My husband has not been formally diagnosed but is under the care of neurologists and cognitive medics. My family and I are so frustrated by the whole situation. He is showing significant signs of dementia but despite not liking 'labels' we need conformation regarding his condition and what we can do to help him. I search different advice sites on line, but still feel rather isolated.
Very confused carer
- Thread starter Marionf
- Start date
Good morning @Marionf and welcome to the forum.
I’m so sorry to hear about your husband. It must be very difficult for all of you.
I’m glad you’ve found Dementia Talking Point. It’s a wonderful forum and there is always someone here to listen and support. I do hope you feel a little less isolated posting here.
I’m so sorry to hear about your husband. It must be very difficult for all of you.
I’m glad you’ve found Dementia Talking Point. It’s a wonderful forum and there is always someone here to listen and support. I do hope you feel a little less isolated posting here.
Welcome to the forum. Unfortunately it can sometimes take time to confirm a diagnosis but even then everyone with dementia is different so rate of progression, symptoms, or help needed for one person isn't necessary going to be the same for another person, even with the same diagnosis.
This forum contains a wealth of information and help – just post up what you need help with and you’ll receive support and advice from other forum members. There are lots of fact sheets available and a useful ‘Carer’s Guide’ which contains details of practical things you can do, such as ensuring that you get Power of Attorney in place. Also some benefits such as Attendance Allowance are not dependant on a diagnosis so can be claimed without needing a diagnosis, plus there are support groups available too:
https://www.alzheimers.org.uk/get-s...84.1051614368.1566329008-945042157.1514915509
This forum contains a wealth of information and help – just post up what you need help with and you’ll receive support and advice from other forum members. There are lots of fact sheets available and a useful ‘Carer’s Guide’ which contains details of practical things you can do, such as ensuring that you get Power of Attorney in place. Also some benefits such as Attendance Allowance are not dependant on a diagnosis so can be claimed without needing a diagnosis, plus there are support groups available too:
https://www.alzheimers.org.uk/get-s...84.1051614368.1566329008-945042157.1514915509
Hello @Marionf. Welcome from me too.
How long has your husband been under investigation? It took over a year for my husband to be sent for a brain scan which showed his Alzheimer`s. Prior to then, he was treated for depression.
I suspect all other possibilities have to be ruled out just in case your husband has anything treatable.
Have you mentioned your fears of dementia to the medics?
How long has your husband been under investigation? It took over a year for my husband to be sent for a brain scan which showed his Alzheimer`s. Prior to then, he was treated for depression.
I suspect all other possibilities have to be ruled out just in case your husband has anything treatable.
Have you mentioned your fears of dementia to the medics?
It always seems to be a long process in getting a diagnosis and then that diagnosis might not be set in stone. My husband had been showing distinct signs of dementiafor a number of years and after talking to my GP and a referral to a geriatrician, it took a year to have the scans and psychoneurological assessments done.
Initial diagnosis was 'atypical Alzheimers, then it was 'fronto variant', next came non-amnesiac and now it is 'non classical'. In my opinion that just tells me that because he isn't like most other people with Alzheimer's, the experts don't really know exactly what form his dementia takes.
After five years since his diagnosis, that is no longer an issue for me. He obviously doesn't have something like Lewy Bodies or any of the more recognisable sorts of dementia so we continue to plod along as best we can.
Hi there, sending you best wishes. It seems so crazy that it takes so long to get a diagnosis, especially when carers give detailed information about why they think things are not right. As long as it is recognised that there is a degenerative condition that requires continued care and support, I guess that’s enough - as long as this enables carers to get access to the right support for their loved ones and themselves. xx
