Fronto-temporal dementia

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Morning I too am wide awake with OH fast asleep
yuck that tea sounded awful. Bless him
My OH .he went to bed at 9.30pm and came down once shouted down once, he has bronchiectasis so spent 30 mins coughing then came down and promptly fell asleep on sofa again ....
I was trying to catch up with the TV programme 'the widow'
Well I am going to read my kindle
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Morning I too am wide awake with OH fast asleep
yuck that tea sounded awful. Bless him
My OH .he went to bed at 9.30pm and came down once shouted down once, he has bronchiectasis so spent 30 mins coughing then came down and promptly fell asleep on sofa again ....
I was trying to catch up with the TV programme 'the widow'
Well I am going to read my kindle
I did bless him!!! He promptly went back to sleep and is still sleeping so I’ve fed the two dogs and sitting having a proper cup of tea. Have a good day
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
We are having a stay at home day ,just could not face the bank holiday traffic, got OH wearing a wireless headset his music playing and I am sat in peace and quiet.
All calm at moment
Same to you
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
@Jackimags What a day we decided to use the bus to go out so off we popped ,bus on time but full OH likes his seat upstairs .reached our destination ok .so I say now what would you like to do..and the answer is get on any bus that comes in next all well until I realise that it's a local stop and start and visited every village. Oh well it was fun saw more places in the 1 1/2 hours than we had in years .we stayed out for lunch (every where packed ) then after agreeing to get some new elastic waisted trousers I thought we had better head home .so warm on the bus .Best thing was everyone was happy and chatty we had a really nice day out if a little tiring .a quite day at home tomorrow I think .
hope all well in your house hold .
I believe that I may get a quite evening he looks shattered
All that fresh air and fun
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
@Jackimags What a day we decided to use the bus to go out so off we popped ,bus on time but full OH likes his seat upstairs .reached our destination ok .so I say now what would you like to do..and the answer is get on any bus that comes in next all well until I realise that it's a local stop and start and visited every village. Oh well it was fun saw more places in the 1 1/2 hours than we had in years .we stayed out for lunch (every where packed ) then after agreeing to get some new elastic waisted trousers I thought we had better head home .so warm on the bus .Best thing was everyone was happy and chatty we had a really nice day out if a little tiring .a quite day at home tomorrow I think .
hope all well in your house hold .
I believe that I may get a quite evening he looks shattered
All that fresh air and fun
I go wish I could say the same. Horrendous evening last night and still bad this morning. Last night coat and shoes on a dozen times with coat being flung across lounge when I said we were not going out. I ended up doing what I try not to do- in tears with sheer frustration. Had to get our son to FaceTime him this morning to try and bring him round which did help. But then started with coat and shoes again at 5 tonight. Said there was a choir practice at 6 which there wasn’t. So coat and shoes again. I phoned 3 people to speak to him and tell him there wasn’t one but did no good so ended up putting him in car and showing him it was all locked up. When will it end!!! Late tea tonight! Let’s hope for a better day tomorrow x
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
@Jackimags
I am so sorry to hear this. You must be worn out as well as so frustrated. There is nothing I can say to help ,which I am gutted about .You sound as if you did all you could This disease is terrible, it not only robs the person with it but totally screws with the life of the carers .sending hugs .super cuddly ones x
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
@Jackimags
I am so sorry to hear this. You must be worn out as well as so frustrated. There is nothing I can say to help ,which I am gutted about .You sound as if you did all you could This disease is terrible, it not only robs the person with it but totally screws with the life of the carers .sending hugs .super cuddly ones x
Hugs to you too. Pleased you’re having a fairly peaceful weekend- long may it last x
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Morning glad you had a better day .how did you fill your time ?
we to decided to stay at home ..... I wish that we had gone out .....
OH seems quite happy not to talk oh he will say yes please and things like that but conversation is not forthcoming. Quite happy to sit on sofa and watch TV all day. I made him go out side to sit in sun but he figets and is up and down scaring the birds off the chimney .I tried the head phones with music that lasted 30 mins . I gave up let him go inside and put TV on .
Its was a long and lonely day. It was like I lived alone
I resorted to washing some windows some ironing and shorting the trousers .
On the plus side I finally got to finish my book .
Anyway friends calling today for coffee so hopefully a better day .
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Morning glad you had a better day .how did you fill your time ?
we to decided to stay at home ..... I wish that we had gone out .....
OH seems quite happy not to talk oh he will say yes please and things like that but conversation is not forthcoming. Quite happy to sit on sofa and watch TV all day. I made him go out side to sit in sun but he figets and is up and down scaring the birds off the chimney .I tried the head phones with music that lasted 30 mins . I gave up let him go inside and put TV on .
Its was a long and lonely day. It was like I lived alone
I resorted to washing some windows some ironing and shorting the trousers .
On the plus side I finally got to finish my book .
Anyway friends calling today for coffee so hopefully a better day .
Morning glad you had a better day .how did you fill your time ?
we to decided to stay at home ..... I wish that we had gone out .....
