Hello

[Tillou]

Hi everyone, i just registered as my mum was diagnosed with early onset Alzheimer's just yesturday,at the age of 51 and i dont really know where to turn or what to do.

At the beggining of the year she went into N+N hospital in norfolk for a what was supposed to be a 2 night stay so she could have a load of tests done, this turned into a 7 week stay as they were concerned for her safety should she return home as shes home alone all day and does things like puttin kettle in the sink etc when its still plugged in!

She is now staying at a kind of half way house, where she has more freedom and alot of help to do day to day things such as cooking. the hard part is her partner works mon - fri and cannot afford to give up work so mum can come home, as for myself i live 120 miles away and feel totally useless, im toying with the idea of packing up and moving home but not wanting to sound really selfish my life is here now, friends...work... partner etc so im stuck for what to do.

So i was just wondering what our next steps should be really, we are looking into benefits and obviously our main priority is mum and that she is safe and happy, but we aren't sure what support or facillities are available to her. so if anybody knows of anything thats available or would help in the hemsby or great yarmouth area please could you let me know?

Thanks for taking the time to read this sorry its a little long!
Sarah

 

[BeckyJan]

Hello and welcome to TP:
I am so sorry to hear about your Mum especially at such a young age. Please think carefully before giving up your own lifestyle - hopefully there will be other solutions. As the disease advances it can become a true 24 hour caring job and no one can sustain that for long.

Have you thought of telephoning the local Alzheimers Society - they should know what local support is available:
http://alzheimers.org.uk/site/custom_scripts/branch.php?branch=true&branchCode=13234

You say your Mum is now in 'a half way house'; are you getting any advice from that source.

I am sure others will come along soon with their own thoughts.

I hope you find TP helpful and supportive.
Best wishes

 

[lin1]

Hello Tillou
Welcome to TP
Im sorry to hear about your mum .
The diagnosis yesterday must have been a terrible shock for you all .
My advice is not to make hasty decisions , you all need to take some time to get over the shock , your mum is safe so you have some time to think and talk things through .

You will get lots of advice and support from people here.
Other places that will help and advise you and mums partner are .

Your local branches of the Alzheimers society , see the helpline link near top right of this page

Adult social services in mums area, im assuming mum is already known to them , if not do contact them yourselves

Admiral Nurses , these are specialist dementia nurses , that support the family and give advice . They are few and far between but they do have a national helpline you can it online.

Others will be along soon

There are medications that may help to slow the progress of Alzheimers and I hope mum will be offered them soon.

 

[Christin]

Hello Tilou and welcome to Talking Point.

I am sorry to hear of your mum's very recent diagnosis. This must be a very worrying time for all of you, and like Jan, I think the 'half way house' might be able to give you some reassurance on what might happen next.

I have also included a link re recent diagnosis

http://www.alzheimers.org.uk/site/scripts/document_pdf.php?documentID=122

I really just wanted to reassure you that your mum should receive an assessment before the next step, and it does sound as if this is happening. Her partner should also be given a carer's assessment, and offered help with her care. It should be taken into account that he works and cannot stay at home all the time.

Please let us know how your mum gets on. With very best wishes to you all.

 

[seaurchin]

Hello Sarah,

I am so sorry to hear of your Mum's illness.

I look after my husband who is 49 and has been diagnosed with young onset Alzheimer's. I cannot afford to give up work (nor do I want to) and still manage to work with the help of Direct Payments. These payments enable us to employ two carers to sit with my husband while I am at work. They support him and keep him safe while I am not there and they are both lovely people. It is really hard work though being a carer and also working.

Maybe your Mum's partner would want to consider some support like this if social services are in agreement. We were lucky as they were offered to us as an option to consider. It takes a bit to get used to running the paperwork side of things but now I have been doing it for a year and am used to it. It sounded a scary option at first, becoming an employer, but my fears were unfounded. The scheme works really well for us and my husband is able to stay in the family home where he seems happiest for now. I thoght it may be something that you could also consider.

I hope you can come up with a solution that everyone is happy with. I wish you all the very best.

Kind regards,

Helen

 

[Tillou]

Thankyou every1 for your kind words and advice, i forgot to mention earlier mum does not know that i know yet, she doesnt want to tell me but her partner thought i should know, and this way at least i can support him to support her until shes ready to tell me

 

[swannie]

not so far away from you

Hi Tillou
I live in Lincs. and have similar problems where distance is involved. There are a few other things which you might like to discuss. I also had the problem of deciding whether to give up my life where I live but now I know I have done the right thing by staying where I am. Your mum would not want you to give up your friends etc. She would want you to be happy. Time will tell but i think you should not consider moving yet.

 

[MrsP]

Hi - My Dad was 51 when he was diagnosed 7 years ago. My first instinct was to pack up and move as we were 260 miles away, and my step-mother begged me to be closer. My husband resisted, and I'm so glad he did as it would not have been the right thing for me to do. My Dad is now in a nursing home 170 miles away and I visit monthly. The Alzheimer's Society was a great source of support for him locally, but his social workers did need pushing a lot to help out sometimes - don't be afraid to demand!!
Don't rush into anything - this diagnosis is life changing enough.

Kate x.