How do you maintain (mentally) healthy?

[germin8]

Long story short: We are learning that my 30-yr-old BIL (who has never worked in his life) has a cognitive disability. (4th grade math, 7-8 grade reading/writing). But, he has little comprehension & ability to speak like a 7th & 8th grader. Possibly has ADD, too. His parents are deceased and so we are now helping him...(had another post on this, so that's a different topic).

My DH & I are "sick to our minds" helping him. He causes us great stress. We lose so much hope in him... b/c he doesn't do anything right. Plus, I think our technique is just not something that works with his personality type. (He needs to be, ummm, more nurtutured in an obviously loving, caring, empathizing way. We are not like that... we are logical, engineers... *should I lol?*)

Some days we feel he causes us so much stress that he is shortening our lives... and he will just out live us, despite our healthy eating habits and his poor eating habits. :-S

How do you deal w/ it? Seriously.

[Fay]

Basically, you've adopted a 30 year old with special needs.  Your life has just taken a sharp right turn.  You're still at the beginning of the learning curve.  

And you're still angry.  Many of us here have been angry at some point.

At some point, you'll get over the anger and start pulling out every stress management trick in the book.  That's a good thing.

You're going to have to learn to be more patient and loving.  There are some things that are out of everyone's control.  Your BIL's behaviors are probably not within his control.  Most people in the USA practice "reasonable love."  Special needs require an insane, unreasonable, unconditional love - it's like a portal to another dimension.  I never even knew this place existed.  I'm still human, and I still lose it sometimes.  But I've got love.

My husband and I don't get out much due to our child's disability, but we have creative outlets at home.  My husband does electronic music, creates art based on math equations and lots of other geeky hobbies.  I'm a writer.  I recently wrote a short blog about coping and everyday grief - and it's actually written is a very logical, practical way that will make sense to an engineer.  Your experience is very different, of course, and that's one of the points in the article.  http://blog.friendshipcircle.org/2012/03/15/special-needs-parents-how-to-cope-with-grief/

[germin8]

Thank you for sharing your story.  I enjoyed reading your blog... very real, very honest.

Spiritually, I've always wanted to help someone... and to work on my patience because I knew I needed to. God sure is "funny" to send my BIL. I feel like I'm stuck with this challenge for life! :S

I still hope my BIL can be independent. Our living situation doesn't allow for him to live with us (and I don't trust him to be near my LOs nor even work the wood stove... we are off-grid). But we don't plan on helping him his entire life... and we don't plan to change our lives for him... yet, this is a gray area. It's difficult to know when to "let him go" and difficult to know what his true capabilities are and if he can actually live in the 'real world' on his own. I am hoping to find others that can help us figure this out.

Thanks again for your blog and reality check.

[germin8]

I hope this doesn't sound mean... my situation is a little different... but yet, my BIL is still a person. Here it goes:

My DH asks: (My BIL doesn't care to do anything himself, nor the things we ask him...so the question is:)

Is it right to short-change our children's lives to someone who doesn't care about his own life... doesn't even want to volunteer to gain work experience... does absolutely nothing useful?

Is it worth giving up raising our own children to someone who doesn't care and won't improve? Our children can make a difference in this world, whereas my BIL doesn't care... and will suck your life away.

And, I ask: As a Christian, I could see how we could donate more to different charities... I would rather much see my money go to help purchase, say, a Kodiak airplane out in the mission field then help someone who could care less. Where is the line?

[Fay]

Has your BIL been taught not to care?  Is it learned behavior that is affecting his quality of life?

[germin8]

I believe he was not encouraged to do anything and probably has been told he was "good for nothing" by his own late father. But, I also see that he is like his grandmother... in that she didn't learn English b/c she was mocked over one word in her classroom. And to me, it seems like she also tried to avoid working. His late mother also seems to have done a lot of his homework during school. We can only guess this is how he got his diploma.