OH seems quite happy not to talk oh he will say yes please and things like that but conversation is not forthcoming. Quite happy to sit on sofa and watch TV all day. I made him go out side to sit in sun but he figets and is up and down scaring the birds off the chimney .I tried the head phones with music that lasted 30 mins . I gave up let him go inside and put TV on .
Its was a long and lonely day. It was like I lived alone
I resorted to washing some windows some ironing and shorting the trousers .
On the plus side I finally got to finish my book .
Anyway friends calling today for coffee so hopefully a better day .
I know what you mean about it being lonely. Strangely I feel it would be less lonely on my own than with someone you can’t converse with. How I miss conversation and also having to think before I say something that could cause a problem. We haven’t had the anger today which is a bonus- but lots of confusion. We haven’t ventured out in the car- too busy everywhere. Hoping to go out into Derbyshire with friends tomorrow for lunch. I’ve got a few jobs done runs the house, ironing done. OH has a habit of raiding the ironing pile and puts things away- not necessarily in the right place. Not sure why one complaining it’s less to iron!! Hope you had a good time with your friends x
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Oh @Jackimags your so right on what you wrote about the sort of loneliness and that bit about conversation..he talks with visitors..true not as much as he used to but a lot more than when we are alone .
And the number of times I have to stop myself from saying something that could be constantly repeated back to me .we had a alot better day ta our friends called and I had managed to hide some Easter buns to have with our coffee. I was able to get a private chat to Mike his old work colleague who calls to see him while I am at work ...to see how he was when he visited. They are a great couple
I too managed few jobs. OH likes to was up but tends to miss stuff or use cold water .
Lunch out sounds great enjoy.
Glad it's been a calmer day .
Happy hunting for the ironing
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Oh @Jackimags your so right on what you wrote about the sort of loneliness and that bit about conversation..he talks with visitors..true not as much as he used to but a lot more than when we are alone .
And the number of times I have to stop myself from saying something that could be constantly repeated back to me .we had a alot better day ta our friends called and I had managed to hide some Easter buns to have with our coffee. I was able to get a private chat to Mike his old work colleague who calls to see him while I am at work ...to see how he was when he visited. They are a great couple
I too managed few jobs. OH likes to was up but tends to miss stuff or use cold water .
Lunch out sounds great enjoy.
Glad it's been a calmer day .
Happy hunting for the ironing
How’s your day been. We’ve had a lovely day in Derbyshire and a lovely ploughman’s lunch! We were going to go for another drive after late lunch but he said he wanted to come home. I have been meaning to ask you something. Does your OH dress inappropriately for the weather. He took Ella our cocker spaniel for a walk this afternoon with vest, shirt, jumper, fleece, tog 24 jacket, cord trousers and fleece gloves!!! If I comment and say he will be hot he gets head in hands and angry so I have started to let him put on what he wants.
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
Afternoon , glad you had a good day and meal out .what is it with them we take them out and just when we want more time out they want to come home !!!
OH is ok with clothes at moment but he too seems not to understand the seasons and always seems to want to wear more clothes than required , but also at the moment he is open to me saying no . Its just like having a child , You do right in letting him wear what he wants
I keep meaning to ask you a question -is it me or does everyone seem to spend time just waiting about ?
I sit and wait for him to shower -so I can guide him getting dressed
I sit and wait for him finish eating making sure he cuts up his food small enough
I sit and wait for him to put coat on ,find glasses, find his sweets find his drink etc etc
oh and why does he decide to wants help ? just as I have made a nice HOT cuppa lol
we got our tickets to day for our holiday 2nd week in may for 2 weeks and also booked the assisted lanyard . ( to help through security etc) .
we had a good day today out early to town , he was up for going for a coffee , I was able to get a couple hours longer than he wanted as I told him Sylvia would not be in to pick tickets off till lunchtime , (little white lies =I tell so many !!- .
well here to a peaceful night
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
Afternoon , glad you had a good day and meal out .what is it with them we take them out and just when we want more time out they want to come home !!!
OH is ok with clothes at moment but he too seems not to understand the seasons and always seems to want to wear more clothes than required , but also at the moment he is open to me saying no . Its just like having a child , You do right in letting him wear what he wants
I keep meaning to ask you a question -is it me or does everyone seem to spend time just waiting about ?
I sit and wait for him to shower -so I can guide him getting dressed
I sit and wait for him finish eating making sure he cuts up his food small enough
I sit and wait for him to put coat on ,find glasses, find his sweets find his drink etc etc
oh and why does he decide to wants help ? just as I have made a nice HOT cuppa lol
we got our tickets to day for our holiday 2nd week in may for 2 weeks and also booked the assisted lanyard . ( to help through security etc) .
we had a good day today out early to town , he was up for going for a coffee , I was able to get a couple hours longer than he wanted as I told him Sylvia would not be in to pick tickets off till lunchtime , (little white lies =I tell so many !!- .
well here to a peaceful night
Ditto ditto ditto. I spend more time waiting for one thing or another including all you mentioned. Also if I ask him to do something it takes ages so I end up doing it myself. It saddens me to see a man who could turn his hand to any diy job who now can’t use a screwdriver !! I know what you mean about white lies. I don’t even feel guilty now about telling them. Are you looking forward to your holiday- you’ve probably got mixed feelings. Have a good evening
 

