Fronto-temporal dementia

[lilypat]

@Jackimags hi hope that today was good to you ,its been another lovely day weather wise
,we took a drive to see our daughter that lives in York, I am so glad I did I got loads of adult conversation, while grandson entertained OH. Daughter said dad looked vacant a lot of the time we were there, I helped her in the garden a while and he just wandered about ... such a change from before ,when he was all hands on and we had to say take a rest ,
When we got our diagnosis it was as if i felt that i had to be with him at all times .
I have reached a stage now where if i want to sit outside i do if i want to sit in conservatory i do .
Back to work tomorrow and I I ,just know it's going to throw him out of kelter, he will not know the day etc
Well he is a sleep on sofa ,so I will make use of the peace while I do a quick clean up and sort out before I wake him and get him up to bed , let me know how your day has been and here's hoping alls well with you

 

[lilypat]

Hi lilypat. You describe exactly how I feel/felt ! I've been through all the temper tantrums, the not wanting to talk etc. My OH is now living in. CH. When he was here, if we had visitors he would often just leave us all and go out and sit in the garden! If I was talking to friends on the phone, sometimes he would shout at me telling me to stop talking. I've often wondered if it's a sort of jealousy in that he didn't want anyone else having my attention. I also think that sometimes it's because he just can't cope with noise. He'll watch TV without the sound and refuses point blank to have the radio on. In the CH he stays in his room most of the time. He still does the sorts of things he did here. He puts his dressing gown on, summer ,& winter at about 2pm. He draws the curtains 4pm whether or not it's dark !! I go to him every other day. Sometimes I'm there at 2pm when I'm not working, other days I go after work. I'm not one who would sit & watch day time TV but as we don't have any conversation it's that or sit in silence !! Like you, I have to watch everything I say. It's so hard not to, ask a question. If I do it'll just be "I don't know why are you asking me" or it'll be yes or no, end of !! I can't mention home or the garden as it starts him off asking why can't he come home. I'm learning ways to deal with things though. I don't disagree with what he says, I go along with it because he's forgotten in a few minutes. I tell "love lies" because it causes him less anxiety. I don't visit him on Tuesday or Thursday but he thinks I'm at work. Because he goes to bed at around 6pm and when I visit I stay until 6pm, I tell him I'm working until 6pm so it's too late to visit. So far he accepts this. If I told him was doing my own thing on those days he'd keep on about why I don't go and spend the day with him ! It's so horrible having to be so devious. I'm taking him out for lunch tomorrow. Same place, same meal, fish & chips, woe betide me if they're not on, & then back to watch the snooker. He seems ok with that as it's slow & quiet. I'm getting to quite enjoy it too. One thing I really miss is a hug. If I try to give him one he shouts at me for pushing him !! It's horrible. He is so lovely to all the carers & visitors when I'm not there. Sometimes they'll tell me & I begin to question if I've done the right thing & perhaps he's not as bad as I think. Then I think back to this time last year. In & out of A&E 4 times in a few months so ,yes, as hard as it is, it is for the best. Sorry to have gone on. I don't reply very often so I've let myself go on rather !!! Take care.

Hi I have been thinking about you today hope your ok ?

 

[Jackimags]

@Jackimags hi hope that today was good to you ,its been another lovely day weather wise
,we took a drive to see our daughter that lives in York, I am so glad I did I got loads of adult conversation, while grandson entertained OH. Daughter said dad looked vacant a lot of the time we were there, I helped her in the garden a while and he just wandered about ... such a change from before ,when he was all hands on and we had to say take a rest ,
When we got our diagnosis it was as if i felt that i had to be with him at all times .
I have reached a stage now where if i want to sit outside i do if i want to sit in conservatory i do .
Back to work tomorrow and I I ,just know it's going to throw him out of kelter, he will not know the day etc
Well he is a sleep on sofa ,so I will make use of the peace while I do a quick clean up and sort out before I wake him and get him up to bed , let me know how your day has been and here's hoping alls well with you

