Elderly Parent who is a carers & planning for the future — Scope | Disability forum
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Elderly Parent who is a carers & planning for the future

AJSMucca Community member Posts: 2 Listener
Hi everyone,
I'd really appreciate some advice and help. My parents have been the main carers for my sister the whole of her life. My Dad died at the end of last year leaving my 79 year old mum and 55 year old sister who has cerebral palsy.

My sister has carers who come in to help get her up/washed/use the toilet etc 5 times a day but their world has shrunk so much since my Dad passed. Dad drove, my mum can't. Dad dealt with bills and 'officials'. My Mum has struggled to pick all that up. They negotiated an extra 3 hours a week of support on my sister's care package so they could get a driver to take them shopping but it feels desperately inadequate.

I live in Canada but have another sister who lives in the UK and is amazing. She's there when she needs to be and gives the practical help that I can't

Both my Mum and Sister are so resistant to change. Both myself and my sister have tried talking to my mum and sister about her personal budget and using that for more care but they both refuse to engage. They're both grieving and are struggling with change. I'm not sure they know how to change.

We really want to have a conversation with them about planning for the here and now and planning for the future but again both refuse. We both tried a couple of times but we get shut down. I know it must be scary and hard. 

My mum isn't going to be around forever. I have no idea how to help them plan, what happens when my Mum does pass, what options does my sister have, how can i get them to a space where they can talk, even if it's just small conversations to begin with? I dread getting that phone call telling me something has happened to my mum.

I'd be really keen to know if anyone has been in a similar position. If there is somewhere I can go to research options for my sister? Help I can give them both, even if it's just reading we can leave around the house for them to look at in their own time.

many thanks


  • Penny_Scope
    Penny_Scope Posts: 3 Listener
    Hello @AJSMucca

    I'm sorry to hear about the loss of your Dad - it must be hard for all of you.

    As you say, it is very important that there is a plan for the future for your sister. It is really tough to get this type of conversation started but it is so important that you all to know what your sister's wishes are for her future.

    If talking about the future [when your Mum does pass] is too scary for them to think about at the moment, perhaps you could persuade them of the importance of having a contingency plan in place - that way they wouldn't need to worry if your Mum became poorly and needed some help or someone else to look after your sister for a time.

    There is some useful guidance on emergency and future planning on the Carers First website here

  • AJSMucca
    AJSMucca Community member Posts: 2 Listener
    Thanks a lot for your advice @Penny_Scope the ‘emergency planning if ill’ route might be easier for them to open up about. There are some great points in the articles in the link that you sent that I’d never even considered - things like medication, power of attorney and the priority services register. 
    I’m going to share it with my sister and ask her to leave them with the mum/sis to read (hopefully). I know it’s slow steps sometimes. 
    Big thanks again. 


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