Newly diagnosed

butterfly23

Registered User
Jul 27, 2015
1
0
my mum has been in hospital for 9 weeks and has just been diagnosed with Alzheimers at the age of 51, ive said all along it was that, but no one would listen to me, ive had to stop full care of my mum because I cannot physically and mentally cope as she has other issues, mainly epilepsy and they kept on saying it was the meds, shes had an assessment for on going health care, and our neurologist doctor couldn't understand why she didn't get it, I'm worried she wont ever get it, my mum I adamant that can look after herself at home, I'm moving out with my boyfriend before September and I feel guilty at times for leaving her but i want to start a family, I'm really scared no one will help, because at the moment they say she has the full capacity even though the the tiniest things can set her moods off, eg, they needed to move her bed to another room the other night and because she thought is was too late, she pulled down the curtains, I'm so scared and worried, I'm only child at the age of 27, and this has put alot of pressure on my relationship and work, I have family to talk to too but they cant understand, my dad has been really supportive, he and my mum are no longer together, I'm scared the epilepsy is going to bring the Alzheimers more, like the more fits,falls, vacant stares she has the faster it will progress, I'm terrified my mum wont see me marry or have children....
 

Kevinl

Registered User
Aug 24, 2013
6,312
0
Salford
Hi Butterfly, welcome to TP
Just a really big hug to you however you do that in cyberspace, it's a load of brackets and things much too complicated for me.
On the more practical side I'd say just call their bluff, if you say you're going and stick to that then you'll get her a lot more help than if you waiver and let them streamroller you with guilt into doing something you don't want to do and remember they're professionals at doing it.
I (and my wife who has had AZ since she was 50ish) didn't have children so we bred a bunch of free carers in our later years, it's the state's job to help them although they'll do everything they can to squirm their way out and pass the buck to you.
We have 3 children between 26 and 31 and I've told them all if anything happens to me take the toughest line possible with the state about what happens to my wife because if they can pass it on to you they will.
You have to play hardball with them as if you don't they'll walk all over you.
Sorry about the total negativity of all that I've said but you have a right to a life too.
K
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello and welcome to TP.

Izzy is quite right in that your Mum should have had an assessment prior to leaving hospital. If she had one maybe they assumed that you were there at home to care.

Now she is home I suggest you get Social Services to do another needs assessment. I suggest you are present if possible so that you can make it clear that you are not going to be living at home so cannot do full time care. This factsheet will explain more about assessments. You will have to emphasise that it is urgent as she will be alone and is 'at risk and highly vulnerable'. The words in quotes tend to make them take more notice. If necessary put this in writing.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

I hope this helps.