[Sigster66]

I am in a turmoil of feelings right now. Angry, scared and sad. I recent got approved for SSDI for $921 which will go up to $1250 when my dependents get added. I will be eligible for Medicare July of next year. I was real fortunate and my government job gave me $2574 per month in long term disability but it ends now that I got SSDI and a back payment. I am still not well and have days where I weep and can't get out of bed. I need my SSDI safety net and Medicare. If I try and work now I am screwed. If I at least wait until July of next year I can use the Ticket to Work Program and I won't lose Medicare and benefits if I try and work and fail. My wife says what if she gets sick and that her job is stressful too. I guess she does not want to be the sole breadwinner but she has to realize I have serious mental illness and was receiving shock therapy only a year ago. I hope this does not break up our family....

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[NuckingFutz]

Hey there. I undersand about how you feel about getting off SSDI and your wife's wishes. I dated a gal who wouldn't continue to date me if I went on SSDI in the first place. She claimed that she was in pain all the time and could still work (maybe she could work, but when she was off work, she couldn't move). Even if you wife does have to go on SSDI, with both of you receiving benefits, you should be doing alright. I wish there was something I could say that would make your wife understand, I would think that being on ECT a year ago should say it all.

I would stay on SSDI and do what you can. Remember that being on SSDI is not a death sentance and that's why they have the back to work program.

Hang in there!

[Sigster66]

Thanks
I did some research and found out only 1% of people on SSDI due to a permanent disability get off it and go back to work. I managed to do it once in my life but I am not in that place now. My wife is getting over the initial shock. Sometimes I have to give her space. I have yet to tell her my long term plan but I will when things calm down. Our kids will get some benefits and some back pay that should help with the transition. The holidays are always hard for me mentally and financial problems don't help.

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[shortandcute]

some people have a hard time with other people being on disability

[costello]

I worry about my son being on disability and wish he could get off. My concerns are:

1. In the current political environment, I fear the disability will suddenly be removed at some point in his life. Not likely, I guess, but I still fear it. He's only 27, so he has many years ahead of him.

2. There's a stigma associated with it. I'm less worried about others stigmatizing him than him stigmatizing himself. I don't want him to see himself as disabled to the point that he doesn't make an effort.

3. Work is therapeutic. It gives us something to do. It helps build up our self-esteem and our self-image. It lets us contribute to society. It makes up feel successful and useful. It gives structure to our days and something to do with our time. It challenges us and makes us grow. It gives us social contact.

Those are my main reasons for hoping my son could get off disability. If he never gets off disability, that's ok, but I do hope he'll try.

Right now he's in his third week at a new fulltime job. It's very stressful. There's a high chance he'll fail at it. I worry about the blow to his ego if he's fired, but frankly staying home all the time is hard on him too. He's bored out of his mind.

Maybe in other cultures it's easier. A person like my son living on a family farm, for example, could contribute as often and as much as he was able without being overtaxed. Or if there were a family business he could work in. There needs to be some understanding that he will have periods when he can't take on as much. And there are times when he can function pretty close to normally.

[shortandcute]

Originally Posted by costello

I worry about my son being on disability and wish he could get off. My concerns are:

1. In the current political environment, I fear the disability will suddenly be removed at some point in his life. Not likely, I guess, but I still fear it. He's only 27, so he has many years ahead of him.

2. There's a stigma associated with it. I'm less worried about others stigmatizing him than him stigmatizing himself. I don't want him to see himself as disabled to the point that he doesn't make an effort.

3. Work is therapeutic. It gives us something to do. It helps build up our self-esteem and our self-image. It lets us contribute to society. It makes up feel successful and useful. It gives structure to our days and something to do with our time. It challenges us and makes us grow. It gives us social contact.

Those are my main reasons for hoping my son could get off disability. If he never gets off disability, that's ok, but I do hope he'll try.

Right now he's in his third week at a new fulltime job. It's very stressful. There's a high chance he'll fail at it. I worry about the blow to his ego if he's fired, but frankly staying home all the time is hard on him too. He's bored out of his mind.

Maybe in other cultures it's easier. A person like my son living on a family farm, for example, could contribute as often and as much as he was able without being overtaxed. Or if there were a family business he could work in. There needs to be some understanding that he will have periods when he can't take on as much. And there are times when he can function pretty close to normally.

