mrsblint wrote:

Paul, Hello, AGAIN!! I've made a boob, so much on my mind at the mo! My last reply was for the Blue Badge, not DLA, i'm so sorry. BUT still think with the heart condition it's worth persuing DLA.

I'm helping our friend with AA and CA, and another friend with DLA, which she was refused, plus the only help for my OH whose Mum has Alzheimers So, all in all, lots to think about, no wonder my grey cells are confused!!

I don't think I'll offer any more advice in case I totally confuse the entire Forum posters!!

Take care,

mrsblint

Thank you for the reply, your ad vice is appreciated, there are lots of differant get out clauses for the DLA and other benifits, you might qualify on one count, then be overruled on another, alot of the time its down to the person dealing with the claim and there interpretation. Beta blockers leave people tired and overwhelmed, some of the side affects are depression and other mental problems, in some cases panic attacks and anxiety, this my wife already suffers from, but she needs the beta blockers,so we just have to deal with that. How many of you suffer from a system of one fits all for benifits, rather than a system with the carer in mind. No system is perfect, so you just have to fight for what you need, some times you win some times you lose. and to you Mrs Blint, Kale Spera, F Hristo .

but it's kale mira from me! Get out clauses, urgh! I'm sure many folk on these threads can relate to these, sadly. How are you all today? It really is good to keep posting on here, even if nobody can help it's good just to talk.

best wishes across the miles to you and your family

Hear, hear. Stick with us, Paul, don't be on your own.

Hi all, just an update for you all. Had a couple of easy days, not done to much, weather is getting warmer everyday now, so been recharging the batterys. About 2 months ago i sent a letter to Gordon Brown, not only about our situation, but also other carers, was quite surprised to get a reply yesterday, although it was from a secretary, it said my letter would be passed to the relevant department, and i should hear from them soon. Will not hold my breath though. Take care all.

This is appalling.

I KNOW I will be hated & slated for this, but your child should never have been put on a life support machine; it's my sincere opinion that she was used as a guinea pig by medics. Naturally (i.e. in nature) she'd have died, peacefully and with dignity. But due to medical intervention in her freedom she's suffered terribly and so have you and your wife.

Don't know what else to say. Do I say "keep on"...."keep suffering" or "walk away" because YOU are important too.

But I send love and support to you, despite my gut feelings that you're making the wrong decisions for the right reasons.

jessie wrote:

This is appalling.

I KNOW I will be hated & slated for this, but your child should never have been put on a life support machine; it's my sincere opinion that she was used as a guinea pig by medics. Naturally (i.e. in nature) she'd have died, peacefully and with dignity. But due to medical intervention in her freedom she's suffered terribly and so have you and your wife.

Don't know what else to say. Do I say "keep on"...."keep suffering" or "walk away" because YOU are important too.

But I send love and support to you, despite my gut feelings that you're making the wrong decisions for the right reasons.

Hi Jessie, we are all intitled to our opinions, i for one will not hate or slate you, but what i will say is this, its our choice, in my opinion she fought for life, and we will do our best to give our daughter the best life we can, whatever the circumstances. I certainly do not think she was a guinea pig, nature can be hard and cruel, and also beutifull and enthralling, the same as life, you get out what you put in, maybe that rule does not work everytime, but i believe i have become a better person because of my experiance. Maybe not everyone can say this, maybe your experiance is alot differant to ours,again we all have our own opinions.

PAUL, Thinking of you all, especially your beloved daughter, and send (((HUGS))) across the miles.

Sincerely,
mrsblint

What an absolute terrible day, Kerry Ann has been an absolute cow today, not her fault i know, but she has drove us mad. Her mood swings are getting worse by the day. Today she started moaning and has not stopped all day, feel exhausted, and understand even more why my wife has had enough, it is a very manic type moan/ scream, which just gets louder and louder, you can watch her wind her self up, it does not matter what you do she will not snap out of it. She stopped about 20 minutes ago, and is now manically laughing and shrieking, there is no escape from it, useally we can close her bedroom door and let her get it out her system, but lately it goes on for hours on end, non stop with no breaks, there is no break from it or escape. just an absolutely crap day. Have been trying to finish a report for an old customer who needs it for a court case next week, just got no energy or want to get it finished. here is a pic of our little monster, a 20 year old monster, bless her, just hope her manic mood swings calm down soon. Thanks for all your support.

paulingreece wrote:

About 2 months ago i sent a letter to Gordon Brown, not only about our situation, but also other carers, was quite surprised to get a reply yesterday, although it was from a secretary, it said my letter would be passed to the relevant department, and i should hear from them soon. Will not hold my breath though. Take care all.

You'll always get replies from the PM and Royal Family.
You'll get a reply from the 'relevant department' too but I doubt it'll be worth reading.

jessie wrote:

This is appalling.

I KNOW I will be hated & slated for this, but your child should never have been put on a life support machine; it's my sincere opinion that she was used as a guinea pig by medics. Naturally (i.e. in nature) she'd have died, peacefully and with dignity. But due to medical intervention in her freedom she's suffered terribly and so have you and your wife.

Don't know what else to say. Do I say "keep on"...."keep suffering" or "walk away" because YOU are important too.

But I send love and support to you, despite my gut feelings that you're making the wrong decisions for the right reasons.

I'm certainly very open to the 'giving up' idea. In doing so, there's always the possibility of better care being provided and it's a lot less stressful on yourselves - which is a BIG plus. It may well not be your preferred choice and maybe it's something you could consider getting help with from professionals. I think your Doctor may be a starting point on this - explain the situation to them.

Even if you really don't want to abandon your daughter, remember that many perfectly healthy children are 'given up' by parents. It's not like you haven't tried, and tried, and tried. Knowing where to draw the line on various decisions is often the hardest thing to decide and getting the right support (mentally, emotionally) at the right time for your selves and your daughter can be a battle in itself.

In such difficult circumstances making any positive decision is such a grey area. It would be great if you could find a means of trialling different options until you find one that suits you all the best. If your daughter went into care for two weeks to give you a break for a start. Then find out how she found that to see whether it's worth doing again, maybe for a longer period.

No easy decisions but if you can get 'outside the box' for a while, maybe it'll be easier for you to see a way forward acceptable (even if not ideal) to you all.

Good luck.

Mike.

Hi Mike, thanks for the reply, one of the many problems we have is there are no services here, if we return to the UK then we would lose everything we have here, Kerry Anns physical health is so much better here, i find myself saying we will put her into care, but in reality could not live with the guilt of doing this, Kerrys care needs are many, and i worry about what will happen, when she had her back operation in Stanmore, we emphasised the fact she needs constant attention, the day following her 16 hour operation we found she had got hold of the bed control and was perched on a folded up bed, the following night they lost her on the ward, later finding her in the playroom, this is a hospital that knows and deals with disabilities, but could not provide the care needed, they said they had never had a child moving about the day after a double scoliosis operation, and could not understand what had happened and why. So would i trust a care home, no i would not, i do not believe they could or would provide the 24 hr care and watching Kerry needs, so it looks like we are stuck, my little rants on here help, tomorrow is another day. probaly the same, but we go on, thanks for your input, it all helps.