Ruth Quintyne from Queen’s Park looks after her son, Floyd, 49 and is also a Trustee for Carers Network. She says “I’ve cared for my son since he was born. He is autistic and has a poor memory so needs moderate care. I get him up in the morning and supervise his breakfast making. Floyd is able to go out on his own but I take him to new places for the first couple of times so he feels comfortable and he has an outreach worker.
I do get some time to myself and there’s always something for me to do. I go to lots of groups: yoga, pilates, therapy, sewing class – at the moment we’re making a quilt. I have hip problems so enjoy my hip massages.
Practical support such as financial advice helps me to manage the family budget and first aid training gives me confidence that I can cope in an emergency. I used to go to a mental health group where I could discuss my problems and get emotional support. Other carers are the only people who understand what we go through so it helps to talk to them.
There’s also training on injury prevention and advice on benefits and any other problems you may have. It’s especially important with all the changes to benefits at the moment and has helped me to cope with them.
Through the Carers Break Scheme I have been able to buy a laptop, so I can shop online and send and receive emails. Being a carer can sometimes be isolating so it helps me to keep in touch with people. I’m just getting used to it so I’m not on Twitter or Facebook yet but this time next year, you never know!
Carers Network Westminster runs trips to places like Bournemouth and Brighton. I think that carers should have a break at least once a year as it helps you to cope.
It’s also common for long-term carers to suffer from physical and mental health problems so it’s important to make sure you get the health support you need. There are services out there to help you and Carers Network can recommend them depending on your situation. Any carer should get in touch.
Etta Carnelli, 57, lives in Knightsbridge and looks after her son, Carlo, 22. She says “Carlo has Fragile X Syndrome which causes difficulties with learning and his behaviour as well as hyperactivity, attention deficit disorder and mild autistic features.
I’ve been his main carer since he was born and do absolutely everything for him from the minute he starts his day until the evening. He can do a few things but I always need to be there to help him do things like getting dressed and washing.
For a long time I didn’t know there were any services for carers but when I found out about Carers Network they told me where to go for help. After looking at all the options, I decided the help that was just right for me was counseling sessions. Getting psychological and social support is so important and I now go for an hour every week.
Carers need the strength and clarity of mind to deal with so many things. We organise personal budgets, respite breaks and deal with many other practical and emotional issues. There is so much to cope with and people have no idea. You accept the unacceptable from the person you care for such as them breaking things. But it’s a different pressure from the normal problems in life as it’s created by someone you love. Counseling helped me to put all my pieces together.
There are also lots of events such as coffee mornings for family carers to share their experiences. You realise you’re not the only one. This helps but sometimes you want to enjoy your free time without talking about your life as a carer so you need to make sure you get a balance.
The council has also helped me to go on training courses. I learnt how to handle a personal budget and manage money. I also did a training course on how to stay safe as my son has challenging behavior. Communicating with my son is also difficult as he has autism so training helped me to spot an amber moment of frustration and diffuse the situation through communicating with him. It has made a difference to us both.
The carers break scheme is also important. You can get a grant if you are going away on your own and a bit extra if you are taking the person you care for with you. People tend to use it to visit their family with the person they care for or to take a short break on their own. You can also use the money to buy something like an iPad or a laptop or to pay for driving or swimming lessons. Another person I know spent her free time in her garden so bought planters to make it a nicer place to be.
Making sure you use health services is also vital. Your health is so important as someone else relies on you. There are six million carers in the UK and they save the country billions of pounds so it’s important to help them keep healthy.
“But the most important step to getting support is to recognise yourself as a carer. If you care for a family member or partner you may not think of yourself as a carer or realise that you’re entitled to support.”
Dame Philippa Russell
- Dame Philippa Russell presenting at the Carers Action Day 2013
Tell us how you became a Dame?
- Like most people who have received an Honour, I felt hugely privileged and quite unworthy! I became a Dame in recognition of the work that I had done for carers and also for disabled people –adults and children. I see the Honour as an award for all of us in the world of carers and caring, not just for me. My little grandsons were thrilled when I told them. They thought that the Queen would wear her crown and lots of diamonds and tap me on the shoulder with a golden sword! They were very disappointed when they saw the reality. Actually they thought that I would get a real sword as a prize, like a Knight, and they could borrow it to fight battles with.
What inspired me to get involved in politics?