I can certainly see your point. However, in today's economy it's extremely difficult to find a job as it is--employers aren't going to hire someone they have to acomodate.
And nowadays, you need a college degree to work at McDonald's, for cryin' out loud! So more than likely, if he got off of disability, he would end up with no income at all.
And, while it's true that work is therapeutic, you did mention that his job is very "stressful and there's a good chance he'll fail at it." Which is worse? At least having somewhat of an income, or constantly working at jobs that are too much, only to keep losing them and having no income at all? That's not gonna help his self esteem much either.
Perhaps he could do some volunteer work. At least when you're volunteering, you can get away with taking as many breaks as you need, taking time off when you get overwhelmed and doing hours that work for you.

[costello]

Originally Posted by shortandcute

I can certainly see your point. However, in today's economy it's extremely difficult to find a job as it is--employers aren't going to hire someone they have to acomodate.

He's managed to find some - without a college degree.

And nowadays, you need a college degree to work at McDonald's, for cryin' out loud! So more than likely, if he got off of disability, he would end up with no income at all.

I don't think it's a matter of just going off disability immediately. You go slow and make sure you can support yourself. He can earn quite a bit of money without losing any of his disability. Over $900 per month on average. It's not really an either/or thing.

And, while it's true that work is therapeutic, you did mention that his job is very "stressful and there's a good chance he'll fail at it." Which is worse? At least having somewhat of an income, or constantly working at jobs that are too much, only to keep losing them and having no income at all? That's not gonna help his self esteem much either.

It's been very hard on his self-esteem to not work also. The best way to build self-esteem IMO is to make an effort and succeed. There's always a risk of failure. But there's also a chance of success.

Perhaps he could do some volunteer work. At least when you're volunteering, you can get away with taking as many breaks as you need, taking time off when you get overwhelmed and doing hours that work for you.

He won't do volunteer work. He says if he's going to work, he wants to be paid. He won't go to school either. Trust me we've covered this ground ad nauseum. No volunteer work. No school work. And sitting home alone all the time sucks too. He has very little social life and no hobbies or special interests.

I wish there were some easy answers. He's considered starting some kind of home-based business. Maybe that will work out for him one day.

We're just doing the best we can. I only responded to the OP to provide a possible alternative perspective. I wasn't trying to criticize anyone.

[IowaFarmGal]

My son has vocational rehab working with him. He goes to a sheltered workshop and they coordinate services through there. They work with him to overcome his challenges in applying for work in the first place and improving skills. Does your son have help like that? I lost my job and am on a senior citizen training program. I wish I had a team helping me like he does. A home based business would be great! I wish I had something like that myself.

[Sigster66]

The time I went off SSDI first I did a lot of recovery work including one year of partial hospitalization. I worked a few jobs and failed right away. I decided to work as a peer counselor that was the best of both worlds. I learned about mental illness while helping others with theirs. I did that for a couple years and went back to school and got a masters in psychology. Department of Rehab did not think I could hack Grad school so they did not help until I went back to them with a 3.7 GPA report card in hand. My education and good mental health came together at the right time so I went back to work never looking back until I had a major episode a year ago.

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[costello]

Originally Posted by IowaFarmGal

Does your son have help like that?

My son has been through voc rehab twice. The first time I thought their services were great. He still wasn't able to maintain employment. The second time it wasn't so great. What frustrated me was that they seemed to be pushing him to apply for jobs which were patently unsuited for him.

Ideal situation would be maybe half-time, low stress, with a few "safe" (i.e., emotionally mature) people that he has contact with. The jobs they were suggesting were so inappropriate. One job they wanted him to apply for was 'crowd control.' There is no way on God's green earth that my son can deal with argumentative people and belligerant drunks. I don't know what they're thinking.

A home based business would be great! I wish I had something like that myself.

I do wish he'd look into something like that. If he were, for example, selling on ebay or some site like that, he could 'close the store' when things weren't going well and go live again when he was feeling better. The problem with relying on sites like that is that they sometimes change their fees or policies without warning. You could have a good little thing going, and suddenly find it worthless.

[costello]

Originally Posted by Sigster66

The time I went off SSDI first I did a lot of recovery work including one year of partial hospitalization. I worked a few jobs and failed right away. I decided to work as a peer counselor that was the best of both worlds. I learned about mental illness while helping others with theirs. I did that for a couple years and went back to school and got a masters in psychology. Department of Rehab did not think I could hack Grad school so they did not help until I went back to them with a 3.7 GPA report card in hand. My education and good mental health came together at the right time so I went back to work never looking back until I had a major episode a year ago.

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I hear you, Sigster. I always try to be aware that things are always in flux. What you could handle last year may not be possible today. But then you may find that you can handle more next year than you can now.

