Aging parent insists on "keeping" adult downs child. Any advice?

Hello from Cape Town, S. Africa After Mum's peaceful death at her home aged 87, my 50 year old Down's sister could no longer stay in their cottage. Whilst high functioning, she had never been left alone, or allowed to develop any independence. After looking around for 2 years for a suitable group home or protective community, always contrary to my mother's wishes, I found a small group home not too far from where my family lives. It was against huge physical resistance from my sister, but with much determination and heart-break from my side that I drove her there, furnished her spacious room, and said goodbye for the next week, in order to let her settle in. 6 weeks later, she still hasn't taken ownership of her room, but she is functioning, getting more independent going on walks in the area with some of the other residents. After the age of 35, it is almost impossible to get a Down's adult to change their habits. I pray to God daily that he gives my family the strength to encourage and support my sister in her new home. The caregivers there are super - she needs to make an effort now to adapt.

I completely understand where mom is coming from. My gram kept her 50-something Down's daughter with her until she became sooo set in her ways that she was impossible to live with. It broke my gram's heart right in two.

A very good friend's mentally disabled son just turned 30. She lives in constant fear of dying before him. She visits possible group homes, but that's another broken heart in the making.

Perhaps you can talk mom into assisted living WITH her son. Wouldn't be the worst thing really.

Change is so hard to recognize & accept.
Maybe it's time that mom isn't the final decision maker anymore.
This change NEVER goes over well, so don't expect it to.

Your brother is going to need a legal guardian at some point (soon) and you need to figure out if that's you.
The estate planning needs to take into account a special trust for him and insurance.
Before upsetting anybody with any big changes, I would definitely get thee to a lawyer immediately.

Your local United Way chapter may be able to offer you some resources for this kind of planning as well. The fact is, the status quo won't stay in place forever, so it's about getting ready to transition brother to whatever is next in a way that will be positive.

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LarryBoy, your Mom needs to plan ahead... not to scare you or her, but according to the Mayo Clinic "People with Down syndrome have a greatly increased risk of dementia — signs and symptoms may begin around age 50. Those who have dementia also have a higher rate of seizures."

I bet your Mother never even thought about that being an issue with your brother. A chat with your brother's doctor might help her.... sometimes our elders will listen to a doctor instead of their own grown children, even if we are saying the same identical thing.

The son with Down's should be in a day program to give her some relief. That is a small step in the right direction. After he makes some friends at the day program, then think about a group home. There will be a waiting list.

It sounds as if your brother is pretty high-functioning, Larry? Unfortunately, though, I can see both points of view. I know my SIL, a psychiatrist specialising in learning disability, would say that your brother ought to have his own support team encouraging him to maximum independence and autonomy; but I can also understand your mother's fierce protectiveness. It's got him this far, after all. I can quite see that she must be terribly afraid of what the wicked world might do to him if she weren't watching. And, what's more, if only we could be sure that she is wrong about that.

Do your mother and brother currently have any support services in place? Would it be worth trying to get in touch with their health or social care teams for advice?

I don't know if this is even a possibility, but my mom had a relative in the same situation and the two moved together into assistive living, each with their own rooms. While I agree it would have been better for your brother to make a life separate from your parents, by this age he has probably become accustomed to living with and caring for your mother. My mom's relative's son enjoyed helping out everyone at the assistive living and has stayed on after his mother passed away.