Discussion Boards I care for...
Worried about the whole family...
- By VICKY101
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Thu 3 Jul 2008 17:38
My older brother has a progressive neurological disease similar to MS called adrenoleukodystrophy. As it is very rare there is little research and support available. He is 29 now, and was diagnosed at 21. My mum is his full time carer and I help when I can at weekends when I am home. My dad drinks a lot as he feels unable to cope with my brother. My brother is a determined young man, and wants to remain socially active and make new friends but forming relationships is very difficult for him - he hates to feel a burden to anyone, but I think he is very lonely. He has recently become doubly incontinent also, but understandably is very reluctant to absorb this recent development in his illness.
I have recently become worried about my mum as her mental health has deterioated a lot in recent months - she is very low in mood, doesn't have any support, and I think she feels very tied down. She had a breakdown about 15 years ago when my other brother died due to cerebral palsy. I think she needs more support and perhaps some respite, but every time I approach the subject with her she becomes tearful and blames herself for my brother's illness.
I am at a loss at what to do, I feel like I have to be a 'rock' for my family and know all the answers. Can anyone offer any suggestion for me?
Replies
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By coffee
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Re: Worried about the whole family...
Fri 4 Jul 2008 09:38hi Vicky do hope you are well?
You sound a caring yet worried individual and reading your post your mom needs help as the strain is effecting her health and in effect affecting you
adrenoleukodystrophy is a rare inherited metabolic disorder but no one is to blame for this illness we are all imperfect
There is a site that you/ family could contact
They offer advice , ways to cope ,respite, etc even a forum.
www.aldlife.org
They will help , also contact your local carer centre and social services.
Vicky would your mom mind if you contacted them yourself and ask them for advice etc ? cause maybe it would be better if you contacted aldlife yourself and mention your problem as how to tell your mom .
As for your brother there are ones on that site who knows what it is like they talk to one another share their experiences etc so he would soon make new friends feeling less lonely and this in turn would help the rest of the family
please tell me on you get on and chin up
coffee
- By VICKY101
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Re: Worried about the whole family...
Fri 4 Jul 2008 12:42Hi coffee, thank you for your reply.
We do know about ALD life, however my brother does seem to fall in an age gap between the young children that have this disease and the slightly older cases - he feels a bit 'different' if that makes any sense?! I will contact them though and perhaps get a bit more involved in some of the respite links.
I hadn't considered contacted our local carer centre, but do think its a very good idea, I'll root out some info this afternoon...think my mum would appreciate me doing this for her. Thank you again, its nice to have some outside input ino our very complicated family situation!
- By Tricia
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Re: Worried about the whole family...
Fri 4 Jul 2008 20:23Hello Vicky
Which area does your parents and brother live in?
I have a network around the north east of England and may be able to contact someone who lives locally who may be able to offer you some support and suggestions.
Saying all of that, do you know if your mum has had a carers assessment which assesses her needs not your brothers or anyone elses. This is so important for carers to get this assessment done as it gives them a tool to be able to work from in helping them cope with the every day issues which they face.
Also if you look at the incontrol website which is:
They might be some suggestions there for your brother to look at incontrol means exactly that a person with a disability being empowered to be in control of their lives.
Hope this is of some use to you and give your mum a big hug from all of us carers who use this site and that even though she will feel alone there are many of us who are in the same boat
- By VICKY101
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Re: Worried about the whole family...
Fri 4 Jul 2008 21:06Tricia,
Unfortunately we live in Oxford, South East of the country. What is involved in a carers assessment? As I'm fairly confident in saying that despite everything that is going on my mum wouldn't want anyone else stepping in to be my brother's carer. Might the assessment offer my mum pyschological support as well as practical support? Would we have to go to the GP to get this assessment done or can we self-refer? Sorry for all the questions!p.s. will definately pass on a hug!
- By Tricia
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Re: Worried about the whole family...
Fri 4 Jul 2008 22:20There is information on this website about the carers assessment you will find it on:
Usually a social worker will carry out the assessment which will identify your mum's needs. There is such a high demand for respite and outreach services that no one will step into your mum's shoes as the carer but what might be offered is other kind of support maybe just someone to talk to when needed to short break care should your Mum feel she needs a break, (we all need a break eventually or we will end up being the one who needs to be cared for after all does anyone go out to work 24/7 the way a carer does? NO they call go home or have time off from their work responsiblities so why should a carer have to continue for 24/7 without having a bit of me time to rec harge their batteries and be able to continue in caring for the person who they love.)
The GP might be able to give you more information depending if you have a good GP.
Also you could contact your local carers centre which is in Oxford:
Contact us
Manager:
Ms Jean MillerAddress:
27 Horse Fair
Banbury
Oxfordshire
OX16 0AETel:
01295 ...Fax:
01295 270 660E-mail:
carers@ ccnwoxon. org. ukHope this is of some use
take care
tricia
- By VICKY101
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Re: Worried about the whole family...
Thu 10 Jul 2008 23:52I just wanted to post to say that our family (including my brother) have been in a lot of discussion and we have decided to look into sheltered/shared housing for my brother in the 12 months (no rush!) - he's keen to get some indendance back since things have started to go downhill a bit and I think it may well give my parent's some more time to think about themselves too.
I hope the carers on this site won't think badly of us for considering handing over his care - it has been a difficult decision for us all. We will look around very carefully for the perfect place and until then we will battle on...
- By EL
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Re: Worried about the whole family...
Fri 11 Jul 2008 08:35Why would anyone think badly of you? you do what you have to do pet, no one on here will judge you dont be silly
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By coffee
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Re: Worried about the whole family...
Fri 11 Jul 2008 11:03EL IS RIGHT
Vicky who knows you might come across someone going through similar problems like you have so having this advice you can direct them / help them?
If your brother etc feel the need to go into sheltered housing then no one is going to judge you we all have freewill, besides who knows it might be the best thing that's happened to him in years .
so vicky don't feel downhearted instead chin up and keep smiling coffeex