure in life. If we do go out he immediately wants to go home. I spend all time trying to makes things better for him but to no avail. I can never relax as I never know when the next outburst will come. What's the point, this is existing not living. It just seems so pointless. He's gone to bed but I can hear him pacing around, slamming drawers & doors. Now he's calling me to come to bed. I hate this life. Hopefully tomorrow will be better.

I hope tomorrow is better for you. My OH is always wanting to go out and when we do he says he’s ready for home. He keeps saying he wants to go on holiday- but not a chance it would be a nightmare. The worst thing is that we can see no end in sight. Every week is the same and I get to resent this dreadful disease. The only thing keeps me going is “talking” to people in a similar situation. Take care and big hug from me

 

[Jackimags]

Re-the garden centre Oh dear not good I have decided not to tell him any plans otherwise he is exactly the same .feel guilty about it but very less stressful .
Today ok I was determined to give the house a once over nothing to strenuous. But everytime I turned round he was there in the way ...I finally got him sat in conservatory with music on with the job of watching for blue tits etc ..
I noticed last night he was struggling to find the right words while we were out .and yesterday he was finding it hard to stand up off seats .and in and out of car too.
Our latest thing is keeping his trainers on all time .sending you a large hug as I think your patience will be sorely tested tonight

Morning lily pat. Didn’t think it would bother me but just sat and opened my birthday cards with OH sat at my side. Not a word from him about it being my birthday which I suppose was to be expected but still not easy after 49 years. Have to admit went in bathroom and shed a few tears. it’s just another day x

 

[Littlebear]

Morning lily pat. Didn’t think it would bother me but just sat and opened my birthday cards with OH sat at my side. Not a word from him about it being my birthday which I suppose was to be expected but still not easy after 49 years. Have to admit went in bathroom and shed a few tears. it’s just another day x

Happy Birthday Jackimags! Make sure you spoil yourself today. You should buy yourself a present (that's what I do) as I'm sure your OH would do so in different circumstances! Hope you have a nice day. Sending Birthday hugs

 

[shubb]

I hope tomorrow is better for you. My OH is always wanting to go out and when we do he says he’s ready for home. He keeps saying he wants to go on holiday- but not a chance it would be a nightmare. The worst thing is that we can see no end in sight. Every week is the same and I get to resent this dreadful disease. The only thing keeps me going is “talking” to people in a similar situation. Take care and big hug from me

This is such a sad post. My situation (with my Mum) is not this bad - maybe it will be, maybe it won't? but I wanted to send you some support. You're doing an amazing thing, whether you have a choice or not. Some people have no-one. I hope that today brings a bit of calm somewhere.

 

[jugglingmum]

Morning lily pat. Didn’t think it would bother me but just sat and opened my birthday cards with OH sat at my side. Not a word from him about it being my birthday which I suppose was to be expected but still not easy after 49 years. Have to admit went in bathroom and shed a few tears. it’s just another day x

Happy Birthday, I think Littlebear's suggestion of buying yourself a present is a good one if you can think of something suitable, be it chocs, a nice book, bath stuff, perfume, a nice dvd.

 

[Philbo]

Morning everyone.

If only having to cope with dementia (as a carer, or as a person with dementia) was just some form of April Fool's Day (perverse) joke? And that tomorrow, everything would go back to the way it used to be?

Our two sons visited yesterday to bring my wife (their mum) cards and flowers, though she seemed a bit bemused by it all. I think it all too easy to overlook the affect it has on our children, who have to watch their mum slowly disappearing. Chatting to the youngest, when we decamped to the pub later, he admitted he'd shed some tears when he wrote the Mother's Day card.

I do try hard to keep positive but despite being surrounded by caring family and friends, life can feel soooo lonely.

Big hugs to you all.
Phil

 

[Jackimags]

This is such a sad post. My situation (with my Mum) is not this bad - maybe it will be, maybe it won't? but I wanted to send you some support. You're doing an amazing thing, whether you have a choice or not. Some people have no-one. I hope that today brings a bit of calm somewhere.

