Adult siblings with SN....experiences?

[catsdogshorses]

I am rapidly approaching a time in my life where my parents will not be able to be primary carers for my adult sibling (in thirties) with SN. Sibling will never be able to live alone, can't be left in a house alone at all really and still needs waking nights most of the time.

Is anyone else going through this/gone through this? There is only me, no other siblings and I live hundreds of miles away from the rest of my family.

I have seen friends of sibling go into supported living etc and seen some terrible things, especially when their parents have no longer been round to check on them.

I really want my sibling to come live with me and my family but am worried I haven't thought through all the implications and reality.

Is anyone else dealing with this? Would anyone else like a thread where we can share and vent to others who really understand? None of my RL friends really understand the reality e.g. my sibling would come to every friend meet up I ever go to again unless I have arranged a carer for her, have to come on every family holiday, perhaps with carer unless I could get decent respite (almost impossible), have to come to every sports day, scouts drop off, swimming gala etc unless I and only I, can arrange decent reliable care.

I'm not sure my DH, who is totally supportive, really understands the reality either...

Also I work full time and have 2 under 3.

Anyone?

What level of service and support do your parents have, could a meeting be had with whoever provides this? Do you have space for your sibling?

Could you look at supported living near to you, so you could take over the oversight role from your parents? What you describe sounds like a massive undertaking, I don't think I could do it.

Would you be prepared to give up working - presumably forever ? If your sibling needs total care , can't be left alone at all , are you mentally prepared for the 24/7 care of another adult ?

Do your parents want to stop being main carers.?
Would your sibling want to move in with you/nearer you? woudl your parents want them to move away - even if tehy cant provide all care their lives may well revolve around your sibling....

Its good to make plans for this but you don't necessarilly have to rush to be the option.. and I woudl really advise not rushing things anyway..

Does your sibling have a social worker? - if not that is probably the first step if they have learning disabilities they should have one...
do they access activities etc out of the home...

They may want to be more independent- adult living must incorportae their needs and wants as much as possible...Its hard to know what the options are without knowing their level of need.....

I would hesitate moving someone with a high level of need who is used to a 'quiet house' with just their parents into a busy house with working people and growing children....

have a look at your local council site adult social services section to see what services are near you and start the conversation with your parents/sibling.....

You might find this organisation helpful: www.sibs.org.uk

I don't have a sibling with SN and I can't begin to understand how difficult this is for you but it is important to consider your own family's needs too. Could you have your sibling to stay with you for a month? That might give you and your family more of a real idea of the actual impact having your sibling living with you would have on your lives. Though you are such a good sister for wanting the best for your sibling you cannot sacrifice your children's wellbeing and your marriage and potentially your own mental health.

I think you need to think about your own needs and your family's too. I know you want to help your sister but it doesn't sound like you're going to be able to without neglecting your DC and it essentially ruining your life.

Supported living can work really well, if she goes into a house near you you'll be able to check on her, take her out etc.

It sounds really hard, I'm sorry you're going through this.

Can u contact the adult social care team they will be able to offer advise

If you were to bring your sibling to live with you, what happens if/ when you are no longer able to provide the care? Are you implicitly setting up any DC to taking on the care of their Aunt in the future?

I think your DPs need to be reviewing the care that is in place. If it is now foreseeable that a change is going to come, the ideal would be for that to happen in a managed way, with your sibling being prepared properly, rather than the family suddenly reaching crisis point and sibling basically having to be placed wherever there is a bed.

Depends on sibling's needs, but is there a middle ground, where sibling can live with family but with a care package in place?

Either way, does anyone have Lasting Power of Attorney. If your DPs were suddenly incapacitated, are the systems in place for you to be able to make financial and health/ care decisions on behalf of your sibling?

I have a 15 year old dd and a 8 year old ds with sn .. he is not and won't ever be her responsibility. I will organise / provide care / provision for when I cannot care for him any longer . Your sibling is not your responsibility. Start researching places for him/ her to go and live and funding and discuss it with your parents before it's too late .

I completely hear you! Have been in a very similar situation. My DSis is living in supported accommodation near me. My parents got to old really! And her SN make her hard work! This is the third place she has lived and is the best! But we do have to monitor it most days. Could you try something like that? We had a social worker who helped us. We all want the best for our siblings but having her move in with you will put a lot of pressure on you and your family. Please feel free to PM me.

If you work full time is this a realistic prospect? Honestly?

Have you spoken to your parents about what they think?