So, yes... learned... and I hope he can unlearn this. But, I am not so sure at his age.
I feel so unqualified to do it... and any other way costs money.

Thanks for "listening".

[Tigerle]

I have been following your story for a while, unsure of whether to chime in because I felt I could not add anything constructive as our situations were so different - for starters, we live in Europe, so I couldn't offer any practical help at all. But moral support I can give!

My SIL appears to be developmentally delayed, but as far as I know her only "real" diagnosis is epilepsy. Even though she's always had health insurance and full medical attention, even though my in-laws (a teacher and an engineer) have always pushed and tried, there has, as far as I know, never been a real comprehensive understanding of "what's going on" or an idea what useful therapy might look like. It appears it is just a really hard thing to get a grip on - I know my inlaws got of lot of "give her time", "stop comparing her to others", "it's all your fault for being unreasonably demanding", mainly because they tried the same kind of loving but structured perfectly ordinary middle class parenting with her that her brothers got and it was so clear that she was falling more and more behind, while her brothers turned out well-adjusted and successful. She's finished manual track high school. She even finished child care school - no one in their right mind would let her take responsibility of kids now! I am not sure how she did all of it, certainly no one ever did her homework for her, but it appears that she is not as intellectually challenged as she is emotionally and socially. As long as demands and responsibilities were very clear and mostly age-appropriate to her abilities apparently she did function adequately,

Now she appears to me like a pre-adolescent in a woman's body and that's how she lives, in a way - at her parent's house, in her old bedroom, watching a lot of TV, hanging out on facebook, interested in pop-culture geared to pre-adolescents. Her disability makes her selfish, shallow and immature. She' s manipulative and obstructive and altogether very hard to live with. She has had relationships, even one long-term relationships, but they all fail eventually as the demands placed on her increase. She is currently back in an assisted workshop program but has to be monitored, pushed, encouraged, threatened with consequences constantly to turn up on time, or turn up at all, or even phone in sick if she feels she "just doesn't feel well enough today" as she frequently does (she is not healthy of course). So while I am sure there is a lot that my inlaws could have done or could do differently no one can really blame her parents for not doing all they could, they did and do their best a middle class family can do. Sometimes there are limits in how much you can help people who resist.

Now our situation is also different in that my inlaws are still alive and mostly healthy, but the responsibility will fall on us eventually. I have pushed my DH to ask for information and records and diagnoses (whatever there is) so if we have to take over suddenly we can take over, but he's been dragging his feet (it's not like we haven't got anything else to do!) and so I have stopped (for now). However, we are both in perfect agreement that while we will always give support, we will never ever agree to live together because as he said, only half jokingly "someone will get murdered". We are hoping that she will be offered a place at an assisted living facility again (she had been offered one before by the same place she worked at then and works at now, with a hiatus of several years because she sabotaged herself, and turning that place down because she'd just saddled herself with a huge dog my inlaws didn't know what to do with, or maybe they did not really feel ready to let go and blamed it on the dog, who knows, is one of the few egregious mistakes I'd lay at my inlaws' door, actually). If not, we'll get her settled in an apartment near us, send over a cleaning woman once a week, make sure she sees her doctors (she actually loves going to doctors), try to monitor her medication and contraception as best we can (I have to admit a baby would be the ultimate nightmare) and have ner over for holidays. I hope she will have the sense to remain in the assisted workshop program this time and for good. Apart from that, it is all in the air.
I am a working mother of two myself and will soon be the mother of a special needs child myself (my third will be born with spina bifida and the level of impairment is not yet clear). While I am gaining new understanding all the time for what it means to parent a special needs child and it has made me more sure than ever that we will never ever withdraw our support, I also know that I will have to have VERY clear priorities in life. I will need to look out for myself because the mother is the lynchpin in any family - if the mother falls apart, everything falls apart. No help for anyone. Next, your marriage. If the marriage falls apart, the family falls apart - take care of your marriage. Take care of your children. And give your brother support, but not at the cost of your own life.