I remember reading something a few years ago about recommended reforms to disability. They had ten suggestions I think, but the one that stood out in my mind - the only one I remember - is that mental illness tends to be episodic. People go through periods when they're doing better and then they do worse - back and forth in a cycle. Disability doesn't seem to have a mechanism to deal with that. I think there may be a fear that if you're doing better and you try for employment - and maybe you even are successful for a while - you may lose your disability, and it might be hard to get back. So you're kind of forced into a situation where you can't work up to your potential during good times.

At least that's my understanding of the situation.

[Sigster66]

Originally Posted by costello

I hear you, Sigster. I always try to be aware that things are always in flux. What you could handle last year may not be possible today. But then you may find that you can handle more next year than you can now.

I remember reading something a few years ago about recommended reforms to disability. They had ten suggestions I think, but the one that stood out in my mind - the only one I remember - is that mental illness tends to be episodic. People go through periods when they're doing better and then they do worse - back and forth in a cycle. Disability doesn't seem to have a mechanism to deal with that. I think there may be a fear that if you're doing better and you try for employment - and maybe you even are successful for a while - you may lose your disability, and it might be hard to get back. So you're kind of forced into a situation where you can't work up to your potential during good times.

At least that's my understanding of the situation.

I think your right. I have seen some people with chronic mental illness that I doubt can ever work due to the severity of their symptoms but for many of us it's episodes of high and low functioning. Believe me I would have rather kept my 50K a year job and never had to apply for disability. I do think applications are up due to people being unable to find work. That was not my case. I was employed at a very good government job.

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[(JD)]

Sounds like you have thought this over rather well, even in your distressful feelings. It does sound like sticking with what you have is the right choice for now... and since you only have a short time for increases, the "what if's" of the spouse are less likely. She sounds a bit traumatized by your illness as well, and I hope you are both in therapy together at least once in a while.

Being mentally unwell in the USA (IDK about other countries) is often the choice between bad and worse care. Do your best and pray!

[liveforfish]

Originally Posted by Sigster66

The time I went off SSDI first I did a lot of recovery work including one year of partial hospitalization. I worked a few jobs and failed right away. I decided to work as a peer counselor that was the best of both worlds. I learned about mental illness while helping others with theirs. I did that for a couple years and went back to school and got a masters in psychology. Department of Rehab did not think I could hack Grad school so they did not help until I went back to them with a 3.7 GPA report card in hand. My education and good mental health came together at the right time so I went back to work never looking back until I had a major episode a year ago.

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You and me must be the 1% spoken of. I was on SSD for a few years and now work a full time job. A very stressful job that I take meds to do.

If you're unable to work right now then tell your wife. Does she think you'd be better working mentally or is about the money?

[Sigster66]

Originally Posted by liveforfish

You and me must be the 1% spoken of. I was on SSD for a few years and now work a full time job. A very stressful job that I take meds to do.

If you're unable to work right now then tell your wife. Does she think you'd be better working mentally or is about the money?

It was the money and kind of a knee jerk reaction that it's not fair she has to work when I don't. Of course I would trade feeling good and working any day. It has blown over for now and she thinks we can make it. She just has her selfish moments like most of us do. She does love me though and we will try and stick through sickness and health. I think the ECT I went through set me back for working. My memory is still crap. It really does have long term effects. ECT may have saved my life because I was so suicidal but it was at a big cost.

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[(JD)]

Originally Posted by Sigster66

It was the money and kind of a knee jerk reaction that it's not fair she has to work when I don't. Of course I would trade feeling good and working any day. It has blown over for now and she thinks we can make it. She just has her selfish moments like most of us do. She does love me though and we will try and stick through sickness and health. I think the ECT I went through set me back for working. My memory is still crap. It really does have long term effects. ECT may have saved my life because I was so suicidal but it was at a big cost.

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Then allow her her selfish moments... time to praise her then, and stroke her ego some...she sounds like she's doing a good job but of course wants you "back"... and what is fair about any illness? It's not like you're malingering...no one wishes for mental unwellness... most everyone I know would love to be healthy and making income to spend!

[Nobodyandnothing]

SSDI does allow you to work a little if you are able. Check the regulations. It is around $700 per month. There are also provisions for a trial work period for somewhere around 9 months. There is also a program called Ticket to Work for job training. I think under some of these you also keep your Medicare benefits for awhile.

I am sorry I am so vague. I also endured ECT and the side effects have been dehabilitating. Even so, I hope to be able to go back to work sometime. That goal is something I am living for.

I hope someday we are both healed enough to be employed. Good luck.

One thing a lot of people don't consider these days but should based on our high tech society is the possibility of working from home. Due to the internet, there are a lot of job opportunities out there that simply didn't exist 10 or 20 years ago. With an internet-based home job, you don't have to deal with people face to face and some of the them you don't even have to deal with people at all. Some, but not all, you can choose your own hours. If you're having a bad day, don't work! I know it isn't the solution for everyone but I do think it is a way that some people who cannot work in public due to disabilities, whether an MH one or physical one, can enter the work force. Don't give up when it comes to working; internet/homebased jobs is something that one needs to explore more before throwing in the towel.

