Aging Parents and a Special Needs Sibling?

[PaulaSue]

Who has gone though this? Any helpful advice?

My Grandmother (mother of 8, GM of 14 and GGM of 8) is in poor health and is the caretaker of her youngest DS (44) who has severe downs and many health problems. (My GF passed away 6 1/2 years ago.)

It is time she gets more help (all help out around the house and drive her, etc...) and it is a big mess. She has fallen 3 times in 8 months and now has been in the hospital for over a week until "we" can figure out what is best for her and Mark.

All of us live close, some work different shifts and I am the only SAHM. (My family lives in a 2 bedroom and they need a place with no steps.)

The hospital is helping find options for us since no one has the space or resources to take on their care themselves and she doesn't have good insurance. The insurance will pay for a nursing home but not in home care. She now needs it 24/7.

Anyone go thought this and care to share or PM me? I would like to know how others dealt with this in hopes to help find a solution. TIA!

 

[Karel]

Someone needs to share guardianship of the special needs son. He should get on a list for a group home NOW. I'm not sure where to point you in the right direction but you need to get an advocate for Mark and start procedures to get him into some sort of residential setting. I just watched a friend go through this with her sister and it is a very long process.

Your grandmother should look for an assisted living place, if possible, but you're going to have to do something about the son and soon.

 

[s&k'smom]

I don't know what kind of services your family member has but if they are connected to any kind of agency they would be a good place to start. Unfortunately I've heard this story so many times. The parents have taken care of the person with disabilities and now that they are older it's become impossible. Your cousin should be in a group home where he can get all the support he needs. Is he in a workshop, or any kind of vocational program? No matter what the disability he can and should be at a day program. Someone needs to look into the services your state offers, you may even need to hire someone to do some advocating. I wish your family all the best in this time.

 

[PaulaSue]

My Uncle behaves on a 4-5 year old age level. He is Mongoloid (?) and has heart and kidney problems besides not being able to walk very much since his last surgery.

He was in school until 21 yrs old and nothing since but for some speech classes about 2 years ago. He doesn't talk like we do, more like a few babyish words.

Our family is in contact with ARC but everything is crazy right now we are asking for any and all ideas.

It seems like Mark's life is on hold until after Grandma is placed in a home. Right now he is to go and live with my Father at night and some sort of Daycare the rest of the time. That is just today's thought, I am sure it will change another 10 more times before it is decided.

 

[Hannathy]

You may want to post this over on the disabilities board. Those folks are walking encyclopedias of state agencies and available services. They may be able to help.

Good luck I know how hard it is to find services for the elderly component of this equation and your situation is tougher. My heart goes out to your uncle? he is going to be so lost and confused, treat him gently.

 

[s&k'smom]

I hope you won't be angry with me but the word Mongoloid is rather offensive and very out of date. We refer to someone with Down syndrome (if that is their diagnosis) or developmentally delayed. You must contact someone with your state agency or Dept. of Mental Retardation whatever they are called in your state, they are the ones who usually place folks in a group home and a lot of times in conjunction with the human service agency the family is working with. Good luck.