Not too bad a day today. Two days without too much anger. OH picked up at 10 this morning by daycare and had a trip out got back about 4. O’clock. I took our spaniel to groomer this morning, to daughter for coffee and after pickin pooch up came home and did NOTHING and did I feel guilty- not at all. OH definitely worse when tired. Couldn’t string a sentence together tonight. My sister brought him some watercolour pens and he loves them. I am finding that if I can see agitation setting in I suggest he sits and paints. You use them like felt tip pens but they contain watercolour with a very fine brush on the end. He has various colouring books. It works settling him. Tomorrow morning a friend picks him up about 9am while I volunteer at local hospice for a bit. Then it’s his balance class 11.30 for an hour. Any wonder we feel worn out!!! Hope your OH ok while you’re at work tomorrow. Have a peaceful night. Take care

 

[lilypat]

Morning Jackimags, fancy just sitting and doing nothing !!! Its great that you did ..we need that sometimes. I love to hear about the places your OH goes to .and the things he likes to do.those pens sound amazing.
If only mine would do 1 thing .we as you know have tried games colouring etc .it seems only his music and the TV are the things that interest him .
Work was ok ,no texts off OH but I think that was because he is slowly becoming more forgetful about it.
It was money last night worrying about if he had enough for the party (6th may) and no matter how many times I reassured him he kept on .
I have been up since 5am ...ironing done
The thing I find the worst at the moment is the apathy and the empathy .daughter did say it's as if he has forgotten how to laugh and smile .
Well here's to a new day keep smiling and I hope your both ok .

 

[Jackimags]

Morning Jackimags, fancy just sitting and doing nothing !!! Its great that you did ..we need that sometimes. I love to hear about the places your OH goes to .and the things he likes to do.those pens sound amazing.
If only mine would do 1 thing .we as you know have tried games colouring etc .it seems only his music and the TV are the things that interest him .
Work was ok ,no texts off OH but I think that was because he is slowly becoming more forgetful about it.
It was money last night worrying about if he had enough for the party (6th may) and no matter how many times I reassured him he kept on .
I have been up since 5am ...ironing done
The thing I find the worst at the moment is the apathy and the empathy .daughter did say it's as if he has forgotten how to laugh and smile .
Well here's to a new day keep smiling and I hope your both ok .

Evening lilypat. Another day nearly done! We have been to the Harrogate flower show today with our daughter and SIL. Very busy so I hung on to OH for dear life. Let go of his hand for a second while I read a label and he was gone- thankfully soon found! Thought he would be tired tonight but got the wanderlust so roaming round the house moving things about and coming out with totally rubbish sentences so just responding with “ok”. I slept downstairs in the reclining chair last night as the night before the minute I laid down I just coughed and coughed. Think I shall do the same tonight. Using lots of steam and olbas oil!! Supermarket tomorrow and family for lunch on sunday. Have you got a busy weekend? X

 

[lilypat]

Morning Jackimags, sorry to hear your not well ,take care of yourself
Your day out sounded nice ,where you able to buy something for your garden..? Goodness I bet your blood pressure shot up when OH wandered ,,,
I am going to tackle our shower today needs regrouting ! Then if weather is not to bad hoping to pop up the street to our social club ,there is music on tonight .
Need to pop out Sunday for a bit of shopping .
All been quite here for a couple of days ,no coin counting ,in fact he can go hours not saying a word .
I keep meaning to ask you how do you find TP , I read loads and learn loads but admit to only conversing with you .
Enjoy your weekend and hope you feel better soon .x

 

[Jackimags]

Morning Jackimags, sorry to hear your not well ,take care of yourself
Your day out sounded nice ,where you able to buy something for your garden..? Goodness I bet your blood pressure shot up when OH wandered ,,,
I am going to tackle our shower today needs regrouting ! Then if weather is not to bad hoping to pop up the street to our social club ,there is music on tonight .
Need to pop out Sunday for a bit of shopping .
All been quite here for a couple of days ,no coin counting ,in fact he can go hours not saying a word .
I keep meaning to ask you how do you find TP , I read loads and learn loads but admit to only conversing with you .
Enjoy your weekend and hope you feel better soon .x

I dip into other chats if the “heading” seems relevant. I must admit that I really value our conversation though- thank you. I feel that we are very much on the same journey and it really helps me knowing I am not on my own- or is that selfish? I wish neither of us were on this awful journey. I think the thing I am finding very difficult at the mo is not being able to understand what he is trying to tell me. Thankfully the anger has calmed down over the last week but I’ll not getting too excited. Maybe I am dealing with it better, who knows. Off to the supermarket this morning which is always a challenge. Enjoy your evening tonight. What is your party for on the 6th? x

 

[lilypat]

