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I'm 21 and My Dad has been diagnosed with suspected "Frontal Temporal Dementia"

KatrineWightman

Registered User
Apr 5, 2015
9
I feel like a lost cause right now.. No one around me knows how I feel. My friends don't know how to deal with this, my partner is completely blank about it (he has aspergers)

I don't know who to talk to about all of this.. I'm so confused... I've been diagnosed with depression and anxiety because of the impact it has had on us all..

He just isn't the same anymore...

I have two younger sisters trying to deal with this also. One is 19 and the other 13.

I would like some information and maybe someone to chat to.. If there is anyone out there my age dealing with or have dealt with this problem..

Please..
 

Redpoppy

Registered User
Jul 31, 2012
268
Glamorgan s.wales
I had to respond to your post Katrine,although I don't have the information you need but someone with more experience will surely reply soon and be able to advise you.Thinking of you and your sisters and hope you get the support you need.
 

KatrineWightman

Registered User
Apr 5, 2015
9
I had to respond to your post Katrine,although I don't have the information you need but someone with more experience will surely reply soon and be able to advise you.Thinking of you and your sisters and hope you get the support you need.
Thank you for your response. It's a relief hearing someone say there may be a solution to my problem.
 

KatrineWightman

Registered User
Apr 5, 2015
9
Hello Katrine and welcome to TP.

So sorry that your family are going through such a difficult time but hopefully you will find the help and support on here that will help you through. I am putting a link to some factsheets, take a look and come back with any questions you have and I am sure you will get some advice to help you.
Thank you for the information. I look forward to reading the factsheets.
I hope it isn't a problem that I am asking for someone to talk to. i really do feel quite isolated.
 

KatrineWightman

Registered User
Apr 5, 2015
9
Hi Katrine, welcome to TP
You're not alone below is a link to recent thread started by someone in the same position as you, hopefully you find something in there. I think most of the conversations happen on private messages as there are things you might not want to say to the whole world. I hope you find someone to buddy up with.
K
Thank you for this information, hopefully I will find some peace of mind for now. I really appreciate it. :)
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Thank you for the information. I look forward to reading the factsheets.
I hope it isn't a problem that I am asking for someone to talk to. i really do feel quite isolated.
Hi Katrine :)

No way is if a problem wanting someone to talk to.....I think we all need that! Please feel free to post your feelings and questions on the forum, or send private messages to particular people if you want. I don't know where you are based, but you or your sisters might like to contact a Young Carers Service. If so, have a look on

http://www.carers.org and look for young carers at the bottom of the home page.

Or Spurgeons may help:

http://www.spurgeons.org/young-carers/

Keep posting, I hope to see you around :)

Lindy xx
 

janey106

Registered User
Dec 10, 2013
139
Hi Katrine

This is such a difficult time for you all and it sounds like you are the eldest and concerned for your younger siblings too. TP is a great place to come but I know I have also called our nearest dementia office and had a couple of chats with them when I needed a real voice. To be honest, they couldn't tell me much more than I had read but they did know of some support groups starting up and it was just reassuring to gave someone else who was 'neutral' to acknowledge my fears and feelings.

Hope you will feel able to use TP whenever. Thinking of you.
 

KatrineWightman

Registered User
Apr 5, 2015
9
Hi Katrine :)

No way is if a problem wanting someone to talk to.....I think we all need that! Please feel free to post your feelings and questions on the forum, or send private messages to particular people if you want. I don't know where you are based, but you or your sisters might like to contact a Young Carers Service. If so, have a look on

and look for young carers at the bottom of the home page.

Or Spurgeons may help:



Keep posting, I hope to see you around :)

Lindy xx
Thank you Lindy. I really appreciate it.
I've been dealing with this for almost a year now.. It really doesn't get any easier.. He's progressed so fast.. He's losing the use of his arms right now too which is distressing because he is still conscious of things sometimes, and he has always driven everyone everywhere. He doesn't realise he can't do that as much anymore. It's so heartbreaking knowing that every time I go up there he's always that little bit worse.

We are based in southeast Kent. I've not heard of anyone around here. I've often wanted to wander into the care home which is specifically for people with Dementia.. But I would have thought that it would have been a problem because they have a lot to deal with looking after the people there, so I've never bothered.
 

KatrineWightman

Registered User
Apr 5, 2015
9
Hi Katrine

This is such a difficult time for you all and it sounds like you are the eldest and concerned for your younger siblings too. TP is a great place to come but I know I have also called our nearest dementia office and had a couple of chats with them when I needed a real voice. To be honest, they couldn't tell me much more than I had read but they did know of some support groups starting up and it was just reassuring to gave someone else who was 'neutral' to acknowledge my fears and feelings.

