Fronto-temporal dementia

[lilypat]

Morning @Jackimags
I too have decided that I will no longer read the fact sheets I just think ah yes OH does that when Wham ! OH decides he will do something totally different. Your so right about been in there world my whole waking moments are making sure
The house is calm and quite
He has his glasses ,sweets,tissues, etc etc
I have stopped telling him what needs paying or where or what event we are going to ..apart from say the next 5 days on the white board .
I know it's far easier for both of us this way .
Well must push on have a calm peaceful day

 

[Jackimags]

Morning @Jackimags
I too have decided that I will no longer read the fact sheets I just think ah yes OH does that when Wham ! OH decides he will do something totally different. Your so right about been in there world my whole waking moments are making sure
The house is calm and quite
He has his glasses ,sweets,tissues, etc etc
I have stopped telling him what needs paying or where or what event we are going to ..apart from say the next 5 days on the white board .
I know it's far easier for both of us this way .
Well must push on have a calm peaceful day

I ordered a small white board last night from Amazon and will just put on what is happening today. Have you found your OH desire for cake, chocolate and biscuits has increased? I have to hide biscuits and so far he’s not found them! Have a good day at work
.

 

[lilypat]

I ordered a small white board last night from Amazon and will just put on what is happening today. Have you found your OH desire for cake, chocolate and biscuits has increased? I have to hide biscuits and so far he’s not found them! Have a good day at work
.

Evening at last I am sat down , the white boards are great .I use blue for the day and date and red for the event apparently those are the best colours to use .
in answer to your question about food . we have always had chocolate and sweets in the house and as OH was not a big eater of them it was a shock to see how much he was eating he really used to eat loads then it was crisps . to solve that problem I stopped buying them ,and I told family not to buy his fav Turkish delight and midget gems .
he also started on the alcohol , when he drank a full bottle of whiskey in the week of his birthday ( it was a personalised gift from daughter } I waited till he was out and removed all the old bottles of any thing we had in the cabinet . he now only has a cider on a night and I don't encourage any more .
on the night we go out he will either not bother with his pint and make it last all night OR drink it down nearly all at once and I have to keep saying slow down , I even told the bar staff not to ask if he is ready for another but to wait for me to order . NO two days are alike !!!
we have had the wallet out again today to check and double check .
Oh before I forget does your OH forget food is hot ? I am always saying to mine that will be hot its as if he does not realise.

 

[Jackimags]

Evening at last I am sat down , the white boards are great .I use blue for the day and date and red for the event apparently those are the best colours to use .
in answer to your question about food . we have always had chocolate and sweets in the house and as OH was not a big eater of them it was a shock to see how much he was eating he really used to eat loads then it was crisps . to solve that problem I stopped buying them ,and I told family not to buy his fav Turkish delight and midget gems .
he also started on the alcohol , when he drank a full bottle of whiskey in the week of his birthday ( it was a personalised gift from daughter } I waited till he was out and removed all the old bottles of any thing we had in the cabinet . he now only has a cider on a night and I don't encourage any more .
on the night we go out he will either not bother with his pint and make it last all night OR drink it down nearly all at once and I have to keep saying slow down , I even told the bar staff not to ask if he is ready for another but to wait for me to order . NO two days are alike !!!
we have had the wallet out again today to check and double check .
Oh before I forget does your OH forget food is hot ? I am always saying to mine that will be hot its as if he does not realise.

Weve had a VERY confusing day. I keep trying to lose his diary as it causes so much confusion not knowing what month follows what month. It has been January all day today and he gets SO cross if I try to help. Any logic seems to have gone out of the window today. Think the confusion has been at its worst but - why?? There is no rhyme or reason. Like you I have had to clear the drinks cupboard- I was asked today at 1pm if I wanted a gin and tonic. I declined for both of us. Strange you mention hot and cold. He drinks his tea really hot- but also sometimes attempts to make a cup of tea using cold water from the kettle. Sitting watching Yorkshire vet at the moment- there’s no plot to follow!!

