Carers' Stories
Sharing memories
If you want a really interesting hour or two, one of the places we can recommend is Carers Champions’ Crownhill ‘drop-in’. It isn’t uncommon to hear hoots of laughter as carers joke about some of the things they used to get up to and share memories of people and places in Plymouth. Several people have said how much better they feel after a cuppa and a chat.
However, there was a change in the topic of conversation in November as one of the carers, who wishes to remain anonymous, started sharing memories from the 1960s in Liverpool. Everyone listened with fascination as she recounted times spent at the famous ‘Cavern’; it’s true that other carers were slightly disappointed to hear that she hadn’t seen the Beatles there – but that was soon overcome as she’d seen them elsewhere.
Among the celebrities heard in the Cavern were Stevie Wonder, Long John Baldry and the Who (‘They smashed up all their stuff!’). Someone asked about Gerry and the Pacemakers – ‘Oh yes,’ she said, ‘and I’ve been on the Ferry ’cross the Mersey!’ Laughing at herself, she remembered how she had ‘knocked off college’ at lunchtime, wearing her brother’s duffle coat ‘because it was scruffy’. She would go to the Cavern with her friend – they’d always be in the front and, of course, there were only soft drinks available then. Her friend had only recently joked that she was surprised she hadn’t seen any photos of them there; that was until she came across a book about the club. To her husband’s embarrassment, she screamed in the middle of Waterstones in Liverpool when she looked on the front to see a photo of them queuing to get in. A similar picture appeared later on a CD cover – what a claim to fame!
Someone commented that this connection with somewhere so well-known must be very exciting; while this may be true, we were also reminded that it can be hard to be so far away from our roots, missing out on school reunions and being able to reminisce with people who can share our memories.
Somehow the conversation moved on to Ernesettle and its monastery, Viking history, haunted house and the clay pipes found in someone’s garden. There really is never a dull moment!
Another contribution from a carer
Did you know that the Olympics were held in Athens this year? No, neither did Carers Champions; however, when Sally visited Maureen and Alan Stockdale in August, she found two people passionate about the Special Olympics – the third arm of the Olympic Organisation.
Mr and Mrs Stockdale found out about the Special Olympics almost by accident, when their son, Dave, started to enjoy playing bowls. Through a timely chain of events, he had the opportunity to participate in the National Games in Leicester in 2009 and it was a life-changing experience for them all. The first International Special Olympics Summer Games were held in Chicago, Illinois, USA, in 1968; founded by the Kennedys, the Games provide sports training and competition in Olympic-type sports for people with learning disabilities (the only criteria is that participants must be assessed by a professional as having an IQ less than 75).
Despite multiple problems, Dave Stockdale had always been a determined young man, keen on sports such as swimming; he even abseiled the Civic Centre building for the RNIB. He was the only representative from Plymouth at the games held in the Walker Stadium in Leicester in 2009, even though there were 2,700 athletes, 3,000 helpers, carers and coaches, 1,500 volunteers and 50,000 spectators. In fact the South West was barely represented.
On their return, Maureen and Alan began their efforts to turn this around; their vision is to see many more people from the area going to the Special Olympics Great Britain (SOGB) in 2013. They have worked tirelessly to raise the profile of the games locally: setting up a committee; looking for sponsors; trying to raise funds and seeking grants for the coaching necessary to prepare people for the regional and National games.
Opportunities for success and achievement are open to all adults and children (age 8 and over) with learning disabilities; athletes are grouped with those of similar performance for competitions – a unique system in the sporting world. There are gold, silver and bronze medals to be gained, and all competitors receive a ribbon. Sports include track and field events, ski-ing, boccia, cycling and sailing.
Alan and Maureen are keen to help more people benefit from this opportunity and have set up taster sessions and a weekly sports and social club. The Kitto Centre and YMCA are ‘on board’ and Marjon, keen to partner in this venture, is providing a module for student PE teachers in teaching people with learning disabilities – it is the only college to offer this on their syllabus.
Why make sport accessible? It has been recognised that people with learning disabilities often miss out on activity, and consequently have problems with fitness and health. There are several initiatives to make improvements and change the way that health professionals interact with people with learning disabilities. With 1.2 million people across Great Britain with a learning disability and a further 200 babies with learning disabilities born each week, this has to be a good thing.