Hope you will feel able to use TP whenever. Thinking of you.
Thank you Janey.

I'm not the oldest as he has other children in Scotland, They understand a lot more/cant be bothered sometimes. I have two older brothers down here too, One from my mum one from my dad and they just couldn't give two hoots, don't call, don't ask how he is, If anything they tell him to stop being so inappropriate! For all the people who know about Frontal Temporal Dementia, he cannot help it! I am the oldest of his Daughters with my mum. My sister has depression on a wide scale so trying to keep her up after all this is draining, my other sister has Autism so she constantly cries when dad does something different and my mum.. She gets to a point where she cant take it and cries in my arms.. I feel like I need to be the strong one and hold it all together.. but I just don't know if I can..
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Thank you Janey.

I'm not the oldest as he has other children in Scotland, They understand a lot more/cant be bothered sometimes. I have two older brothers down here too, One from my mum one from my dad and they just couldn't give two hoots, don't call, don't ask how he is, If anything they tell him to stop being so inappropriate! For all the people who know about Frontal Temporal Dementia, he cannot help it! I am the oldest of his Daughters with my mum. My sister has depression on a wide scale so trying to keep her up after all this is draining, my other sister has Autism so she constantly cries when dad does something different and my mum.. She gets to a point where she cant take it and cries in my arms.. I feel like I need to be the strong one and hold it all together.. but I just don't know if I can..
Hello again Katrine :)

I really feel it is very important that you get some support. Caring is demanding enough in it's own right, but you are also at a stage in your own life when you need to build up your own social life, work plans, education, whatever it is that is important to you. You do need time and energy for this ....I am sure you don't need me to tell you this!

If you and / or your sisters could get some carer support specifically tailored for your age group, that would be ideal. In the meantime, though, perhaps call your nearest Alzheimer's Society branch? Also I will look to see whether Admiral nurses work in your area ( they are specialist dementia nurses but don't cover every area as yet).

What are you looking for when you want to walk into that nursing home? Is it people who understand? If so, they do exist through these other agencies ( and on TP ).

Will be back when I've looked up Admiral nurses.

(((Hugs)))

Lindy xx
 

KatrineWightman

Registered User
Apr 5, 2015
9
Hello again Katrine :)

I really feel it is very important that you get some support. Caring is demanding enough in it's own right, but you are also at a stage in your own life when you need to build up your own social life, work plans, education, whatever it is that is important to you. You do need time and energy for this ....I am sure you don't need me to tell you this!

If you and / or your sisters could get some carer support specifically tailored for your age group, that would be ideal. In the meantime, though, perhaps call your nearest Alzheimer's Society branch? Also I will look to see whether Admiral nurses work in your area ( they are specialist dementia nurses but don't cover every area as yet).

What are you looking for when you want to walk into that nursing home? Is it people who understand? If so, they do exist through these other agencies ( and on TP ).

Will be back when I've looked up Admiral nurses.

(((Hugs)))

Lindy xx
Thank you very much Lindy!
Yes, I just want someone to understand, even if it's a little bit really.
 

KatrineWightman

Registered User
Apr 5, 2015
9
Hi Katrine
Here's the link to your area, I don't know if you're near any of these places but there are a few marked on the map.
K
Thank you very much :)
I hope this helps.. But my dad is very particular. The woman who has cared for him for the last three years (only been diagnosed 1) is who he wants to carry on the caring. But I'm not sure on how he will react when he doesn't recognise her?
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Thank you very much Lindy!
Yes, I just want someone to understand, even if it's a little bit really.
You have come to the right place for online understanding! :cool:

Sometimes more is needed, though, like an arm around you or a shoulder to cry on. Do please try to make contact with local support agencies as above, that way you hopefully will get the best of both worlds :) So annoying that it's a Bank Holiday today and so many places are shut.....take a deep breath and make local contact when you can :)

Take care

Lindy xx
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Thank you very much :)
I hope this helps.. But my dad is very particular. The woman who has cared for him for the last three years (only been diagnosed 1) is who he wants to carry on the caring. But I'm not sure on how he will react when he doesn't recognise her?
Katrine :)

Obviously I don't know the details of the situation. But I would say.....try not to look ahead too much. We none of us know what the future holds.....and it doesn't get us anywhere, trying to manage things that may never happen ....

So, I'd say, try to live in the moment as much as you can, and make the most of what good times you can :)

(((Hugs)))

Lindy xx