NAE NUKES

Today is Hiroshima Day where we commemorate a crime against humanity. It was the weapon that was to stop all wars but we know the military and scientific community just wanted an excuse to drop the Atomic Bomb saying the Japanese would not surrender So rather than use diplomatic efforts drop the bomb and kill thousands,  make millions fear.

I have become death, the destroyer of worlds” Oppenheimer the daddy of the bomb is reputed to have said. Channeling his inner Shiva. Do you know according to calculations the Earth’s atmosphere may have caught fire but they tested it anyway. The dropping of the bomb has changed us all forever and not for the better. All those affected from the shadows of humans burnt into the ground due to a heat hotter than the sun, the victims who still die today, the cold war kids who lay awake listening to a solitary plane in the night fearful, to all of us who worry about  the taunts and rhetoric of politics both nationally and internationally.

I was a cold war kid brought up in the then American Air Base of Leuchars. Now I live in Paisley as the crow flies a few miles from Faslane. I am a cheery person but images and dreams haunt me now and then of cuddling my family while we wait for nuclear oblivion. I am concerned for the survivors, those rich and powerful in their shelters and those who will live another day. What will society be like? There are popular games such as Fallout where you have to survive the oblivion if only we could have a VR war.

I had to have a difficult conversation with my son yesterday. He was worried about radiation and knows a family member is going to start radiotherapy soon. What will it do to their body he asked. His dad and I tried to reassure him this was a medical treatment which would help but he has watched enough YouTube alas to see nuclear radiation after a weapon was used. So I spent the evening reassuring him and used youtube to show the difference. He has autism so seeing pictures is best for him rather than words. I felt so sad I have tried to protect my children from the fear I had but they like many others are experiencing it now too.

So tonight he will not be walking with Renfrewshire CND to the beautiful Peace Garden but like many who cannot make the walk imagine a world of peace. They are the superheroes who have the power to make the world a kinder place so please don your cape and assemble anywhere you are in the true hope Enough Is Enough. Surround ourselves with a blanket of peace . If you can make it Renfrewshire CND will be meeting today at 5pm at Barshaw Park car park to walk to the Peace Garden. There are memorials all over so look and see. Just imagine how much these evil weapons cost and how the cost could be used for us all. Love to you all. xx

 

 

 

 

 

 

 

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BUCKET LISTS AND PAILS

We were due to  go on our Summer Hols this week. We had booked a beautiful cottage near where friends live. However I have found this year especially, life gets in the way sometimes. I found myself in the situation of  knowing I would not manage a week away with the boys by myself. Surely a holiday is just what I need but I know my carer friends understand when I just could not go. I am ill myself and would love to sit and read and drink lashings of ginger beer but I just could not manage. You know I am quite proud of myself a year ago I would have gone but one of the lessons I have learned in the past year  is self care. Sometimes it is difficult to adult.

I wanted my boys to have a wee break so we booked a coach trip. Before you scoff it is cheap, easy travel and fun experiences. We went on a trip which took in Holy Isle, Beamish and Durham. As you know I am a bit of a geek, rarely buy things for myself but I got a pair of Avengers trainers in the spirit of “Avengers Assemble”. Iron Man I can do without but A Hulk Smash, A Thor Hug and Captain Marvel by my side would be great. I am lucky to have real life avengers.

I mention the shoes because I will never forget some of the spirituality they soaked up in the past two days. A trip to the tranquillity of Holy Isle, a visit to Beamish which is on my bucket list and Durham a beautiful city. On the bus I felt we were sailing through history and the trip and memories are stored up in my trainers. When I look at them I will smile and remember where I have been. I hope the boys have happy sunny days memories of us all being together. A short but so sweet trip full of memories money cannot buy. Shower the people you love with love and show them the way you feel. Most importantly tell them. Love to you all. Imagine me writing about a pair of trainers……

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CARERS UNGAGGED

 

I am privileged to belong to a group of passionate writers who are called Ungagged. I love them because they share voices that deserve to be heard and often are not. At the end of Carers Week, am proud to be writing for them.

Once a year we carers get patted on the back and told what a fantastic job we do. I think there will come a time when we all realise the love and compassion carers have, make the world a better place. We do what we do at the expense of our own health, there are no health and safety measures put in place. In a past life I was a paid carer a career, fantastic colleagues. I worked in places with great practice. I had time off and paid holidays. My work then could not prepare me for the reality of being an unpaid carer. We care round the clock often 24/7 when our caring role is over many of us have PTSD and are expected to find work quickly. We have much to offer our skills include advocacy, form filling, managing our time effectively. Most employers will look at our “work history” and not regard this as real work. However we do what we do with love in our hearts.