If anyone is interested and wants some suggestions, feel free to contact me. I don't have all the answers, but have been working internet jobs for over 10 years and can throw you some ideas.

[shortandcute]

Originally Posted by costello

I worry about my son being on disability and wish he could get off. My concerns are:

1. In the current political environment, I fear the disability will suddenly be removed at some point in his life. Not likely, I guess, but I still fear it. He's only 27, so he has many years ahead of him.

2. There's a stigma associated with it. I'm less worried about others stigmatizing him than him stigmatizing himself. I don't want him to see himself as disabled to the point that he doesn't make an effort.

3. Work is therapeutic. It gives us something to do. It helps build up our self-esteem and our self-image. It lets us contribute to society. It makes up feel successful and useful. It gives structure to our days and something to do with our time. It challenges us and makes us grow. It gives us social contact.

Those are my main reasons for hoping my son could get off disability. If he never gets off disability, that's ok, but I do hope he'll try.

Right now he's in his third week at a new fulltime job. It's very stressful. There's a high chance he'll fail at it. I worry about the blow to his ego if he's fired, but frankly staying home all the time is hard on him too. He's bored out of his mind.

Maybe in other cultures it's easier. A person like my son living on a family farm, for example, could contribute as often and as much as he was able without being overtaxed. Or if there were a family business he could work in. There needs to be some understanding that he will have periods when he can't take on as much. And there are times when he can function pretty close to normally.

....and it's only natural for parents to want the best for our children, and to be concerned for their well-being....

[nicoleb2]

Originally Posted by Sigster66

It was the money and kind of a knee jerk reaction that it's not fair she has to work when I don't. Of course I would trade feeling good and working any day. It has blown over for now and she thinks we can make it. She just has her selfish moments like most of us do. She does love me though and we will try and stick through sickness and health. I think the ECT I went through set me back for working. My memory is still crap. It really does have long term effects. ECT may have saved my life because I was so suicidal but it was at a big cost.

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I had ECT too, and have major memory issues. Can't remember so much anymore. I was severely suicidal at that point too, knowing the side effects now i wish i had never done it!

You should honestly do what is best for YOU. Do what is best for the sake of your sanity. It is YOUR life, YOUR choice. If you are not able to work, then you shouldn't work.

[Intense&Preouppied]

Originally Posted by (JD)

Then allow her her selfish moments... time to praise her then, and stroke her ego some...she sounds like she's doing a good job but of course wants you "back"... and what is fair about any illness? It's not like you're malingering...no one wishes for mental unwellness... most everyone I know would love to be healthy and making income to spend!

I don't think you get it. Selfish, Self Centerness, Pride & Ego are her character defects. Which she needs to address. Not praised for them. Her verbal abuse is not appropiate in this situation. These are the least helpful things this gentleman needs hear. I had to laugh at her question, "What if I get sick too?" Answer : Well dear, I guess we'll both be collecting SSDI. (Reality) The key here is "Acceptance." Living life on life's terms. Doing the best you can, with what you've got. Find the positive in the situation, instead of only the negitive.

[shortandcute]

Originally Posted by Maranara

One thing a lot of people don't consider these days but should based on our high tech society is the possibility of working from home. Due to the internet, there are a lot of job opportunities out there that simply didn't exist 10 or 20 years ago. With an internet-based home job, you don't have to deal with people face to face and some of the them you don't even have to deal with people at all. Some, but not all, you can choose your own hours. If you're having a bad day, don't work! I know it isn't the solution for everyone but I do think it is a way that some people who cannot work in public due to disabilities, whether an MH one or physical one, can enter the work force. Don't give up when it comes to working; internet/homebased jobs is something that one needs to explore more before throwing in the towel.

If anyone is interested and wants some suggestions, feel free to contact me. I don't have all the answers, but have been working internet jobs for over 10 years and can throw you some ideas.

Wow, I wish I could find one of those internet jobs! Everyone that I looked into (which has been alot) required a lot of money to be put into it, and I was required to be on the computer quite a bit. Do you know of any internet jobs that don't require a lot of money and that will pay me for my actual work, whether somebody "buys" or not?

[winter4me]

What really makes me angry and fearful too is that our society, our government works in a black/white healthy/sick attitude that does not allow for assistance to be on a sliding scale...

I am posting something under the work and careers forum for anyone who wants to seek an at-home job.