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

Sia

Hello to anybody who takes the time to read this, and thank you in advance to anybody who considers responding. I would greatly appreciate some insight Smile

I'm 23, and my brother is 22. He has low functioning Autism, and is non-verbal. My parents are his main carers (49 and 51 years of age). They're fantastic with him. They've raised him to be a mild, playful, sociable and calm young man. Respectively, I partake in more of his care the older I get.

Lately, due to certain developments in the family, I've been worried about the next 10-20 years or so. I know that even 10 years can bring huge changes - employment, housing, relationships, a possible family of my own etc. I also know that my brother's needs and tastes will be subject to some changes and some "slowing down" as he ages (i.e. we're not getting any younger!). Even so, sometimes, I feel like I shouldn't be planning too far ahead with my life. I feel like my life will eventually need to be a devoted safety net to his needs, and I sometimes feel guilty for wanting to press ahead with so much personal ambition in my own direction. I don't believe my parents have encouraged me in my education to university level, and to pursue my career, only to drop it all and become a full time carer one day. And frankly, I wouldn't want to after so much self investment. Of course I'm willing to make compromises. I always want to be in my brother's life. I just fail to see how this is possible if I have my own 'full time' life and career; especially as it is likely I would NOT choose to have any respite care provisions for him (I don't disagree with respite outright, it's just not something my parents have ever wanted for him, and I respect this).

I know this is something which would be a highly appropriate family discussion. However, my dad isn't one for talking. My mum is what we affectionately deem as "old school", in that she'd simply tell me to be young, have a life, and not worry (which is easier said than done). I'm not an only child. I have a twin brother, but despite him having a very responsible job looking after vulnerable adults, and being fully aware of our home life, he can be fairly oblivious and selfish in his life sometimes (ironic, I know). He's known for being unreliable in family matters. This aside, he also works very long and antisocial hours, and I hardly get to speak to him.

I feel lost. The impact of this unavoidable outcome seems to be developing a wider black hole in my mind day after day now. I'm not asking for a timeline, because I know life doesn't work like that. I suppose I'm just looking for some sort of similar story, kindred spirit, or something to anchor me back down to earth, if at all possible.

Could somebody please offer me some perspective(s)?

Parents

  • 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

Reply

  • 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

Children
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