Disabled sister and caravan

top_drawer_2

Hello,

I've previously posted these threads and they stand as true today. However, things seem to have heated up further. I overheard my Mum talking on the phone and it seems there is some money set aside for respite to be spent by time in a home for disabled people or to put towards a holiday in the UK.

Mum has decided to put it towards the caravan they already have ... after the phone call I asked what this was about the caravan and she said "Oh well as we can't afford the caravan at the moment" (they have had to store it through the winter + live way beyond their means, anyway) "the money can be used to pay towards the caravan as T uses it with us."

She went on to say the placement available at the home is "unsuitable" in a very dismissive manner and goes onto claim "people have said that this place isn't right for someone such as T, its for people who have many more needs" I questioned "People..." and she said "mm yeah people who should be encouraging her to send T to this place.... "

I would imagine it isn't perfect .... but still.

I pointed out that T would love a week at Haven / Pontins et al doing activities and she says"there would be no -one available as I can't afford hourly wages to pay a support worker" I said well I would go with her, she claims that she didn't think I would be available (although she has never mentioned it). Keeping in mind that I've been off work for nearly a week as I am a casual / bank support worker... she didn't think I would be available!!

T has no choice in this matter of whether to visit the caravan as she cannot stay home alone. She has certainly not been consulted on her wishes.

I just don't know what to do - I live with my parents and tonight I've struggled to be around my Mum. I have enquired with a few friends on spare rooms / houseshares etc and it would be more expensive (obviously). I am seriously considering becoming estranged from her, I feel so ashamed that someone I am related too can be so blatantly grasping.

On the other hand my friend said today that I shouldn't judge too harshly where I cause more difficultly for yourself, many people in similar positions do the same. I feel wrong in doing this (but it is the easiest route) to remain in this house + continue with my plans for the future.

How to handle these feelings in some way? I've felt utterly consumed today with it.

Please is anyone else in a similar position and can offer some perspective?

Thanks
TD

meritaten

um sounds to me as if mum is not actually thinking of your sisters needs? you are now so fed up and disillusioned you want out of there?

your poor sister - she is now caught up in the middle of this. I remember some of your previous posts I think, and your mum comes across as rather 'dismissive' of your sisters needs unless they co-incide with hers?
Your sister has special needs - is there an agency who are involved with her? Social Services or a Charity like Mind?
because quite frankly it looks like your parent is 'using' her.

top_drawer_2

I would agree, she is currently seeing mental health as she had been depressed for some time leading to "outbursts" of anger at her carer / at home when frustrated. She is still dependant on the carer lady who has behaved "inappropriately" in my opinion, in that she has been collecting her son from school while supposedly caring for T. She lied about this - clearing on one occasion. As long as she is out from under my Mum's feet then its all fine ...

I feel dreadful re this newest development, and I'm not sure what to do with it. T is currently seeming to improve in mood as things have been put in place to entertain her during the week (less leisure activities more structured learning, to an extent).

Dismissive of anything that doesn't confirm what she wants ...

As its not against the "rules" there doesn't seem to be much that can be done. I got a lot of information from the Downs Syndrome Association and passed it on - much of it was obvious though or beyond her in terms of activities for Dealing with Anger.

I seem to be the only person in the world who is dealing with this type of issue - finding any advice seems to be impossible.

meritaten

top-drawer - isn't there a local 'Downs Support Group'? join that, and based on my DDs joining of Aspergers group - There isn't anything they haven't come up against. and you need support hun. I know bu99er all about Downs - but I do know that 'local support groups' are a fantastic resource.

top_drawer_2

I looked into the nearest one last time I posted - the provision doesn't exist in our own town, one exists in the in the opposite direction to the easily accessible town. I don't drive making travel difficult as it is...

Why does it feel like I come up against one problem after another?

TD

meritaten

its the internet age hun - you may not physically be able to attend - but they should be able to support you over the 'net. and there are 'national' sites. contact them. explain your situation.

