Ftld

[hollybough]

Hi!
We are relatively young to even be talking bout dementia. But soo sad cos my husband has been diagnosed wiv this awful illness. I am heartbroken!
His memory is still relatively gud but his behaviour is really bad. During the day it's easier but I need to keep alert all night cos he wants to go out for walk or to stop neighbours "making noise". So difficult for me. Our social life has all but diminished which makes me soo sad and unhappy.
He had such gud CBT when diagnosed that day to day living is much easier. But my problem is what happens outside our home. I now feel an anxiety which I have never known in my life cos I am a pretty laid back sorta girl.
I would really welcome any helpful information. My husband's problem is behavioural and thankfully his memory is still not too bad. His walking is sometimes not gud.

 

[Pacucho]

Hello,

I have just read your post and noticed no one has responded to you. I am sure someone will soon.

I do not have any experience of FTLD, but I wonder whether it would be a good idea to seek a referral back to your husband's consultant to explain what is going on in terms of his behaviour. It may be that they can review his medication to see if anything will help to enable both of you to improve your quality of life.
Hope this helps,

Paco

 

[MAMMYGRANNY]

Hi Hollybough,
I'm so sorry that you, like me are dealing with this dreadful condition.
I'm afraid I can't give you much consolation my husband was diagnosed four years ago but was bad for a long time before that but I didn't realise that he was ill as I'd never even heard of FTLD.
A great place to go for information is the FTD support forum which has members from all over but mostly USA.
They are great and very supportive when you have a problem (haha we have a big problem all the time haven't we).
At least I'm spared the wandering as my husband can't get out of the chair or bed without help but there are mats with a sensor to wake you available (on amazon I think)
My husband is lovely to all and sundry - he saves his nasty side for me haha! Today was a particularly bad day so here I am on talking point trying to cheer myself up. Can't go anywhere now as he's incontinent and a falls risk.
We're also young -( ish haha!)

 

[Philbo]

Hello Hollbough.

You don't say what behaviour problems your husband has when outside of the house, so it is difficult to offer any suggestions?

My wife has FTD, which has affected her cognitive abilities and also her speech. She is always very happy, which perversely can cause problems when out and about. Her facial recognition (and lack of self awareness) means she can see everyone as being a long lost relative. So in the supermarket, for instance, she'll go up to strangers thinking she knows them. I usually have to stand behind her mouthing "sorry, she thinks she knows you", which most folk are understanding.

We are still able to socialise down our local pub at weekends (at the moment, anyway), as the friends we have made there (all since her diagnosis) are very understanding and supportive.

As mentioned, if your problem is your husband wanting to go off outside at night, as well as aids to secure the house, there may be medication to help calm him down at night. If the issues are more about coping with his behaviour when out, a bit more information may help get further advice from others on this forum (if you're willing to share)?

Kind regards.
Phil

 

[MAMMYGRANNY]

Philbo
That is exactly what my husband does too and people are usually fine - they think he's someone they've forgotten!!!!
He also has been everywhere he sees on TV or places people mention and can be quite convincing! If I didn't know otherwise I'd believe him and I'm sure people who don't know the facts believe his stories. No harm & the stories can be quite funny sometimes!