I am stuck between a rock and a hard place

top_drawer_2

Hello

I've posted in the past regarding my sister who has a learning difficultly and is successfully learning to read/write. They go camping every week Thursday - Monday and she hates it as they do nothing, sit in the caravan and watch TV etc. It is mad, they even leave the dog at home!

I moved back to my parents and have been commuting to work (around 1 hour, 2 buses) and was thinking I would move back when the mornings start to become darker. However, I am stuck between feeling that I should stay around to offer something to my sis and returning to living is a shared house, nearer to work (which I hated, but I had more autonomy / less criticism / negativity etc) and a job I don't like.... but I have friends there.

In an ideal world I would be able to to influence things to try to get my sis some of what she needs but my Mum doesn't seem to respond to basics of "What will X think?" I've tried .....

MORE INFO

I could carry on for hours about some of the things my Mum does which irritate me but in short I guess

I am finding it frustrating as I vividly remember being at this age and know that soon certain avenues will close for her and that will be it. At the moment she spends the week mainly with a lady who came to us through an agency and who my Mum has now employed, in effect. She is completely infatuated with this lady - refusing all other carers who may be available when she went on holiday.

She goes to this lady's house for dinner or a brew / has her nails done and bakes on occasion - its supposedly directed by my sis, but since sis has very narrow ideas they tend to stick to the same activities. Its all very short term, imo - like no long term benefit can be got out of it.

Sis has an opportunity to go on a scheme which places disabled people as Cafe Assistants in leisure centres with all the mentoring and support, for £35 a day. Sis was keen on the idea and when we went to meet the Cafe Manager all seemed well. I thought she would fit in well as she very social and quick despite her disability.
My Mum isn't keen because its a job in effect; no flexibility in terms of what day you decide to turn up so could interfere with them going camping / doing their own thing, plus its fairly expensive and she doesn't see that its not a case of "free work."

They're £500 into their overdraft (which to me seems mad, considering they have a good income, despite not working), which she twitters on about constantly. However, yesterday she was on fb telling someone she will "try to donate again later, as the site seems to have failed" having a look it seems to be some horsey/animal rescue site.

Thanks for listening.

paulineb_2

What do you think would change for your sister if you stayed there and didnt move into a shared flat?

I also hope someone is around to care for the dog if you decide to move out of home again.

BitterAndTwisted

It seems that your presence in the family home is having absolutely no beneficial effect on your sister's quality of life, so I would suggest that you think very carefully about your own future and make your own plans.

top_drawer_2

paulineb wrote: »

What do you think would change for your sister if you stayed there and didnt move into a shared flat?

I also hope someone is around to care for the dog if you decide to move out of home again.

I would struggle to continue teaching her to read / write as I'm not sure how she would cope with skype (or even whether her laptop has capability). I am around, I fight her corner, be positive when she is upset over things (as opposed to being unpleasant), offer solutions, take her out with me places, try to encourage her to sit downstairs to eat (as opposed to eating in her room), I make her the same food as I am having when I am doing mine (means one less packet meal / cuppa soup type thing for her), I tell her she looks nice (rather than being too wrapped up in myself to notice, as my Mum is), I spend time with her - letting her teach me make up etc.

Its not much but I would have killed for it when I was in her position.

The dog is well looked after, he is the 4 th child in this household and treated far better than child 1 and 3.

TD

pinkshoes

Is it possible for your sister to move with you? (Share a flat)

paulineb_2

Just mentioned about the dog as you said when they go camping the dog is left at home and wondered who else would look after it, but I assume theres someone else in the house as well apart from you.

top_drawer_2

paulineb wrote: »

Just mentioned about the dog as you said when they go camping the dog is left at home and wondered who else would look after it, but I assume theres someone else in the house as well apart from you.

My Mum employs a dog walker regardless of whether I'm here or not. She doesn't walk him herself as she claims to have a surgery scar causing pain / preventing.


Its not possible for us to move in together; my Mother wouldn't allow it for various reasons.

chella

top_drawer wrote: »

My Mum employs a dog walker regardless of whether I'm here or not. She doesn't walk him herself as she claims to have a surgery scar causing pain / preventing.


Its not possible for us to move in together; my Mother wouldn't allow it for various reasons.

how old is your sister, if she is an adult can mum legally not allow her to live with you?

top_drawer_2

paulineb wrote: »

Just mentioned about the dog as you said when they go camping the dog is left at home and wondered who else would look after it, but I assume theres someone else in the house as well apart from you.

chella wrote: »

how old is your sister, if she is an adult can mum legally not allow her to live with you?

She is 20, however, her money isn't paid to her as she is judged not to have capability. The authorities would never sanction her moving with me as her needs cannot be met in living with me as fully as they can (supposedly) be met by Mother.

Plus my sis is very attached (read dependant) on my Mum.

Please, there must be other people somewhere, in similar situations!! I can't be the only person who has a narcissistic parent and a disabled sibling.

itsmecathy

How about seeing if your sister is interested getting an advocate, or developing her abilities to say what she wants to happen in her life? People First are a good place to start.

It sounds as if you don't have a very high opinion of your mum, and that she doesn't listen to your view of the situation, maybe see if someone independent could give some advice on other options for your sister? I would think that there might be a group locally for people with a learning disability to learn to read and write. This might help her get some friends or expand her horizons a bit.

Octobergirl

Hi top-drawer,
I totally empathise with you, I have a disabled daughter who I would walk over hot coals for......whilst focusing on her equipment, therapies, the right schooling etc, I am very conscious of developing her self care and support networks as much as possible. I'm not going to be here forever and frankly it is too intense and draining for one or two people to meet her needs, provide entertainment etc.

On the flip side it has been incredibly difficult to enable other people to care for her and i'm pretty sure some people think i foster my daughters dependence( nothing further from the truth, I hate it).

my daughter becomes anxious, is set in her ways etc (she's 7) and like your sister is reluctant to allow other people to help- its taken a year for my daughter to accept a new worker taking her to Brownies, and that was by extending the time i wasnt there by 5 minutes each time..

In addition, it's blooming hard to maintain support workers for any length of time and constantly finding suitable people can become draining in itself...It may be that your mum has tried, but found it very hard work to set up and maintain networks of support?

Does your sister have a social worker? Can you speak to them privately about your concerns, or if one not involved, maybe ring the duty social worker for a chat about where you go with your concerns?

Is there a specific charity that focuses on your sister's disability., maybe someone there you can approach.....it must be a situation that comes up time and again.

there should be a Carer's organisation near you...maybe they could give you advice?

What does you mother gain with this situation......and what would she loose if it stopped? Can you introduce ideas about what she could do with her life if your sister was more independent?

caring for a disabled child is all consuming, maybe she's scared about what she will do if she doesn't have that role?

Have you spoken to your mum re her plans if they were not able to care for her i.e. if they were killed in a car crash tomorrow have they recorded in their will / anywhere what will happen to your sister in terms of care?
If not maybe this needs to be thought about and put in black and white...it might make them realise they need to plan ahead for others to be involved?

Just throwing thoughts out, you sound like a very caring, thoughtful and pragmatic sister. X