Needing help from family: the conflict between needing their help & wanting them to not have to

Snowbelle

As a disabled person who needs help, how do you navigate that place between desperately wanting your family to help you because you need the extra help, but at the same time wanting them to not have to have the restrictions of providing care for you.

I've just had a conversation with my mum who I currently live with.  I had carers coming in until Covid when she agreed to take over my care until it was safer.  But we need to find new accomodation and after previously having said I could live with her, she's now said I can't (and not even temporarily if it takes me longer to find an accessible property) because she can't handle the idea of carers coming in & out of the house she's living in.   
Last week she had refused to have a lift that the OTs were offering installed, because she didn't want her home 'to look like a nursing home'.

I feel trapped in a place where I feel like I understand her decisions and desires, I want her to be free to travel, to be comfortable in her own home, but equally I'm heartbroken that my mum won't make sacrifices in terms of having a lift installed or having carers coming in & out - when it feels like the differences those things would make to my life would be huge in comparison to the sacrifices she would be making for them.   Then I wonder, am I expecting too much, are those are unrealistic expectations to have of your parent - to be willing to make sacrifices like that?

I'm concerned about the reality of trying to find somewhere for me to move into before we have to move out of our current home (I had been keeping an eye out but hadn't seen anywhere in the last 6 months that is accessible & close enough to my support network).
I'm concerned that my health has a history of fluctuating and that if it deteriorates again (which seems like a realistic probability in light of upcoming stresses & energy demands), that a 4-times a day care package won't be enough.  which means potentially moving in & out of residential care,(in my mid-30s) when I'm unable to cope with 4-times a day (or whatever I get given by social care if it's less).

Thanks.

janer1967

Hi and welcome to the community and for sharing your situation with us. I dont really have an answer for you I can onlyu imagine the difficult situation you are in

Have you considered supported living where you have your own lace but there us support for you when needed (sorry dint know the right name for it)

In regards to are you asking too much as a mother I would sacrifice anything for my child but I was up against a similar situation after becoming disabled I was about to become homeless but my Mum never even said if that I could go stay with her if that happened to which I was quite upset

However I understood my mum has become very set in her ways and used to living her way

Have you had a needs assessment or spoken to social services

Snowbelle

Thanks @Janer1967.  I really appreciate your reply.

I have looked into supported living a bit.  There seem to be so few places available for people with physical disabilities.  The waiting list is usually years.  There was a place that was available but the deadline for applying was last week & I didn't apply as I thought I was going to be building a house that would have suited my needs & with my mum building one next door - but suddenly that option is no longer. 
The other issue with supported living is cost - if I moved into supported living, it would eat through my savings pretty quickly.  If I want to try living in my own property, then I need to try that first, as once I've been in supported living a few years I wouldn't have enough savings.  
I think the extra costs of the support in supported living is equivalent to paying a PA about 20-25 hours a week. (although if you dont have savings & are on housing benefit then it's paid for).

I'm so sorry you faced a similar situation and that your mum didn't offer that you could live with her.
I think what makes it hard is knowing that there are parents who would sacrifice those things for their child without question.  it would be much easier to cope with if all parents had the same reaction.  I guess because it maybe triggers subconcious thoughts to do with how much they love you, or about them fulfilling their role to protect you & look after you.  Even though I know it's not that straight forward. 

Yes, I'll need to speak to social services again.  I just struggle to feel heard with my social worker, and I've just found out I'm probably about to lose my job & have my career ended & need to look into ill-health retirement - so it's just a lot all in one go & might be a while before I can manage energy to contact the social worker.

janer1967

@Snowbelle It seems you have a lot on your plate.

I think as I am in my fifties my mum probably didnt even think of offering me a place with her despite several conversations around my situation. But I never asked and she never offered

I am sorry to hear you are about to lose your job and if you need any advice I was a HR professional for over 30 years xo very familiar with ill health retirement process

I understand it may be better to try and live independant rather than supported housing, have you had a needs assessment completed by social services, or looked at your local council

The shelter organisation also can be helpful  and may be able to give you some advice

chiarieds

Hi @Snowbelle - I'm ever so sorry to read that you're no longer able to have a home built next door to your Mum. The only thing I can think of is, would it be an option for you & your Mum to buy a property with a ground floor annexe (hopefully disabled-friendly; if not, one that could be converted)? That way you would have your separate entrances, so your Mum wouldn't be disturbed by carers using yours).

Cher_Alumni

Hi @Snowbelle I wondered how you were today?  I hope the replies you received helped.  

You mentioned that you have just found out you are probably going to lose your job  I'm sorry to hear that.  That's an awful lot to deal with in addition to your housing situation.  If you need any help please let us know.  

Snowbelle

Thank you very much @janer1967 @chiarieds and @Cher_Scope. 
Sorry I'm struggling to reply as feeling so overwhelmed & hurt, it's leaving me lost for words.  I really appreciate your replies.

Cher_Alumni

@Snowbelle You are very welcome  When you are ready to talk we are all here for you, just give us a shout.

chiarieds

You're most welcome @Snowbelle - Just hoping today's a better one for you, & that you'll find a way through your problems. Just chat here when you want to.