My SIL is in her mid-thirties. Your BIL is 30. They will not change. Lets give them the best support with what they can do. As a Christian (you specifically mentioned this, so if you don't really want to go there let me know) I ask myself "will she need help?" I know she will. I do not ask for anything back. Not even the good feeling that helping someone could give you, or knowing that there is this plane out there. Just do what you can to make life mostly safe for him, and lower your expectiations.

Edited by Tigerle - 5/29/12 at 1:52am

[melissa17s]

Originally Posted by Tigerle 

My SIL appears to be developmentally delayed, but as far as I know her only "real" diagnosis is epilepsy. Even though she's always had health insurance and full medical attention, even though my in-laws (a teacher and an engineer) have always pushed and tried, there has, as far as I know, never been a real comprehensive understanding of "what's going on" or an idea what useful therapy might look like.

My ds is not an adult, but recently was at a seminar about epilepsy and just thought I might chime in because epilepsy happens to all classes, races, up bring, etc.   It can be very difficult for some individuals to function.  Depending on the type of epilepsy, it can indeed cause learning disabilities (ds is dyslexic, but also participates in gifted and talented program at school) and there are forms of epilepsy, such as Lennox-Gastaut, which cause developmental delays. It is not unusual that it is comorbid with other conditions like autism.  The drugs used to treat are terrible, imo. Ds had to take 3 different aeds to find one that would control his seizures and the side effects in the first to lead to first a dx of adhd-i and then the second got his dx changed to hyper (I have wrote many posts/threads of my whoas).  His third drug, luckily, has not caused the extreme mood issues that the first 2 did.  

At the seminar, it discussed how adults could get accommodations, disability, and housing here among other things.  For some epilepsy is very debilitating because they do not know when they are going to have seizures even when on aeds (it happens because almost all are imperfect). In fact, for some aeds do not work because the seizures are drug resistent.   Also, there is a period of time following the seizure that is called the post-ictal period, in which individuals are very tired, have head aches and can be disoriented.  This period can be quite long in some people.  At least once or twice a month a see articles about adults getting arrested for public intox when in fact they had had a seizure, and it scares me for the future of ds. Some seizures are bizarre and embarrassing; the guy next to me at the seminar said that one time during a seizure he undressed at a church service.    

Not to leave this on a note that sounds like all epilepsy patients are incapable... most are fairly to highly normal functioning individuals.  The first time we went to the neuro, I noted to ds that he could be a dr. because his handwriting looked just like the dr.'s.  Come to find out, the dr. has epilepsy and dyslexia.  

Germin8, at the same seminar, we had a lawyer explain to us that for many of the disability services provided by the state, that we would have to  apply multiple times, be rejected, and then when we got a hearing in front of  a judge it usually worked.  You may have to help you bil through some processes to get the support he needs.  My view of Christianity may be different from others, but I think if you look at as how can you be a "good neighbor" maybe it will be easier to help your bil.  Since you are Christian, talk to your church and other area churches to see what programs they have to assist disabled individuals that my help provide some support that you can not.  I know a family in our neighborhood that lives off church hand outs and ss.  Neither parent has the ability to work, and with the help of various social services they been able to half way function with out family support as far as I can tell.  Good luck sorting it all out. 

[germin8]

Wow, Tigerle: That sounds so much like my BIL (except for the epilepsy part). He would watch a TON of TV if he had it. Definitely hangs out on facebook at the expensive of not doing productive work. Is interested in pop-culture geared to pre-adolescents... everything kids are interested in! He is selfish, shallow, and immature... manipulative and obstructive and altogether very hard to live with. Wow, I am in shock! And disappointed that this is the way it will be...forever. I have "caught on" to his manipulative ways and catch him often. He hates it... but he tries hard to be civil.

