Fronto-temporal dementia

[lilypat]

@Jackimags
Well where to start I have only just managed to catch up .
Positive things first how was the retail therapy??? Cant remember the last time I got to solo shop either for food or just a browse around shops .hope you found something nice to buy ..
It's so disheartening that your going to have a difficult evening.
Keep smiling and try to keep calm .
I came home from work to means about the birds on the roof !!! He kept going out and telling them to (**** off !!) I mean as if they listen!! ..he finally got settled with his music on very loud and I retreated to the bed room to iron .
What is it about Sunday's? My OH is definitely started to lose words .
And he is up and down off sofa most of night . Checking wallet every 10 mins !
Well here is hoping your ok and it is not a bad night

 

[Jackimags]

@Jackimags
Well where to start I have only just managed to catch up .
Positive things first how was the retail therapy??? Cant remember the last time I got to solo shop either for food or just a browse around shops .hope you found something nice to buy ..
It's so disheartening that your going to have a difficult evening.
Keep smiling and try to keep calm .
I came home from work to means about the birds on the roof !!! He kept going out and telling them to (**** off !!) I mean as if they listen!! ..he finally got settled with his music on very loud and I retreated to the bed room to iron .
What is it about Sunday's? My OH is definitely started to lose words .
And he is up and down off sofa most of night . Checking wallet every 10 mins !
Well here is hoping your ok and it is not a bad night

Are you sure you are writing about your OH and not mine!! We have had the wallet out of bag, complained there is no money in the wallet and put back in bag, then repeated three times!! Bought 3 tops from M&S sale reduced to £5 each. It was lovely to be able to meander and stop to look at things without hanging on to OH.

 

[lilypat]

Hi glad you found something nice ..its strange how they have the similar habits and it's nice to know that it's just not mine doing these repeating things ..I am hoping that when OH goes out tomorrow with his brother for the day they don't come back till about 3pm then I may get to the supermarket and back alone .

 

[Jackimags]

Hi glad you found something nice ..its strange how they have the similar habits and it's nice to know that it's just not mine doing these repeating things ..I am hoping that when OH goes out tomorrow with his brother for the day they don't come back till about 3pm then I may get to the supermarket and back alone .

Hope you manage it. Can you believe we get excited about a supermarket shop!!!

 

[lilypat]

I am sat here at work and I know I am not meant to be on my phone but if I don't release this worry i will scream he counted his 10 £1 coins at least 4 times asked me if its Thursday at least 3 times and lost his sunglasses twice and all before I set off to work .now I cant concentrate i worring about him going out with his brother..will he lose him ..lose his coat ..lose his sunglasses etc etc..I know I should trust others to look after him but I am stressed

 

[Jackimags]

I am sat here at work and I know I am not meant to be on my phone but if I don't release this worry i will scream he counted his 10 £1 coins at least 4 times asked me if its Thursday at least 3 times and lost his sunglasses twice and all before I set off to work .now I cant concentrate i worring about him going out with his brother..will he lose him ..lose his coat ..lose his sunglasses etc etc..I know I should trust others to look after him but I am stressed

I used to volunteer at our local hospice but would get up to half a dozen phone calls while I was there so had to finish. Now I can’t leave him alone at all. I do know how stressing it is for you. It seems that we as carers have to give up our lives as well as the person with the dementia. Stay strong- big hug from me

 

[lilypat]

@Jackimags
Phew all well ...
Got to the supermarket and flew around .I did a massive shop .what ever I had on list I bought in bulk - all the long shelf life items anyway. Filled the freezer too. Shop to car ok ..car to house so many trips lol .but worth it .OH had a good day fish and chips for lunch . Came home with wallet and etc..now sat relaxing until fidget time !
Thanks for your hug this am was needed

 

[Jackimags]