Ernest

Registered User
Jan 23, 2018
141
0
How’s your day been. We’ve had a lovely day in Derbyshire and a lovely ploughman’s lunch! We were going to go for another drive after late lunch but he said he wanted to come home. I have been meaning to ask you something. Does your OH dress inappropriately for the weather. He took Ella our cocker spaniel for a walk this afternoon with vest, shirt, jumper, fleece, tog 24 jacket, cord trousers and fleece gloves!!! If I comment and say he will be hot he gets head in hands and angry so I have started to let him put on what he wants.
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.
 

Jackimags

Registered User
Mar 1, 2019
142
0
South yorkshire
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.
You haven’t gone on at all. That’s what TP is for. I don’t think my OH is ready for CH yet but I am dreading having to make that decision and also worry about financing it. It fills me with fear and dread. We have some savings but they wouldn’t last long. Still let’s just get through a day at a time. Take care
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
@Jackimags you make me smile your like my mirror image , to night he started to dry the pots OR should I say he dried 2 knives and 2 spoons hung up the tea towel.... walked way then dried a plate and a cup .. repeat steps .. it took him about 30 mins to dry out tea time stuff .
what saddens me is the total resignation he seems to have with his dementia , oh I know I am lucky he at the moment has NO temper NO swearing plus lots I know you are having to put with .Its as if he is just going into himself .
Now on a brighter note yes / no to your question about the holiday I have moments of pure panic and then think well I am not totally alone . We are in a party of about 45 , we have gone with the organiser for the past 20 years , she knows us and my OH diagnoses , so if the really scary thing happens I can grab one of the group . some of whom we know others probably new to us this year .
well I have better go and check to see if he is asleep in front of tv ,I am meant to be ironing BUT really trying to see who the murderer is in my book ……
peaceful thoughts
 

lilypat

Registered User
Mar 1, 2019
240
0
Yorkshire
@Ernest wow I hope you feel better now ,I am so glad you decided to share with us tonight. you sound a very strong person . My OH is only at the beginning of his journey I see from what you have wrote you have dealt will a lot . I just like the 'love lies ' bit I am going to try and remember that bit , as Jackiemags says on here it great to unload . my OH is starting that retreating bit we used to hold hands kiss hello etc . its like doors are closing .
as for host mode don't get me started --- I hate it -.
well as I said glad to hear from you ,, peaceful thoughts I send to you ,, speak again soon
 

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