Hi as you can see I am up again early
We have not seen or heard from son since 17 April ditto eldest daughter .
Youngest daughter we saw on 24th when I drove to her house just outside York and she has phone me every other day .
So I too am very grateful there is someone like you out there ,to whom I can
Ask questions to about anything and maybe moan about OH strange ways
I find what you say about maybe dealing with things about right the first time OH does or say something I get it wrong but by the 10th time I know sort of how to deal with it
You are not selfish at all we need to stick together and get all the help we can get .
I do get people saying ,,,,we are here for you ,,,,,any time you want just ask ,,,,,,
But how do I say to these well meaning people,,,,
You come with us to town ,,,,you escort him to the loo to assist
You sit in our house and listen to his endless questions for 8 hours
They don't understand as they are not going through it .
Saturday was a good day ,
We went to town on bus ,we got front seat upstairs bliss makes the 30 min journey more pleasant, found every thing I needed ,
Back home
He was happy to sit and watch TV and have music on at same time !! While I did quite a few jobs.
Someone kindly inform me the band had cancelled at the club early enough so I was able to explain and arrange another type of evening,,,,,,thank goodness for Midsummer murder programmes, all well till the end and then restless started .
Whoops I popped the wrong date on it's the 11th of may .his brothers party . A kind couple who live in the village are going and have offered to take us ,,so transport is sorted ,its his brothers 70th he his arriving from Australia on the 6th , fom his last message he has been reading up on (FTD ) so heaven help me he probably is going to give me loads of tips !!!!
I can hear the rain on the window I hope it stops so we can venture today
Enjoy your Sunday lunch here hoping to a calm day for us both and a dry one .

 

[Jackimags]

Hi as you can see I am up again early
We have not seen or heard from son since 17 April ditto eldest daughter .
Youngest daughter we saw on 24th when I drove to her house just outside York and she has phone me every other day .
So I too am very grateful there is someone like you out there ,to whom I can
Ask questions to about anything and maybe moan about OH strange ways
I find what you say about maybe dealing with things about right the first time OH does or say something I get it wrong but by the 10th time I know sort of how to deal with it
You are not selfish at all we need to stick together and get all the help we can get .
I do get people saying ,,,,we are here for you ,,,,,any time you want just ask ,,,,,,
But how do I say to these well meaning people,,,,
You come with us to town ,,,,you escort him to the loo to assist
You sit in our house and listen to his endless questions for 8 hours
They don't understand as they are not going through it .
Saturday was a good day ,
We went to town on bus ,we got front seat upstairs bliss makes the 30 min journey more pleasant, found every thing I needed ,
Back home
He was happy to sit and watch TV and have music on at same time !! While I did quite a few jobs.
Someone kindly inform me the band had cancelled at the club early enough so I was able to explain and arrange another type of evening,,,,,,thank goodness for Midsummer murder programmes, all well till the end and then restless started .
Whoops I popped the wrong date on it's the 11th of may .his brothers party . A kind couple who live in the village are going and have offered to take us ,,so transport is sorted ,its his brothers 70th he his arriving from Australia on the 6th , fom his last message he has been reading up on (FTD ) so heaven help me he probably is going to give me loads of tips !!!!
I can hear the rain on the window I hope it stops so we can venture today
Enjoy your Sunday lunch here hoping to a calm day for us both and a dry one .

Thought I would put this photo on and you know who you are talking to. We took it on the memory walk last year. It’s myself, hubby, son and daughter.

 

[lilypat]

hi sorry about the late reply all mad here .
I have sent you a photo in private conversation . I think ??
let me know if its there ,there is also a explanation on why its in there and not on here .
on saying that I think i have posted one in the media section lol
my brain is all over .
pleas forgive me I will catch up tomorrow hopefully

 

[lilypat]

us

 

[hatto22]

My mum has fronto-temporal dementia and she is on 20mg of Memantine daily. This time last year I was chasing her around the streets or different neighbours were bringing her back. Memantine doesn't work for all dementia sufferers but I've certainly seen a huge improvement with my mum. TBH if medication hadn't been prescribed then I think mum would be in a home by now because there's no way I could have coped indefinitely.

 

[imsoblue]

Just wanted to share what was on our news shows in United States tonight. Be sure to click under the main videos for other videos. This link is what was on "after the show"
https://www.cbsnews.com/news/reporting-on-frontotemporal-dementia-60-minutes-2019-05-05/