I am new here

[michellejane]

I am a mother of a severely disabled adult daughter. she has a severe learning disability and to add insult to injury, two years ago she had a brain haemorrhage, which has left her with no mobility, no speech and having to be peg fed into her stomach.

[Yatzy]

Hi michellejane and welcome to the forum. Good to chat any time, and help if we can. You and your daughter have a lot to cope with. I'm so sorry to hear about your daughter's brain bleed. Do you get any nurse or carer input to give you some help?? My caring role is very different, I'm supporting my 98 year old and almost blind Mother. I don't actually live with her, and she has four carer visits a day, so we cope much better now. It was so difficult before her care package was set up.

[Hidden]

Hi michellejane,

Welcome to this forum. That's incredibly tough, both for your daughter and for you too. I imagine it must be hard not to lose all hope sometimes, and it's really tough at the moment getting the help that you need so that you can stay focused and energized in caring for your daughter.

Money's so tight everywhere that it's yet another struggle to get a sufficient care package into place, but I hope that at least you have that to help you. Only this morning, whilst on the bus, I met a couple who elderly themselves and were trying to cope with a 92 year old dad with dementia who had taken to escaping the house and wandering the streets at nights and were having a battle to get some overnight respite care. Both of them were exhausted and really cross.

But anyway, on the plus side, this is a forum where you can drop by and find people in a similar situation to your own and who will happily offer some support, so you've come to the right place.

[Kim-007-mathews]

So sorry to hear of your situation. I care for my adult daughter bed bound with ME but your situation is much worse.

Life is so difficult but you need to hang in there.

Have you heard of Direct Payments? Where adult social care help financially to pay for a carer to give you a break.

[michellejane in reply to Kim-007-mathews]

yes Kim, she does receive DP to pay for care, but its never enough is it.

[Kim-007-mathews in reply to michellejane]

Do you manage to get away for breaks?

I’ve found that short breaks enables me to recharge my batteries and come back in a more positive state of mind.

[MAS_Nurse]

Hi Michellejane, and welcome to this caring forum. I am sorry to hear about how difficult things are for you and your daughter. Please stay on the forum where you will continue to receive help and support from other members who understand your situation. Breathezee, Callendersgal and Kim--007-mathews have given some helpful replies. You may find the pinned posts on the screen to be helpful. You may also find the following websites/organisations to be helpful---

Headway Brain Injury Tel [phone] headway.org.uk/ They give a lot of information, including welfare and benefits information.

carersuk.org/

Take care and best wishes.

[janice01]

My heart bleeds for you Michelle....x