Thanks for chiming in. I have been trying to remind my DH that he will have to take care of his brother for the rest of his life... and he seems in denial. DH doesn't want to care for him for life. DH keeps asking the questions (like the bolds ones previously mentioned) and they make sense... so I keep hoping there will be a time to let go. I keep lowering my DHs expectations and he keeps raising them... (they are 10 yrs apart, btw, which is why DH never really knew how severe his brother's problems are). What an interesting life. I have often wondered if I even want more kids (I'm prego 12 wks w/ #2). You really do have a challenge w/ your 3rd child and your SIL. It doesn't sound like it will be easy. May God give you more wisdom... thanks for passing along yours. :)

melissa17s: Great ideas. I completely forgot about the church's help. Thanks for the tip about reapplying. I am thinking this is what will happen as my BIL gets more testing done w/ Voc Rehab, etc. My BIL gets treated (mostly) better than any neighbor I help... but, I definitely see your point of view. That would mean I would have to be "nicer". *lol* Oh dear, I'm positive that will not be easy!

[Tigerle]

Originally Posted by melissa17s 

My ds is not an adult, but recently was at a seminar about epilepsy and just thought I might chime in because epilepsy happens to all classes, races, up bring, etc.   It can be very difficult for some individuals to function.  Depending on the type of epilepsy, it can indeed cause learning disabilities (ds is dyslexic, but also participates in gifted and talented program at school) and there are forms of epilepsy, such as Lennox-Gastaut, which cause developmental delays. It is not unusual that it is comorbid with other conditions like autism.  The drugs used to treat are terrible, imo. Ds had to take 3 different aeds to find one that would control his seizures and the side effects in the first to lead to first a dx of adhd-i and then the second got his dx changed to hyper (I have wrote many posts/threads of my whoas).  His third drug, luckily, has not caused the extreme mood issues that the first 2 did.  

Sorry, I did not mean to give the impression that epilepsy isnt' something that should happen to someone from a particular class or upbringing. I was harping on about the class/upbringing issue because someone in another of germin's thread brought up that some of her BILs issues might have been learned behaviour brought up by dysfunctional parenting and germin herself was wondering if one of the problems was that they weren't "nurturing" enough. Pareents of all classes make mistakes, no upbringing is perfect, but it is easy to look for dysfunctional parenting to blame. But sometimes it is really about the individual that is dysfunctional, no matter their upbringing.

I have been wondering myself how much if my SILs issues are linked to epilepsy or to treatment of it - the anxiety, the moodiness etc.. Though as far as I know she only ever had one seizure brought on by stroboscopic lighting as an older teenager, and all of her problems were strongly apparent before that, so Iam not sure how much it is really part of the problem - more like a symptom of other things going on. I really know very little about the diagnostic side of things in her case.

Gernin, I did not mean to scare you with saying "things won't change". I jus felt, personally, that accepting my SIL as she was helped me and that hoping that "things will get better" hurt her and her family. Being dsiappointed again and again is no help at all, I promise. When I first met my SIL, I tried to reach out again and again, only to find that she was neither able nor willing to reciprocate -  there seem to be limits to her emotions, her willingness to please and be liked, to feel connected to others. (I have wondered about atypical autism, particularly when my own child was evaluated, and some of her issues were similar - anxiety, OXD tendencies, social awkwardness, problems  iwth selfregulation and explosiveness - but she can lie and fake and manipulate in ways I think autistic people can't. On the other hand, there is a depth to my childs feelings and thoughts and capacity for empathy that she is clearly lacking). If I expected more from her I'd just set myself up for more disappointment.

I feel it might help to think "can't" not "won't" with your BIL. And I did not mean that things in general wouldn t get better. YOu may be able to set up help in ways you can't think of yet, and most importantly your BL may develop trust in you which will help. I'd bet he is very distrustful of you right now.

Good luck and all the best.

