To be a caregiver, or not to be?

[RMD3819]

I agree with most of what bbtondo has told you. Some of the criticism has been blunt with a "tough love” approach that other posters haven’t expressed. I wished I had this advice at the start of my journey....

My daughter is 35, married (to an angel), no kids or siblings.

Diagnosed with ADHD third grade, sometime later depression, and finally as a young adult bipolar. The details are different than yours and not as extreme but the pattern is the same.

I’ll share the details if you want but here is what I learned:

-She will never “get better”. It will always be a constant rotation of meds and various medical therapies.
-Her good periods of time (I call it riding the wave) won’t last and there will be the inevitable crash. I used to hope the positive momentum would continue but came to the realization that she will never function within the mainstream of society.
-I needed boundaries very badly but didn’t have them. My proposed boundaries usually conflicted with my wife’s lack of boundaries causing another set of problems.

I think the best piece of advice is to look at what your son does not what he says.

My daughter would make (still does) all kinds of statements but never follow through. In the end, no matter how broke she was or her current mental state, she always, and I mean always managed to have marijuana.

[reneeh63]

I hope the OP is still coming back to this...

My bf is schizophrenic. When I first met him, close to 15 years ago I noticed some odd behaviors but some of it I put down to cultural since he is Indian and has some very strong religious beliefs and practices. He works in IT and has a bachelors degree with some graduate work, but I think he probably dropped out of school due to his issues. He's managed to make a good living, but has done a lot of contract work. That's allowed him to pretty much construct his own work history and he's had some long periods (years) where he's been out of work. I say this because he's obviously VERY high functioning. Back at the beginning he was complaining of headaches and I convinced him to see a psychiatrist because there was a clinical trial and part of it included getting an MRI - the clinical trial was for people with schizophrenic symptoms who weren't yet on medication.

That was a bit of a tricky way to get him started and he got some really great help and finally got on some medication that worked fairly well for him. All this is a very roundabout way of saying that your son may be able to work himself out of this, but it's not likely without staying on medication. That said, my boyfriend still has voices every single day...all through the day and it's a fight for him to concentrate. He's lucky his IT job has allowed him to work from home for the last 8 years so he can take "smoke breaks" as often as he needs to. I don't know that he could just sit at a desk with lots of people around him and with the pressure to actually work, or appear to be working every moment.

You may want to get your son on disability, however. Or at least get started on it. His doctors can help with a recommendation and maybe there are social workers available to help you through the process - it can take many months. That's not to say he can't have what are called "trial work periods" where he can attempt to work a certain amount while still getting benefits. That would have been much harder for my bf because he would have had to give up all his savings to qualify and get on Medicaid for the healthcare benefits. I'm just saying your son may not be able to work through this enough to be able to support himself. I think we take for granted the focus necessary even for a "minimum wage job" - those jobs can actually be the hardest because you're usually very heavily supervised and can get fired for just about anything, including lateness and absences. And they likely wouldn't offer much flexibility for doctor's appts. either - or offer any actual benefits. Your son has little to lose at this point in time since I think you'd said he already tried college - he's young...NOW is the time to concentrate on treatment. Best of luck...

[banjomike]

Hi, Sonic Spork...
I'm not at all an expert on schizophrenia, but I go to know quite a few of them through proximity.

I owned a shop that was next door to an outpatient clinic. Since I did a lot of my work outdoors, and it was the kind of work that went slowly and patiently, I became a person the patients liked to hang out with while waiting for their rides or whatever.
They would talk and I would listen and work. It was always pretty one-sided, with most of the talking from them and the listening from me.

Here's what I learned:
- 19 is a very typical age for the outset of schizophrenia. Almost all of them first showed signs of the disease between the ages of 15 and 20.
- Once afflicted, there's never a 'going back' to how they were before. It's very much like a permanent brain injury. Some find their affliction manageable, others have bouts where it's bad, then gets better, then worsens again, and some grow steadily worse little by little and never show improvement.

I met a few who were living independently, but had some supervision and/or care to coh me keep an eye on them. Most still lived with their families most of the time, and when they were having a bad spell, would go to a behavioral health center for periodic intervention.
Then, when they felt better again, would go back to their families.

Some were married, but their marriages were always in trouble and in lots of drama.

Lots of moving around in them all, except for the few who were living in care homes in a permanent situation.
The affliction seems to make them restless. Almost all of them had hallucinations, mostly aural, where they heard voices unexpectedly. When they fought their condition, the voices grew more urgent and were more frequent.
Some learned to ignore them most of the time, and others said their voices faded eventually- due to drugs that worked, or time, or other stuff- so the presence of the voices wasn't very intrusive.

All of them could have moments where reality took a hike, though.
None of them ever made me afraid of them, but I would be afraid for something they could do to themselves. They didn't grow violent, but were very excitable and/or troubled in those moments.

Give that your son is so young, I think it may help if you turned your plans around.

Instead of you and your husband moving to care for his elderly father in another state, could it be possible to re-locate him where you are now living instead, so you can care for him in a place where your son is more familiar and comfortable?

Your father-in-law is more likely to stay put in his old age than your son. If you leave your son to go live in another state, he'll try to come find you sooner or later, and if that happens when he's in the middle of a bad spot, that could be disastrous.

If your father-in-law is still independent, or semi-independent, he might not need as much help as your son. There will be times when that reverses and your son' won't need your help as much as the old man.

This is only a suggestion, but I think consolidating everyone in one area would help all of you. I don't think your elderly person is as likely to cause as much disruption as your young person will.

This is sure a tough situation. My association with the outpatients only lasted for a little less than a year; the clinic moved somewhere else and I never saw any of those folks again once it closed.

Best of luck to you, sincerely.

[Suesbal]

You suffer plenty of “slings and arrows of outrageous fortune “ if you are a caregiver.

[KathrynAragon]

I haven't been my brother's caregiver but I watched my parents struggle with it (and I watched the stress of it kill my dad). My brother has serious mental health issues, including bipolar disorder and schizophrenia.

He got on disability which is THE BEST thing that ever happened. He had to be walked through it because left to his own devices he would not have had the mental stability to get on the program.

Since he is on disability, he also qualifies for subsidized housing so he is in subsidized housing as well.

Long story short, he is now settled about five hours from me and that's the way I like it. I talk to him regularly but I have refused to be his caregiver, trustee, etc. even though over the years various professionals have asked me to take it on. Nope. He doesn't acknowledge anyone, but especially me, as having any sort of authority over his life so there's no way I am going to get that involved.

So I would encourage you to get him on disability, get him into subsidized housing, and step as far away from his daily life as you can.

Good luck! It's not easy but you don't have to take on responsibility for his care long term.

By the way, my brother did supposedly earn a bachelor's degree in history but he refuses to work even part time, which he could and still maintain his disability benefits. He has never done well at any job anyway. The way this disease manifests with him (among other symptoms) is that he can honestly never seem to finish anything he starts. So he tears stuff up (or spends five or six years getting a four year degree - which I still don't think he actually finished though he will tell you he did) and creates chaos and then walks away from it all. I remember when he had one of his mental breakdowns - it was precipitated by a box of keys that my dad had for the farm. He couldn't find a particular key (though they were all very neatly labeled) and so he just dumped the entire box out and to this day he has paranoia about keys in general.

His meds do work fairly well, but he mixes them with weed and alcohol so the effects aren't great, just better than when he is completely off his meds. He remains bipolar though even on the meds.

[Lillie767]

The journey to find the right meds and the correct combination of meds is a long and painful journey. At some point, you are just grateful for a day without drama. That's a good day.