Morning I'm new to this site and was wondering if you have a partner with front lobe dementia. My oh has got it,and I would like to talk to someone who is living with the same dementia. I just feel so useless sometimes, it's so hard to know if I'm doing the right thing. Many thanks Jean
Fld
- Thread starter Jean by the sea
- Start date
It is the nature of the illness that no matter what you do, you will not know if it is the "right" thing. There really isn't a "right" way - it's such an individual illness. And sometimes, no matter what or how you do, it still will appear not to be the right thing. That is not your fault - that is dementia. Our best is all we have.
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Hello Jean and welcome. I'm sure we all feel helpless and lonely a lot of the time, but TP is a wonderful place where you will always find someone who can understand and offer some advice or at least sympathy.
What are you struggling with particularly at the moment?
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What are you struggling with particularly at the moment?
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Hello Jean and welcome to TP. Are you aware of Rare Dementia Support? This is a charity associated with University College London which has a Dementia Research Centre which specialises in the less common dementias such as Frontotemporal dementia. Please see http://www.raredementiasupport.org/.
If you drill down from that page you will find information on FTD and details of the national and regional support groups in the UK. If there isn't one near you, try contacting your consultant, dementia nurse, GP, local Alzheimer's Society, carers groups or memory clinic to see if they are aware of any local FTD support groups. In the UK it is unfortunately a regional mish-mash of services. There will be other people near you who are dealing with FTD, I hope you can find them.
Wishing you strength.
If you drill down from that page you will find information on FTD and details of the national and regional support groups in the UK. If there isn't one near you, try contacting your consultant, dementia nurse, GP, local Alzheimer's Society, carers groups or memory clinic to see if they are aware of any local FTD support groups. In the UK it is unfortunately a regional mish-mash of services. There will be other people near you who are dealing with FTD, I hope you can find them.
Wishing you strength.
Hello jean
Many of the problems associated with FLD/FTD are seen in other dementias too, so TP can be a very good source of information. If you specifically want to talk to people who are caring for people with FTD/FLD you might like the FTD support forum http://www.ftdsupportforum.com/ It is based in USA, but has members all over the world with quite a large number from UK. Im a member of both.
Many of the problems associated with FLD/FTD are seen in other dementias too, so TP can be a very good source of information. If you specifically want to talk to people who are caring for people with FTD/FLD you might like the FTD support forum http://www.ftdsupportforum.com/ It is based in USA, but has members all over the world with quite a large number from UK. Im a member of both.
Hi Jean, welcome to TP! My OH has moderate stage FTD as well. Canary put me onto the ftdsupport site which is excellent for FTD-specific info, and I also find a lot of fantastic general info and support on dementia on TP. I'm a relative newbie but fire away with questions and there will be help!
Hello Jean,
My husband also has FTD - a pretty challenging condition especially as memory loss comes later on in the illness and other people only seem to understand dementia as being Alzheimers. Also because there are so many forms of FTD and symptoms seem to vary a lot between different people. The FTD support forum has been very helpful to me too as has talking point.
My husband also has FTD - a pretty challenging condition especially as memory loss comes later on in the illness and other people only seem to understand dementia as being Alzheimers. Also because there are so many forms of FTD and symptoms seem to vary a lot between different people. The FTD support forum has been very helpful to me too as has talking point.
Hi Jean
The way I look on it is if the top medical people cannot say what is going to happen next with dementia how are we suppose to know what to do. What ever you do will be right today and wrong tomorrow. It is a very large learning curve but people on this site are here to help. Nobody judges and it gives you a chance to do a virtual scream when needed, which trust me will be quite often!
The way I look on it is if the top medical people cannot say what is going to happen next with dementia how are we suppose to know what to do. What ever you do will be right today and wrong tomorrow. It is a very large learning curve but people on this site are here to help. Nobody judges and it gives you a chance to do a virtual scream when needed, which trust me will be quite often!
Hi Jean
My OH has FTD diagnosed june this year although he has had problems for a while now.
The moodswings the loss of language skills lack of any social skill are all starting to kick in literally.
As I write he has lost his temper with the dishwasher and kicked it, frustration caused by a weekend away seeing family including his mother who has alzhiemers..
My OH has FTD diagnosed june this year although he has had problems for a while now.
The moodswings the loss of language skills lack of any social skill are all starting to kick in literally.
As I write he has lost his temper with the dishwasher and kicked it, frustration caused by a weekend away seeing family including his mother who has alzhiemers..
Hill zana sorry for not replying sooner,I've had trouble getting to grips with this.my oh no longer does anything,and his language skills are virtually none existing now.he also gets days where he just stays in bed and sleeps.this worries me as I don't know if it to be expected. When he first started to do this we saw the GP but he couldn't find anything wrong.