Just been advised I got dementia

[Jane12345]

I'm a little confused and shocked I'm fourty years old I recently had a mri scan I am awaiting results from my doctor
I had a appointment but this was cancelled and a telephone call was replaced the doctor advised me yesterday that I have vascular dementia the start of it I have been in shock since last night I have no idea how long I have until it develops I'm am scared I have four children and have recently separated so I am alone can any one help me out with so information I feel my doctor has dealt with this terrible but hay any advise please thank you

 

[Clueless2]

Dear Jane,
Welcome to Talking Point.

I am hoping that a more experienced member will be able to re-post your request on the forum.

I am sorry that you have had such a devastating diagnosis, with so little support offered to you from the start. On this forum you will find plenty of wise counsel.

A good first point of call would be to your local Alzheimer's Society, hopefully you will be able to find a link for them online.

Secondly, you are not going to change overnight, you are still the same lovely mum that you were this time last month.

I am guessing that your children are still quite young, so on a practical level you could begin to think about which members of your family and friends you would like, and can trust, to help you with appointments, paperwork etc.

Good luck

 

[Grannie G]

Hello Jane

What a dreadful shock for you. I`m horrified you were given the diagnosis over the phone instead of in person.

There is a factsheet from the Alzheimer`s society especially for people who have a new diagnosis. It`s here and I hope it helps.

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

Please take some time to have a look at the factsheets but do continue to post here too because there will be a wealth of help and support for you.

The factsheets are all here.

https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137

 

[Rich PCA Carer]

Jane, what a horrible position you have been put in. It is hard enough to be given a diagnosis in a heavily supported and caring way. It is, quite frankly, utterly unacceptable for you to have been notified in this unthinking and cruel manner. You desperately need support and guidance. I suggest you phone your local Alzheimers Society office and talk to a Dementia advisor about how to take this forward.

In the short term, you need to take a lot of deep breaths and take it carefully. Nothing is going to change quickly. There is time to think and plan.

You will find that there is a lot of support out there, but it is all disjointed, offered by different organisations and you will need to find it and pull it together.

Vascular dementia is related to your vascular health so you need to press your GP on how you can improve it. You also need a formal letter stating your exact diagnosis.

All of us on TP are here to help, we are in similar, but different positions. We care about you and will help where we can. Please keep posting.

If you feel able, it would help to know where you are, in very general terms, so that we can direct you to local services. Do you have close family, friends and neighbours who would be willing to support you?

Huge hug.


Sent from my iPad using Talking Point

 

[chickenlady]

new diagnosis

if you haven't already ask to be referred to a specialist dementia nurse through your local mental health trust, he or she will guide you through the early few weeks. Pop along to your local dementia cafe and speak to one of the advisors and hopefully you'll meet other people and their carers. The next few months will be busy with setting plans in place, especially about guardianship, lasting power of attorney etc. The dementia cafés are there to help and not everyone is old. Don't panic, be careful to explain to the children in easy stages so that they have chance to get used to the idea that mummy can't remember things and get them helping with ticklists and reminder charts etc. It's sad and upsetting but don't let your perfectly understandable anxiety get in the way of enjoying your children try to do silly and funny things together to have things to look forward to and for them to look back on such as dancing barefoot in the rain just because wet grass tickles your toes, the children will giggle and will remember it for years to come. Good luck!

 

[jhoward]

Just a note to say I'm thinking of you, Jane (not that that makes much difference, I guess) and wishing you well. As I'm sure you've seen already, there's good experience and advice here. (not to mention tons of good will!)

 

[john51]

Jane my thoughts are with you.
I was 51 when I got what sounds like a similar diagnosis.
I would say start living life. Get used to the new normal and enjoy yourself.
A thought... what do you do for a job? If you have a union let them know as soon as possible. If your consultant isn't supportive you may need the union support soon.
Keep posting and all the best
John

 

[Norrms]

Hiya, Norrms here, i myself was diagnosed at aged 50, right years ago, i also had a MRI scan which i was told could not show if i had dementia, it could only show what it was, IE anuresm etc, so i then had a PET scan which showed i had dementia, please please ask for a second opinion my friend xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[jhoward]

I'm a little confused and shocked I'm fourty years old I recently had a mri scan I am awaiting results from my doctor
I had a appointment but this was cancelled and a telephone call was replaced the doctor advised me yesterday that I have vascular dementia the start of it I have been in shock since last night I have no idea how long I have until it develops I'm am scared I have four children and have recently separated so I am alone can any one help me out with so information I feel my doctor has dealt with this terrible but hay any advise please thank you

What a shock this must have been indeed. Such a moment to be feeling alone: I really feel for you.

There is quite a lot of help out there - the thing is to find it. Have you looked through the internet? I'm sure your doctor if you talk to him strongly will take some steps. It might be worth thinking of social services too...
And as people have said, this is a great place too.

 

[creativesarah]

I picked up a doctors sick note and vascular dementia was written on as the illness, I had no idea about it. My Gp was very apologetic she assumed the consultant had informed me.
I live by the motto 'Don't curse the darkness light a candle' and I try to make the best of life that I can. I was diagnosed 6 years ago and I have remained stable in fact in some areas I have improved. So it's probably not as final as I thought it would be
Much support
Sarah