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In Sickness and Health: An insight into the life of a carer – In celebration of Carers’ Week 18 to 24 June 2012


Join our debate on “In Sickness and Health: Caring for Carers: Identities, Perceptions, Challenges & Realities” Tuesday, 19 June 8:00 PM UK / 3:00 PM EDT @SWSCmedia.

This year’s theme for Carers’ Week (18 to 24 June) is “in sickness and health” and it aims to highlight the importance of carers’ health and how caring affects their lives.

The Hertfordshire Partnership NHS Foundation Trust (HPFT) wishes to acknowledge this by paying tribute to everyone who cares for someone with mental health problems.

To give an insight into what impact this can have on a person’s daily life, a Hertfordshire carer, Jean de Carteret agreed to share her experience, in order to raise awareness and understanding. Jean who is 66, said: “Caring for someone with a mental health problem is an intensive commitment which can span a lifetime. For me it has been a life-changing experience from which I will never escape.

“Few people realise that it robs both the carer and the sufferer of a normal life and can cause enduring mental health problems, which can change alarmingly from reasonable recovery to sudden relapse, but also heartache, poor physical health and lower life expectancy. It’s well known that people with severe mental health problems can live up to 20 years less, on average. This in turn, has an impact on the health of their carers who go through a grieving process as they watch their loved ones’ lives disintegrate.

“I have been a carer for my brother and son for over 30 years and although anti-psychotic drugs and outcomes have improved, my role has never diminished and will probably increase. I feel passionately about mental illness, particularly the more severe forms which can turn well adjusted, promising and fulfilled members of society into lifelong dependants on the state, health system and carers.

“However, I don’t feel sorry for myself. I have been a carer for so long it has become a way of life for me and I have become used to shouldering the responsibility that goes with this unpaid labour of love.

“Years ago that responsibility became very clear to me, when my late brother pleaded with me not to send him into a secure mental health unit again, when he was unable to keep food down. He had been sectioned countless times and was living in a hostel at the time. I insisted that he should be given a full physical examination. He could only eat soup and drinks liquids and after the tests were carried out, it turned out he was dying from oesophageal cancer. He went into a general ward in a hospital where he died soon afterwards, but with dignity and peace. That taught me to always listen and take very seriously the concerns and wishes of your loved one.

“That was my first experience with schizophrenia. The second was after my son, who had an IQ of 164 (140 and over = Genius or near genius), was fooling around with skunk cannabis with his mates during his first year at university. He said it felt like his brain moved and he threw up and had a shaking fit in his room. He was like a zombie afterwards and the left side of his head was very tender. He could not write, speak or read and was hallucinating and hearing weird things and became paranoid and stunned. Doctors said they believed the drugs had triggered schizophrenia and this was later confirmed. His sleeping pattern was irregular, often 18 hours at a stretch, then awake all night. There was the usual dismantling of clocks and speakers and childlike questions that a five-year-old would ask. For us as a family there were lots of tears, we felt as if there had been a bereavement. The incident, which was very dramatic and catastrophic, happened only months after my brother died.

“On a good day my son might get up at around midday, having gone to bed in the early hours of the morning. I have to make sure he has taken his medication during the day and in the evening. Sometimes I forget and so does he. He has no friends, so I might drive him out for a McDonald’s and we’ll eat it in the car park, or we’ll go and see a 3D film. Sometimes we’ll go for a stroll, but he has little energy and gets out of breath.

“My husband works, so I am my son’s main contact with the outside world, but he is agoraphobic and has little confidence with people. I go out and buy his clothes, which he then tries on and if they don’t fit, I’ll exchange them for something else. He has to be coaxed to shave and his hair is long, so his appearance attracts stares when he goes out, but I don’t care any more.

“He used to have friends, but they have lost touch over the years so I’ll chat about politics, TV or our cats just to engage him in conversation. I know he’d probably prefer to talk to friends about music, women or computer games.

“It’s a sad and lonely existence for both of us, boring and unfulfilled, scary and life-changing. I live it out with him as I feel it’s my duty to make his life as normal as possible. Every day is much the same although I look out for signs of a dip in his behaviour – the odd conversations, the sighs and weird sleeping patterns.

