It is quite a long
time since I wrote on the Warrior Mums, mainly because my medication makes
my brain a bit foggy but today I felt compelled to make an effort. I wanted to share good things about our lives as most of us are in lock-down and could do with a bit of cheering up.
So many loved ones are dying, ravaged by the
Corona virus, often with no time to say goodbye as families hear over the phone
that their relative has just become another statistic. I couldn't begin to
imagine the grief and shock at these sudden deaths. Thank God for our
marvelous NHS and social care staff who are working tirelessly, putting their own lives in
danger to save others. Supermarket staff, refuse collectors, postal workers,
food supply chains and the lorry drivers, pharmacists and GP receptionists and
many others, are all heroes in my eyes and I suspect in yours too. Some days I sit in the garden listening to the sound of silence. No planes
from the nearby airport or the usual chirpy sound of neighbours or children
playing. Everybody is respecting the lock-down and doing their bit to save
lives. Then the local church bells ring out at 12 for the Angelus and I am filled with gratitude for the life we
have and the stress free environment in which we live. Our garden would be a luxury to millions of
families cramped into small houses or high rise flats. They
must feel like they’re living in a prison as the hot sun teases them
through their windows and they are confined to four walls.
I thank God Marie
returned home 18 months ago after almost 2 years in residential care even though she was a shell of herself and took a good while to recover as the photos show.
I am
also mindful of parents who today have sons or daughters in NHS units
where visiting was restricted at the best of times. Now they are completely
isolated and must be out of their minds with worry. I suspect there will be many changes for the
better when this pandemic is over and one of the priorities has to be to close
these NHS units down so that these vulnerable people will never be isolated in
large numbers again.
To the Government I say, don’t just talk about it – bloody
get on and do it!!
I
realise as I write this that it’s 50 years today since I met Marie. Most of my friends
and followers will know through my books and blog posts that I’ve spent many or
even most of those years battling with bureaucracy for Marie’s rights and for
decent care. I didn’t put a tooth in naming and shaming those (and not all) who
were deliberately unhelpful and often abused their power to make our lives a misery. My
mantra has always been ‘No voice – no choice’ So from 1970 when I first met
Marie I have been her voice.
I made many enemies
and was often told my reputation preceded me. I just had to live with that. Like most parents
of people with special needs, I did what I had to do.
Today I am happy to
tell you that the wars are over and we are in a good place with the care
package that I fought so so hard to get even though I am still responsible for
a small part of the care each day. Ideally Marie needs 2-1 support especially when she goes out in the car, so you could say I am the back-up staff permanently on call despite my poor health.
So how are you all coping with lock-down? I have been told not to go out for 3 months but I am a bit of a home bird anyway so it doesn't affect me that much. I do miss nipping out when I choose though, even if it's only once a week. Marie's PAs do our shopping and anything else I would normally have to leave the house for.
Isolation, or being housebound, is a way of life to many parents of special needs and this lock-down might give the public a window into their often lonely disconnected lives. Maybe we'll all come out of this pandemic, kinder, more thoughtful people.
One of my worries was how quickly the supermarket shelves emptied and if we would ever run out of Marie's staple diet of eggs. Marie has dysphagia and some days she copes better than others. There are times she'll only have a liquid diet like soup and rice pudding because she's choking and struggling to eat and other days she's able to enjoy most foods except for meat which is permanently excluded from her diet because she is unable to chew properly. Eggs, however are something Marie will never refuse.
A very kind friend brought Marie a tray of 30 eggs and I wondered if there was any way of preserving them so I searched good old You Tube and found an American farmer who freezes her eggs for the winter.
I suspect most of you are rolling your eyes because you've been freezing eggs for years but I had no idea this could be done.
Three eggs gently mixed in a jug and poured into a sandwich bag to lay flat in the freezer so they take up very little space when frozen and can be stored like post cards. You can use as many eggs as you want but I chose 3 for Marie's omelette. I am also freezing mashed potatoes too although I get someone to mash them for me because I wear splints most of the time due to arthritis in my hands and wrists.. I would love to do so much more but I can't.
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.
Last year I had an idea
that might solve the problem, to turn the lounge, which has double doors onto
the wheelchair ramp and garden, into a self-contained unit. However, I quickly
put the idea out of my head. The lounge was full of my Bronte books and other
treasure that most people would see as junk. I must be a very sentimental
person because I keep everything, although every now and again I might fill a
few bags for charity, usually what I have bought but never what someone else
has bought for me.
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.
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.
Christmas came and went and
I kept putting the idea out of my head until an incident that I felt left me no
choice but to use this last resort; to bring some peace to this house. This screaming and screeching at 3am didn't happen an awful lot but it happening once was too many times..
And so the mammoth task began.
And so the mammoth task began.
Shelves and cupboards were
emptied of books and ornaments as I half-heartedly turned my little bedroom
into my new lounge. When you have carers in the house all the time you have no
privacy, so having a room to call my own was a benefit. It meant I could sit in peace and quiet when I didn't feel well and the carers, who are like family, were thrilled about this.
Miraculously my cupboards
fitted on one wall enabling me to put everything back in its place and I began
to see the silver lining as my 12x14 bedroom transformed into a lounge and
Marie moved into her new sunny unit that opens onto the garden.
Marie has always
suffered from claustrophobia due to the nuns locking her in a room on her own
where she was placed in the middle of the floor (because she couldn’t walk due
to cerebral palsy) and only brought out at mealtimes.
 |
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.
So on the day Sandy and
Sarah drove off to buy our pup I waited in anticipation unable to share the
excitement with Marie as she would not have understood.
Before long Sandy rang me
from the farm telling me there were lots of pups scrambling for attention but
there was one little pup that stood on it’s own away from all the others and
she was trying to coax it to come over to her. The phone call ended and I
continued to wait. Then it pinged again. Sandy had managed to scoop the 14 week
old pup up and Sarah sent me a photo that would melt anybody’s heart.
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.
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.
Michelle xx
