just properly diagnosed today vascular dementia im just 53. Lots of tests getting here, but I just knew. Feeling strange, like calm I suppose after so long of wondering.... now I know. Would like chat to anyone, but especially younger people that have same. was offered support for a while of a trained nurse today but to be honest didn't take it all in. Myy worst trait at the moment is beating myself up for every dam stupid thing I say or do? please tell me this is normal, well normal to this thing I have ! thankyou. seagull
newly diagnosed
- Thread starter seagull50
- Start date
Hi, I am sorry to hear of your diagnosis, the only thing I would say is reconsider the offer of a trained nurse to help you through this, their help and advice on something they understand could be a massive help to you in respect of coming to terms with this at such a young age and how to help manage this in your life........don't be hard on yourself, it's not your fault you have this and ensuring you understand the disease is vital, a trained nurse sounds like a good step forward in getting some sound advice and help.best wishes x
Hi seagull, I am sorry to hear of your diagnosis, it must be a real shock, especially at your age, I am 54 , so I do empathise....Please take up the offer from the nurse and get as much help as you can. And .keep posting as you are among friends now, who do understand ..Take Care xxx
Sorry I miss read your post and thought you said you hadn't taken the help of a trained nurse but you actually said you hadn't taken it all in
My advice is use as much help and advice you can get, and coming to TP was a great move as you now have a great support network of caring people with a wealth of knowledge x
My advice is use as much help and advice you can get, and coming to TP was a great move as you now have a great support network of caring people with a wealth of knowledge x
Horrid lady at jobcentre
wasnt feeling the best anyway, have stopped work and trying to claim some money now, job centre sent me a letter told me to fill in the enclosed medical questionaire, well there wasn't 1 enclosed! I had to ring their office and she said she couldn't understand what I was saying and kept raising her voice to me like I was some kind of idiot! I didn't understand what she was saying either, but I didn't shout! asked her if she could be a little patient with me as I had dementia, her reply was "she couldnt help that" but she could, she could have treated me with a little compassion.... came of the phone and cried again:
still really dont know how to post on here I expect all my posts are in wrong place I know im stupid!
wasnt feeling the best anyway, have stopped work and trying to claim some money now, job centre sent me a letter told me to fill in the enclosed medical questionaire, well there wasn't 1 enclosed! I had to ring their office and she said she couldn't understand what I was saying and kept raising her voice to me like I was some kind of idiot! I didn't understand what she was saying either, but I didn't shout! asked her if she could be a little patient with me as I had dementia, her reply was "she couldnt help that" but she could, she could have treated me with a little compassion.... came of the phone and cried again:
still really dont know how to post on here I expect all my posts are in wrong place I know im stupid!
Oh Seagull how nasty of the lady at the jobcentre
I was very lucky when I was ATOS assessed as entitled to ESA but fit to work as the lady I got was horrified at how I was being treated and she really helped me to get reassesed
so that I am in the support group
It is horrid when people don't understand she needs to be sent to a dementia friends awareness talk
I was very lucky when I was ATOS assessed as entitled to ESA but fit to work as the lady I got was horrified at how I was being treated and she really helped me to get reassesed
so that I am in the support group
It is horrid when people don't understand she needs to be sent to a dementia friends awareness talk
Thats what I thought too, had a letter today to say because I am on disability allowance already, I should be entitled to more money than the £74 they said, so fingers crossed now. the reason I shut myself away so much is because of the way some people make me feel
especially when Im shopping and take a little longer sorting my money out, would rather stay home
I find money difficult too if I am struggling at the till I usually tell the cashier and so far they have all been very helpful I try not to hide away as it makes me very depressed but there are days when shutting myself in my bedroom is a relief
oh dear thats what i do too, I know deep down its not the answer but cannot get out of my black hole at the moment as much as i want to. its all still sinking in I guess... still keep thinking maybe the doctors have got my diagnosis wrong
Hi Seagull
Sorry to hear about the woman at jobseekers, what a...uncaring person...to say the least.
Is the jobcentre the right place for you to go? I would have thought the new Personal Independence Payment (PIP) would be a better option. I've put in a link to the government website below, this replaces the old Disability Living Allowance (DLA) and I think mobility allowance too. On diagnosis (at about your age) my wife was awarded DLA & mobility allowance (we're still on the old system) and has received them ever since. You can get a personal assessment done by social services and they'll assess your needs and tell you what you're entitled to. Devon CC's website looks particularly helpful (link below) in the lower blue box it takes you through how you contact them, best website of its kind I've seen so far.
Hope this is of some use.
K
https://www.gov.uk/pip/overview
https://new.devon.gov.uk/adultsocialcareandhealth/
Sorry to hear about the woman at jobseekers, what a...uncaring person...to say the least.