This week has been a rollercoaster for me but is just a typical one. I have read so many stories on social media. Some of us have been tweeting #RealCarersWeek. We live in the shadows and keep the dark times to ourselves posting pictures about happy times masks how difficult our lives actually are. The stories I have read this week have made me cry and smile and make me realise I am not alone. I rarely get out. I saw a dear friend who is also a carer this week and got to a gig!! I thought I would not get but I have not had a night out on my own for over a year and we made it. It refreshed my batteries but I felt so guilty going. I know many folk will get that.

Carers contribute more than the NHS budget in unpaid care. What would happen if we downed tools but w won’t of course. The Adam Smith foundation presented a paper this week which said women should expect to be unpaid carers. That is the crux of the matter it is mostly seen as “women’s work” though I know more and more men who are carers. Assumptions are made as well as cuts to essential services. I believe in people being seen and part of their community but this is used as an excuse to making cuts to essential services. Such services are crucial and I am all for volunteers and charities but they should not provide essential centres. Language about community care are used as an excuse to make cuts.

So another Carers Week is almost at the end for us though #RealCarersLives continue 52 weeks a year seven days a week. We have to battle and advocate for support for our loved ones forgetting ourselves. Am glad that so many people have shared their stories on #RealCarersWeek this year. It is up to a 1000. I live in hope things will get better this week but in reality doubt it. Am proud on behalf of Ungagged to wish all who care the best always at your back. Come and share the microphone that in Ungagged and let others hear your story it is an important one. Love and strength to you all. xx

 

 

 

 

 

 

 

 

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ALMOST HEAVEN, WEST OF SCOTLAND

I love my house, okay it has a few holes in the wall where one of my sons became angry and raged at the world but we live at the foot of the Glennifer Braes and have the best back garden in the world. Today sees the commencement of Carer’s Week. For the past few years I have made a point of blogging and speaking about my life. Sadly this year little seems to have improved. My own caring role seems overwhelming at times as I care for my two sons who both have autism and rare genetic disorders and my Mum In Law who has alzheimers. Those who know me know I am a positive person and I love my family and believe in the goodness of people in general. That is why I do what I do. I love to see my family thrive and respect their wishes.

So why did I mention my house? In the hall there is a table a dining table. Recently though I have found myself not having enough time in the day and leaving clean clothes on it. Every time I pass it it serves as a reminder that I have very little time to put these clothes away. It is my collective guilt, a metaphor of the many tasks I feel permeate my time time for being Sandra which I seem to have less and less off. Taking friends advice I spend a short time every day to get rid of the pile but I feel thatthis is my lot at the moment,being  an object where more than I can cope with is given to me.

Like many carers I care for more than one person. My sons and now quite recently my Mother In Law. One of my sons has quite complex physical needs as well as his autism and I have had to make the decision just to help MIL as much as I can. I used to think autism was challenging and it is but watching my MIL swim away from the shore because of her alzheimers is cruel. She had a bad fall and spent 10 days in hospital recently. The NHS say they will listen to carers but an example of how this is not happening was on her discharge. Those of us who are frequent flyers in the NHS know how appropriate the term patient is. If someone is fit for discharge our local hospital sends them to the Departure Lounge (very soylent green) to wait for transport. As my MIL has steep stairs to her home we requested an ambulance and asked once she was going to the lounge that they could phone me and I would wait for her to take her home. In the afternoon I got a phone call from the ward to say she was on her way home. This is a woman in her eighties with alzheimers and they had not noted my request. I am grateful for our NHS and know the ward was under pressure, but please listen.

She was discharged with a “full care” package with carers visiting four times a day. Her son and I felt relief. We are not together any more but I still care for his mum. Last Friday the care package was dropped to twice a day. The carers are lovely but their manager explainded they cannot do welfare checks just provide personal care. This does not include meal preparation or supervision. Due to the alzheimers she cannot prepare a meal and needs someone to supervise her so she doesn’t choke. The care co-ordinator explained that they were short staffed and could not provide this it is up to the family. This is due to lack of staff. Forgive me if I sound silly but I assumed helping someone eat was basic care?

