Now have diagnosis - and that's it?

[esmerelda]

OK, so here goes ...

We had our consultant appointment with Mum last Thursday - told it would be an hour and it was about 25-30 minutes, only Mum, me and my sister and the doctor.

He explained what they'd found (through a scan, Addenbrooks test and home visit from a mental health nurse). Alzeimer's, probably middle stage - we knew something was not right 5/6 years ago and things are moving relatively quickly - loss of speech occasionally, unable to sign name more and more.

But we seem to have fallen off the edge of a cliff and there's no one there to help or advise - will we get more help or contact or is a prescription in the post the support we can expect? Because that's what it sounds like at the moment, move to 10mg in 56 days time via a prescription in the post and a lot of talk of how many people have this (very general) diagnosis which sounds as if it means no help.

Is there a how to get started guide? Oh dear doesn't that sound cold - it's not meant to but we need help to help Mum. We're a late diagnosis, I guess, and that's why Mum's moving more quickly?
thanks
E

 

[Grannie G]

Hello esmerelda

Falling of a cliff is as good a description as any and I know just how you feel.

There are lots of fact sheets you should fund helpful and I suggest you start at the beginning with After a diagnosis.


You will find other fact sheets here.

I hope they help.

 

[lin1]

Hello welcome to TP
I too know how you feel , It seems hardly anything has changed since my mum was diagnose many yrs ago.

Have you been given a number to contact their are any problems., if so do phone them, maybe its in some leaflets if you were given any.

I suggest you contact your Local branch of the Alzheimer's society
Amongst other things you will find their national helpline here,

http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

Your local branch will run things like dementia cafes , run courses , help with claiming benefits, which reminds me mum is entitled to a reduction or disregard of council tax

You can self refer to Adult social services
Mum is entitled to an assessment
and you are entitled to a carers assessment of you own needs ,
Their are some good social workers out there

I am afraid it is often the case that the squeakiest wheel gets the most oil.

Feel free to ask questions , we will do our best to help

 

[sue38]

Hi and welcome to Talking Point.

Your experience is similar to ours, and it's depressing to read that in 8 years not much has changed. Fortunately I found TP, where I learned everything I needed to know, and people to support me.

Is there a how to get started guide?

Were you given a copy of The dementia guide? If not you can download it from the link, or order a free copy. I'm sure I would have found it really helpful if it had been around when my dad was diagnosed.

 

[jeany123]

Hello esmeralda and welcome to Talking Point, most of us know exactly how you feel, they encourage people to see their doc then when a diagnosis comes there is no help from them,

you will get lots of help and support on here,

 

[jaymor]

Hello and welcome from me too.

Lots of helpful advice given

The assessments will move you forward, Mum's assessment will highlight her needs and what needs putting in place. A carers assessment will highlight what is needed to help you, the carer.

You won't be on your own, you have joined TP. All of us on the forum both suffers and carers understand just what you are dealing with and how it affects you. We can answer your questions, we talk openly, nothing is off topic. I have learned so much from being a member here, maybe we should suggest a few of the professionals who profess to know it all, join the forum and learn what it is all about.:

Please keep posting and use the help and support. Come on for just a chat if everything is going ok and come and have a good rant when it is not going so well.

Take care,

Jay

 

[marionq]

You should get monthly visits from a CPN to check medication. Here in Scotland we get a Link worker for a year if there is no medication. You should also be contacted by a charity such as Age UK or Alz Soc to help you with forms etc. they should also put you in touch with a range of activities and resources. I guess each area differs according to how much pressure they are under with numbers and funding.

 

[esmerelda]

Thank you all so much for the helpful advice - Dementia guide is a great resource and no we weren't given one or pointed in it's direction .... we only got the prescription, literally

You can tell that I'm still new at this as I feel as if I should "do" something. Reading the posts suggests that I should save my energy for the time ahead.

Mum's obviously trying to make sense of things today but the (relatively) advanced state of the syndrome means that this is tricky. She spent time proving that she didn't have any problems and could still look after herself. I reminded her that the Indesit logo on the washing machine didn't do anything and she had to press the start button, she kept pressing the lighter button on the oven for 5 minutes to make sure it lit, hung out her own washing - a worry after 2 recent falls, demanded to be "dropped" at the shops to buy a new mop - thought getting down on her hands and knees and scrubbing the floor was an option but I pointed out she'd never get up as her knees wouldn't let her - dirty look from passerby - and refused to see a possible provider of help/care. All quite normal then. On the other hand she liked the idea of a hair appointment (new hairdresser after 30+ years because of increasing mobility problems, fingers crossed) and offered to take me out for lunch next time I'm there because she hasn't been out for so long - apart from buying the mop.

No doubt I'll be back here before too long .... in the mean time, time to add a few more items to the 'Mum to do list' and then sleep.

E

 

[Kevinl]

Hi E
"Now have diagnosis - and that's it? "
About sums it up, did you expect the nursing equivalent of The A team to step in, unfortunately you'll find help while you're still in they're won't be very forthcoming, there are a lot of things you can do as recommended on here, but ultimately there is very little practicable help available, just a load of busy people who listen then go.
They normally wait for a crisis before they kick in.
K

 

[Dustycat]

Agree Kevin. That's what I've found. X

 

[Clovie]

Hello

My Mum was also diagnosed at Addenbrooks. We received a diagnosis on the 11th May and like everybody else has said, we've received no help. She has only just turned 66 so we thought that perhaps her age was a factor in the lack of help. Seems not after reading this post. I'm still at a loss as to what we should do. They haven't prescribed any medication but she can't and won't be left alone so my Dad is dealing with it on his own. He is now on anti depressants himself. Thanks for listening


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