My last post was about my stuggle to bring Marie back home and the snidey social worker putting Marie under the Court of Protection, but only for a weekend, to try to prevent me from bringing her out of the Home where she was so desperately unhappy and had been put up for eviction. I am happy to tell you that Marie has settled at home and is loved by all her carers. I employ them myself through Direct Payments from LCC and shared NHS funding. They all sing from the same hymn sheet and work well as a team.
One thing that’s for sure, that’s always been a problem and will remain so is Marie’s screeching. Stuck in the terrible two’s and being non verbal has closed many doors over the years limiting the opportunity of mixing with her peers. At home we have strategies in place to avoid these situations.
There’s no build up to Marie's outbursts, just a piercing screech that goes from 1-100 in a second and can continue for hours until she is so stressed it can be difficult to bring her out of it. Night time is the worst, especially with new staff. Marie uses her screeching as a weapon and has the staff over a barrel. Leaving her to screech at 3am because she refuses to get back into bed can be very unnerving, especially with neighbours on the adjoining wall which I unsuccessfully tried to soundproof. Every few months we'll try Marie in a different bedroom and all I seemed to be doing was moving furniture around the house.
And what about my other books, the ones I've had for years that I re-read every so often. Those original self help books that came out before the market was saturated with them. Feel The Fear and Do It Anyway that I first bought in the mid 80s and Norman Vincent Peals old book The Power of Positive Thinking that remained under my pillow for years as I dipped into it every night.
So last year I was sitting in the lounge realizing it would be the ideal solution for Marie and staff to have this room but still reluctant to give it up. What would I do with all of my stuff? Cupboards and shelves I’d bought from charity shops and painstakingly stripped and painted over the years would have to be given (or more likely thrown) away.
And so the mammoth task began.
My old bedroom
Hindsight is a wonderful thing, Isn’t it? I should have taken these steps long ago, but what seems extreme yesterday is plain common sense today. I must stress though, that I have no other children at home and nobody but Marie to consider. Had there been other family members, Marie having the lounge would not have been an option.
Would it surprise you to know that Marie was 55 in February? Every year it gets harder and harder wondering what to buy. Very little impresses her. She loves to unwrap sweet and crisp and maybe a new catalogue. I haven’t had a dog since I lived in Ireland but deep down I have always wanted one. Now that Marie had her own little living space with access for a dog to go straight onto the garden why not buy her one for her birthday? No sooner had I mentioned it to Clare, one of Marie’s PAs, when she brought me a large crate her dogs no longer needed and Sandy and Sarah volunteered to go and pick the puppy at the farm. Of course I’d considered a rescue dog but most of them were too big and we had to consider Marie’s safety and the smaller breeds seemed to be snapped up as soon as they arrived.
How sad did she look? No wonder she stood alone. She could barely see through that unkempt fur.
And so Maisie, as we called her, was the chosen one.
Maisie arrived home looking a bit more cared for having been tidied up by the owners before she left.
From the day Maisie came into our home she’s been a little dream and brought nothing but joy. She's house trained now and due to lock-down we have been unable to take her to have fur cut so it was done at home. Now she skips around the garden looking like a spring lamb.
Maisie is so loved and I think she loves us too. There are times when Marie can hardly get her breath for laughing at Maisie’s antics and other times when Marie is so switched off that she hardly notices the pup. Maisie’s crate, where she sleeps every night, has remained under the table in Marie’s room and is a soothing presence in the dark. I don’t think I could move her if I wanted to.
One thing I know for sure is that it's easier to remember the professionals that were good to us rather than those that tried to do us harm. I think of people like Dr Sheila Kidd, Consultant Psychiatrist at Peterborough General Hospital and later of Gloucester Centre, which was a special needs residential facility.. We were referred to Dr Kidd when at the age of 8 Marie started having epileptic fits. Dr Kidd was a refreshing change to the stuffy 'specialists' I was used to meeting. Dr Kidd wrote the foreword for my book With a Little Help from my Friends and I am happy to say we are still in touch today.
Also Helen Laverty MBE who has injected tons of motivation into the world of learning disability nursing. Helen was a nurse when Marie went to Harmston Hall Hospital in Lincoln for respite care in the 80s. We caught up again on Facebook a decade or so ago and have followed each other ever since.
Nurse Helen Laverty
'I have been a registered nurse in learning disabilities for 40 years, and it remains a passion! My career has taken me from training in a long stay facility right up to today to the giddy tidal wave of inclusion! Nursing people who have a learning disability is a real POSITIVE CHOICE and one if given the chance of being 18 again I would choose again! I have experience in care situations across the age spectrum, and in both health and social care. I made the shift to nurse education in 1987 as I wanted to take the inclusion message to a wider audience. I am very fortunate in that my career has given me opportunity to have my life and career touched by such a rich and diverse group of people.'
|Helen receiving her much deserved MBE|
So I hope all you warrior mums are keeping ok. I bet between us we have loads of people to thank.