Today I had an insight into how vulnerable my daughter is. How events could turn out differently if things are not handled the right way. I went to her school at 10.30 to pick her up for an exciting day. We were going to visit the college. I got there and walked into the duty room and asked the carers present if B was around. They said no, she should have been here at 10 but we haven't seen her. They then proceeded to ring up the school reception to find out why she hadn't come down. Whilst they were doing this, I decided to walk the 10 metres to her bedroom to drop something off. As I got near to her room I could hear hysterical crying and her door was shut. SHE WAS IN THERE! I opened it to find her in a right state. Apparently she had come back 15 minutes earlier and gone in to change her t-shirt and shut the door. Why she didn't call someone I don't know but she was distraught at being there on her own for so long.
I walked back to the duty room, noticeably angry. They were apologetic and said she normally says she is back. Well this time she obviously didn't. I got her calm and took her to the college where we had a fabulous day.
Upon return I spoke to the care co-ordinator and expressed my concern that no-one could account for her whereabouts from the time she left her class at around 10 to when i arrived at 10.30. Anything could have happened. She could have had a seizure, she could have been driven off by some stranger (cos believe me if they said they knew me she would go!) or anything. And why the care staff didn't ring to see where she was when she didn't arrive by 10.10 I do not know.
So a message left on my ansaphone when I get in by the Care Manager. Its unacceptable what happened, she is investigating why no-one followed up where she was etc. I should think so too. I trust the care manager and coordinator to find out and action accordingly.
People think she is more independent than she is. They look at her and think she can cope. Well clearly she cannot. I entrust them with her care and they have to realise her vulnerabilities. It breaks my heart to think of her sitting there crying, isolated for 15 minutes without anyone coming or hearing her! But the fact it only takes minutes for someone to be taken advantage of just makes me feel sick.
The talk of gaining independence when they get to college worries me silly...I hope she can find some ways of coping but I know she will never be able to live alone even if her condition didnt continue to degenerate. And that in itself makes me feel so sad.
Day 109
5 years ago
Posts
5 comments:
((Robyn)))
I'm so sorry B had that experience:(
Horrible for you both. Hope B is ok today and that it doesn't happen again.
xxxx
Dear Robyn
I've been following you and B for a little while, never really felt the need to say much before but this time I can't keep my mouth shut.
I've got something pretty similar to Beth - but more severe, and more quickly progressing. I'm 23 now and I use a feeding tube for fluids, meds and some of my nutritional needs, can't weightbear at all, have no sitting balance or any kind of functional mobility out of my powerchair.
And I left home when I was 18 and went away to college, 200 miles away from my parents. At first I lived in a halls of residence in a shared flat, and now I have my own (housing association) bungalow. I have a lovely housemate who is employed as my main Personal (care) Assistant, and am currently funded for 11 hours of care per day, as well as having people doing sleepover shifts. Waiting on getting that bumped up to waking shifts as my needs change - Continuing Healthcare funding should take care of that.
I'm also supported by the local District Nurses and any care gaps are filled in by the council's Physical Disability Team support workers. I have three cats and I'm working (slowly!) on finishing my degree. I do lots of disability and LGBT rights political stuff and have had a really brilliant time being disabled students rep at my university LGBT society this year.
So... yeah, I think my point is that while I can't really be said to 'live alone' I certainly have my own life, that I'm 100% in control of, and have the same relationship with my parents that any adult offspring might enjoy. B can - and will, if it's what she wants - have the same in a few years time.
:-( Im so sorry this happened to Beth and heartbreaking for you. Hope this enables them to sit up and truley take on board her vulnerability. Many hugs. Lori. xx
how horrid, poor Beth and poor you. I do hope they realise their errors rather than just making the right noises.
Glad she is ok but that is certainly not the point.
Im so angry that this happened to Beth, like you said anything could have happened. I hope you get a full investigation into this.
Hugs xxx
Post a Comment