• Replies 4 replies
  • Subscribers 65 subscribers
  • Views 1999 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

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

  • 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.

Reply

  • 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.

Children
No Data