Costs in terms of coaching and sending people to SOGB are quite high. Fundraising events in the near future include a barn dance at the Royal British Legion at Crownhill on November 19th, to the band ‘4 Feet First’. To buy tickets, please visit the website www.sopd.org.uk or phone 01752 408271
My Story – Karla Bowden
I am a carer for my Mum and my younger brother. I have been helping Mum care for my brother since he was little and have been a carer for my Mum for about five or six years since she had a stroke when I was about 14. She also suffers from arthritis and is now reliant on a wheelchair to get around. Together we both look after my little brother who suffers from a physical disability as well as autism and severe learning difficulties.
My little brother started going to Plymouth Music Zone (PMZ) about four years ago and I started accompanying him and have discovered a passion for music in myself. I became a regular at PMZ and have really got actively involved with their projects and got lots of support and training for myself.
I have learned to create music using a special programme on Apple Mac and I write music and sing and rap. A while ago I wrote some music for new mums experiencing post natal depression and this was distributed through the NHS to mums as part of NHS support for them. In July 2010 I performed at a PMZ awards ceremony and won the Nick Thomas Memorial Award for my musical achievement which also recognises my commitments and caring role at home. I have recently undertaken a Sound Skills Course which I completed in March and have been told I successfully passed this course.
I am currently participating in a PMZ mentoring scheme and am working on doing four new tracks, I am able to use the studio for two hours a week to work on this. I am currently also working on doing a CD about my experiences as a young carer (I am 21), which I hope to make available through schools and other organisations supporting young carers, who I hope will relate to my music and experiences. I really enjoy being able to get together with other young musicians at PMZ and all of us making music together.
We would like to thank the carer who has contributed this very different and inspiring story. She would like to remain anonymous.
More together now
I became a carer in 2000. My husband had encephalitis and spent six weeks in intensive care; his toes curled during that time and screws were inserted to straighten them. He had to learn to walk again.
In 2003 we took a cruise to the Mediterranean; we were about to arrive back in Falmouth, when my husband fell out of bed. A Pott’s fracture of his right ankle led to a piece of metal being put in his right leg. He had to learn to walk again.
While on the Isles of Scilly for Christmas 2006, my husband broke his left hip. For the third time he had to learn to walk again … and my role increased.
I also have health problems; it’s hard for elderly carers to keep caring for someone when they are ill themselves. In 1967 I was diagnosed with Chrohn’s disease; I also have Barrett’s disease, heart problems and bipolar disorder. By 2008, I was doing everything for my husband – even though he could have done more for himself – and the mental and physical strain began to really get to me. I became very poorly and was taken ill. Things didn’t improve and, in March 2009, I was admitted to Derriford Hospital for about six weeks. While I was there, my husband was supported by paid carers.
I came out of hospital very weak. For ten days we had meals-on-wheels, but my husband refused to eat them. By this time, I’d had enough; I just couldn’t cope any longer with the mental and physical strain, and took an overdose. My life was saved by a paramedic, who had come to the house as my husband had yet another fall. My consultant could see that I was desperate.
The following Monday I saw an advert for a flat to rent and knew this was the answer. That same day I saw the flat, met the landlady and my future home was settled.
There is a long story of how we both adapted to the new arrangements, but in fact we both prefer our independence now. My Attendance Allowance pays for a carer in the mornings and I look after myself with sensible food and exercise. Unfortunately, my husband fell out of bed again, broke his tibia and had to relearn to walk yet again; but this time I was able to help him without making myself ill.
Twelve months on, we are the greatest of friends; we speak to each other two or three times a day on the phone and meet up when we can – once or twice a week.
We’re better off apart than we ever were together.
Life goes on …
When Sally from Carers Champions met up with Lilian Smith at the Coffee Lounge on Mutley Plain, she hadn’t realised what an interesting afternoon she was in for!
Lilian, like her mother, was born in Plymouth; one of three children, she has lasting memories from her childhood. For example, on a day out to Paignton Zoo, she remembers how an elephant took a fancy to one visitor’s bright yellow dress; the battle that followed as keepers tried to get the elephant to release the dress … and the colour of the dress afterwards!
She can also remember the day her mum and auntie went into a phone box to phone the hospital – that was the day her father died. Lilian was six.
