My husband has frontal temporal dementia

[Jean1511]

Hi I've just joined, I'm scared, and not sure if it's natural to be this way, my hubby has decided not to educate himself on FTD as he, at this moment doesn't want to know what's going to happen to him, I'm definitely educating myself as I need to be ready for what's inevitable, is it normal to be scared?

 

[canary]

Hello @Jean1511 and welcome to the forum

Yes, of course its normal to be afraid and overwhelmed in the stage around diagnosis, even if you are expecting it. Diagnosis suddenly makes it all very real and undeniable - unless you are the person with dementia who frequently does not believe the diagnosis, doesnt think they have changed at all, or doesnt want to think about it!

This usually means that you feel very much on your own with no-one to talk things over with. You have this forum, though, and everyone on it who has been through the same thing. You can ask about anything on here, or just vent when it all gets too much
xxx

 

[Somerset girl]

Hello and welcome, Canary has put it very well and I agree with everything she’s told you. I’m the same as you, I research everything, and any new symptom I’m there. My husband checked out his diagnosis at the beginning but now “he’s fine,” so there’s no need to look!

Just come on here. I can’t tell you what great advice I’ve had, join a carers group, if there’s one in your area, GP surgeries have a carers person, Alzheimer’s society have reps, you just have to find help and once you contact just one of these, things snowball and you’ll know you’re not in your own and it will help you to know everyone else gets scared at times.

 

[Jean1511]

Hello @Jean1511 and welcome to the forum

Yes, of course its normal to be afraid and overwhelmed in the stage around diagnosis, even if you are expecting it. Diagnosis suddenly makes it all very real and undeniable - unless you are the person with dementia who frequently does not believe the diagnosis, doesnt think they have changed at all, or doesnt want to think about it!

This usually means that you feel very much on your own with no-one to talk things over with. You have this forum, though, and everyone on it who has been through the same thing. You can ask about anything on here, or just vent when it all gets too much
xxx

Thank you just for this reply, I appreciate it, J x

 

[Jean1511]

Hello and welcome, Canary has put it very well and I agree with everything she’s told you. I’m the same as you, I research everything, and any new symptom I’m there. My husband checked out his diagnosis at the beginning but now “he’s fine,” so there’s no need to look!

Just come on here. I can’t tell you what great advice I’ve had, join a carers group, if there’s one in your area, GP surgeries have a carers person, Alzheimer’s society have reps, you just have to find help and once you contact just one of these, things snowball and you’ll know you’re not in your own and it will help you to know everyone else gets scared at times.

Thanks, this may just help me, I don't talk about it much, not even our kids as my hubby thinks we're all "talking like he's dead already" we're not we're just trying to get our heads around it, thanks for replying,