can anyone help please? parents of children with ds especially

[chibi]

can anyone help me work out what the care options are for my sister who has ds?

background
i am a canadian, living in the uk with my british husband and 2 dc. we are both teachers. i am a uk citizen.

my sister is in canada living in an isolated community, with my parents. she has ds. she can manage all aspects of self care, but is not employed nor has she ever been.

my parents are in their mid-late 60s and i am now thinking more and more about what will happen to her once they are gone.

my questions

it is absolutely not an option to leave her alone in our home town in a group home, if only because there would be no one left from our family there to advocate for her. Also she would be alone! At best i could get out to visit her once a year. this isn't good enough.

i feel like i need to explore bringing her here to the uk to live with my family- it is one of several options, none of them great, and i can think of all kind of negatives about each of them but i need to start thinking about the logistics of each iyswim

my parents' plan is 'hope they outlive her'

what i really should have done is marry a local boy and not leave home - every possibility involves uprooting her and moving thousands of miles away

Moving home isn't an option either, there aren't any teaching jobs, and i can't uproot us all to move to canada in the hopes we will luck into jobs somehow

anyway

what sort of provision have you made for your dc with ds for after you are gone? who (in a professional capacity) can i talk to about any of this?

we are of course going to assume the financial burden for her. she gets a kind of a dla back home, i don't know if she would still be entitled to it if she moved. regardless, we can support her.

i have posted here in the hopes of avoiding any weirdos who want to accuse me of importing her so she can be a drain on services/wrecking the country or whatever (if anyone with those opinions posts, i will not be responding)

thanks for any help you can give

[chibi]

i would love to be able to say to my parents, 'don't worry, when you are gone we will do x, y, z' rather than reassure them that we will get by somehow

i can't imagine how much they worry and dread thinking about the future.

[amberlight]

What does your DSis want for herself?

[Al1son]

Fingers crossed you shouldn't get any abusive posts in this section.

My DDs have AS so don't have personal experiences to offer I'm afraid. However I would suggest contacting MENCAP who may have an advisor you can talk to and who should have a good idea of what your options might be. They will probably be able to point you in the direction of other organisations who can help you too.

[chibi]

My dsis wants to stay in my parents' house forever. This isn't a possibility.

Basically I am loath to leave her in our hometown in any place (group home, assisted living or whatever) because once my parents are gone, there is no one to keep an eye on her and she will be alone.

My grandfather and grandmother are/were both in care homes for the elderly and my father has frequently had to advocate for them and make sure the care they were receiving was good, and just deal with all the things that come up- I can't do that from here

Failing that, she also wants to live with my brother, who is on the other side of the country to her. This could happen, but he has a very precarious existence financially, so I just don't know how feasible that is. It is certainly a possibility.

[chibi]

Thank you for the mencap suggestion, I did not know that

Thank you also for reminding me to consider her wishes

I want to try and find some sort of solution that best meets her wishes and needs, I hope I can

[mariagoretti]

My dh's uncle (similar abilities to your dsis I think though has MLD rather than DS) lived at home with his mum all his life, though he had a sheltered job. He rather fell apart when she died. He still lives in the house but now has an even more sheltered job, and daily carers, with relatives picking up the other duties (bills, shopping, whether he should have the heating on etc).

The first six months was the worst, and he lost loads of hard-won independence skills. I think moving at that stage might have aggravated things: ideally he would have had 24h support in his own house for that time, and then moved. One options would be for her to come now for gradually increasing 'visits' while your parents are still fit and well, or else if you and your family would be able to manage a temporary move (3-12m?) to canada when the time comes.

DH's uncle was left their ex-council house to live in, which didn't affect his benefit entitlement. But were he to want to move, he would then have money in the bank, which isn't necessarily a good thing unless it's a vast amount! I think some sort of trust can avoid this. So you probably need wills / tax / benefit specialist advice from both countries.

The other issue is the immigration people, who can be really horrid to those trying to bring infirm relatives over at a time of crisis (I know some people who can't care for their mum because 'doesn't she have any other children in your country?')

[mariagoretti]

And (I'm really sorry if this sounds upsetting) you also need to look at how old your dsis is, and the likely health problems associated with DS as she ages. Dementia is common and usually early, thyroid problems and various other issues often mean that a 50 year old with DS needs a lot more care than they did at a younger age.

[eviscerateyourmemory]

If your sister has access to benefits in her own right, and wants to live near to your brother, then his financial situation might not be a dealbreaker. If she can support herself financially, then he wouldnt necessarily have to pay anything for her, but would be around for company and to advocate for her if needed.

Moving from one side of Canada to the other might be less 'uprooting' than moving to the UK from Canada?

Are your parents in good health? If they are then potentially things could carry on as they are for years yet, though it is good to consider it now. From what I have seen people tend to cope better if they move away from the family home while their parents are able to see them move and settled, rather than the scenario of having to cope with both a bereavement and a sudden move at the same time.

[IndigoBell]

Could she live with your brother and you help financially?

[chibi]

moving in with him is also a possibility, or moving to be in a group home/assisted living in his town

i am not sure how much her benefit will help to defray the costs, his city is v v expensive to live in, but again, we can top that up

i need to look in to the logistics as well - everything is v decentralised in canada- many provinces refuse to provide benefits/services until you are resident for at least 6 months

my parents are both still in good health so this is not a pressing concern but i have been thinking about it

we see my dh's parents (they are in the uk) v regularly, and they are old and becoming more frail each time we see them - i think seeing them age really hammered home to me that with older people, anything can happen, and you can't take health for granted

[chibi]

i meant to also add mariagoretti yes i am aware of the increased potential for dementia in adults with ds

i think all of this is why as a family our strategy thus far has been 'fgs don't think about it!'

[donkeyderby]

Are there any advocacy services you can hook her up with in Canada to make living in a group home feasible in her own community where she is accustomed to living? You will be her only family advocate here - that would be difficult if - God forbid - you became unable to do it.

It sounds like you have to carry on with what you are doing - looking in detail at all the options and I second Mencap as a useful organisation to be in touch with

[purplepidjbauble]

The first thing I would suggest is to make sure you have some kind of Power of Attorney in place so that, should it become necessary, you can take charge of her finances and make sure that all bills are paid. My Great-Aunt was the financial provider for her and her husband, had a stroke and was unable to sign or understand, and the electricity etc was nearly cut off while we sorted it out.

Next, your parents need a good solicitor to ensure that anything she (and the rest of you) inherits is safe from as much inheritance tax as possible. I don't know about Canada, but in the UK it's possible to hold property "in trust" for someone's lifetime (again, I know this from my Great Aunt and Uncle's situation).

I work with adults with LD, including Down's Syndrome, and some have no remaining family - their housemates are their family. They are represented by independent advocacy services.

A quick look on google.ca came up with this, and some of these might be relevant?

hth