Carers Club exists for you. Our aim is to be useful, we’re here to give you clear, simple, straight forward advice and support about your caring journey or the journey of someone you know who is providing essential care.
Parkinson’s Awareness Week surrounds World Parkinson’s Day, which takes place today Wednesday, April 11, its aim is to help raise awareness, bring people together, share stories and change people’s attitudes.
Parkinson’s disease affects up to 14 million people worldwide which is 1 in every 500 people.
There are three key symptoms of Parkinson’s: an involuntary shaking movement in one or more parts of the body; stiff or inflexible muscles; and slower or less co-ordinated body movement.
For further information on symptoms you can visit the NHS pages here
As a carer who cares for someone with Parkinson’s you may require some help and support from the following:
Your local social services or social work department
If you are a carer suffering from Parkinson’s yourself, although you may feel as though the needs of the person you care for are far greater than your own, you also need to try take time out to understand your own condition, attend healthcare appointments and help manage your own condition in a way that suits you and the cared for person.
This month marks LGBT History Month, its aim is to promote equality and diversity for the benefit of the public and think about what more there is to do within our lesbian, gay, bisexual and transgender (LGBT) communities.
The theme for this year 2018 is Geography: Mapping Our World.
Carers UK estimate there are 390,000 LGBT carers in the UK and yet these carers from lesbian, gay, bisexual and transgender (LGBT) communities may not always feel they are being acknowledged as a valuable member of their local community and there may be LGBT-specific barriers to them accessing local services and support as well as the usual barriers experienced by carers.
Following the research from many organisations although most carers may have had a positive experience, some LGBT carers may have felt discouraged from taking part in local community decision-making for fear that their voices are not wanted and will not be heard. At times the fear of discrimination can prevent LGBT people from seeking services or disclosing their sexuality or gender.
As a society we need to do more to ensure we have more inclusive services to support all carers in their caring role. Carers UK provide further help and support for LGBT carers at www.carersuk.org/search/lgbtq-caring
There are lots of events happening around the country to mark LGBT History Month for further information visitwww.lgbthistorymonth.org.uk
Young Carers Awareness Day 25 January 2018 recognises the 700,000 young carers in the UK, children and young people under the age of 18 and as young as 5 years old.
Whilst all unpaid carers juggle their caring duties alongside their everyday lives, young carers have the added pressure of school, many of which keep their caring responsibilities a secret from their peers, others are bullied due to caring, or miss school altogether.
Evidence shows young carers need the right amount of support and guidance in place to help them reach their potential. Their self-esteem and self-confidence can be affected although many young carers find their role very rewarding and gain valuable life skills.
Young Carers Awareness day is an opportunity to recognise and understand the challenges young carers face and what support is available to them.
What can you do to support Young Carers Awareness Day:
Tweet your support using #youngcarersawarenessday..
Over 2 million people have given up employment at some point to care for family or friends with long-term illness, disability or problems related to old age, whilst 3 million carers have had to reduce their working hours.
The Commons’ Work and Pensions Select Committee opened an Inquiry on 14th November 2017 the, the results of which will feed into the carers strategy.
The Inquiry will focus on:
The support that carers receive in relation to employment, for example, whether carers are supported adequately by the Department for Work and Pensions (DWP),
How the DWP can work more proactively with employers to support carers
How to reduce barriers and change attitudes to employment towards carers in employment
You can gain further information and join in the debate here
You can become a carer in an instant and it can be a challenging new role. You have so much to learn but may struggle to attend or find relevant training. This is where online training for carers can help you.
Carers Trust provides ‘Caring with Confidence’, a set of 7 short, free online courses for carers. It helps you to develop skills and knowledge for your caring role.
• Learn simple techniques to help you care
• Work at your own pace and at a convenient time
• Do as much and as little at a time you want
• Find details of organisations that can give you further information and advice
• Build up a collection of useful resources and notes
Each course has several parts, which you can complete in order or dip into whenever you have time.
Back to school season is upon us and with that come worries that our children will be happy at school.
