• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

my mum is 62 my best friend and I have no idea what to do?

Sparrowlegs

Registered User
Jul 9, 2015
19
Since my sister died two years ago in April my mum said that she would crack up well I guess she has!! In the past seven months I have noticed her behavior change, she is forgetful, repetitive and always talking none stop but it doesn't make sense. Then there is her mobility it got worse she kept falling then she stopped eating or drinking much and I tried so hard to get her back to herself but GP took so long to hear my plea. Following two weeks in hospital recently and lots of scans the MRI showed mum has brain shrinking and damage... since this I have freaked out totally. so many are saying that I have to give up work and care for her, which I will do but what happens when my mum isn't here anymore and how long does she have and what do I do? is dementia just a prolonged death sentence????
I'm mortified as is my mum, she understands at the moment that she is losing her 'marbles' as she puts it but is happy sleeping and watching tv!!
Help
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,669
Merseyside
Hello & welcome to TP.

Take a few deep breaths & try to relax.

The diagnosis is a shock but life goes on.

You don't have to give up work. You do have options.
Where social services involved before your mum was discharged?
 

Sparrowlegs

Registered User
Jul 9, 2015
19
thank you cat 27

no social services were not involved. I have been dealing the best i could with mums worsening mobility and frailty on my own until the GP finally did bloods and found mum had AKI so she went to hospital for two weeks in that time I wasnt being told much then a lot of aid equipment arrived and they discharged her with no package of care, recently she fell a lot again and it wasnt until the ambulance crew that came out that things have started to slowly be kick started.
I still keep thinking that I have to give up work tho as the GP said as much in so many words!!!
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,669
Merseyside
Don't be guilt tripped into doing something you don't want to do.

Contact social services tomorrow & ask for an urgent assessment for your mum. They can organise carers going in or respite in a home or even residential care if needed.

Contact your local Alzheimer's society & they will be very helpful.
 

Sparrowlegs

Registered User
Jul 9, 2015
19
Don't be guilt tripped into doing something you don't want to do.

Contact social services tomorrow & ask for an urgent assessment for your mum. They can organise carers going in or respite in a home or even residential care if needed.

Contact your local Alzheimer's society & they will be very helpful.

I will admit it is a daunting time and I am still trying to come to terms with it, we still havent had an exact diagnosis of which dementia it is or the prognosis, which I hope to be getting on tuesday! Im just so scared right now and cant see anything good about all this, sorry if I seem doom and gloomy!
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,669
Merseyside
My dad was only diagnosed in spring & I was totally overwhelmed.
This place is my lifeline. I've had so much help & support here. Please keep posting & ask any question you have.
We really do understand.
 

Sparrowlegs

Registered User
Jul 9, 2015
19
My dad was only diagnosed in spring & I was totally overwhelmed.
This place is my lifeline. I've had so much help & support here. Please keep posting & ask any question you have.
We really do understand.
thank you
My friend who is a research doctor for the Alzheimer's society told me about this forum and im so glad she did :)
 

Beate

Registered User
May 21, 2014
11,846
London
People have no business telling you what to do with your life, and giving up your job is your decision alone. Just please remember that no person has to look after another. The only one with a duty of care is the state. So contact them tomorrow and tell them to help you. Say there is a "vulnerable person at risk". They can't not react then. I know authorities like to blackmail relatives into caring because it's cheaper for them. But you have the right to a carers assessment and all sorts of things like day care, sitters, respite or carers ought to come your way so you can continue working.

You could also contact your local Age UK, Carers Centre and Alzheimer's Society for practical and emotional support and help with filling in forms.
 

Sparrowlegs

Registered User
Jul 9, 2015
19
People have no business telling you what to do with your life, and giving up your job is your decision alone. Just please remember that no person has to look after another. The only one with a duty of care is the state. So contact them tomorrow and tell them to help you. Say there is a "vulnerable person at risk". They can't not react then. I know authorities like to blackmail relatives into caring because it's cheaper for them. But you have the right to a carers assessment and all sorts of things like day care, sitters, respite or carers ought to come your way so you can continue working.