- When my disabled son was born, we had a remarkable paediatrician at the Evelina Children’s Hospital in London. We were living in Central Africa when we got the diagnosis. I had brought Simon back to London because he was not developing well and there were very few children’s doctors in Malawi. Dr Ronnie McKeith told me that parent carers had power and they should firstly see professionals as partners and secondly work with them and other partners to change the world if we didn’t like it! I went to work for a children’s charity when we returned to London and I quickly realised that parents and carers were often ignored in national policy. Disabled people were often offered institutional care only and there was very little home-based support. But I also realised that we parents and carers often made ourselves ‘the enemy’ by not finding ways of working in partnership.I have never been ‘political’ but I have always been happy to work with politicians of all parties – at national and at local level. Now carers and users are automatically consulted and involved in new legislation and local and national policy. Back in the early 1970s I was only allowed into one particular meeting in Westminster because I had signed the Official Secrets Act (in our Foreign Office days in Africa) and was regarded as ‘safe’! The world has certainly changed and changed for the better and I think that the term ‘co-production’ reflects what we are all working towards.
What’s your proudest achievement?
- I think it has been enabling my disabled son to have an ordinary life. It has been hard at times, but he has a personal budget, his own home and a good life. He recently had his first art exhibition and he is a keen volunteer at several local projects. When he was born, he was offered a long-stay hospital place and no future at all. Now expectations have changed out of all expectations.But I have other good things to look back on. I remember working with other parents to get all disabled children the right to education. My son had no automatic right to go to school when he was born. I was also part of the campaign to get disabled children out of long stay hospitals and to give them the right to family life and education that they deserved. I also think the Children Act 1989 paved the way for a revolutionary change in attitudes to disability because for the first time the Council for Disabled Children (which I set up) and I were able to ensure that disabled children and their parent carers were actually included in an Act for all children. I was also privileged to be a Commissioner with the Disability Rights Commission and to work with it in achieving a wide range of human rights for disabled people and their carers. I hope that I can play a useful role in the Care Bill now going through Parliament – we need good legislation to underpin local developments. I should also mention the Standing Commission, which I chair. I believe that it has, and will continue to provide an important and independent policy forum which brings all parties together (carers of course included) in order to assist government and others in shaping the future. The Care Bill will be a big challenge but I like to think that the Standing Commission on Carers models the ‘co-production’ that we need for the future.
- What have you learnt from being a carer?
- This year I celebrate 50 years of caring – I realise that I am part of the first generation of parents whose disabled children will probably outlive us. It is a frightening thought but I have learnt that anything is possible if you believe in it and are willing to work to make it happen. I have learnt to hugely admire the carers and those who work with them – I do not think I could do what some of them do with huge grace, love and dignity. I also know that it is hard. We love our relatives – I have a disabled son, my mother had dementia and my husband now has end-stage heart failure. But I also realise how all of us can be torn in different directions. I also know the sheer frustration of endless assessments, re-assessments and delays. But I have also learnt the rewards of supporting someone well in their own home and community. And I have learnt that carers are not alone – belonging to several carers’ groups has been my personal prop and salvation when things have gone wrong. We need our networks.
- What has life taught you?
- I think it has taught me to value what you have and in particular to appreciate the people you meet. The carers’ world is wonderful, so many good people. I have certainly learnt the value of partnerships. But I also know that if you want to be a good carer, you need time for yourself. My wonderful paediatrician described earlier told me never to give everything up as a carer (as I said I would do). If you want to work, to play tennis, join a book club or grow roses, he said, do it, he said! Everything you give up, he reminded me, you also give up for the person you care for. So, I know that ‘short breaks’ matter, even if they are no more than half an hour with the dog round the block, weeding the garden or even going to work.
I have also learnt that laughter does solve a lot of things – the local police thought I was having a breakdown when I sat down laughing on the doorstep of my mother’s house in Cumbria – she had dementia and had somehow managed to pack the cooker with tins of salmon and turn it up high. The cooker blew up, blew out the kitchen windows, brought down two ceilings and coated everything with liquid salmon. The fire brigade and police arrived thinking it was a bomb. I just had to laugh at the absurdity of the situation, not least because the pie that was legitimately in the oven blew straight through the front door and ended up sitting on the front path undamaged – except that the dog had sneaked up and was busy eating it! It was an awful thing to happen, but to this day I laugh when I remember. My lovely mother had no idea whatsoever how much damage had been caused or that she or we could have been killed.
What would you tell your 16 year old self?