Lilian’s mother then raised three children on her own, as well as working, which is why Lilian never wanted her to go into a home.
Lilian married and moved to Lancashire, where she worked as a winder in a cotton mill. She used to send her mum train tickets so that she could visit Lilian and be taken out sight-seeing.
Sadly, on New Years Day 2001, Lilian lost her husband; in the same year the cotton mill closed down and her mother broke her leg. For fifteen months, Lilian worked as a paid carer in other people’s homes and then in a nursing home. In 2003, she gave up her job and her home and moved back to Plymouth to be with her mum.
In 2005, her mother had another accident. At first, Lilian would take her out as much as possible, catching the mobility bus into town; getting a taxi to play bingo; taking her on caravan holidays at Challaborough.
Two years ago, however, Lilian fell backwards off a step and shattered her heel. A plate and seven screws now hold her foot together. With her son’s help, Lilian fought to win back her independence, and after 19 months she was able to get a shoe on the damaged foot. Physiotherapy is ongoing.
Early this year Lilian’s mum was not well; the doctor suggested waiting for a forthcoming hospital appointment. Lilian returned from shopping later, to find her mother on the bathroom floor with cuts to her leg and head.
On her 93rd birthday, when unwell again, she seemed to give up. Increasing health problems led to a stay in hospital and Lilian knew this time that she wouldn’t be coming out. She died on the day following what would have been her own mother’s birthday.
Four months on and Lilian continues to receive calls and paperwork relating to her mother; apart from the inconvenience and the worry, this is just another reminder of her loss. Those reminders only add to those times when she wakes in the night, ready to go to help her mum as she always did … and to the many moments each day when something causes her to be suddenly aware of how much she misses her mum’s company.
Lilian still cares for her son and fights a daily battle with the pain in her foot, along with the battles over her mum’s TV licence and other bills but, as she says, ‘Life goes on …’
Our thanks go to Lilian Smith for sharing her moving story with us.
Jason's story
I would like to share my story with you; how I became a carer, the personal difficulties I have faced and the help I have received as well as some of my interests and hobbies.
I am originally from Bristol which is where I originally developed my interest in preserved railways. At 13 I was in a model engineering group at school and thus began a lifelong love of railways. More of this later
I met my wife fifteen years ago. We enjoyed a whirlwind romance and have been married for the last ten years. My wife is from Plymouth and although I have lived in various parts of the country we settled in Plymouth 14 years ago near our family.
About five years ago my wife had her first stroke. This did significant damage which was then compounded by two further strokes. As a result of these strokes my wife now is disabled having mobility problems and difficulties with her eye sight and memory. She was formerly a very active fit person and the physical difficulties she now faces have impacted not only on her but also me and our family. Accordingly I have been caring for her ever since.
Two years ago I suffered a nervous breakdown and have been battling clinical depression ever since. I have faced some very dark challenging times in the last two years and experienced some very dark thoughts and moods. Some days are better than others and some days have been particularly bad. Of course this also impacts on my wife and on our family.
I am very fortunate in having an excellent GP who has supported my wife and I and really helped us. It was whilst visiting my GP that I saw Carers Champions poster in the waiting room and got in contact. Since then I have received help with benefits advice and help accessing some funding from charitable sources from Carers Champions and been referred on to other organisations such as The Stroke Association who have been fantastic and Plymouth City Council who carried out an assessment for my wife and for myself and have been helping us. My wife and I are now awaiting some adaptations to our bathroom and have already had some other fittings installed in our home.
As I mentioned above I am a railways enthusiast. I am currently a guard on the South Devon Railway but have worked on other preserved railways previously as a guard around the country. Ihave been a guard on various preserved railways for over 20 years. During Carers Week in June this year a trip was organised for carers on the South Devon Railway and I was able to be the guard on duty that day. It was a great day and really good fun. I am currently training to drive diesel trains and am waiting to do my rules and regulations test in the near future.
With a combination of support and medical help from my GP, access to counselling, practical and financial help and the knowledge that my wife and I are supported by both family, friends and the various organisations in Plymouth I am able to control my illness and live with it rather than being controlled by it and I am able to care for my wife and continue getting on with my life and the things I love doing.
