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Struggling a bit - Carers UK Forum

Struggling a bit

Tell us a bit about yourself here.

I am a carer for my 19 year old son who has Asperger Syndrome and Dyspraxia, he is bright academically but a bit of a disaster in terms of social skills and coping with ordinary things. He struggles to stay 'on task' and he often gets very anxious. His mood can be very changeable and he frequently gets angry and frustrated.

I also care for my step father who has inoperable kidney cancer and I help my mum who has a number of health problems and is increasingly frail. They are both in their 80s. They live about eight miles away so I seem to be constantly rushing around.

My husband also had Asperger Sundrome, it can be challenging at times but he has built his career around one of his obsessions and he is successful work wise. He depends on me a bit to help him with some things and to keep him motivated when things are difficult. He was born with spina bifida and he has a number of physical problems because of this, but he can walk fairly well and he just gets on with life. His biggest problem is pain management, he has more or less constant neuropathic pain and he takes medication to help with this.

I also have two daughters one still lives at home, the other lives a few miles away. I joined the group because I am struggling to cope with everything at the moment and I have had a few problems with Carers Allowance. I just need a bit of encouragement.
Hi justontime,
You have a helluvalot on your plate. Is anyone helping you? (or silly question?)
No, not really. My husband gives me moral support but he works away all week so most of it is down to me. My daughters help a bit with their brother but they both have busy lives, the one at home is a teacher in her NQT year, the other is working full time and doing a masters degree. I have one sibling, a younger brother and he helped a bit with our parents, but in November he was diagnosed with an aggressive type of stomach cancer which has left us all feeling devastated. He is now on chemotherapy so he is not in a position to help and I'm trying to offer as much help and support as I can to him and his wife because they have two very young children to cope with too. I think we are all trying to deal with the present and not look too far into the future.
Have you any statutory supports in place?
No, my parents are very resistant to help (except me) and my son wouldn't get any help, he gets DLA but most people don't really understand how hard it is to cope.
Resistance to help....very tricky. What are their objections to someone else helping? Pride? Mistrust? They think it's your job?
Are you able to discuss this with your parents at all? Would it help you if you could delegate to a third party? Or is it other help you would benefit more from?
Have you had a Carer's assessment?

I'm asking a load of questions and maybe you just want to let off steam. I've no experience of caring for a family member with a learning disability, must be tough to watch and manage his anxieties and frustration.
It is difficult to explain why they are resistant to help. They have always been quite private people but I think mostly they just want to be left alone rather than constantly anxious because someone is coming. They have their shopping delivered now, it was a huge effort to get them to agree to that, but they turn it into a real drama. It is always delivered in a one hour slot between 2-3pm, but to be sure that they are ready in time my mum insists on them being up, dressed and ready by 7am! They will not deal with any other appointments that day and this week when my mum had to provide a urine sample on the same day (which involved me doing all the work of collecting and delivering it) she said it was far too much to cope with in one day. Mad as it sounds the main reason they usually give is that the dogs wouldn't like having strangers coming in and out of the house!

My son is resistant to help because he thinks he is completely 'normal' - he has very little insight most of the time. He has a very high IQ and he can be quite talkative (or completely silent) so if people only meet him briefly they can assume that he copes much better than he really does.

I have never heard of a Carers Assessment and I have never been offered one, I will have to find out more about it. Thank you.

Wanted to welcome you.

My son has Autism, and can appear "normal" wen people meet him for just a few minutes ( whats normal anyway ), but he is a challenge. So can relate there.

Just wanted to say hello. x
Hi Justontime,

Welcome . You have a lot on your plate! No wonder you feel like you need some encouragement.

Do you get the Asperger United magazine? It's free. Might be worth subscribing and leaving it lying around. Reading it might help your son. http://www.autism.org.uk/aspergerunited

My mum is a bit like your parents.

Hello and welcome Image