Anxieties about the future: taking over my brother's care.

Hi Sia,

When I read your post I was happy to know someone else feels the same as I do but also saddened by that at the same time.

I'm 25 and my low-functioning autistic brother is 19. Like you our parents have been right with him his whole life and he's lucky to be part of such a caring family.  However I also worry about the future a great amount and know that a few years makes a big difference. I also have another sibling who is our older sister, but like your twin brother she is more self involved than I am in terms of our brother, and I don't think there's anything wrong with that  but I'm fully aware that it is something I consider more than she does.

I think it's safe to say that I worry about him on a daily basis, like it is always in the back of my mind and like you I feel a certain guilt that I want to get on with my own life but also want to be there for him. I am engaged and soon to move in with my fiancé and start a new chapter. 

My brother is quite severely autistic, he flaps his hands and hums a lot. He is easily agitated and can be very very awkward, which is sometimes comical but draining at times. He is not one of these autistic people who could live on their own and get by as an adult, sadly he requires full time care and always will do. So I know that one day I will be regularly visiting a home of some kind... Or maybe I will be his carer and he lives with my future family and I? I really don't know. My parents are all for me doing well in life, so I guess we differ there, but I wonder if your parents do wish you all the best on our own journey and maybe you are seeing it differently because of your worries. 

I guess as time goes on there will be more and more help for adults with low-functioning autism. As isn't it becoming more common? But I have to say I'm right with you on this :) 

Sorry I have been of little help, I've just spoken about my situation, but it's nice to get it out of my system. 

I think we both need to accept that we must get on with our lives and make the most of what we have, but always have our brothers best interests and to love them dearly :) 

Hi Sia,

I've read your post and feel compelled to respond to you and hopefully this will help.

My story, in brief, relates to how I ended up caring for my parents. My mum had Parkinsons Disease for 22 years and my dad ended up with dementia. I was living 90 miles away, I had a full time job, 2 kids, a dog and a partner who was not terribly helpful (trying to be polite here) and like you, knew that eventually my mum's needs would probably outweigh my own. My dad, bless him, was devoted to mum and nothing was too much trouble for him, however, he was also riddled with arthritis and was in constant pain. It all came to a head 8 years after her diagnosis when she was so poorly she had to be hospitalised. My dad was too exhausted to realise the extent of how unwell she was.

From there, my life turned upside down. Fortunately the kids were a lot older and less needy. I used to travel the 90 miles on a Friday evening after work, sleep with mum so that dad could get at least 2 unbroken nights sleep (mum needed help to get in and out of bed to go to the loo - normally 3 times a night!) and I would go back home on Sunday evening. I would do this 4 weekends out of 5, with my brother going when I didn't. After 9 years of this it was a natural progression to move back home with mum & dad, kids had left home, I no longer had a dog or a partner, and give them the constant care they so desperately needed.

At no time did my parents expect or ask me to do any of this. Their stand was "you live your life sweetheart we will be fine", they were fully prepared for a life in a Nursing Home.  I did my best to live my life, however, you always know there is that possiblity it could all change.

I am grateful that I'd had the luxury of being weaned into a full time caring situation rather than being thrust into it and it was the most natural thing in the world for me to do.

With regard to respite, whilst I understand and respect your parents choice in not wishing to follow that path, I would suggest that they possibly reconsider this. I appreciate that they are still young and perfectly able to cope at the moment, when they are at an age where they may begin to struggle, or in the worst case scenario one of them has a medical emergency that changes their life, you are away on holiday at the time and can't get home. Who will look after your brother then? It would have to be an emergency respite situation and sadly your brother won't be familiar with that regime. If he were to have regular respite care then he would be familiar with his surroundings and will certainly know that he isn't going to be there forever, you and the rest of your family will be confident in both his mental and physical wellbeing.

My main message to you is you are right to consider your brother's future, you obviously love him very much. You are also right to consider your own future just do not base your future on what if's. Lead your life, follow your career, when the time comes that you need to become more involved with your brother's care you will find a way to make it work no matter how impossible it may seem. The fact that you want to care for him will make the choices you have to make a lot easier.

Take care and have a great life, you deserve it.

Hello Sia. It's a strange thing about the future. We know it's coming, we try to imagine how we want our future to be, and yet often on here people will say that they have an autistic child. They're the ones who forget that they have an AS person, and people grow up.

It sounds to me like your family is the opposite - certainly you are, and I'm glad to hear that you have a life of your own. I like that you're considering the implications for your brother too, it shows what a caring and responsible person you are and it's unfortunate that your personal qualities also mean a personal burden of mixed emotions and confused thoughts.

I think you're suffering perfectly natural 'fear of the unknown'. I hear that some things are giving you great concern, and you're worrying about having to be responsible for your brother. Cosidering that you have normal plans for your life, I'm not surprised that you look on the prospect with trepidation. There's a big black hole in your mind where there should be a plan, but because you don't know what's going to happen, you can't make one and that's what holds you back from knowing what the 'right' thing to do is. That's hardly surprising but at the same time is tortuous for an obviously caring person like you.

There are no right or wrong answers, there are only answers that will work for you and your family.

I have a friend who works in a house for AS people. As far as possible, the staff are there to facilitate the residents' lives, not to run them, and of course residents' needs and abilities vary. What stays the same is that there is always assistance, the house is maintained well, and so they live in a safe and supported environment. My friend's personal qualities are such that she makes very good relationships with the residents, but then she has an AS friend that she's known for a long time - me.