@Jackimags
Phew all well ...
Got to the supermarket and flew around .I did a massive shop .what ever I had on list I bought in bulk - all the long shelf life items anyway. Filled the freezer too. Shop to car ok ..car to house so many trips lol .but worth it .OH had a good day fish and chips for lunch . Came home with wallet and etc..now sat relaxing until fidget time !
Thanks for your hug this am was needed

You know that hug you had yesterday- it’s my turn today please. Afraid I got so frustrated I ended up in tears which I haven’t done for ages. A friend is picking him up for a choir practice at 6pm and since 1pm he has had coat and shoes on, shouting at me and accusing me of stopping him going. Ended up ringing the friend and asking them to speak to him. He’s got no concept of where 6pm is. Had to stop him going out the door twice. At times it all just gets too much!!

 

[lilypat]

Oh no @Jackimags I am sorry to hear you have been crying I feel for for you I send you big hugs 2 of them .i know you do your very best .but it's so frustrating and hard work as well . Just writing this reply is lol i thought he was sat reading paper but he has come through counting his money again .
What a good idea that was to phone your friend. Did the distraction work .
I have just finished telling his sister not to mention anything that's happening next month as I will never hear the last of it .....keep your chin up soon be 6pm
Let me know how your night goes

 

[Jackimags]

Oh no @Jackimags I am sorry to hear you have been crying I feel for for you I send you big hugs 2 of them .i know you do your very best .but it's so frustrating and hard work as well . Just writing this reply is lol i thought he was sat reading paper but he has come through counting his money again .
What a good idea that was to phone your friend. Did the distraction work .
I have just finished telling his sister not to mention anything that's happening next month as I will never hear the last of it .....keep your chin up soon be 6pm
Let me know how your night goes

Been quite a ‘silent’ evening. Not sure he can remember this afternoon but I can! So now riddled with guilt for feeling the way I do. Tomorrow is another day. An appt for OH came today so I’ve hidden it!! Hope your evening has been ok. Thank you for the hugs

 

[lilypat]

@Jackimags please don't feel awful .you are a human flesh and blood with feelings and a heart that is sometimes hurt. If we were robots we would not need TP . We have been out to our local sports club. Its usually quite on a Friday night about a dozen people most of them my OH age and all have known him for years .all know about his FTD and is a great to have a laugh .1 chap is going out for day on Tuesday and OH going with him ...so I may get as much as 3 hours alone ....filled of course with worry about if they lose each other etc etc ..but that Tuesday I will worry about it then ..
Now I hope you read this and feel less guilty. It's a hard path we tread.
Tomorrow is another day .

 

[Jackimags]

@Jackimags please don't feel awful .you are a human flesh and blood with feelings and a heart that is sometimes hurt. If we were robots we would not need TP . We have been out to our local sports club. Its usually quite on a Friday night about a dozen people most of them my OH age and all have known him for years .all know about his FTD and is a great to have a laugh .1 chap is going out for day on Tuesday and OH going with him ...so I may get as much as 3 hours alone ....filled of course with worry about if they lose each other etc etc ..but that Tuesday I will worry about it then ..
Now I hope you read this and feel less guilty. It's a hard path we tread.
Tomorrow is another day .

Had some lovely carrot cake and a cappuccino. Delicious. Peaceful day - so far! Hope you both enjoyed your walk. Giving the cognitive therapy another go tomorrow so we’ll wait and see how that goes. Are you feeling a bit better? Blue planet on tonight so that should keep us entertained-hopefully!

 

[lilypat]

@Jackimags please don't feel awful .you are a human flesh and blood with feelings and a heart that is sometimes hurt. If we were robots we would not need TP . We have been out to our local sports club. Its usually quite on a Friday night about a dozen people most of them my OH age and all have known him for years .all know about his FTD and is a great to have a laugh .1 chap is going out for day on Tuesday and OH going with him ...so I may get as much as 3 hours alone ....filled of course with worry about if they lose each other etc etc ..but that Tuesday I will worry about it then ..
Now I hope you read this and feel less guilty. It's a hard path we tread.
Tomorrow is another day .

