Bros level of functioning decreases when I'm around, why?

Post Reply New Topic

Hi there! Writing about one of my Autistic brothers . He is 19, low functioning but can communicate, he semi-cares for himself but lives with a full time carer as well as other autistic boys. There has been a problem for awhile that whenever I visit him he seems to regress to a lower level of functioning, he wont speak (not including repeating me) and he just wants to be "hugged" (not a real hug but similar). I was told it was a response to not seeing me as often, he used to live with me and it's a sign that he misses me. But I'm worried that something sinister might be going on as recently when I have gone to leave he has become physically distraught. The first month he was there I would come and go and he did not seem to care less, and that's how he had always been up until this point. I might just be being paranoid because everything does seem a-ok at his house and from all reports, when I'm not there, he's fine!

Any opinions?

maybe he's getting homesick and is relieved to see a familiar face and finds it distressing when you leave alone

if you do suspect something deeper maybe wrong you could try talking to him about it alone or maybe get him to write it down if he finds it easier to try to communicate whats troubling him

Oh dear, I don't know. It seems as though, rationally, there could be many things going on. If you want to do something with your paranoia, you can investigate the home a little, like go online and see if you can't find any reviews. See what else the home has been up to. I do that every-so-often if I am going to buy something large-ish anyway and am always glad I do. If anything, it may make you feel better knowing more about the company.

I have been privy to the inner workings of enough nursing homes to know that while there are doctors, nurses and caregivers on every level who are wonderful, attentive and compassionate people, there are unfortunately many more who are only in the business for a paycheck. Those people can become very impatient with any resident who requires what they consider too much attention, or whose behaviors strike them as annoying or difficult. Their responses to that can range from neglect to verbal abuse, from passive-aggressive physical abuse to simply drugging them into a vegetative stupor.

Its very important that anyone who has to leave an impaired loved one in the care of others remain constantly vigilant. I personally know of an incident in which a doctor in my community at a private Alzheimer's care unit, loudly berated an 80 year old man with Alzheimer's disease and OCD, telling him he was worthless and unimportant and refusing to allow him to use the phone to call one of his children. That's flat-out illegal - you cannot prevent a patient from contacting their family, but he does these things with impunity because he figures an Alzheimer's patient won't remember the incident long enough to report him. A more compassionate individual in that industry once told me "They may not remember your name from one day to the next, but they remember how you make them feel". The sad thing is, once a resident has been intimidated (or drugged) into silence, that facility which should be their home, becomes a prison.

Perhaps you might try removing him from that facility for a while - an afternoon, or better, a weekend, so you can see whether his demeanor improves. He might be more communicative outside that environment. There is clearly something going on to cause such a dramatic shift in his behavior. Best wishes, and keep us posted.

This isn't really a nursing home, more a halfway house type of thing. There's only one qualified staff member and the rest of the supervisors are volunteers, a few of which are on the spectrum. I let him come here on his request as his best friend Adzy lives here with him. I plan to ask Adzy today about how things are going with my brother, but he may not be in the right mood to talk to me. I'm also going to check out my bros body all over for any marks or anything. But the more I think about it, the more I think it's just me. I hate that because I don't want to have to stop visiting because I upset him.

Thanks for the advice.

If he gets upset when you leave, you are not the problem - he wants you to stay because he feels safer when you're there.

The fact that he's not communicating as much when you're present likely means he's AFRAID to talk to you while in that place. He may have been threatened.

+1.

He wants hugs from you because he loves you and appreciates your being there. Don't stop visiting.

So apparently it is me that's causing it. Well, not me, but the situation I guess, but yes when I'm there he wants to act and be treated a certain way and gets upset when I leave becaue that is ending. His doctor said this might have just started now because the novelty of living in the house has worn thin and when I come I remind him of his old home and he wants to go back there. But...when I am not there, he is fine and happy.

I'm not sure what to do here at all. The doctor said just keep visiting and he will settle into the routine of me coming and leaving.

Don't stop visiting him... that would probably just make him more distressed. I'd agree with the advice that you should carry on visiting, and let that become a new routine for him.

Are you allowed to take him on trips?

Without knowing your brother and you a lot of what i'm saying here is quessing, so appologize if i'm mistaken here:
- With my son of 7 we have the experience that he is less independant when we are around, he is used that we do things for him.
- Make it clear to him when you come, how long you stay and when will go again. When he knows forehand what to expect there might be a improvement.

Hope this helps

mgran - Yes I can take him wherever/whenever. He comes home once a week at least to stay the night, though that will be stopping now on the advice of his doctor to try and fix the regression problem. I do not like this at all, I think he will be very confused and upset about not being able to come home. He KNOWS he comes home on Saturday, he's had his bag packed every Saturday since he started living in the home. I guess I will see this afternoon, if he is too upset I am bringing him home for the night anyway, doctor be damned.

GabberKooij - The doctor also suggested that. So from now on I will tell him when I arrive how long I am staying for and 15 minutes before I leave I am too make him aware that I'll be going when that time is up.

I am thinking of just taking him out of the place and bringing him home. It was easier then anyway and I don't know if I'm up to all this right now, which I know must seem very selfish to you guys, but I don't know what else to do.

Good for you.

I'm not sure if a little regression once a week is that much of a problem. I spend all day at the office analyzing often stressful issues, and when I come home I want to "regress" and get a few hugs from my daughter and wife and spend some time surfing the internet. I don't think I'd be better off skipping the "regressed" destress time.


Why would that be selfish?

It is selfish because I am supposed to be helping him become independant and care for himself. I should follow through on that. He likes being at the home apart from this issue with me. If I removed him, it would only be because I don't want to deal with this problem, and the reason I don't want to deal with it? I can't be bothered. And it'd just be easier to bring him home. Now try and tell me that's not selfish.

I'm just going through one of those bad patches where everything is horrible and I wish I didn't have 2 fully grown men and a teenager in my care. I had a life once. It's a selfish patch.

I don't know. Either you are caring for him at home, letting him live with you, or you are going to the home, visiting him and taking him one night a week to provide the emotional support he needs to get through life there. Neither one of those seems to me to be at all selfish. Either way, he is lucky to have you as a brother, in my opinion.

Gawd.....that's, well, so nice of you to say. Thanks for that comment, definitely a more positive spin. Oh one thing though, I'm his sister not his brother!

Oh and in case you or anyone is interested, todays visit went horribly and I've bought him home for the night. Trying to leave without him on a Saturday was never going to happen, I knew that. You should have seen the poor bugger, no way I could've left him. The professional supervisor there thinks I'm complete sucker! Haha, he may be right.

Would it be possible for him to stay with you for a while? Based on what you have said, your brother seems capable of communicating if given the time to relax and not get all worked up. Perhaps if he stayed with you a while he would be more able to communicate to you why he freaks out when you leave him. Also, does he have any luck with typing things out? It may be easier for him to express himself that way.

And from what I can tell you don't seem selfish to me. Perhaps a bit overwhelmed by the situation, but the fact that you stick around and help those who are having difficulty when it isn't easy for you is the exact opposite of selfishness in my book.