Children may be worrying about good results and the move to different schools can also be a challenging time. Not every child is confident and some find it more difficult than others to make friends. Bullying can be an issue that needs to be tackled quickly. Some children have specific difficulties such as dyslexia or attention deficit hyperactivity disorder (ADHD)
Are you a parent to a child with specific needs perhaps around a physical or mental illness or a learning difficulty?
Perhaps your child is a young carer juggling the needs at home with the challenges at school.
Signs all is not well at school
• Unhappiness and low self-esteem
• Nausea, headaches or other complaints of not being well enough for school
• Delay in getting ready for school
• Changes in school performance
Some people may become reluctant to go into school, or even refuse to go at all. In extreme cases, they may truant without their parents knowing or exhibit behavioural problems such as lying, stealing or being aggressive.
Tips for parent carers in back to school season
Approach the school to address the problems and work together to help resolve them.
Schools have a set procedure for helping with student problems, and the first port of call will probably be the class teacher or tutor. Schools will also have an anti-bullying policy.
If your child has learning difficulties, speak to the school’s Special Educational Needs Coordinator (SENCO).
If you child has stopped attending school, an Education Welfare Officer will work with you and your family to support their return to school.
If you think your child may have a mental health issue, speak to your GP who can refer you to Child and Adolescent Mental Health Services (CAHMS) if necessary. Youth Counselling is also available
If you are a parent or carer of a child or young person who has school worries, the Young Minds Parents Helpline can give you free, confidential advice and information.
Carers Rights day theme this year is Make Connections, Get Support. It is all about organisations coming together to help carers in local communities get the help, support and advice they are entitled to. It’s also the opportunity for everyone to find hidden carers and signpost to the right organisations locally and nationally as required.
Hyperemesis gravidarum is in the news as the Duchess of Cambridge struggles with it through her pregnancy. Karen has kindly shared her story about how her husband became her carer when she was suffering with the condition.
“In the space of a few weeks, my husband and I went from receiving the best news of our life, to embarking on what would be the roughest year of our lives. Pregnancy was a true test of strength for our relationship. Within a week of finding out back in February 2015 that I was pregnant, the pregnancy sickness kicked in. We didn’t know it at the time, but this would be the beginning of a very long battle with hyperemesis gravidarum (HG).
I couldn’t keep any food or water down, due to vomiting every 20 minutes, 24 hours a day. I quickly lost 2 stone within the first trimester. I couldn’t get out of bed for weeks, because movement and the smell of almost anything would trigger my vomiting. The smell of food, a warm room, deodorant, washing powder, shampoo, the taste of toothpaste, the list of triggers went on.
My husband had to hold me up in the shower in case I fainted, as well as help me dress and undress. He spent a great deal of time emptying and cleaning out the plastic bucket I kept near the bed to throw up into.
This alone should have told us something wasn’t right, but it wasn’t until I collapsed at 13 weeks and was taken to hospital for excessive dehydration and malnourished, that I finally received a diagnosis of Hyperemesis Gravidarum. I would spend the rest of my pregnancy from this point onwards split between my bed at home and a hospital bed, hooked up to an IV drip. I was placed on antiemetic medication to reduce the sickness, but all this really did was reduce the frequency of my hospital admissions.
The experience of becoming chronically ill and so rapidly, was a huge shock to us, given that weeks before I had been perfectly healthy, enjoying a full-time career, planning to launch a small business on the side and regularly going to the gym with friends. While we had planned for the pregnancy, we could have never anticipated that it would go like this or that my husband would become my carer until my due date. It was like we had slipped into a different universe.
Given that I was showing no signs of recovery any time soon, I had to tell everyone that I was pregnant long before I wanted to, including my new employer. Just weeks before finding out I was pregnant, I had been offered a higher paying role in a different department with the company I had been working for a few years. Just 4 weeks in I had to tell them that it was unlikely I’d be able to return to work anytime soon, and so my maternity pay vanished along with the job.