Didn’t think it would bother me but just sat and opened my birthday cards with OH sat at my side. Not a word from him about it being my birthday which I suppose was to be expected but still not easy after 49 years. Have to admit went in bathroom and shed a few tears. it’s just another day x

 

[ppjm]

Hey @Jackimags & everyone else

My beautiful Mum was diagnosed with FTD 6 plus years ago (she has just turned 69 years young).

Mum has certainly been through the mill, so to speak, including being sectioned. She is now in a residential care home and is definitely in late stage now.

I am by no means an expert but please ask if you have any questions at all.

xx

 

[lilypat]

Hi Jackimags
Happy birthday sorry a bit late in the day .I know your feelings so well .I had the same feelings last year and no doubt will again this .
I used to be a very romantic person I loved the whole idea of been spoilt.
And OH used to step up and I was so happy .NOW it's like a shutter has come down .
I read some where a cry is a good thing it smooths the heart .?
Have you read my poem that I wrote about our wedding anniversary?
Thinking of you sending hugs x

 

[Jackimags]

Hi Jackimags
Happy birthday sorry a bit late in the day .I know your feelings so well .I had the same feelings last year and no doubt will again this .
I used to be a very romantic person I loved the whole idea of been spoilt.
And OH used to step up and I was so happy .NOW it's like a shutter has come down .
I read some where a cry is a good thing it smooths the heart .?
Have you read my poem that I wrote about our wedding anniversary?
Thinking of you sending hugs x

Could you send me the poem please. Sorry if you’ve already sent it. Thank you for the hugs. Needed today. Strangely Christmas didn’t upset me as much as anniversary and birthday has. But that’s it for another year x

 

[lilypat]

Here it is

 

[Jackimags]

Here it is View attachment 60689

Beautiful words - thank you x

 

[Ernest]

I'm sitting here feeling rather guilty after reading these posts. All of them I could have written. My OH, 72, has been living in CH since June. He was diagnosed with FTD last January. It's been a very long 12years getting to this point. I had learnt to live my life around him until then. He too was and still is, obsessed with time and routine. Drawing curtains at 4pm no matter what time of year, going out to pub same time no matter what I might be doing. To wait for even 15 minutes was impossible. I had to ring him at specific times on the days I was at work. If I didn't for some reason I'd have messages left asking if I was alright. Lovely but sometimes it might have not been my fault that I couldn't get through so all the time I'd be on edge in case I missed the time! We don't have any children and his only family is a brother who doesn't live close by. My family do live close and if I invited my brother, sister-in-law, sister for lunch, OH would take himself outside & sit in the garden after eating. He just cannot stand being anywhere noisy. He gets very cross & impatient. In the CH he stays in his room apart from meals. Occasionally he does refuse to to eat in the DRoom but I think that's because sometimes a particular resident can be noisy. He displays host mode exactly the same & sometimes can barely speak to me without being horrible. What I'm getting to is that although it's absolutely awful to think about him being there, I am not so tired and fed up with trying to keep him "sweet" so I'm able to cope better with all these OCD's. I still work part-time & I still work my life around him to a certain extent. He has a diary in which I write when I'm seeing him.. If I don't write it down he gets very anxious & if I'm late he'll be very wound up when I get there. He isn't able to accept why he's there but even though I hate the disease & myself for us getting to this point, I know it's for the best. He's such a lovely man really, which the carers see. The FTD man is the one I see!! His mobility is awful now but he tells me he's absolutely fine one minute then the next he's demanding me to help him as he's going to fall. There's absolutely no reasoning which I find the hardest to cope with. Just another symptom of FTD. Sorry for this long essay !!

