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Needing some "virtual" support...please - Carers UK Forum

Needing some "virtual" support...please

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I'm officially a carer for my 93 year old Dad but I also have an adult son who has Apserger's & learning difficulties. My son whacked his head on a door frame last week and the day after he was having problems with one of his eyes. To cut a very long story short - after 4 days of going back & forth to the Royal Free hospital, with brain scans and MRI's and blood tests and what have you, he's been called back to the emergency clinic on Thursday to discuss the results of his scan.

He's had to do all this on his own - I'd no clue as to the severity of it all until last night. I'm over 100 miles away and I've spoken to the Neurology Department who suggested he should have someone with him on Thursday. Well of course, I'll move heaven and earth to be there - but I've been trying to find out how serious this all is, but they can't seem to grasp that I'm not phoning them just to merely find out if he needs someone with him - I'm phoning as his Mother, stuck miles away with caring duties, a bad back and a trapped nerve in her arm - desperately trying to find out what's happening with my vulnerable son and make an informed judgement as to whether I need to put up back-up care in place for my Dad and make the 3 hour train journey.

My ex-husband (his Father) at first told me he would "see if he could make it" but after the long conversation I've just had with the hospital, conceded, with a long drawn out sigh that he would "have to work something out" so that he could come on Thursday.

What possible one thing in the whole world could be more important than supporting one of your children when they may have a serious health problem? I just don't understand him - but then I never have.

I'm SO upset - I'm scared and worried about my son - I'm bloody annoyed with my ex and I'm trying to act normally in front of my Dad as I can't imagine what would happen if I tell him this is happening to his Grandson - whom he idolises.

I just needed to tell someone, thanks for reading.
Oh, Ladybird, I'm so so sorry to hear of this - how immensely frightening and frustrating for you.

Whereabouts is your son? I am in the Home Counties, with good access to the M40, M4 and even the M1, if that is any help, and I work from home so am very flexible if it's any use me volunteering to be the person attending with him at the clinic?

Re Dads in general - you know, they just don't have the same kind of 'heartstrings' that we have. They don't see danger to their children the way we do. They can't help it, they just don't. They think we are fusspots and smother mothers. I've seen it time and time again with dads. I guess it's the male thing about danger - they just don't see danger the way females do. Trouble is, your son is probably the same, and if his dad talks to him, they'll both 'agree' that you are being unnecessarily worried!!!

(Just realised, you said 'Royal Free' - is that the one near Hampstead??)

I know you're scared, and why, but it's really good that your son has gone to the hospital and had a scan for a blow to the head, and I do hope he gets an 'all clear' result.

Wishing you all the best possible, Jenny.
Just sending (((hugs))), Ladybird.

Personally, I would not rely on the ex to "sort something out" as it does sound as if he could let both of you down. Is there a contingency care plan where someone could dad sit to enable you to do the journey? Or does your son have a support worker who could accompany him?

So difficult to do this caring lark when you are not well yourself.
Ladybird, I think all hospitals now are supposed to have some sort of disability/learning difficulties type person who can help out people who need a bit of extra support.

If you look on the hospital website you should be able to find contact details for PALS, who (in theory) should be able to put you in touch with someone who can go with your son and, assuming your son consents, give you the info as well so you know what's happening.

That's the theory, anyway! Not all hospitals are great at it but they should have someone there who can help him out.

I hope he's okay and things get sorted out quickly. Being far away is very difficult to cope with at a time like this.
Ladybird...so very sorry to read this. I can only imagine how worrying it is for you. Desperate to be there but life putting so many obstacles in the way. I was going to suggest the same as Mumwhocares. The PALS office should b able to offer your son some support to attend the appointment with him and, with permission, put you I. The picture after. I really hope that the result is good.

A very big sunny Spain hug on its way to you!

Bell x
Hi Ladybird,

So very sorry to hear your news. I really feel for you. I will be home to Caterham tomorrow night. If you need a lift on Thursday, I am just off j6 of M25, just outside Kent If there is anything I can do to help, please ask.

Regards, Shaz

Ladybird, how worrying and frustrating for you. I'm not nearby but here to listen and send virtual hugs and support to you. x x
Thank you everyone - thank you Jenny for your offer - I never expected offers of lifts up there, or offers to go with him - you are a marvellous lot, truly you are.

The ex seems to have got his act together so we are driving up to my son, collecting him, going to the hospital and then either taking him home, or bringing him back down here so he can stay with me for a bit, depending what they tell us at the hospital.

Honestly, all your replies restored my faith in human nature - particularly as you all have your own problems to deal with - I really cannot thank you enough and sending




to each and every one of you.
V glad to hear that you are feeling happier now, and that your ex has come through (with a bit of urging!!) and is supporting both you and his son.

Hope the head scan shows no significant damage and that your son makes a good recovery.

All the very best with it, Jenny.
Well, this has definitely not been a good day. The Neurosurgeon suspects that my son has non-progressive MS.

I thought I was going to be physically sick in the consulting room. Of all the bad scenarios I'd imagined, this was not one of them.

Feel a bit like our world has come crashing down around us at the moment. We now await a lumbar puncture to confirm. Have brought my son back home with me for a few days so we can all get our heads around this.

Life can be sh*t sometimes.