 

[lilypat]

Oh dear not good ,how about either blacking out the past months /days with black marker pen or just drawing a line through the past days ? or will that upset him.my OH never bothers with day/ dates. he buys a paper but it always looks too neat as if not read . its his mobile that causes problems its a old fashioned one so no internet. but he sends messages t the wrong people when answering . I have started to check it each day and tend to check with people days and dates if things are been arranged . i have also have to keep saying not too much on the fork !
yes Yorkshire vet a good watch .
hope your night calms down

 

[Jackimags]

Oh dear not good ,how about either blacking out the past months /days with black marker pen or just drawing a line through the past days ? or will that upset him.my OH never bothers with day/ dates. he buys a paper but it always looks too neat as if not read . its his mobile that causes problems its a old fashioned one so no internet. but he sends messages t the wrong people when answering . I have started to check it each day and tend to check with people days and dates if things are been arranged . i have also have to keep saying not too much on the fork !
yes Yorkshire vet a good watch .
hope your night calms down

I bought OH a Doro mobile as he couldn’t cope with a normal mobile. He can only ring 4 numbers and not text and I have not given the number to anyone except son and daughter.. It also has a gps tracker built in so I can always see where he is when he takes dog for a walk. Doesn’t really need tracker at the mo- but always a first time! I have also put a call protector on the landline cos he would answer phone and either forget to tell me or not remember who it was

 

[lilypat]

That's a good idea about the phone.OH never speaks on any phone mobile or landline unless I insist. It can take 10 minutes him sitting there tapping away but at least he still knows how .we where plagued by nuisance calls on landline so I have to block unknown numbers .

 

[Jackimags]

That's a good idea about the phone.OH never speaks on any phone mobile or landline unless I insist. It can take 10 minutes him sitting there tapping away but at least he still knows how .we where plagued by nuisance calls on landline so I have to block unknown numbers .

Good day? We were fine till about 8pmthen within 10 mins he was talking double Dutch, moving things from one place to another, getting very agitated and asked me to tick everyone in as they arrived!! I suggested he got ready for bed and watched blue planet which worked. It’s as if the wires become disconnected. Seems more settled now thank goodness

 

[lilypat]

Hi glad you had a calm day ..the wonder of blue planet. Glad it worked .strange how night is the difficult time must be down to been tired..
Yes a good day here . Just little things asking about who is collecting him tomorrow night. But most of day very silent. .OH back to sleeping on sofa from about 6pm ..must have been dreaming as a bit of jerking and speaking ?
Have been talking to the daughters about how OH seems to have plateaued.
.its so strange no real reason to this journey.
Met a friend of OH today someone who has known him years and when I told him of the diagnosis he was very surprised...and said really ?? I saw him this morning and he waved at me ....?
Well that's another day done .time for his pills and bed

 

[lilypat]

I have been thinking about my OH over night and maybe I have just got used to his quirks and problems. Maybe it's like when your child tries his luck to see how much he can push you .you learn to deal with it .Then the child does something different and unexpected and you have to relearn how to deal with it.
Have a good day

 

[Jackimags]

I have been thinking about my OH over night and maybe I have just got used to his quirks and problems. Maybe it's like when your child tries his luck to see how much he can push you .you learn to deal with it .Then the child does something different and unexpected and you have to relearn how to deal with it.
Have a good day

I try to deal with whatever the day throws at me and try not to compare it with the man I had. It makes me sad when I try to compare and try not to think about the things we can’t do anymore and concentrate on what we can do We’ve got a good weekend coming up. 49 years married on Saturday, mother’s day Sunday and birthday on Monday. Hope you’ve had a good day

 

[lilypat]

I try to deal with whatever the day throws at me and try not to compare it with the man I had. It makes me sad when I try to compare and try not to think about the things we can’t do anymore and concentrate on what we can do We’ve got a good weekend coming up. 49 years married on Saturday, mother’s day Sunday and birthday on Monday. Hope you’ve had a good day

Hi @Jackimags
May i say in advance
Congratulations on your long marriage
Happy mother's day &
Very happy birthday to you
I also send you a big cyber hug .x enjoy your weekend
I am alone at the moment OH out with friends. I have cooked my tea scrambled eggs and smoked salmon. And eaten it in total quiet .bliss..