An interview with Simon McTierney
We thought we’d try copying the Readers Digest! Interviews with carers – a new way to hear your stories and a way for us to get out and meet people over a cup of coffee!
May 28th 2010 It was a hot day in Plymouth; a certain member of the Carers Champions team was limbering up for the half marathon; people around the country were looking back at the memory of the Dunkirk Landings and Sally (Carers Champions Advice and Outreach Worker) met Simon McTierney upstairs in the Dingles restaurant, overlooking the street below. Sally’s mission: to find out more about just one of the many carers in the city.
CC: Simon, what are the three things you’d most like people to know about you?
SM: Well, I’m an ex-boxer; but I’d like people to know that inside this exterior, lies a caring, empathetic person.
I also like talking – on all sorts of topics! [Hmm this might need several cups of coffee!]
I like having a laugh … not just for myself, because I like cheering people up… I’ve got a dry sense of humour.
CC: What would you be doing if you weren’t here now?
SM: Most likely I’d be painting or decorating – either for family or friends or for my landlord. I’ve been doing it for years … for employment and to help people.
CC: And how long have you been caring?
SM: It’s hard to tell really; it came on so gradually – when it’s someone you’ve known all your life you don’t really see it that way to start with. I suppose it must be 15 or 20 years now.
CC: What difference has it made to your life, Simon?
SM: I think I’m far less selfish now than I used to be; once I could just think about what I wanted to do and now I tend to think about other people in my plans. I’ve changed a lot as a person. People seem to appreciate me more – that’s nice.
I’ve had to give up a lot of things – I used to like to travel a lot and I don’t do that any more. Then, of course, there was the sport – especially the boxing; I don’t have much time for those nowadays.
And I guess it’s the main reason why I’ve stayed single – caring for my mum is less complicated without someone else …
CC: What about your family and friends – what difference has it made to them?
SM: Well, it’s definitely had an impact on my relationship with my siblings; before I was looked upon as the baby of the family. Now I feel as if they have more respect for me – not that they’d say that in so many words!
Then, when I started counselling, that made a difference to how they viewed me as well – they could see that I was a responsible person.
CC: How do you manage to juggle work and caring?
SM: It’s harder being self-employed in some ways – in one way it seems as if I could choose whether or not to work (if I’m needed in a crisis); yet it’s hard to turn down work when you need it! Some times of the year are worse than others – right now when it’s spring/summer time, people want things doing; I hate having to say no to things because I know that I won’t be able to fit them in with everything else. You know I also do volunteering – working with clients for MIND.
CC: So what happens when one thing gets in the way of the other?
SM: I have to prioritise … think about what I feel is the most important at the time … but it does cause real guilt if I’m doing one thing and get that horrible strong feeling that I should be somewhere else. [And don’t we know what that feels like?!]
CC: What do you do for yourself? Do you get any leisure activities?
SM: I still like to do some sport when I can. I’m doing a WEA computer course and sometimes I get to play a bit of badminton with the girls from the computer room. I’ve recently played golf with my landlord – of course that’s mostly summer time activities and maybe then I’d get one day and an evening to do things like that. Apart from that I like to play my guitar … I used to draw a lot of cartoons but I haven’t done that recently. [Mental note: ask Simon to draw something for the newsletter or the website!]
CC: Would you ever consider giving up caring?
SM: No! [You had to be there to see the shock that went with this single word answer!]
Well, it would just go against my principles – it’s not in my nature to do that.
CC: I didn’t think so somehow, but anyway, if you could change something in your life (apart from other people’s health) and if money was no object, what would that be?
SM: I’d really like a place of my own … in fact, come to think of it, I’d like two places of my own: one to escape the winter! This last one was pretty cold!
CC: Have you got any hopes or dreams for the future?
SM: Well I do have one goal: I really want to gain more experience in what I’m doing now, which is volunteering with MIND and Nightlink. That came about through others – they said that I had really good listening skills and should do something with them. In a few years time I’d like to think of myself as having a small base of clients and doing Mental Health counselling.
CC: Thanks Simon for giving up your time for this – what have you got to do now?
SM: I’m going to sell my car, then I’m dog-sitting for my sister – she’s taken Mum to the Chelsea Flower Show.
And with that Simon disappeared back into his busy world – where he is making a big difference to the worlds of other people.