Nan’s illness can cause her to be confused, and verbally aggressive. “I am Lady MacBeth” she said to nurses who she refused to allow to see a sore. She dislikes strangers and what she sees as the intrusion of carers. She can manage herself though she cannot. Since her discharge she has had breathlessness and chest pains. Her GP visited last week and found she had fluid on her lungs. Her heart was not checked during her hospital stay and she has an appointment to see a cardiologist next week. She has a spray which carers can only advise her to take if she has symptoms. Honest you could tmake it up.

I remind myself when she makes comments such as “You mean nothing to me” this is just the illness speaking. I am well trained in the bluntness of autism speak and how to have conversations about manga, superheroes, the marvel universe, Trump and live in general. In a past life I worked as a carer and loved it But I had time off, paid holidays and wonderful colleagues. I still have loads of friends many who live with disability and who are carers. Thank Heavens for social media and being able to chat. I feel guilty I can’t see people in real life often enough.

In this year’s Carer’s Week the theme is the many carers who are unwell themselves and do not have time to look after themselves. I wish the NHS could prescribe time in a bottle alas unless you like science fiction computer says No. I am mindful of many of my friends and myself who live with long term conditions which are exacerbated by our caring roles. I know carers whose loved ones have died who still feel the impact of their caring role. For some it is like post traumatic stress.

So here we go again another Carers Week. I hope the government will listen to us cuts to services are having a huge impact. The powers that be though know that we won’t take action as we do what we do with love and compassion in our hearts. We make the world a better place and reflect the moral compass of any society and how the most vulnerable should be allowed to live life life to the full. I urge those who represent us to not to pat us on the head and sat well done, thanks for contributing care equal to that provided by the NHS. What would happen if we stopped doing what we do. Please stand up for us and campaign about the cuts which mean essential services such as respite are no longer available. One of my sons respite was cancelled this year by a third sector organization and we still feel the impact.

Help us to help our loved ones live a full life but also help us have a life. This week using the hashtag #RealCarersWeek some folk will tweet about the reality of their lives if we have time. This is the reality. Can we change the system please? celebrate good practice and not preach about how about how better off we are. I would like to invite any politician to come and spend a few hours with me. Forget buzzword bingo and outcomes and see the realities of our lives. Sending much Love to thos I know in real life and on here. Let’s share the megaphone this week and give a glimpse into our lives and let’s continue to make society a better placeWell since I have been up since 5am I wrote this. Take Care and see you on the other side.Love to you all. xxx

 

 

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ITS THE END OF THE WORLD AND WE ARE TALKING ABOUT USING BABYWIPES??

Before I write this I ponder why? Well I am writing this for all those with continent problems and those who offer them support. Yesterday the news was awash (pardon the pun), with news stories about baby wipes and the problems they cause in drains. The needs of those who require them for medical use were brushed aside. Well I do not want my son to be issued with a document g because of a medical condition he needs them. Where should used ones go? I think it is the responsibility of the NHS. We have so much clinical waste and our bins are going to a three weekly cycle. I am dreading this and our ability to dispose of it.

Why should folk feel they have to justify why they use them? They should not. Bowel disorders alone are difficult to live with. They are great for babies and great for when you go out. Someone suggested a wet cloth would be as much good but when the person you care for needs at least one bed change, towels plus everyone else’s washing it becomes an issue. How do you take a wet towel out on a trip?

 

Rather than place the onus on individuals criticise the manufacturers and place the cost on them. We are on the verge of a war and “experts” who have probably never offered support in the bubbles of academia make recommendations rather than see what is needed and gives basic dignity which is what I want for my son and all our sons and daughters. They even make cleaning wipes now. For those of us without hired help even though we need it, such items make life a little easier.

 

And that is what I want us all to be kind, more considering of different needs, and get things we need rather than have to justify them. Sadly this society is not going in that direction. We understand a child’s continence needs but not an adult’s. As someone pointed out on FB they are preparing for war while talking about wipe use. These small things mount up and impact on our lives. but let’s put the costs on the manufacturer and above all give my son give those with bowel disorders some dignity.

 

 

 

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WHY THE ARTS ARE NOT AN OPTIONAL EXTRA.

Part of our experience of being human is communication, the chance to get out of the box and be transported. To meet with new people you normally would not meet in the personal bubbles our lives are becoming. By meeting different people we learn more about what being human and comradeship is.

There are very few artifacts about when we made that great leap forward as a species. Mostly we imagine, imprint our modern day attitudes onto how people lived. One of the earliest and enduring are cave paintings. I have to admit about being fascinated by these beautiful images. Handprints stories of hunts. They have survived and speak to us today. The people who drew them did so to communicate. I imagine the beginnings of language and society. People telling stories around a fire making shadows on the wall to entertain. I may be wrong though, maybe these are the works of petulant teenagers well before the invention of posters and tacks decorating the walls.There I go again, 21st century girl However they make me imagine and I am all the better for these flights of fancy.