 

[Jackimags]

OH was in perfect “host mode” while our daughter was here for tea but switched as the door closed. Couldn’t even get him to sit and watch blue planet. Kept making one cuppa after another but denied having even had one. After getting very cross took himself up to bed- that was at 8.30
and still pottering around at 10.15!!
We’ll see what the morning brings. Your scrambled egg and smoked salmon sounded delicious. (10.20 and he’s back downstairs)!!! Have a good day tomorrow

 

[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 .

Hi my husband has ftd too he was diagnosed at 63 he’s now 67 and is becoming aggressive but I too work and can understand your dilemma and you are right in your feeling of no one knowing about FTD because they seem to put dementia under the banner of Alzheimer’s so not enough is known about the other dementias because there is very little medication they can give the memory services seem to be of little help we were asked if we wanted to go to
Salford Royal Hospital as they are a research centre one of two in the country they were more helpful than memory services in West Yorkshire they now monitor him yearly and you can ask questions that your GP can’t always answer

 

[lilypat]

I hate host mode it drives me mad .family call and as I see them off ....its all well he seems fine to me ..are you sure you have the right diagnosis!!!!!
Just for once I would love them to try it and sit in our home with him and his endless counting of his money =I can bare the paper money but the coins!!! Drives me mad does the noise .
Had a great day out on Saturday daytime and night. Hoping it would mean a lay in ? No up at 6am .I have decided this morning to ignore the fact that he cant sit still and just carry on doing my housework around him it's far easier than saying please go sit down your on my way 10 times .seems to shaping up to a nice day maybe a walk later

 

[Jackimags]

Hi my husband has ftd too he was diagnosed at 63 he’s now 67 and is becoming aggressive but I too work and can understand your dilemma and you are right in your feeling of no one knowing about FTD because they seem to put dementia under the banner of Alzheimer’s so not enough is known about the other dementias because there is very little medication they can give the memory services seem to be of little help we were asked if we wanted to go to
Salford Royal Hospital as they are a research centre one of two in the country they were more helpful than memory services in West Yorkshire they now monitor him yearly and you can ask questions that your GP can’t always answer

After a year of tests scans etc my 71 year old hubby was diagnosed with FTD. Consultant discharged him, refd to memory service and they discharged him refd to speech therapist and they discharged him. We now just see Admiral nurse about every 3 to 4 months. Everyone assumes dementia is Alzheimer’s and it’s not- I wish it was cos at least there is some treatment for that.

 

[Jackimags]

I hate host mode it drives me mad .family call and as I see them off ....its all well he seems fine to me ..are you sure you have the right diagnosis!!!!!
Just for once I would love them to try it and sit in our home with him and his endless counting of his money =I can bare the paper money but the coins!!! Drives me mad does the noise .
Had a great day out on Saturday daytime and night. Hoping it would mean a lay in ? No up at 6am .I have decided this morning to ignore the fact that he cant sit still and just carry on doing my housework around him it's far easier than saying please go sit down your on my way 10 times .seems to shaping up to a nice day maybe a walk later

How’s your day going. I made the BIG mistake of saying that we would probably go to the garden centre this afternoon then realised it would be busy so said we will go tomorrow instead. Now every 5 mins “What time are we going” and I repeat that we are not going today. Driving me mad! Know what you mean about host mode. People think I am exaggerating- they need to be a fly on the wall when they have left. Then they’d see ime not exaggerating!! Just been feedin and watering in the garden but he’s constantly at the patio door asking if I’ve nearly finished so we can “go”!!! Think we’re heading to a fractious evening and not sure blue planet is there as a back up tonight!!

 

[lilypat]

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

 

[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

OH also started insisting to keep shoes on on the house- which we have never done. Gets cross if I ask him to put his slippers on. Our son and DIL are both physio’s and she has asked him to keep getting out of chair and then standing and then sitting down again- doing it 2 or 3 times every hour. Struggles to get out of chair with anything in his hand. Needs to push himself up using both chair arms. Big hug for the week ahead x

 

[Littlebear]

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.