Coping with ""Episodes"" (Warning-potentially frightening material, but not Asthma-related)

Hiya everyone,

Hope everyone is doing ok.

I have an older sister (she's 24) and has severe Autism, she can't talk read or write. Because of this we have to make all decisions for her medically, own her house on her behalf, her car etc. When my parents can no longer make decisions for her (due to their health or them no longer being around) I will be (at least in part) responsible for making the decisions, along with some or maybe all of my other siblings (there are six of us in total). I thought nothing more of this, and one day me and my siblings will have to make these decisions, by nominting one main next of kin or by all collectivey being as responsible, whatever we decide when the time comes because obviously my parents won't be able to do it forever.

She had a really really bad epileptic fit today, the support worker who was with her was hysterical when she spoke to my mum. My sister was going blue, frothing I dread to think what her blood pressure was, she looked like she was ""stiff"" according to the support worker. She thought she was going to lose her. Anyway she was rushed to hospital and it's all being dealt with and brought under control. Things are going to be touch and go for a while. But all I keep thinking is, what if my mum hadnt have been able to asnwer, and they'd have rang me. I don't regret my decision to be a contact at all she's my sister and I'd do anything for her, but I guess I'm just scared by the reality of what that brings I suppose. I guess I just wonder how other people who are faced with such decisions and risk such episodes happening cope. I thought there could be people on here who can relate to that kind of thing, despite the condition being different? Anyone know how it feels? and what helps you cope?

Cheers

Claire x

3 Replies

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  • I'm hope someone will able to provide a more personal answer than mine, but I just thought it worth mentioning that when I googled ""carer support"" loads of sites came up - possibly some may have forums like this?

  • Hi Claire,

    I'm really so sorry to hear that your sister is so unwell. It must be a tremendous worry for you. I'm thinking of you and your family, and I do hope things improve soon.

    I've nothing but admiration for you for agreeing to be a contact and decision maker for your sister - such a brave, selfless and difficult thing to do. I can't really imagine what it is like, not having been in that situation. I don't really have any useful advice, I'm afraid - only to take each event as it comes, and not to worry too much about the future - easier said than done, I know.

    My husband has lasting power of attorney over my affairs, both financial and medical, so that he can make decisions for me, deal with my finances etc when I am unwell. We set this up after I was ventilated for seven weeks last year - during that time, I was unconscious and unable to deal with any of my own affairs, and incurred debts and penalties from not being able to pay bills, etc (the fees charged were eventually refunded when we explained the circumstances, but it was a lot of hassle that could have been avoided if my husband had had the authority to deal with things on my behalf). I would really recommend looking into setting things up on a legal basis if you haven't done so already. It does make things easier at a stressful time.

    Of course, my situation is a little different, as I am competent and able to express my views now, and all my husband has to do is put my views into practice if a time comes when I am not able to express my views. I suppose it is a bit more difficult if you don't know the wishes of the person concerned and they are not able to express them. I guess this is where having several people involved comes in useful - so that you can discuss and come to a consensus about what would be in the best interests of the person concerned.

    I think it is always going to be difficult to live with the reality of the possibility that your sister may have another episode, and the potential responsibility that that puts on you. All you can do is do the best that you can each time, to make the right decisions for your sister. You may not get it right all the time, but as long as you make decisions in good faith with your sister's best interests at heart, you will have nothing to reproach yourself for.

    I think the suggestion of getting involved with a carers' support group is a good one - you might well find some useful support and advice there. They are not just for people involved with the day-to-day personal care of a person with a disability, but for anyone involved with caring for someone in any capacity.

    Thinking of you and your family; I hope your sister recovers soon.

    Take care

    Em H

  • Hiya there,

    Thanks for your replies. She is doing ok now and is back at home, although she's obviously tired and washed out. She went to my parents' house for Sunday roast today so I think that cheered her up.

    We can make decisions for her legally and take charge of her finances etc so that's all sorted.

    I knew from being young that this could potentially come, my parents never hidden from me the seriousness of my sister's condition and how quickly it may change. Although they have never ""forced"" any of this on me at all, I chose of my own back to be a contact and to become more involved as my parents becomes less involved in the future. We're her family and know her best and I feel we should make the decisions.

    She's undergoing tests to find out if there is a underlying condition/illness or reason why she had such a bad fit, she does have them fairly badly anyway (as in uses home Diazepam to bring them under control, which i think is quite unusual) and lots of other meds. Her appointments with her cons and neurologist have also been brought forward. Suppose it will just be touch and go fo a few months whilst everything stabilises again.

    I'll keep you posted, thanks again

    Claire x

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