Multiple diagnoses: Down syn, schizoaffective disorder and dementia

Posted by lindaloucg @lindaloucg, 3 days ago

I am looking for some support. My son is going to be 39 in Dec. He has Down syndrome, Schizoaffective disorder and in July was diagnosed with dementia.
Feeling a bit overwhelmed. His Dad died in 2012 from cancer. Is there anyone who might have these 3 diagnosis?

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Hi @lindaloucg, I can imagine you are feeling overwhelmed. I'm bringing @ihatediabetes @adah @ess77 into this discussion to share their experiences. They also have adult children with multiple diagnoses and know that worry and overwhelm state.

Linda, does your son live with you? Have you contacted a local chapter of the Alzheimer's Association (https://www.alz.org/) for support for you?

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Hi my son is 31 and has Williams Syndrome. He also has other things too. But the superordinate diagnosis is Williams Syndrome. So I try not to pay attention too much to other labels. That might be the same thing with Downs Syndrome too. But with or without an additional diagnosis your son is still your son and you know him best. I find it helps to take one day at a time. Also my son has a few things he really likes to do. So he does camp every year, Special Olympics, trampoline park, and baseball games. So he's happy. That's the most important thing- that your son is happy. Is he happy? My son is a very happy person. He talks to everyone and cheers people up.

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@colleenyoung

Hi @lindaloucg, I can imagine you are feeling overwhelmed. I'm bringing @ihatediabetes @adah @ess77 into this discussion to share their experiences. They also have adult children with multiple diagnoses and know that worry and overwhelm state.

Linda, does your son live with you? Have you contacted a local chapter of the Alzheimer's Association (https://www.alz.org/) for support for you?

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Yes, Coleen, Derrick lives with me. I have support staff 2 days a week, 6 hours one day and 7 hours the other.
Thanks for the info for the Alzheimer's . I haven't contacted them simply because I'm afraid I haven't fully accepted it yet.

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@ihatediabetes

Hi my son is 31 and has Williams Syndrome. He also has other things too. But the superordinate diagnosis is Williams Syndrome. So I try not to pay attention too much to other labels. That might be the same thing with Downs Syndrome too. But with or without an additional diagnosis your son is still your son and you know him best. I find it helps to take one day at a time. Also my son has a few things he really likes to do. So he does camp every year, Special Olympics, trampoline park, and baseball games. So he's happy. That's the most important thing- that your son is happy. Is he happy? My son is a very happy person. He talks to everyone and cheers people up.

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My son is very different than most people I know that have Down syndrome. He is happy
although he doesn't have friends. His friends are my friends. He also has his "family" that is very real to him, (schizophrenia) He doesn't go to camp or anything else because it is very difficult to get him to leave the house. The one place he really loves to go to is Bingo even though he doesn't play. The people there are amazing with him. I got him a dog in February and that seems to be a help in getting him motivated.
I'm feeling overwhelmed because there is so much mental, physical and emotional abuse. the schizoaffective disorder is the type that is schizophrenia and bi-polar mixed. Now we're adding sundowning to the mix. He gets very aggressive at times. He can't be left alone either.

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My son sometimes freaks out too. I took him to the doctor and we tried Straterra. That helped a lot. My son doesn't live with me. He lives in a group home and goes to a day program. He does visit us often on Sundays. But to tell you the truth – he is ready to go home at 9 o'clock. There are two guys living with my son. Their parents also made decision to let their sons move to a group home too. Would you consider letting your son live in a group home?

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@ihatediabetes

My son sometimes freaks out too. I took him to the doctor and we tried Straterra. That helped a lot. My son doesn't live with me. He lives in a group home and goes to a day program. He does visit us often on Sundays. But to tell you the truth – he is ready to go home at 9 o'clock. There are two guys living with my son. Their parents also made decision to let their sons move to a group home too. Would you consider letting your son live in a group home?

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I have considered it but there's no funding. Besides, ever since his dad died, he's told me he's not living anywhere else…I know I won't be here forever either.
I feel like I am backed into a corner at times.

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Well my husband and I bought a townhouse when our son was 14. Then we found a provider to run this townhouse as a group home. So we are the landlords. You might be able to do something similar with your own home and take in other consumers. When there are more consumers they might be able to share some services. But its important to set these arrangements up while you are able to do so. What state are you in? I'm in Minnesota.

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Hi there. I’ve been reading your post and all the comments 😞it’s so hard and emotional dealing with these issues especially when they are young. My brother has schizoaffective disorder and just got a diagnosis of Alzheimer’s. It’s horrendous. He did well for 15 yrs. Very well. Meds were great help etc. but the past four yrs have been a living hell. He has literally been living in and out of psych wards for the past 4 yrs. They cannot manage his symptoms. He has a VERY SEVERE illness- not saying that others aren’t- and his medications helped me nail they didn’t. I am in shock and horribly depressed about all this. I feel sooooooo heartbroken for him and it just seems like this is how it is going to be for the short yrs remaining in his life

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@ihatediabetes

Well my husband and I bought a townhouse when our son was 14. Then we found a provider to run this townhouse as a group home. So we are the landlords. You might be able to do something similar with your own home and take in other consumers. When there are more consumers they might be able to share some services. But its important to set these arrangements up while you are able to do so. What state are you in? I'm in Minnesota.

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I rent. I can't afford to buy a home.
We're in Pennsylvania.
I lost my job of 18 years when covid hit because none of the agencies were allowed in the homes per the governor 😔
I've depleted all of my savings and I have no I insurance. Thank god my son has great insurance.
Thanks for your ideas.

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@dadbrother2022

Hi there. I’ve been reading your post and all the comments 😞it’s so hard and emotional dealing with these issues especially when they are young. My brother has schizoaffective disorder and just got a diagnosis of Alzheimer’s. It’s horrendous. He did well for 15 yrs. Very well. Meds were great help etc. but the past four yrs have been a living hell. He has literally been living in and out of psych wards for the past 4 yrs. They cannot manage his symptoms. He has a VERY SEVERE illness- not saying that others aren’t- and his medications helped me nail they didn’t. I am in shock and horribly depressed about all this. I feel sooooooo heartbroken for him and it just seems like this is how it is going to be for the short yrs remaining in his life

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Yeah, I'm right there with you.
I'm sorry your brother and you are having such a hard time.

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@lindaloucg

I rent. I can't afford to buy a home.
We're in Pennsylvania.
I lost my job of 18 years when covid hit because none of the agencies were allowed in the homes per the governor 😔
I've depleted all of my savings and I have no I insurance. Thank god my son has great insurance.
Thanks for your ideas.

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I am sorry to hear about your predicament. I caught COVID myself and have been trying to get better for 3+ months. I caught shingles after COVID.

Another thing we are allowed to do in Minnesota is get paid to provide support to our own adult children. There are also as lot of jobs you can do from home. Like customer service and staff like that. I was also wondering about day programs. My son goes to a day program. So he gets picked up my metro mobility and brought to day program with other consumers.

You have a lot of life experience for lots of good jobs. People have jobs managing group homes for providers. I am also going through Teach for America process for special education teacher. Life experience is so important to working with people with developmental disabilities.

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I do get paid to support my son, PA just doesn't pay well. Day programs around here are not fully open at this point. Besides, the one my son attended already told me that he would not be a good fit any longer because of not being able to get him to leave their facility, therefore having a staff member stay behind with him would make them short staffed.
My son and I both had covid as well. It's not fun.

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