What I'm trying to tell you is that it isn't doom and gloom at all, quite the opposite. There are alternatives that work very well, and whatever you decide you will still be involved because you'll always be looking out for him. If you think about it, you care about your other brother too, in the same way, but not nearly as intensely because he's managing his life. If it went wrong for him, you'd be there. I call that 'family' and that how it works.

Of course you feel that it will be all your responsibility, and it may very well be - who can tell? You would have to choose to be though because no-one would expect you to put your life aside to help with someone else's, family or not. You will also find yourself amazed by the amount of complexity that life can bring, and your ability to handle it.

What you put across to me is that there is a mass of thought and concern in your head at the moment brought about by some changes that have given you a new perspective and changed the game. Experience tells me that it will gradually clear itself, it's just that there's so much going on that at the moment you can't see your way through it. You've made the best start though, you're thinking about it.

You need to have a family conference of course - none of this is your sole responsibility. I think that it won't be comfortable, but really I think you know that it's unavoidable if you're going to find some peace of mind. Here is the only comparison within my experience.

As an AS person, I've had 'support' needs all of my life, mostly without knowing that that's what it was, but that isn't relevant here. I had two sisters who both cared about me, but one went off for a life of her own. The other one was always my 'safe haven' when the world (all too frequently) got too much. I cannot emphasise enough just how much she was part of my life and therefore just how much she guided me. You'll laugh, because we were four years apart, but we compared our reltionship to 'twins'. You'd know the truth of twinship better than me!

When she was diagnosed with terminal cancer, she had three months to live. Her main concern was what would happen to me. I thought she would be more concerned about her kids, but her attitude was that she'd brought them up and knew they'd be fine, so she really didn't worry about them and anyway, they still had their Dad. Sad and regretful to be leaving, of course, but not tinged with fear or concern, except when it came to me. Truth was, I didn't know either, but she faced her fate with courage and dumped me with the challenge of doing the same. I'm trying to live the rest of my life with the courage and expectation that her love for me gave to me. People die, love doesn't.

I won't try to describe to you the enormity of this event in my (AS) life, I don't think I need to because you strike me as someone who can imagine it anyway. I haven't come to any harm, I'm reasonably safe, I miss her dreadfuly, but that's just life, and if I've got the best I'll ever get, there's nothing wrong with what I've got. We had one last, calm discussion, we loved each other very much and we weren't stupid about it - no false excess of emotion, no tears, just acceptance that what will be will be, and we can't stop the inevitable.

So here's my encouragement to you whose words remind me so much of her. Life deals a hand, and we play it. We can complain that there's a key card missing, we can kick and scream about it, but it won't change anything and when the 'emotion' is gone, we still have to have a rationale for playing what we've been dealt. And if you think about it, the more you 'play' the better at it you get!

So it is with you. Life isn't a film that we can 'freeze' at the good bit, and you're only too aware of that, but please, trust yourself. You're starting from the right place because of who you are, and you'll deal with whatever comes because you can. Right now, you don't know how you will, but somehow I seem to 'know' that you will. You're all going to be OK, and sometimes, OK is the best we can hope for.

I can only say what I say and hope that you find the encouragement that I'm trying to convey to you. I wish you all well

Hello and welcome,

   I'm not old School, at least I don't think I am, but I would also advocate that you do indeed get on with your life.

Despite being a carer for most of my life; i was also a child carer for my younger brother when my mother became sick, i gave little thought to the potential care of my ageing parents or even provision for them as they got older. I had kids of my own when i was thrown into the care of my elderly Grandmother, after the sudden and unexpected death of my mother.

This ment long days on the road back and forth for a good couple of years before I suddenly realized that I couldn't do it any longer and that I needed to up sticks and move closer to her, to facilitate her Care. Frankly it was the best move I've ever made.

I'm not saying it was easy. I was a single mum, with three young children and a physically disabled relative to care for, but it was a pleasure to care for her. Far from being a chore, she became a part of my life that I would not have missed for the world.

As I grew up with her in my youth, it wasn't a difficult choice to make, however, it never felt like I was putting my life on hold. She was part of my life and that of my childrens and a privaledge to care for and hopefully, the care I afforded her, will also stay with my own children and show them what it is to care for others who are in greater need.

I'm not at all surprized about what you say concerning your twin brother. In my limited experience, those that care for a living often are not able to transfer their care skills to their own families situation. However, things may even change in his circumstance in the future and he may be able to offer support if necessary, even if it's only spasmodic.

I'm a full time Carer for one of my sons who's diagnosed with Aspergers. (I have 2 on the spectrum, both high functioning.) so my Care commitments continue to this day, but it's how my life has panned out.

I guess what i'm trying to say is that it isn't all doom and gloom. It's hard work certainly, but it also has it's rewards. Seeing just small achievements or making a small difference to others makes all the work worthwhile.

Paradoxically, i've now also developed a small (part time) business from home which has been founded on my experiences as a Carer and which supports and affords other Carers, respite and a well earned break from the daily job they do so diligently and so selflessly. (Who would have seen that career choice coming!)

We have no Crystal ball and life will probably throw us curve balls we will never see coming, so you cannot plan for every eventuality, but if you suspend your life on hold, waiting for a commitment that may never happen, you run the risk of feeling resentful and feeling that the balance of your life is spent wondering 'what if?'

Live life, enjoy life and cross that bridge when and if it comes to it.

Good Luck

Coogybear. X