Discussion Boards I care for...
Oh for a life!
- By david
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Mon 28 Jan 2008 12:20
Yet again, being phoned by the day centre to pick my son up because he has had a tantrum.
As innocent as the day he was born and now 26 , he cannot accept people being different in their mannerisms. He thinks life is just one straight line with nothing but music.
My ex wanted to put him in a home so that she could continue her life without being tied down where as I promised my son I would create a future for him not realising just how much this would affect my life. I'v been out three times in the last two years since he has been home and tend to stand back when I am approached by someone wanting to get to know me better. I won't impose my baggage on anyone. Everything I do, is for him as I love him to bits. He's not to blame for the mistakes his doctor made at birth.
What a life!
Replies
- By stacy
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Re: Oh for a life!
Mon 28 Jan 2008 12:37hi david i have a brother with pws and he is a hand full and he has tantrums as well mybrothe is 2 and he keeps my family going as speaialy my mum i dont go out any more like to stay in with him and sometimes me and my boyfriend takeshim out
- By Silver lining
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Re: Oh for a life!
Mon 28 Jan 2008 19:53Hello David,
We have been looking after a 29yrs old chappie with SLD for the past 26+ years.
We have to realise that we shall not be there for them for ever, and it is kinder to allow him to go into a home when you are around, and see them settled, than to wait until the shock of your passing forces him out amongst strangers. At least if you do it now you can have some input to allow the settling in period to be better than it might be, and have some say in where he goes. If you wait until you're gone then they will put him anywhere.... Just a thought.
I hope you have the strength to let him go.
It is being unkind to continue being his sole Carer because of the above mentioned,
Love him enough to let him go now.
That will be the greatest gift you can give your son. You will also be able to have him come home occasionally or to visit him which ever you feel is the best way, for him. It is not being selfish, but looking to the future, sensibly.
It is false love of ones self to keep him, as he will have to go one day....who knows where?
Sorry to sound hard....but it is the truth.
God Bless you both
Silver
- By marie66
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Re: Oh for a life!
Mon 28 Jan 2008 22:44Hi, I care for my husband and will not contemplate a care home environment for him.
We will continue to care as we always have and do not beleive Care Homes are the right environment for him.David, do you have any help or even input from Social Services?
Consider sorting out a Direct Payment to get somebody in so you can get a regular break from Caring.
Get some assessments done if you haven't already!We did this and it's the best thing we could have done as I now have regular ME time!
marie x
- By loopy
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Re: Oh for a life!
Tue 29 Jan 2008 08:23hi there,
You are doing a fantastic job!! i have a severely autistic daughter and i know what hard work it is. I couldnt even contemplate a care home for her because in my eyes, no one can care for her the way me and my hubby do. Its unthinkable.
- By morello
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Re: Oh for a life!
Tue 29 Jan 2008 11:15Reading all these messages is so sad as I am in a similar situation, isolated and caring and wishing I could have a life and not just exist from day to day. You can never meet anybody to share your life with, how would they understand or want to know. I just pray for an early death and know if I was told I had so long to live would take both our lives. How can you put anyone into the care of people who havent a clue and basically do their job for money. At least we do it for love, lets face it we get nothing for our 24/7 care do we?
Mo
- By loopy
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Re: Oh for a life!
Tue 29 Jan 2008 11:23no, we only get the pittance that the government offer us
. Its sad that you feel so sad and i feel for you. But on a lighter note, just reamember what a fab job you are doing!!
- By trishaparis
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Re: Oh for a life!
Tue 29 Jan 2008 15:01hello, my heart goes out to u, with out sounding awful its makes me realixe am not alone, l av a disabled daughter of 21 who l love with all my heart, my partner left a few yrs back cus he wanted a life with out hospitalt rips waking nights long day l could go on but all of use here know what l mean, l wud never put her in a care home l gave birth to her l love her, but boy l think lve forgot who l am, l dont know what a night out is as she as medical problems that are hard for others to look after her,, l av a young 11 yr who seems to be left behind a lot , we shud all get togther and av a carers nite out lol , hope u feel better soon x
- By tired lady
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Re: Oh for a life!
Tue 29 Jan 2008 16:57Hi all
I Can certainly unstand how you all feel im petrified for the future of my autistic sons. I know the are still very young (4,5 and 7)
but who will look after them when Im gone.
My husband we have found out recently has aspergers
My mum passed away a four years ago.(I cared for her up until she passed away)
It only leaves my sister who lives on the other side of the country and she is older than me anyway
The have no siblings that are not autistic and friends what are they I dont have any. So that rules them out.
I hope and pray everydAY. I CAN GET THEM SOME SORT OF INDEPENDENCE.
I know none of you know me but if any of you needed me to care for any of your relatives as well. I would never turn them away.
LETS HOPE THAT SOME SORT OF MICRACLE WILL HAPPEN FOR US ALL. LIKE THE HELP WE ALL NEED. lol
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By babs50
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Re: Oh for a life!
Tue 29 Jan 2008 20:40hiya david , i too am a single parent of an 9yrs autistic/epileptic little girl + i cannot imagine ever putting her in2 a home, it makes me feel ill 2 think of it. .you ve come 2 the right place everyone here has baggage , hope 2 chat in theroom one night ? see u there xx