It took me ages to pack the car but it was done with great enthusiasm as I loaded her wheelchair, clothes and all her favourite things including a big plastic container of Duplo bricks. Marie also takes her own top sheet and blankets. The Home only provided quilts and Marie is unable to retrieve and fix a quilt into place once if falls off her bed. She likes the comfort and security of being tucked in and when at home, sleeps like a baby, although I always have one ear cocked during the night just in case she gets out of bed.
Also lots of carers across the UK no longer have the energy to navigate the over-complicated application process since the Government removed allocated social workers who used to bridge that gap between bureaucracy and home.
Unfortunately so many Government changes have been implemented to special needs support services. Parents/carers have also found themselves submerged in reams of paperwork and rounds of unnecessary appointments. Expecting us to fill out 24 page assessment forms to see if our adult/children are eligible for work when they know full well that they aren't, is an abuse of a carers time and energy. With all this extra paperwork and limited respite lots of carers end up having no time for themselves and nothing to look forward to.
|My kind of heaven|
However, I was delighted to see Marie when she came home. I could almost hear her breathe a deep sigh of relief when she sank into the chair- she was worn out through lack of sleep and I was rejuvenated with plenty of sleep and we soon settled back into our daily routine.
To the Government I say: Being a full time carer is a labour of love. We carers are saving you millions of pounds in caring for our loved ones at home and not relying on you to provide 24 hour care, so please do not just look upon us as 'Benefit Scroungers' but rather acknowledge the enormous contribution carers make to the British economy and repay our dedicated hard work with decent respite breaks....
|2007 - 2 weeks after she returned home|
In 2007 Marie returned home after a long spell living in a residential care unit. She'd been happy there for quite a few years but her needs changed and her behaviour became unmanageable. The staff could no longer take her out in the community because of her screaming and screeching and sitting down in the road. It was too far away for regular family support and I think she was feeling lost, but she was also painfully thin and seriously under nourished, so after many sleepless nights and many raised eyebrows, I felt there was no alternative but to bring her home.
There was also a choice for day support. Instead of using the traditional Day Centre, I opted for 18 hours a week Direct Payments and had a support worker (of our choice) to cover that post for 6 hours a day 3 days a week.
|After 6 months at home.|
Anybody who worked in our house worked as part of a team. We all sang from the same hymn sheet when it came to interacting with Marie. None of us responded to her screaming and screeching and she soon got out of the habit as we encouraged her to communicate in other ways. She thrived on the one-to-one attention and came on leaps and bounds. She looked upon the support workers as her friends and everybody loved her.
I held onto Marie's hand as we slowly walked down the stairs. I wrapped her in my three quarter padded coat, which hung well below her knee like a big duvet to keep her warm and then I rang for a taxi, which came almost immediately. I was still emptying my mouth into the bowl when we went out into the cold. Marie linked her arm through mine as we carefully walked down the steps and got into the cab. I had my cash card and two mobile phones in my pocket so I could contact the agency when I reached the hospital. I asked the driver to stop at a cash point. Although I had a little money on me, I wanted to withdraw more cash to give to the agency staff when they came to collect Marie from the hospital just in case they wanted to take her out or do something special.
Melanie rang the agency on and off for hours and when the phone was eventually picked up, (we had been trying for 11 hours) the on-call staff member told Melanie they had no staff-cover for Marie and that because Marie was not contracted to their agency (by the local council) and was booked privately, they were not responsible for her.
The agency staff (usually the same woman) had slept in the spare bed in Marie’s room, which enabled her (agency staff) to have a good night’s sleep, knowing that Marie was nearby and safe. Marie hates to be alone and was absolutely delighted to have a 'friend' sleeping in the same room. BUT, no matter how much you scrutinise an agency, their strength and reputation is built on how supportive they are in a crisis. We had been using them for over a year but they were no longer any use to us. The time and energy I spent building up a support system with this particular agency was disheartening to say the least. Now it seemed it had all been a waste of time and I had to start the whole process of finding support for Marie all over again.
My heart went bumpty-bumpty-bump.
As soon as Melanie clicked off my phone, I rang the agency. They confirmed police were called to Marie. I asked why nobody had contacted me. The agency manager couldn’t apologise enough, but I felt too numb to talk and told him so. I said I would ring him when I arrived home. I threw my things in the car, got some petrol, and drove home. I was there in forty minutes.
Agency Girl rang the on-call staff member back ten minutes later. She told him she was afraid Marie was going to hurt her. The on-call staff member told Agency Girl if she felt Marie was a threat, to dial 999. And that’s what she did.
After this last incident I decided to look around and see what respite facilities were available for Marie because respite obviously wasn't working out at home. I found a small home about 30 miles away and wrote to the owners explaining our situation. I was invited to go and meet the owner and have a look around and then the owner came to our house to see Marie on familiar ground. Of course, Marie sat beside me like a little angel but the owner listened with interest and understood and accepted the problems that might arise. After our meeting I was happy to go ahead and contacted the Social Services to ask them to start the ball rolling.
So that's how our respite panned out with many trials and errors, but I'm happy to say we got there in the end. Oh, and Marie now has a bag packed at the ready containing a weeks supply of clothes, her notes and medication (which is replaced every month as it goes out of date) so that we are all prepared in case of an emergency.