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Original poster

Who will look after your sn kid when you're too old?...Womans Hour

20 replies

meltedmarsbars · 01/09/2009 20:25

feature today. Pretty scary really. Have you and your dp/dcs talked about it? What is the best option out there?

OP posts:
Glitterknickaz · 01/09/2009 20:29

Do you know this terrifies me. We've never discussed this I hate to say. I'm hoping that at least my kids will be able to live independently when they are older, if not alone in supported housing....

Original poster
meltedmarsbars · 01/09/2009 20:31

Mine is tube-fed, very immature, severe learning difficulties....not likely to make independance. I'm listening to the feature on the listen again thingy at the mo. I've been to a talk by Monica from Sibs. She's very thought provoking.

OP posts:
glitteryb6 · 01/09/2009 20:35

just hoping i dont pop it before ds is 18 so he can stay at home with support coming in, he would run them ragged right enough!
if not im buggered as mum and dad are getting on a bit and i dont trust anyone else with him, least of all XP!

5inthebed · 01/09/2009 20:43

Oh, scary question!

I would like to think ds2 would be able to live independently with a little support coming in, if not, then I guess he would have to live in social housing or something similar.

My SIL lives in a care home for middle aged people, and she has a better social life than most 45 year olds I know.

r3dh3d · 01/09/2009 20:46

No idea.

Tbh, I've got out of the habit of looking more than 5 years ahead. The last 5 years have been such a rollercoaster and things are 100% different to how I imagined they would be at the start. Trying to project past the end of my lifetime? Impossible. Meaningless. My dim assumption is that DD1 won't make it that far; realistically I'm expecting her to live into her twenties, or at least I'm preparing myself to face her only living that long. If she does survive longer than me and DH then I imagine she'll be in a fairly hellish residential institution and DD2's legacy will be trying to police them to minimise the chance of serious abuse and neglect.

daisy5678 · 01/09/2009 20:49

J's psychiatrist was saying recently that he may be able to be independent to a degree one day. I hope so. But I'm screwed if not so don't like to think about it!

saltyseadog · 01/09/2009 21:08

Ditto with r3dh3d. I feel terribly guilty that the bump I'm carrying will always have the responsibility of having oversight for dd's care (providing that they too are not born with the same PMLD). But I try to not look tooo far too ahead - what life has taught me to date is that it has a habit of throwing you curveballs that you don't expect, so there's no point getting too caught up with the planning. As John Lennon said (I think!) - 'Life is what happens whilst you're making other plans'.

What we do do though is save for dd every month, and encourage relos not to buy her plastic tat at Christmas but to contribute into her savings account.

MrsMuddle · 01/09/2009 22:21

Saltyseadog, while you would think that building up a nest egg would be the sensible thing to do, if you save too much it will have implications for your DD when she becomes an adult if she needs social care.

I know a bit about this through work, and a discretionary trust is the best way for money to be saved or left.

I don't want to go into it too much here, but if you want me to send you some leaflets, please CAT me.

donkeyderby · 01/09/2009 22:39

I am hoping that not all residential homes are hellholes. Otherwise, we're seriously in trouble. I can't imagine coping much beyond 18 with ds1. Have always thought that this is the only option as seems to be so little help for an adult with SLD living at home. It would kill me off

Davros · 02/09/2009 10:03

Argh, gawd knows but don't want to think about it yet, even though DS is 14 and we are both 50-ish. It is a saving grace if they have siblings. I know people often baulk at that but my view is that DD does not have to care FOR him but she will care ABOUT him. As we have little other family of suitable age it will be up to her to at least take an interest. If only we could have had more children but my health was the limiting factor, not DS's ASD.

TheDMshouldbeRivened · 02/09/2009 10:09

No idea. If the LGS progresses she wont be able to live independantly so some sort of residential setting when we are too old or dead. But then will the workers respect her as a person. She cant move or speak so is totally helpless
dd isn't expected to live till adulthood but you never know. Given how dementia patients are treated what hope is there for dd? And who will watch her all night in case she has a seizure or stops breathing?

mysonben · 02/09/2009 13:45

We haven't discussed that yet with dh.
I just hope that ds will be able to live independantly and have a job someday as his asd is quite mild.
Only time will tell, as it is still so early who knows what progress he will make.

saintlydamemrsturnip · 02/09/2009 14:03

Oh was talking about this at lunch, didn't realise it was on WH.

DS1 will need 24 hour care. School starts discussing it with us when he's 14 so in about 4 years. I have a few places in mind but they are very expensive so funding is an issue (SS of course preferring cheaper crapper options). This is part of the reason why I record difficulties with SS. If I end up bruised because they haven't given enough support I tell them in writing, so there's a paper trail.

I very much have one eye on the future. It could be as early as 7 or 8 years away for us.

magso · 02/09/2009 14:11

We worry about ds future and have no other children to watch over his care once we are gone. Ds looks so able but his LD and autism mean he really will need understanding sheltered support. I worry that his needs will be underestimated and ds unsupported could end up in real trouble.

Davros · 03/09/2009 08:24

Saintlydame, DS has his Annual Review this Monday and he is now 14 so I have to start kicking arses! Please let me know of the places you have in mind. I also leave a paper trail and I think the fact that they are aware of it is good, it would take some doing for me to lay my hands on it all, but it is there, just in case.....

saltyseadog · 06/09/2009 13:54

Hi MrsMuddle - yes, we've thought about setting up a trust fund, but have done absolutely nothing about it so far. I'd be really keen to hear more about it, will send you a CAT. Thank you.

Davros · 06/09/2009 14:48

I recently went to a Mencap presentation on Trusts which was very intereting and, although I thought I probably understood it well enough, there were things I didn't know. We will follow it up once the summer holidays are over (tomorrow!).

vjg13 · 06/09/2009 16:15

I would like my daughter to live somewhere like one of the Camphill villages. Not sure how realistic this is

magso · 06/09/2009 19:50

Yes we had wondered about a Camphill community for ds.

MrsMuddle · 07/09/2009 21:26

saltyseadog, no problem. When you CAT me, I'll stick some things in the post.

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