 

[Jackimags]

Here it is View attachment 60689

Can’t believe the peaceful day we’ve had. No anger, arguments. Still lots of sentences that don’t make any sense at all but ime getting very good at coming back with a sentence diverting to another topic. I’ll be so glad when brexit is sorted as he’s getting quite fixated on it even tho he doesn’t understand it. He’s out tomorrow with the day care- probably out to Derbyshire so should be an unwinding day. Hope you’ve had a good day x

 

[lilypat]

Morning..so glad to hear about your calmness. All good here too ...apart from the Brexit! I am trying to shorten OH trousers he has got a bit of a belly now and they fasten below . in a space of 12 months. He has gone from very slim to looking 6 months pregnant!! All the over eating .But it's hard work grumbles when I need him to try them on .grumbles when I need a bright light on
But also moans when they are on the ground ....men !
Sun shining here at moment but chap on TV says snow ?
Have a good day

 

[Jackimags]

Morning..so glad to hear about your calmness. All good here too ...apart from the Brexit! I am trying to shorten OH trousers he has got a bit of a belly now and they fasten below . in a space of 12 months. He has gone from very slim to looking 6 months pregnant!! All the over eating .But it's hard work grumbles when I need him to try them on .grumbles when I need a bright light on
But also moans when they are on the ground ....men !
Sun shining here at moment but chap on TV says snow ?
Have a good day

Morning. Know what you mean about the belly. Hubby always been about a 34 waist but now up to 36. Would eat cake till it came out of his ears and can’t have a coffee without a biscuit. Often get asked about 8pm what are we having for tea!! We had tea at 6pm. Never used to eat chocolate but does now so stopped buying it. Apparently it’s very common with dementia and a doc on tele said it should be called diabetes type 3. I was thinking of dropping s sample into docs to have his blood sugar tested to be on the safe side. Don’t think I could cope with yet another problem!! Have a good day x

 

[lilypat]

Hello
Well cant believe it, a really good day. A quite morning with no texts from OH.
Once home he was very amiable to ho shopping .he went for the trolley and pushed it ! We strolled up and down each aisle with no moaning he was offering opinion on what we needed ..all peaceful until the till -he hates to use a manned one ? .then it was hard work had to remind him 3 times about stuff in trolley. I wonder why he does not realise that it's not empty ?
He even popped the trolley back .
Mind you I feel I talked the whole way around the supermarket
Tonight he is watching a nature programe and seems calm so j may get to read a while
Sending peaceful vibes your way

 

[Jackimags]

Hello
Well cant believe it, a really good day. A quite morning with no texts from OH.
Once home he was very amiable to ho shopping .he went for the trolley and pushed it ! We strolled up and down each aisle with no moaning he was offering opinion on what we needed ..all peaceful until the till -he hates to use a manned one ? .then it was hard work had to remind him 3 times about stuff in trolley. I wonder why he does not realise that it's not empty ?
He even popped the trolley back .
Mind you I feel I talked the whole way around the supermarket
Tonight he is watching a nature programe and seems calm so j may get to read a while
Sending peaceful vibes your way

Think the peaceful vibes have arrived! Two not bad days in a row helps build up strength for the not so good days. Do you have good nights sleep? Hope so

 

[lilypat]

Hi yes at the moment we seem to get 10pm till about 4 or 5am .on a good night and on a bad night up nearly every hour ..but on them nights luckily he goes straight back to sleep ...ME I reach for my kindle.
This calmness is eerie I an sort of on edge wondering what's coming.
I have started a diary again I feel it helps jotting down things he does or as you know things they stop doing etc
Well OH is now pacing ready for bed so time to follow .night

 

[Jackimags]

Hi yes at the moment we seem to get 10pm till about 4 or 5am .on a good night and on a bad night up nearly every hour ..but on them nights luckily he goes straight back to sleep ...ME I reach for my kindle.
This calmness is eerie I an sort of on edge wondering what's coming.
I have started a diary again I feel it helps jotting down things he does or as you know things they stop doing etc
Well OH is now pacing ready for bed so time to follow .night

What would we do without our kindles!!