Is the jobcentre the right place for you to go? I would have thought the new Personal Independence Payment (PIP) would be a better option. I've put in a link to the government website below, this replaces the old Disability Living Allowance (DLA) and I think mobility allowance too. On diagnosis (at about your age) my wife was awarded DLA & mobility allowance (we're still on the old system) and has received them ever since. You can get a personal assessment done by social services and they'll assess your needs and tell you what you're entitled to. Devon CC's website looks particularly helpful (link below) in the lower blue box it takes you through how you contact them, best website of its kind I've seen so far.
Hope this is of some use.
K
https://www.gov.uk/pip/overview
https://new.devon.gov.uk/adultsocialcareandhealth/
Let's hope tomorrow is a good day better get some much needed beauty sleep! I have been going for walks and each day I try to walk a little bit further so I am tired tonight hope you manage to sleep well much support
Sarah
Sarah
Thankyou for being there for me Sarah, have a good nights sleep xxx
It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living.
Having a joke, more positive day
This morning I accused my partner of pinching my cherry of my belgian bun, I put money on it I didn't eat it! anyway he then gave me his! result
This morning I accused my partner of pinching my cherry of my belgian bun, I put money on it I didn't eat it! anyway he then gave me his! result
This morning I accused my partner of pinching my cherry of my belgian bun, I put money on it I didn't eat it! anyway he then gave me his! result
well done great result!
Hi Seagull
I got my diagnosis at 51, and experienced many of the things you described too.
When I struggle with things my wife always tries to calm me, and reminds me that it's not me but the condition.
You really are not thick!.
You can really tell when you deal with a Dementia fFriend or a jobsworth at somewhere like the supermarket. I often recommend to places that they send an employee to the Dementia Friends awareness session. It really helps people understand a little about what it is like.
On my worst days, when I go shopping I go to customer services and tell them I have dementia and that it makes me slow with money etc. Often they get a member of their staff to go around with me; its really helpful.
It's an awful disease and we really struggle with it. But it's noy you its the condition
I got my diagnosis at 51, and experienced many of the things you described too.
When I struggle with things my wife always tries to calm me, and reminds me that it's not me but the condition.
You really are not thick!.
You can really tell when you deal with a Dementia fFriend or a jobsworth at somewhere like the supermarket. I often recommend to places that they send an employee to the Dementia Friends awareness session. It really helps people understand a little about what it is like.
On my worst days, when I go shopping I go to customer services and tell them I have dementia and that it makes me slow with money etc. Often they get a member of their staff to go around with me; its really helpful.
It's an awful disease and we really struggle with it. But it's noy you its the condition
Newly diagnosed too
I have lived in France for the last 9 years and was diagnosed two months ago. I am just about coming to terms with my diagnosis at the age of 63. People kept telling me I was looking for it when I mentioned I'd forgotten something important, (because both my parents and two grandparents had Alzheimer's); but I knew deep down I was right. I am trying to find new ways to ensure I don't forget important dates, and am trying to stay positive, but I do get very weepy, when I can't remember what someone has just told me. Will things get any better at any time or is it all steeply downhill now?
Sorry if this is in the wrong place, am confused
I have lived in France for the last 9 years and was diagnosed two months ago. I am just about coming to terms with my diagnosis at the age of 63. People kept telling me I was looking for it when I mentioned I'd forgotten something important, (because both my parents and two grandparents had Alzheimer's); but I knew deep down I was right. I am trying to find new ways to ensure I don't forget important dates, and am trying to stay positive, but I do get very weepy, when I can't remember what someone has just told me. Will things get any better at any time or is it all steeply downhill now?
Sorry if this is in the wrong place, am confused
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Hello, I don't have a diagnosis yet but I didn't do too well in my memory test today at the GP. I suppose I was expecting to be told it was just stress, but the doctor was concerned and I'm to have more tests soon. I'm only 43. It takes me most of the day to do the simplest tasks, and I keep getting lost and I've given up on doing most things. My teenage daughters are so exasperated because I forget everything. Today, after the appointment and making some lunch, i sat down to rest for a while and hours later when I went back in the kitchen I realised I'd left the gas on yet again. It's my children I'm most worried about if I do get a diagnosis. I can't tell them, as they are only 16 and 18 and I don't want them to feel they have to be my carer. I am on my own and I haven't got family or friends to turn to, and so it's this that worries me most. The thing I am most struck by when I read this thread, is that people have someone to care for them.
If this is diagnosed, what advice do you give to someone on their own? And I'm very struck by the things I've read; thankyou all so much.
If this is diagnosed, what advice do you give to someone on their own? And I'm very struck by the things I've read; thankyou all so much.
Hi roses-welcome to TP
I expect the GP was doing the standard blood tests as thyroid problems or B12 deficiency can give symptoms of Dementia as can depression. This must be a frustrating time for you and of course frightening.
If you are diagnosed with dementia I hope you have a supportive GP who would be able to direct you to where to get help and this Forum has members who will give you advice and a sympathetic ear.
Whatever you do I would advise not looking too far ahead-get the facts first from your GP. Of course, it would be great if you continue posting here with your concerns.
Take care
Lyn T XX