The added financial strain of losing a job in pregnancy piled on the guilt I felt for being so ill. It added pressure to my husband too, who was now the only wage earner, with a baby on the way to save up for. He was scared each time he had to leave for work that something bad would happen to either me or the baby while he was stuck on an overnight shift in his support work role, but of course given out financial situation we had little choice about this.
Our son arrived earlier than expected, as I had developed pre-eclampsia and needed to be induced. To be quite honest, I was relieved to be induced, knowing that my suffering was finally going to end. My husband felt relieved because it meant the worrying and travelling between work, home and the hospital could finally end. Miraculously our son was born perfectly healthy. I remember feeling totally astonished at the time that this little life had thrived within me while I felt convinced all through pregnancy that I wouldn’t live to see another day.
My husband’s role switched overnight from being a carer for me, to a father on paternity leave and I knew that with the compassion and patience he had shown for me throughout pregnancy that he would be a wonderful father to our son.
Parenting children with health issues brings challenges as mums and dads combine the roles of parent and carer. Rebecca from https://amumdoingherbest.com/ kindly shared her story with us.
“When you look at my family, all you would think was what a lovely happy family. From the outside, we look as if we have it together, we look almost organised, we go on day trips and we have fun.
Watch us a little more and you see my oldest boy is just a little different. He moves in a certain way, he pushes his head against my body or against a wall just rubbing and pushing. You watch us for slightly longer and you see that as the place gets more crowded he starts to flap his arms, he will roll into a ball and cover his ears, you see him lash out and hit people who enter his area. You see that he doesn’t have a conversation he just speaks at the person he is talking to. You realise my son has autism.
Then you hover over your eyes over to our baby, she looks around a year, but as you look at her closer you question yourself. She doesn’t make a sound, maybe the odd squeak and on a very good day the odd ‘da’ sound but generally she is silent. You watch some more as you realise that she is being held strangely as if she would fall out of your arms. You see that she is on purees and even that looks like a struggle for her to eat. On a bad day you will see that she doesn’t move and her head is tilted as it has no strength, on a good day you may see her crawl but tire easily.
You see, our family may look like a typical happy family, one with 2 parents and 4 children, however 2 of our children are living with a disability and I am their carer.
I thought that looking after children was tiring enough, running around after them and their different groups. Remembering what day PE was on. Making sure we were on time to school and other activities. That was until I became a carer.
Now I have to be able to juggle school with different hospital appointments. If I am running late, or we are just not feeling up to the appointment I can’t just not go like I can with dance lessons. We have to go.
Instead of only seeing a doctor if my children aren’t well, the hospitals feel like second homes. Invasive tests that make my baby cry have become normal, and as much as I put a brave face on every time a test is conducted that makes my baby girl cry, it breaks my heart and I question everything.
I always knew that being a parent was tough, we are chiefs, we are counsellors and we are taxi drivers as well as the rest. Then there is being a carer and a parent and all of a sudden I am a physiotherapist, a speech and language therapist and a disability advocate. I am learning skills and knowledge I never thought I would have to learn. I am learning medical acronyms that wouldn’t look wrong being said on the TV show House. I have learnt about sensory equipment and how my son finds certain sensations overwhelming while others would completely calm him.
I am living everyday as a carer and although it is not the path I would want for myself or my children, it is a job that I put 200% into, it is a job that I cannot fail otherwise I fail my children.
It’s a tough job, but I am proud to be my children’s carer.”
Celebrating Age will be the focus of an event in Bristol at the weekend. The Celebrating Age Festival on 23 September offers older people and their carers the opportunity to share experiences, make new friends and try out activities such as craft.
60 organisations are taking part so it will be a great one-stop shop for Bristol residents to find out about the things they can tap into locally. Trained staff will offer advice, health checks and massages. There will be a fashion show, dance performances, crochet for beginners, Qigong, pottery, cooking demonstrations and more.
The event is free of charge and takes place at the City Hall, Bristol from 10 – 4
Additionally Active Ageing Bristol will launch on College Green. This innovative programme delivers sport and physical activity opportunities for people aged 55+. You can try out walking,, rugby, football and netball.