I am not sure that this is the right place for this topic, but here goes.

We adopted a baby with DS, he is now 21 and he will never be able to live independently. I was on an American DS forum and I asked what would happen to their children when they could no longer care for them. They all said that they expected the siblings to take over the role as it was their duty. I was castigated to hell and back, and have had to leave the forum because I said that there was no way I would expect my children to care for my son when I was no longer able to do so. Our daughters love him to pieces, but they have their own familes and careers to think of. Caring for our son is a 24/7 job. Do any of you have a child with DS and would you expect their siblings to care for them in later life?

loveapple, I appreciate the situation. I have a close friend who is the single mother of an autistic son, who many suggested to her be institutionalized. She fought hard to keep him with her and not worry about those who look down their noses at her when he has a tantrum in public, as a teenager. Yet what is his future after she dies?

I'm going to call your son's condition "trisomy 21", because I am so gunshy of parents wanting their child's condition to be called something just so and thinking ill of me if I miss the mark. This is so much more the case with trisomy 21 than with cerebral palsy, where children can be just as dependent. I'm not sure if the issue is the same thing that really sends some parents of kids with trisomy 21 through the roof, which is to mention that their children don't have a static disease. They mature, but then they get worse. When last I was up to date with this, their life expectency is decreased and they all have changes in their brain similar to Alzheimer's Disease eventually. So caring for them as an adult into their 30's and 40's can become more difficult as they get worse. It's something to consider regarding who will do that.

Of course care can start with a family member, then shift to something more formal if necessary, but I don't think there's some hidden principle to who cares for anyone with 24/7 needs. Care can be loving wherever it is. Care can be oppressive to the caregiver in all sorts of situations. I don't see anything wrong with you and your daughters deciding this subjectively. Whoever feels it in their heart to care for him should, but I don't see a principle of love that says that anyone should care for him if they don't feel up to it. I suppose I'd get ripped for saying that on the forum you mention. I already was once when I cared for a teenager with trisomy 21 who had a seizure with a fever. Her mother wanted me to say she's fine. It's just a seizure from a fever. Instead I said I was concerned at how old she was to be having a seizure with a fever, that it's not normal and wanted to get an EEG and have her on an anticonvulsant until then. Not only did she say no, but wrote a letter to the referring physician saying I had basically called her child a "Mongoloid idiot". Some parents aren't seeing everything realistically. I think what you wrote makes sense.

Sadly some of the people I met on the DS forum were less than realistic about their children. I know it is normal to boast about your kids a bit, but if you read what some of them had to say you would have thought the kids would have put Einstein in the shade!

When you have a child with a disability you do need to balance that child's needs with those of the 'normal' siblings. I fear that in some cases the siblings get short changed because they are not disabled. People with DS are highly likely to contract Alzheimers in their 40s as you mentioned, David, and I cannot see it is fair to expect the siblings to take on the role of carer unless they are very keen to do so. Caring for a disabled person 24/7 is not easy. I am hopeful that I can continue to be my son's carer for at least another 10 years, but there will come a time when I am no longer able to do so and a good care home will be needed.

I know a few adults with down's syndrome who are able to pretty much take care of themselves except when it comes to money issues. One lives with her sister and the other lives in a group home. The other person I know with Down Syndrom is very low functioning and lives with his parents (he is 35). I don't believe he can live in a group home. But he also won't outlive his parents because he has some serious health issues.

If his siblings won't be caring for him and you don't make arrangements the state will take him as their ward.

The state may certainly have an input as the UK has a Welfare State to which end we pay our taxes, so that is fair enough.

Hi,

I have worked with adults with disabilities (mostly retardation-- some with Downs and autism). I think that the UK is actually ahead of the US on group homes and various living and working options for people with disabilities, but at least in the US the person who can't speak for himself needs a guardian or some kind of durable power of attorney. I don't think the laws would be identical on this but you should check on this with a more local organization. You need to be sure that this is all legal and out in the open.

If you don't have someone speaking for his interests., he may not end up in good situations. The kinds of
care vary from just amazingly good and humane to appauling. I think though that you should look at some of these. I have seen/ worked at wonderful places with caring staff and lots of opportunities that a young
person would not have if at home for friendships, learning and meaningful work. Many adult disabled living
with a sibling do not get much stimulation and just sit around the house watching tv and eating junk food, and Down's syndrome people have a tendency for obesity. The best combination, imo, many times is not liivng at home but having a very involved family that is active in everything.

And yes, the incidence of Alzheimers and Downs are somehow connected. I doubt every person with Down's acquires it as there are heart problems with Down's as well. I know personally about dementia and I have read that the incidence of death and serious illness in people *caring* for a person with dementia is VERY high. Sometimes caregivers actually die before their own parents with dementia. That should give anyone pause.


--des

Oops. Didn't realize you were from the UK! The US has that policy. The states take care of those who can not care for themselves.