The arts help our health be it singing in a community choir, a spoken word event. I would argue they are more affective than a course of CBT sometimes. It is sad to see them being cut then as budgets are slashed. I watched at the weekend in dismay at the weekend hearing about the proposed cuts in Stirling which may mean the closure of The Smith Institute and Big Noise. Elspeth King ex curator of the People’s Palace in Glasgow is now the curator of The Smith. I remember in the eighties sitting in awe of Elspeth wishing I had the courage to talk about the amazing space celebrating working class history. It was a favourite haunt. Just last year Big Noise had a concert highlighting the skills of the young musicians who have had the chance to learn an instrument. It is based on a South American project and is based in the Raploch. Both these places are to lose their funding as Stirling Council and Creative Scotland have to make cuts.

The Arts are an easy target. Money has to be found for services so what does the cut to a local art activity mean? I raised my children in poverty. My daughter’s life was enriched by being a chorister in The Abbey Choir, drama classes and musical tuition. The tuition was free but there were lots of extra costs, the drama group was expensive but she learned so much and as a young carer these activities gave her a break from her caring role. The Arts are not just about “high art” but for all. In London we passed The Royal Concert Hall it was an opening night and people came out of Bentleys wearing furs and dripping with jewellery. I know how expensive the seats are and hope the audience had a good time but the old saying of John Lennon playing the Palladium with the Beatles in the sixties came back to me. “Would those in the front row rattle their jewellery. I must add that Scottish Opera does have good concessions. If you are lucky you can get a ticket for a fiver and it is a wonderful spectacle. In Italy Opera is not just the confines of the better off but enjoyed by many.

The Arts are for everyone they nourish our souls, they challenge our viewpoints. They teach us about issues we may never have thought of before. This is why I signed the letter regarding the cuts to disability theatre. One of the groups facing a funding crisis is Birds Of Paradise. I remember 25 years ago (ouch). One of their first performances was The Snow Queen. The actors all had a learning disability. I still remember the young woman who played Gerda she was amazing but everyone was involved. It  was amazing to see. My friend Kevin joined them very early on, it was a whole new world to him. It is not just about the performance though it is the workshops educating an audience and at its heart empowerment.

I think of people like Darren Loki McGarvey and Rachel Jury who give voices to those not always listened too. I think about Create in Paisley a group of young people in Paisley who are involved in so many creative projects with young folk. My daughter volunteers with them, has been on a youth exchange to Slovenia she is giving back a little of what she knows are important.

That is why I am saying the Arts and libraries are not an optional extra but a vital spark in our communities especially. Those who face barriers should get support to enjoy and snatch an hour pr so to meet with friends, to sing to paint, to write. For me watching a play or reading a book are respite. I can escape to other worlds and imagine. Imagination is what makes us human and keeps us warm. I wonder what 25th century girl will make of us? Recording that is part of what art is all about. No more cuts to local communities make us resilient and listen to the voice of those who perform and become a participant yourself. Two of my favourite books are about pedagogy in society and I recommend you read more about Alberto Boal and Paulo Freire about who defines what is important those who experience it should be all about.

 

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CARING ON THE PRECIPICE.

AS though who know me understand I am a positive person. I share on social media glimpses of my life the happy events. For carers our expectations of what is wonderful are the small things. My 14 year old son tying his school tie for the first time. My eldest son discovering new music are precious to me.

At the moment my caring role and balancing my own health conditions are becoming increasingly difficult. I was in hospital last weekend and know now I have to take things as easy as I can. For us carers easier said than done though. I care for my sons and MIL because I love them and want the best for them. Truth to be told though the things I have had to endure recently would leave many crumpled. I am still standing though but am looking down at a dark chasm.

The good things are a piece of illumination. I will get through this I want too but I wonder. how many carers will survive what 2018 brings. How many people with disabilities who Harmony said impact on economic growth but are forced to work when they are unable too.

So I shall smile and will be okay but think why we post so positively it is because we recognise the. Importance of small things. To be honest I am clinging on and waiting for my health to improve but years of caring have damaged it. So I am blogging to let you know how things are. Be careful out their friends and unpaid carers who have no choice but to take their work home with them and cope. See you when I am more positive.

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