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I have a nephew who can live on his own with some overseeing. Because of a neurological problem, he will probably have Dementia sooner than later. I am his POA. He is 34 to my 74. I have done a lot for him. The best thing, getting him people. He has a State Coordinator and a CBS worker once a week who takes him shopping, to the bank, cleans up his apt., etc. I am able to back away. Its nice. I remain his POA to handle his finances. I drive him when an appt cannot be made on Fridays. I can just be his Aunt. When he enters a home, I will let the State take over his care. My girls have been told in no way are they to feel responsible for him.
You yourselves know what marvelous care you have rendered and what good luck you've had in that many with downs do not make it to requiring aging care.
It is now time to look into options for the future.
If your son will inherit any fund, then it's time to be certain a special needs trust and a fiduciary is in place. If he will not inherit much he still requires protection that will allow him to access care whether in AL or group home and have what funds he has managed and protected for him by a State Appointed Fiduciary.
You do not mention other family and I am assuming that in your absence he will not have any to rely upon.
You've done well, but I as an 81 year old and you yourselves know that the writing is on the wall and something could happen at any moment. It is important to now get things into place. I surely do wish you well. I know you will have in place some contacts given this long history to help guide you. It's hard to be realistic, but reality is something you MUST recognize and accept in these tough circumstances.
If you'd like a caregiver more regularly, go to the Find Care tab on top of this page and click. Then fill out the form to be contacted by someone from A Place For Mom for in home care options.
Good luck.