You could also contact your local Age UK, Carers Centre and Alzheimer's Society for practical and emotional support and help with filling in forms.

These replies are so encouraging, thank you, I am a paramedic so really didn't want to give up work as i am good at it!! someone said to contact citizens advice??
 

Beate

Registered User
May 21, 2014
11,846
London
For form filling? Unless your workplace has made noises about you giving up your job, I would think that social services and the above charities are probably the first port of call.
 

Sparrowlegs

Registered User
Jul 9, 2015
19
For form filling? Unless your workplace has made noises about you giving up your job, I would think that social services and the above charities are probably the first port of call.
ok thank you I will get on it first thing tomorrow again thank you :)
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
These replies are so encouraging, thank you, I am a paramedic so really didn't want to give up work as i am good at it!! someone said to contact citizens advice??
Please don't give up your job. I am a mum and I would be devastated if my only daughter compromised her own future in this way. Starting point for your discussions on finding appropriate support for your mum must be that you will continue to work. Don't be bullied or guilt-tripped by anyone least of all social services. Your responsibility is to make sure your mum has the proper care but this does not mean you have to do it personally.
 

Sparrowlegs

Registered User
Jul 9, 2015
19
Please don't give up your job. I am a mum and I would be devastated if my only daughter compromised her own future in this way. Starting point for your discussions on finding appropriate support for your mum must be that you will continue to work. Don't be bullied or guilt-tripped by anyone least of all social services. Your responsibility is to make sure your mum has the proper care but this does not mean you have to do it personally.

aw thank you, you are right my mum doesn't want me to give up my job and neither would have my sister! I guess I struggle also with accepting help, my family has been through so much as many families have and we have always gone it alone. I know that this time I have to ask for help but its a little harder when you are a proud person. I will get there im sure
 

Beate

Registered User
May 21, 2014
11,846
London
Be proud to get lots of help, like the Queen! Or, if that suits better, pretend to be Gru trying to acquire lots of Minions so you can go out and steal the moon! (Well, you get my drift. Hopefully.)
 

Sparrowlegs

Registered User
Jul 9, 2015
19
Be proud to get lots of help, like the Queen! Or, if that suits better, pretend to be Gru trying to acquire lots of Minions so you can go out and steal the moon! (Well, you get my drift. Hopefully.)
Lol yes I get yr drift and it was a good drift made me smile :)
 

cragmaid

Registered User
Oct 18, 2010
7,942
North East England
Have you got a Union Rep at work? If not do you have a supervisor, because you ... I was going to say" should" there but won't,:eek:. There's enough shoulding and musting being said:rolleyes:..... you might find that a friendly word could ensure that if you need to change shifts or seek compassionate leave quickly at any time...it will be granted more easily if the full story is already known.... OK I only said it might:rolleyes::rolleyes:

If you want or choose to give up work to be with Mum, then that is your decision but no one has the right to force, bully or put pressure on you.:mad:

It is still early stages. Wait for the diagnosis, talk to Mum and the GP and the SS Adult social care and the re-ablement team from the hospital if necessary. Gather your information and then start looking at options.

By the way, I lost my sister early too...I still haven't forgiven her for leaving me to deal with Mum alone...well alone apart from another sister 7000 miles away. :rolleyes::D so you have sympathy.
Keep posting.x.
 

theunknown

Registered User
Apr 17, 2015
398
My only offering from a personal point of view is; that I've accepted the mother I've got now is not the mother I grew up with. Fighting against what you're dealing with is so upsetting. I want to help my mum, but I know that I can't contribute anything positive anymore. I'm there, but it's for me rather than my mum.
 

Sparrowlegs

Registered User
Jul 9, 2015
19
Tell me how can I go back to work when my mum really needs me 24/7 can the system really work without putting my mum in a home which neither she or I want?