Ich_2

Tried these?

http://www.mencap.org.uk/local-groups?field_localgroups_county_t_value=1169&x=29&y=17


For social activities try the Gateway Club section

maman

Sorry but I haven't read any of your previous threads.

I've found (from experience of some family) that other parents of SEN children sometimes cash in on it 'because they can'. I know someone, for example, whose son with a hearing problem works and drives an Audi but his father has managed to have their whole house insulated for free. The same people have a daughter with a minor, intermittent hip problem who in on her third council property (two brand new flats and now a brand new house).

I can see that your mother might be able to convince herself that as your sister will have use of the caravan it's OK for her to sort of contribute towards it, especially as your mum needs the money. What seems wrong is that (probably to ease her conscience) she's dismissed the other ideas as they would mean the money was actually spent solely on your sister.

The right way forward IMO is for your sister to go to Haven or somewhere like that with you as her escort. Without knowing the details, it's possible that the respite place might be like an old people's home and unsuitable plus I'm sure you're right and she'd love a fun holiday.

The dilemma is how far you want to stick your head above the parapet. Your mother will probably come back and say how she 'deserves' a bit of help (financial in this case) as she has to look after your sister year in year out. You could have a major falling out over it and become estranged from your sister too. If I were you I'd say your piece as far as repeating your offer to go as escort and how much fun your sister would have. Then ask if a final decision has been made. But that's as far as I'd take it, express an opinion but don't get into an argument.

top_drawer_2

Hello again,

Thank you for all your advice - I am very grateful. I have looked into the Mencap provision and as I thought it doesn't exist in this area any longer. They offer some advice online and as I thought as long as its within the rules / boundaries of provision then there is little I can do. I think I am going to have to be a little cleverer and appeal to my Mothers other facets to get some of the things I would like T to have.

I'm following up on the suggestion of Haven / another holiday park / Arts and Crafts Hotel with me going as her carer - I think she would get a huge amount out of just being away from home for a few nights.

I'm a little concerned at my Mum reaction to things; T has had a lot of issues finding activities + carer to attend and so I offered to go along to a six-week course running at our local school in a topic she would LOVE to learn more about. Last night I checked that my Mum had registered / enrolled us onto the course as we had discussed two weeks - she hadn't (grrr).

She then said well do I want to be involved (its a practical class) and said well no I would watch / support T (its not really my thing, if I'm honest). So then my Mum says "Well OK then so you'll just give me half towards the course ... " I asked why I would do that (!!) She says because "Because I'm lying and saying you're her carer and I'm getting to go along on the course so she thought I should contribute." Then she goes onto say "She doesn't know if she will pay me, yet ... but won't really." Meaning she will claim carer costs from the budget but not actually give them to me as I've said I don't want / need paying for the time.

Honestly I thought my blood was going to boil; I get up for work at 530, travel around 14 miles on two different buses, costing a fortune a week to do a stressful / challenging job and offer to give up one of my valuable evenings to do something of her daughters choosing (she can't be !!!!!d too and couldn't find someone who could) to enhance her life a little and she wants me to pay half towards the fees, towards my sisters participating (for which I will not be participating in!). I clarified that this is what she meant and yep, her cheek really does know no bounds.

Thank you for listening.

kezzygirl

Hi topdrawwer,
I assume your sister has social funding and so I would have a word with her social worker and advise them of your concerns.What your mum is doing is misusing her daughters money, which social services safeguarding take a dim view of, as it is essentially financial abuse.

I assume the money is paid directly to your sister and so your mum should be acting in your sisters best interests if she lacks capacity.It would appear that she is not doing this and so social worker needs to be told.

hth

meritaten

your sis is bored and frustrated! she is obviously capable of a lot more than your parents think. this is so sad. I know what Mental Health Services are like - Diabolical is the word I use.

I am sorry - I have racked my brains, but cant help. your parents are her carers and do as they see fit. if the higher authorities agree with them, I honestly don't know what you can do?