Hi - care for 27yr old daughter

[pollyanna3]

Hi there
I am my daughter's sole carer and really need to chat with people about planning for the future when I am no longer here or unable to care for her - scary thought!!

[rosemary]

Morning Jane,

Welcome to the forum.You will find find others on here that think along the same lines as yourself.
Do you feel comfortable enough to tell us a little about your daughter?

Rosemary

[Bluebird]

Hello Janeh and welcome to the forum

Lots of lovely people on here to help and support you.

Bluebird

[pollyanna3]

Hi Bluebird
Thanks for the welcome.
JaneH

[pollyanna3]

Hi Rosemary
Thanks for your welcome. As my lovely daughter has a combination of difficulties I have found it impossible to find a parents group where I 'fit'. She has no vision (septo optic dysplasia), and autistic tendancies which she has really learned to manage over the years - she still finds new situations and meeting new people are still quite stressful. Along with this she has a medical condition called panhypopituitarism - she takes regular meds and we have an emergency injection to give if she becomes very unwell.
I gave up my job as SEN Parent Advisor, when she finished college at RNIB Redhill and I put together things for her to do, we do get 8 hours respite using Direct Payments.
When I spoke with her Social Worker about planning for the future, she seemed to think that when anything happens to me my daughter would continue to live in our flat with some support!!! Ideally **** would need to share a place with another couple of young people, not necessarily with exactly the same disabilities and have 24 hour support available on site. Not sure how I would begin to go about finding out if this is possible or has already been done successfully by another group of parents??
It has been very therapeutic just typing this out.... I just havn't got contact with any other parents in the same boat.!

[rosemary]

Thanks for sharing these details Jane.To be honest I had to use google and look up several of the terms you used.

When I spoke with her Social Worker about planning for the future, she seemed to think that when anything happens to me my daughter would continue to live in our flat with some support!!! Ideally Lissa would need to share a place with another couple of young people, not necessarily with exactly the same disabilities and have 24 hour support available on site. Not sure how I would begin to go about finding out if this is possible or has already been done successfully by another group of parents??

We have a lovely lady on here,Pam, who has been through this process recently.I will send her a pm and ask her to either post here or pm you about what she has arranged for her daughter.

It has been very therapeutic just typing this out.... I just havn't got contact with any other parents in the same boat.!

Caring roles differ so much but on this forum you will find we are all united in supporting each other.
Swings and roundabouts too.One day you come looking for support,next you are giving it.

I hope you gain from finding the forum.It will not take you long to get to know some of the 'faces'.


I found Pams post about her daughter.... click here

[Myrtle]

Hi Jnae and welcome

[pamr]

hi janeh and welcome to the forum.

just to let you know that i have sent you a private message. i hope it has come through ok. if not let me know.

pam x

[krys]

Hello and welcome to the forum

[Tessie]

Hi and welcome