I think I would say ‘think about caring’ as something positive and something that all of us will need or will give in our life times. My family comes from New Zealand. My father was a doctor and was very shocked by what he saw as the negative attitudes of the English to old people. He was an obstetrician but every Christmas we children would tour the ‘new baby’ wards with him and then go down to the geriatric wards at another hospital where we would walk round and say Happy Christmas. My father understood why families couldn’t cope but he would say to us children that when we grew up, we should remember the old and disabled people in the ward and try and get them more support and better lives. As a very young child, talking to those elderly people in their starched white sheets and hearing their stories made me think much more seriously than most of my friends about what care meant. So, I would tell my 16 year old self, be caring, be ambitious and accept challenges.
Who or what has been your greatest influence?
I think my greatest influence has always been people. I had some inspiring teachers. I hugely admired my father who was passionate about social justice. The whole town came to his funeral when he died and I wish that he could have seen how many people had valued him. But I also think of the individual carers, professionals, friends, doctors, politicians (of all parties) and others who showed me how to make a difference.
What gets you through the day?
Most days I look forward to but some days are just so difficult. But if you are anxious about the person you care for, the paramedics have been called yet again in the middle of the night, a support worker is sick and the power goes off (as it did in the recent storms) and the stair lift doesn’t work, it’s easy to begin to feel desperate. I try to follow the Benedictine Rule of doing something spiritual, something useful and seeing something beautiful each day. Spiritual can mean anything from reading, listening to music to meditating. There are almost too many useful things to do if you are a carer but activity drives away anxiety. As for seeing something beautiful, it may mean no more than 5 minutes in the garden looking at the birds or the sunset (when we get any sun!) or making a list of the things that have gone well in the day.
A fellow carer gave me that tip because something has always gone right somewhere on even the worst day and identifying it, tilts the balance between feeling over-anxious and coping. I should add (perhaps shamefacedly) that I sometimes line up the dog and the cats and say how hard life is! They listen intently and then usually demand their supper, which puts a good reality check on feeling sorry for one’s self.
What would your motto be?
My son said that someone should make a film called ‘carry on caring’ because of the mix of successes, failures and, frankly, incidents which make you laugh in order not to cry. I don’t think ‘carry on caring’ quite fits into the existing series of ‘carry on’ films. When we lived in Africa, I volunteered in a local Leprosarium. Most people in the UK have probably forgotten what Leprosy is. But at one time it was dreaded as much as, if not more than, Bubonic Plague and affected people were instantly ostracised, often driven out of their villages along with their families. I remember one elderly lady in Malawi, caring for an even more elderly husband who had Parkinson’s disease. She was cured, but had some residual disability from the Leprosy. She could not go home, she said, caring was hard to manage on her own and without the support of the village. But, with a broad smile, she quoted a local saying – ‘Live the day and tomorrow will be better’. That’s how I care, she said, and I think it would be my motto too.
Mary Russell flying the colours for Great Britain
Tell us about you and Reece’s recent sporting achievement
I won four gold medals in shot put, javelin, discus and ladies football at the World Dwarf Games. Reece won 16 gold medals at the National Dwarf Games but didn’t win anything at the WDG as he was moved up into the adult’s category and was competing against world paralympians, although he did come forth in some games despite being the youngest.
What inspired you to get involved in sports?
I watched the Paralympics intensely last year and was inspired by Elle Simmons the swimmer who won four gold medals. She is truly inspirational. I have always liked sports and enjoy riding my bike, but up until last year neither my son nor I had ever competed nationally or internationally.
What’s your proudest achievement?
Winning four gold medals at the age of 44.
What have you learnt from being a carer?
Caring is and can be difficult, but as carers we need to sometimes relieve ourselves from time to time from our caring roles. Fortunately for me and Reece we both have the same disability which enables us to involve ourselves in activities together. That said I still need time away from my son to gather my thoughts, which helps me return to caring role with a renewed outlook.
What has life taught you?
Life has taught me that I am actually beautiful inside and outside despite what people may have thought about my condition. Things just take time to develop.
What would you tell your 16 year old self?
Don’t rush your life. There will be great things ahead to come you just don’t know it yet. Don’t do foolish things to get attention, the attention you require will come when you stop worrying.
Who or what has been your biggest influence?
The Dwarfs Sporting Association by far, as it has opened up an inner me that was always there but waiting to get out, I just didn’t have the tools to release it. I appreciate me and my limitations, I am proud of the achievements I’ve made in such a short space of time. Given more time, I will achieve more. Reece will hopefully achieve even more than me.
What gets you through the day?
Knowing I have a wonderful caring boy who relies on my support daily and that I’ll always do my utmost to assist him. I feel happier when I know he is happy and organised for the day ahead.
What would your motto be?
Go with the flow, grab every opportunity, don’t look back and don’t regret
Are you a carer with a story to tell? If so please email us.