[germin8]

Tigerle. *hehe* Well, we've only recently come to realization of my BILs limitations/abilities... and looking back things haven't changed. We feel that this will always be the case for us... unless someone else intervenes. :) We had our visit with Vocab Rehab today and I see a light in the end of the tunnel. The lady was nice... complimenting on the positive/marketables aspects of my BIL. He had on a smile... he so needed that. It sounds like he will get a coach and will be able to work little jobs (without pay) to find out what he is good at. I have a feeling he will fail alot... but with positive reinforcement, he may do well. Now, if he can only stop day dreaming... or whatever it is he does when he "dozes" off. The lady helping him was able to quickly identify the kinds of jobs not for him... and identify that he wouldn't do well under stressful circumstances or fast-paced conditions. Wow. I feel he is in good hands! The true test will be being in society with normal people... I think that is what continues to be a challenge. I bet it can be depressing... if he doesn't feel accepted. I wonder if he is just always depressed b/c of that... he liked moving here where nobody knows him.

Regarding trust. You are right...sort of. He totally did not trust his brother. I don't even know if he does now... but he trusts me a bit more. Either way, I don't believe that's the case so much...that's just what he says. Plus, some of what he says/thinks doesn't match up... which is why we end up speaking in circles often.

[Fay]

What do you mean by "daydreaming" and he "dozes off?"  Is he responsive while daydreaming?  How long do these episodes last?  That is the primary symptom for petit mal seizures.  These seizures are very common in individuals with ID or other developmental disabilities, and it has a direct effect on learning ability and employability.  Some types of seizures also cause changes in mood, especially an increase in irritability.  He may need to see a neurologist.

[germin8]

Fay thanks for the reply. It's not that kind of "dozing off". He really is mentally thinking about something/someone else... daydreaming about different things ...mainly transformers and this woman he likes. He is definitely responsive... just a huge day dreamer, it seems.

[Tigerle]

Originally Posted by germin8 

The lady helping him was able to quickly identify the kinds of jobs not for him... and identify that he wouldn't do well under stressful circumstances or fast-paced conditions.

I just wanted to add that this is the most likely and also the most problematic limitation you will find, just so that you are prepared. There are lots of jobs that do not require a lot of education or intellectual skills but it does not mean that you are not expected to work hard, and from my experience (admittedly very limited with exactly one case) adults with DD cannot work hard, can in fact not cope well with any consistent expectation of exertion, even the kind we'd consider mild, at all.

My SIL, being among the more able in her assisted program, was working a sorta "privileged" job at the meat counter in one of the grocery stores they are running and which are considered more like" half-way houses" for their employees with mental health issues, unlike the workshops which have jobs fit for the more mentally disabled employees, like stacking stuff up in boxes. However, she had a long bus ride and had to get up early, so with normal working hours had a long day and frequently refused to get out of bed to go, saying she felt sick or just unable to face the world or needed to see a doctor, and most importantly refused to phone in to say so, having violent explosions if her mother so much as offered her the phone.

So as an incentive and because she was otherwise doing well whenever she did show up, they offered her a transfer to the much closer store in the town center, which is their workplace closest to the "real world", on the condition that she meet certain targets of reliability. At which she decided to turn as unreliable as possible, actually managing to get herself fired from the whole program. They said they might consider taking her back if she showed at least consistency in showing up at a kind of "daycare" program (basically free art classes) which was right up her street - my husband always suspected that being able to spend more time with her then boyfriend who lived a half-hour away and worked normal hours was a stronge incentive to get herself fired, in addition to the anxiety that the expectations placed on her. He remembers that she did very well in regular manual track highschool, possibly because while the academic expectations and the workload were low, the behavioral expectations were non-negotiable. Her parents tried a lot of long-term incentives (come withus on holiday etc) but those never worked. (My choice would have been to just cut off all TV and other screen time with a timer until the end of regular working hours...)

Her relationship with her boyfriend fell apart a few years later (she could not cope with his expectations for her to help with doing up his new place and do housework) and she is now back in the program, packing stuff into boxes. She had to be eased into it starting out part-time and still needs to be driven there most mornings in order to turn up on time. But we are hoping hard that she'll stick it out for good. There is no other place for her.