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Carers' Gazette

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Carers' Gazette Carers’ Gazette News for Carers in Pembrokeshire Issue 43 - Autumn 2013 “Carers Day 2013” The 2013 Carers Day was held on the 15th June at the Rudbaxton Contents Hall in Crundale near Haverfordwest. The theme this year was Page: ‘Prepared to Care?’ 3 A Day in the Life 7 Upcoming Events 8 Organisation News 14 Carers Measure 16 Poetry & Books 18 Young Carers __________________ If you would like to receive regular news via e-mail please let me know by sending a message to: carers@ pavs.org.uk or telephone 01437 769422 Newsletters are also available electronically at www.pavs.org.uk/ carers ___________________ We would like to hear Photos show Chris Martin - from you if you wish any Chair Hywel Dda HB , carer’s news to be Simon Hancock - County included in the Carers Gazette. Councillor, Jenny Morris, members of carers support The next deadline is services and carers January 2014. attending the event Please email articles with your pictures or send to: Prepared to Care? Carers Gazette PAVS Exploring the impact of caring on people’s lives Freepost SWC4881 36-38 High Street Haverfordwest SA61 2ZZ Carers’ Gazette Page 2 “Carers Day 2013” continued….. Who do you care for? Above is a summary of the report from over 2,000 carers surveyed nationally during Carers Week. The Carers Week partnership wanted to find out from the UK’s carers how prepared as a society we are and what could make a difference to carers’ lives and the people they care for. Prepared to Care? explored the impact that caring has on people’s lives. In particular it focused on carers’ relationships, career, finances and health and well-being. (For more information see http://www.carersweek.org). Our Pembrokeshire event was well attended with plenty of information stands from local support organisations, and healthcare checks provided by the stroke nurses. Complimentary therapists were available in a separate room to provide a much needed session to relieve the stress of the carers who attended. Following a delicious and plentiful high tea, some light relief was provided by the line dancing club. After their very impressive display members of the audience were invited to come and join them. This was taken up by some intrepid carers and stall holders who enjoyed the experience very much. There was then time to spend meeting each other in an informal setting. Having a chance to meet other carers or find out useful information seemed to go down well from the feedback we received. Carers’ Gazette Page 3 A day in the life of Tina Norman, Carer and Cared for Background I was a SEN teacher, married with 2 young children and living in Devon, when I contracted viral meningitis in 1994 and sustained moderate brain damage from this. I became ill with ME too at this time, and my husband, who was in the RAF, had to leave his job in order to care for me and the children. I was bed-bound for 4 years, then ‘couch’ bound for a further 4. Later my husband became ill with heart problems, diabetes and cancer, my son was diagnosed with Asperger’s Syndrome, and following this we realised that my husband also had Asperger’s Syndrome. My daughter also had asthma, eczema and other problems, so we became a whole family of carers! Unfortunately my husband died 2 years ago after losing his battle with cancer and it was after this we moved to Pembrokeshire to be nearer my daughter. Who do you care for? My son, John, now 20 who has Asperger’s and he cares for me too with regards to my ME and following the second meningitis infection. I have cared for my father in the past and my husband of course. I am currently altering my house so that my mother can come to live with me then I will be caring for her too. What is your usual daily routine? In many ways I do not have a typical day, although I do try to keep to a routine for the sake of John. We keep mealtimes constant and if there are any changes happening I do a countdown to keep reminding him, which helps him cope, even with regards to what he eats and the way it is served. He gets agitated with changes and he has found it very difficult having the workmen in the house doing the alterations. In some ways he is like a normal teenager, playing on his computer games and grunting by the way of conversation, but in others he needs a lot more support. I also do some tutoring on the LAM courses (Looking After Me) for carers (editor’s note—see page 4 for further information on this). What support do you have? I do have support from John; he helps in practical ways by doing the heavy housework and sometimes, if I am feeling worse, he helps me dress (although there’s only so much you can ask a teenage boy to do!). Very importantly, as I have frequent blackouts, he has to know when he should call an ambulance – he has a checklist to refer to. However I have seen a gap and decided to try to fill this by setting up 2 new support groups. The first one is for parent carers, and I have had the first couple of meetings at my house. This is for parents of grown up children who have disabilities as I have found that there are particular problems to be overcome when they pass the age of 16 or 18. The other group is an ME one which is again is for people who suffer from ME or CFS (Chronic fatigue Syndrome) and their carers. What has been your worst experience? This was having meningitis for the second time, being carried off in an ambulance and seeing my son’s face. It was such a worry that he would not be ok – he did not call for help and I could not speak. I do carry a carer’s card but in Carers’ Gazette Page 4 A day in the life of Tina Norman continued……………. the panic to get me to hospital I did not have my handbag with me. I found the experience very difficult in hospital as they did not understand about ME, Meningitis or about carers. Luckily my neighbour saw the ambulance and called my daughter. What has been most helpful? Having the carers information pack with up to date information in it, having emails about items of interest to carers and the PAVS and PCC website. I especially like having a named person that I can contact if I need to and a lot of carers do not have access to the internet so it is especially important to have a phone number as well. I found the booklet ‘Say I’m Fine and Mean It’ very helpful too. What would you like to see changed to make it easier for carers? More education about carers. I would like to see people in the medical profession really understanding what it means to be a carer, what they are going through and to support them before they reach breaking point. I would like to see the ‘Stress Management’ courses that are offered to patients being adapted for Carers – it wouldn’t be that hard. What advice would you offer other carers? Keep fighting, don’t give up, ask for help. Sometimes you have to swallow your pride and ask for help, so don’t leave it until it is too late. Be proud that you’re a carer and give yourself a pat on the back. LAM—Looking After Me Course for Carers What is the LAM course………… The Looking After Me Programme – Run by Carers for Carers. This is a 6 week, 2.5 hours a week programme for anyone caring for someone who has a long term health condition. The emphasis of this programme is to give carers the opportunity to learn some skills to enable them to take care of their own health whilst caring for someone else, this encompasses relaxation techniques, communication skills, a range of cognitive techniques, working with health and social care staff and so much more. The project is now able to support carers with replacement carers costs. For more information contact Sarah on 01554 779507 The next course starts on Feb 20th 2014 in Pembroke Dock every Thursday from 10am—12.30pm for 6 weeks Tina Norman is a tutor on the above course and will be available to talk to anyone interested at our Carers Health Fair on 9th October. Carers’ Gazette Page 5 A day in the life of Mike James Pembrokeshire Carers Champion County Councillor of St Dogmaels ___________________________________________________________________________________________________________________ A typical working day for me would be leaving home between about 8 o’clock for a 10 am meeting in either County Hall in Haverfordwest or Llanion Park in Pembroke Dock – the headquarters respectively of Pembrokeshire County Council and the Pembrokeshire Coast National Park Authority (the two organisations of which I am a Member). Most meetings would be finished by 12.30 pm to 1 pm. I then spend time talking to officers, answering emails or organising site meetings within my Electoral Division. The three main villages within my Division are St. Dogmaels, Nevern and Moylegrove. I attend an average two to three evening meetings a week. Saturdays are filing days and dealing with the paperwork. When I work from home, I visit residents. I will walk the village to meet and talk to people.
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