Big Brother

I got one of those phone calls we all dread last Thursday morning.  My brother was being rushed to the local hospital because he was having trouble breathing.  What has happened since is a whirlwind of events and emotions.  After a lot of testing and days waiting around it’s finally been determined that he needs a heart valve replacement and a bypass surgery.  For most people, their brother being in the hospital is probably just a blip on the radar and not much more.  For me, it’s a life altering event.  Our parents are both dead and he never married or had any children so I am his closest living relative and contact person in medical emergencies.  So that means that when something happens to him, I am the one they call and ask to make the hard decisions.  Fortunately, for now, he’s capable of making his own decisions, but that can change swiftly and I need to be accessible and involved so I can do what’s best for him.

When I got that call I had a rush of emotions.  I’m a bit ashamed to admit that I was more worried about myself than him at that moment.  I figured his shortness of breath was an anxiety attack and nothing more.  He did have an anxiety attack but there was more.  I was concerned about whether to tell the hospital staff I was his sister or brother.  That was complicated by the fact that he gave them my old name as his contact and we had to correct that with them.  I usually get around saying I’m his sister by simply stating that he is my brother.  Usually that is enough for them to leave me alone but occasionally it doesn’t work out so neatly.  So at that hospital they referred to me as his sister a couple of times but now that he’s been transferred to a big city hospital where they have a cardiac unit I haven’t had to deal with the brother/sister thing since they seem too busy to care much.  Everyone there has addressed me as he/him/sir.

I’m out to my brother but he has not gotten to the point where he’s willing to call me his brother yet.  He may never get there.  People have been telling me I’m a good sister for taking care of him.  Well, I owe him big time.  And he’s my only family.  I don’t feel like a good “sister”.  I do what I do out of obligation.  If I were a good sister/brother I would spend more time with him and be more tolerant of his irritating quirks.  You see, our dad died when I was just a baby and he was 14.  At that point he was thrust into the “man of the house” role and spent the next 20 some years financially supporting my mother and me.  He didn’t have to do that.  I know that he looks at me and my life and feels angry that he sacrificed for me and I haven’t sacrificed anything for him.  Well, paybacks are hell big bro.  For the past several years I’ve been going to his doctor’s appointments with him and helping him manage his life because there’s something wrong in his brain that keeps him from being able to deal with that stuff like most adults.  My mom always did everything for him so he never learned to take care of himself, speak up for himself, communicate with people, etc.  My theory is that he has a mild case of autism or something on that spectrum but I’m not a professional and he’s never been diagnosed.  All I know is that when I started showing up at his doctor’s appointments they were all thrilled to see me because he never seemed to be getting any better.  I would ask him about his health and he always told me he was fine.  One day he told me that his kidneys had a problem but he didn’t really know what the problem was.  At that point I decided I needed to know what was going on.  It’s been a wild ride ever since and I’m paying him back for all he did for me growing up.

This might all sound cold-hearted on my part.  Perhaps it is.  I love him, don’t get me wrong, but he and I are like oil and water and we just don’t get along so this is hard for me.  I wrote my “family” off a long time ago for the way they treated me when I came out and he was part of that writing off.  But, time heals, they say and I can’t hold a grudge for too long and it’s time to pay the piper.  So I’m spending a lot of time in the city that I hate the most in a hospital (hate those too) with a man that I can barely stand most of the time during the busiest month of the year at work.  It’s not my idea of fun.

Am I his brother?  Who cares?  I need to get him through this surgery and healed up.  And if he doesn’t make it through all this I’m at peace with the fact that I’ve done everything I can for him even if he isn’t grateful for it and thinks I’m intruding in his life.  Honestly, it’s really hard for me to think of myself as his brother.  He’s my brother but I don’t know what I am.  I haven’t seen myself as a male long enough to be comfortable with the title of  brother.  It’s an odd place to be for sure.

Adult Autism

This is going to be a very different post coming from me.  Usually I duke it out on here about my gender, but this post is about my brother.  He’s thirteen years older (that makes him 65) than me which means that I missed out on his formative years.  To say he’s always been a bit of a mystery to me is an understatement.  He baffles me.  Constantly.  I’ve never understood him.  And here’s the kicker.  He lived with my mother “taking care of her” until she died and never dated or had friends or even thought about getting married.  What I’m starting to think is that she was the one taking care of him.  She died seventeen years ago.  Since then he has basically fallen apart mentally as well as physically.   He has severe diabetes and depression and hasn’t been able to work for the past six years.  Miraculously, we were able to get him on disability so that he would be able to stay in his home and not live on the streets as he had told me he dreamed of doing several years ago.  That’s a strange dream, I think, but everything about him is strange in my opinion.  Since then he’s become a hoarder and rarely takes baths or changes his clothes.  He’s socially very very awkward and doesn’t communicate well or much at all.  When I ask him how he is or what he’s been doing he usually says “fine” and “nothing”.  That is a conversation with him.

I’ve been going to his doctor’s appointments for the past year so that I at least know what’s going on with that aspect of his life since he never communicates anything with me until it’s too late to help.  I once found out that his car had broken down on his way home from my house late at night two weeks ago and he had walked home, had the car towed to a shop and told that it was unfixable.  I found this out by him calling to tell me he needs a new car with no other explanation.  I might also add that he seemed mad at me because of it for some reason.  So, when he suddenly told me that his kidneys were not functioning well anymore I realized I needed to be more involved in his life.

On the surface, for many years, he seemed like a normal person.  But now it’s becoming painfully evident that there is something terribly wrong with him and I suspect that there always has been.  I suspect that my mother protected him and covered for him all of those years.  Without her, he is lost and doesn’t know what to do with himself.  He can sit in a chair all day and stare at the wall, take naps in the chair, and occasionally smoke his pipe and that is his day.  He can do this every day.

Recently he stayed with me for a week because his vision had gotten so blurry he couldn’t see to take his insulin shots.  It was a horrible week but I learned a lot about him.  Finally, he improved and he demanded to be released to go home.  Reluctantly and yet, relieved, I let him go.  The next time I saw him he told me he was getting a room mate.  An old neighbor lady needed a place to stay and he needed help with his meds.  It was a perfect fix for both of them.  She’s shared a lot with me about what he does all day.  The most alarming thing she told me is that he occasionally shakes his hands vigorously or scratches at himself and makes animal noises..oinking like a pig or snorting sounds and seems to not be aware of doing it.  This got me really curious so I looked it up and it’s called “stimming”.  People with Asperger’s and often Autism tend to do it to deflect stress.  I know he’s feeling stressed because she has made him throw out all of his stuff and clean his house.  For a hoarder this is extremely stressful.

So now I’m trying to learn about the Autism spectrum, Aspergers, etc and all I can find is about what to do for children with these disorders.  I’ve found nothing at all about dealing with adults with autism.  He does have a psychiatrist and a therapist but neither of them have been helpful at all.  In fact, they think he’s doing great because he’s cleaned his house out and has a friend now.  No, he’s not ok.  She cleaned the house and demands that he keep himself at least marginally presentable.  He also lies to his doctors (and me), but that’s another whole post in itself.

I’m writing this post with the hope that someone out there will see it and give me some advice.  I don’t know what to do for him.  I feel like his days of being able to live alone are over and it’s just a matter of time before I have to make a critical decision about his future living arrangements and I could really use some help.