I Need Help To Make It Through...

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My father is in the hospital dying.

The doctors said they've done all they can do.

I am a 44 year old man who has discovered the possibility of having an ASD of some kind. I have always known that something was "wrong" with me but could never quite put my finger on it.

Having a parent in this state is going to mean a lot of changes for me. I'm doing the very best I can right now preparing for the worst; the doctors say that it's just a matter of time as his kidneys shut down and the toxins in his colon take over.

I am slowly trying to go through the process of getting a diagnosis. A lady from the local Autism agency has been a BIG help and encouragement, but she is now on sick leave. The arrangements that need to be made - I will have to take care of since it's just me and me mum in this city with relatives across the country. So far my relatives have commended me on what I have spoken to them about. But I have no idea what lies ahead for my life OR how to get there. This is a recurring problem I've had throughout my life.

I just needed to say that.

PLEASE keep my mum in your thoughts.

First off, there is nothing "wrong" with you, Surreal. You experience the world somewhat differently from most other people, but "different" does not automatically mean "wrong".

Secondly, me and my family went through a similar situation about six years ago when my grandfather died. He had a very rare kind of leucaemia and from the moment they took him to hospital it was clear that he would not return home. My mother (it is her father I am writing about, not my father's father) tried to pretend otherwise until the very end, but I did not have much hope for my grandfather because I had read up on his illness and knew it was fatal.

He was in hospital for about nine weeks before he died and he was troubled by several secondary illnesses in the meantime, like pneumonia. It was a very hard and trying time for all of us.
It was not easy when he died, especially as he was the first of my grandparents to leave us, but on the other hand, he lived a good live. He did not become as old as he might have without that leucaemia and it really hurt to lose him, but he had 71 years, most of which he spent around people he liked and he had a home where he felt welcome.

Even though he did not perceive much of the things that were going on around him towards the end, I think he was aware that my family was visiting him every day and trying to do whatever we could to ease things for him. I think he felt us holding his hand even when he was not aware of much beyond that and that it helped him not to be afraid too much.

It is always sad to lose somebody you love and seeing them go through a prolonged illness before the end can be especially difficult, but the best you can do now is to figure out things for yourself. If your father is still conscious, I think you should talk to him and let him know that he is not alone. If there are any things that you feel you need to talk to him about, now is the time. I didn't get that chance with either of the two grandparents I have lost so far and with my other grandmother the dementia is bereaving me of that chance even before she is dead. I think it is important that you try not to hold grudges over things that cannot be changed anymore.

And as to the neccessary arrangements to be met afterwards, we had a really nice lady help us who does those things for a living. If you do not know which steps need to be taken in this situation, Surreal, do not be ashamed to ask someone for help who has more experience in these things.
Losing a family member is a difficult situation and it is only normal if you need some help with the practical arrangements. Just about everyone will understand if you need some support, be it emotional or practical, in this situation.

I hope you will find a way through these troubled times and that you will be able to find a way to handle it all.

Thank you BOTH so much.

It means SO much to read about the experience, strength, and hope of others who have been through the same kinds of things.

I have been talking to relatives about how I think things should go because my mum is sort of in a state of shock, denial, and anger. Y'all it's HARD for me to know how to comfort her when she cries. I held her awkwardly - I didn't know what to SAY when the doctor called this morning. I kept saying, "I'm SO sorry...I'm SO sorry." And still, I had to keep a cool head so I could get to the hospital.

I have talked to relatives about funeral arrangements and they think that what I'm saying so far is on target. I have a cousin about five hours away who says she'll drive down whenever I call for her.

What I'm concerned about is what lies ahead.

I once shared at my Twelve Step homegroup that when I was little, I always wanted to be RICH. But I never had any idea of how to GET there. This has followed me through my life. I never understood what to do after high school; I could've graduated early but stayed the extra semester. I called myself just cruisin' but the truth is that I had NO idea what to do with my life. I had no idea what I wanted to study in college...how to get that to lead to a career...I wound up with a major that I chose because it was the path of least resistance. I had no idea of how to go about a career or how to deal with career changes or anything.