@Jack

Had some lovely carrot cake and a cappuccino. Delicious. Peaceful day - so far! Hope you both enjoyed your walk. Giving the cognitive therapy another go tomorrow so we’ll wait and see how that goes. Are you feeling a bit better? Blue planet on tonight so that should keep us entertained-hopefully!

Hi ooh carrot cake love it .glad you enjoyed it. Nice long walk very fresh .home and coffee in conservatory. OH decided to watch TV so I snuck off to read my book got a full hour .I am feeling a lot better ta .hope you get a quite evening .OH has had wallet out most of afternoon in and out of it checking money.

 

[lilypat]

@Jackimags Morning and advice please .
Does your OH ever have a 'normal' evening .We have had 2 in a row ?
During the day things have been the same
In &out of wallet counting his £1 coins constantly. Asking about day and date .etc etc
But then where as before he would sleep from 6pm till 10pm
He started staying awake but fiddling and wandering about thought it was start of sundowning
Now this for the last 2 evenings he has laid on sofa 'reclining ' watches TV and we have spoken about the programmes we have been able to sort of discuss the plot .! Really sort of normal like .
I am now confused.

 

[Jackimags]

@Jackimags Morning and advice please .
Does your OH ever have a 'normal' evening .We have had 2 in a row ?
During the day things have been the same
In &out of wallet counting his £1 coins constantly. Asking about day and date .etc etc
But then where as before he would sleep from 6pm till 10pm
He started staying awake but fiddling and wandering about thought it was start of sundowning
Now this for the last 2 evenings he has laid on sofa 'reclining ' watches TV and we have spoken about the programmes we have been able to sort of discuss the plot .! Really sort of normal like .
I am now confused.

Ditto. We had two evenings last week and again last night that we’re “normal”. There is no rhyme or reason to it. The only thing last night was just before we went to bed at 10 he couldn’t get a sentence out. He was trying to tell me something but couldn’t and got a bit frustrated. It’s as if the wires sometimes connect. Let’s just make the most of those evenings! Do you think it’s anything to do with the lighter nights? Ime as confused as you. Have a good day

 

[lilypat]

Ditto. We had two evenings last week and again last night that we’re “normal”. There is no rhyme or reason to it. The only thing last night was just before we went to bed at 10 he couldn’t get a sentence out. He was trying to tell me something but couldn’t and got a bit frustrated. It’s as if the wires sometimes connect. Let’s just make the most of those evenings! Do you think it’s anything to do with the lighter nights? Ime as confused as you. Have a good day

Hi thanks for your thoughts Light evenings mm maybe .? I .had loads planned for tomorrow afternoon while OH was out ..but it's been cancelled I cant believe how gutted I feel ...never mind the weather is to be nice all week so I will make sure we get out most afternoons .

 

[Deedee61]

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 .

 

[Deedee61]

I too have the same problem I work five days a week and there is nothing in our area at night although my husband was young when he was diagnosed at 63 he is still very active

 

[lilypat]

I too have the same problem I work five days a week and there is nothing in our area at night although my husband was young when he was diagnosed at 63 he is still very active

Hi it's hard work looking after a OH with FTD this keeps me sane when you read others in the same boat as you the help and advice is very good

 

[Jackimags]

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 it's hard work looking after a OH with FTD this keeps me sane when you read others in the same boat as you the help and advice is very good

Here here. I know that we are still travelling the road alone but it has really helped when I read your posts- a lot of which I could have written. No two days are the same. How people get through this without support I really don’t know. There are times when I think ime the one with the problem. I feel my life is as limited as theirs. I don’t know about you but I don’t look past today. I have stopped reading all the factsheets we’ve been given as I’ll deal with tomorrow when it comes. Every day my OH asks when we are going on holiday and I know it would be a disaster so have to keep fobbing him off. Thank you for your posts- they keep me going. Have a good day