Now I find myself, at 44, working a job where the people I work for don't want to see me advance because I won't get married or have kids. Even been told that I don't need to if that's how I feel. So I'm being bullied.

My mother will probably want to return to her hometown. She already stated that she doesn't want this house. I'm in debt up to my eyeballs and will end up living in the streets, I'm afraid.

The Autism Lady who comes to my homegroup is on sick leave so I'm on my own there until she comes back around. She and my doctor think it may be worth it for me to seek diagnosis.

People REALLY need to think TWICE before they say that an adult doesn't need a diagnosis. When I was a kid, they didn't HAVE a diagnosis! I can look back now, though, and see that there were some kids from school who had "problems" that nobody really understood. But in retrospect, those kids were probably specifically Asperger's - especially the one kid who stimmed with his eyes. And even me and him have some similarities - his are just MORE pronounced.

Thank you, WrongPlanet for giving me a place to share and thanks again for the concern from Chronos and FluffyDog.

When people tell you they think you're selfish because you're not in a relationship or married with kids and that you don't deserve to advance, it's pretty plain.

When people say things to other people like, "You can tell who the LOSERS are here that nobody wants to be bothered with," and YOU'RE the only person in the room besides the two people talking AND they've made the aforementioned statement as well, it's pretty plain.

When your supervisor is within earshot and tells another staff member that she's GLAD you didn't get promoted to another department (somone IN the other office got it) AND that she wants you to stay stuck in the position you're in until you "learn how to FIT IN," it's pretty plain. And by fit in she means marriage, kids, and them being involved in what goes on in your life OUTSIDE of WORK.

Then like COWARDS, they DENY it when you confront them with it. AND THEN they wonder why you feed them with a long-handled spoon.

Anyway, the hospital called and said that they've reached the limit of what they can give my father as far as oxygen and blood pressure medication this morning. And some cousins are there now. Thanks again for being here for me to vent.

I'm tired of venting, though, I want to see my websites to completion and work on material; for a book called Survival. Unity. Faith. Service. Freedom.

Hi Surreal,

First of all I just want to say I think you're amazing for being as strong as you are and coping with everything life is throwing at you.

Have you spoken to your mother and asked her what she plans to do with the house? I know it may be hard to try and talk about with her at the moment but you are her son and she obviously cares for you, so I'm sure she will understand your fears. You could say that you're not expecting any firm decision but explain that you would just like her to think about it and let you know, so you can start making plans. I'm sure whatever happens she will make sure you are ok, because you're her son and she obviously cares for you.

With regards to your job, have you started looking for a job at another company? Perhaps not straight away but it's worth having a look and seeing what else is out there, it sounds like you have a good CV.

I hope that your father is comfortable. It's good that you have some more family there to give support and comfort.

Thanks Bunneth.

I talked with my sponsor this morning. One of the amazing things about WP is that it has been said in these forum that a Twelve Step Fellowship is one of the best things a person who MIGHT have an ASD can join. It really is social skills training for adults who have other problems. My sponsor tried to help me get centered by telling me to live Just For Today; if I do that I have nothing to fear. It doesn't make this any less scary, but I'll get down to one SECOND at a time if I have to!

My cousins and aunt are here and by his side. I've had two hours of sleep and held the phone all night trying to keep it from disturbing mum. Neither one of us can go back to the hospital right now; pacing back and forth only seemed to raise my blood pressure.

As for the job, I called in to say that I'll be out indefinitely. I'm off for the rest of the year as of the 17th anyway. I'm working on something I hope will make an impact on the world one day.

Thanks again.

Hi Surreal. Just take it one bit at a time, in little chunks, if you can. Maybe just think, "Ok, in the morning I have to do this" then when that's done think of the next thing. Maybe that will help with the mountain of responsibility you're dealing with now. I hope you're able to find the energy you need to do everything.