“There were times when he was very ill, when he would pace the streets and the river towpath in the early hours. Knowing his state of mind, I would try and find him and bring him home. Once he went missing completely and the panic set in about what might have happened to him. My work suffered forcing me to go from full-time to three days a week.

“My son had a couple of loyal friends, but gradually they slipped away and it is now left to his siblings to keep him in touch with his peer group. It’s not much of a life for a man of 33 who has been ill since he was 21.

“My life has also changed beyond recognition. At 66 I can no longer be carefree, plan my retirement, go off on cruises, enjoy days out or long lunches with friends. I am trapped in a confined life which is currently stable, but can change suddenly due to a relapse or the inevitable sleepless nights, threat of being sectioned, tantrums about taking medication, bizarre behaviour, rantings, crisis teams, psychiatrists, GPs and so on. It’s the moment every carer dreads and the mental worry when it all goes wrong is enormous. It’s like your computer crashing and you don’t know how to fix it. It’s no wonder that carers neglect their own health and welfare over long periods of time because there is never much respite or relief. I try not to get sick, because then I am no use to anyone, but this takes its toll in the end and I don’t expect to live as long as I might have.

“The problem with mental health is that it is still so stigmatised and very few people can empathise with it, let alone offer you sympathy. People know I am a carer and it shows up on my GP records, but I can count on one hand the number of acquaintances and friends who ever ask “how is your son?” or say “tell him I said hello”. The few who do, are the ones I value most nowadays, because they take the time to share my predicament, if only for a few minutes.

“There is no cure for schizophrenia, which can strike at a young age and leave families and carers coping with a miserable and debilitating illness for the rest of their lives. The lucky ones will just have psychotic episodes, some will manage to live on their own in little studio flats and have a measure of independence, while others might find caring partners.  Mine is a different story, but each carer will say the same – your life is never the same again.”

“However, the Hertfordshire Partnership NHS Foundation Trust has given us invaluable support for twelve years. Without their expertise in the field of psychiatry and their social care support from dedicated teams of Community Mental Health Workers, I and my son would not have been able to manage this illness and get to the stable stage we are at today. They listen, act quickly when necessary, work towards recovery, help during times of stress and signs of relapse and are always at the end of the telephone to offer advice and comfort. I and my son are deeply grateful for all their commitment over the years. They are quite simple a life saver. We just couldn’t cope with this illness without the Trust.”

If you or someone who cares for a person with mental health difficulties, live in Hertfordshire and would like further support or advice, telephone the Trust’s Single Point of Access on 0300 777 0707, or text 0300 777 0808, or send a fax to 0300 777 0909 or visit the website: www.hertspartsft.nhs.uk.

More information about carers groups, regular breaks, respite, befriending and individualised support can be gained through HPFT, the Carers’ Trust and Carers in Herts. Carers support is available for individuals caring for loved ones with mental health issues, as well as learning and physical disability, older age and children’s issues. For more information contact your Community Mental Health Team (CMHT) at HPFT on 01727 804700 or visit the website: www.hertspartsft.nhs.uk.

To mark Carers’ Week (18 – 24 June) – HPFT is holding a range of activities:

Wednesday 20 June 10am to 4pm – a salon session with HPFT and Oaklands College, St Albans.

A salon session to include mini reflexology, back, neck, and shoulder massages.

Thursday 21 June 2pm to 4pm – tea and cakes with HPFT with Letchworth Healthy Living Centre.

Tea and cakes are being served at the Healthy Living Centre, with information about what the Centre can offer carers.

Friday 22 June – rethink ‘Caring and Coping’ course at St Paul’s CMHT, Slippers Hill, Hemel Hempstead.

Booking in advance for this ‘Caring and Coping’ course is essential. Email: jonathan.clack@rethink.org.

Friday 22 Jun noon to 2pm – a sandwich lunch with HPFT and Rethink at St Paul’s CMHT, Slippers Hill, Hemel Hempstead.

A number of these events will be attended by members of the Trust’s service user and carer involvement teams. They will be on hand to speak to carers about how they can get involved in the Trust and to provide them with more information and details of local groups run both by the Trust and third sector organisations.

The Trust is supporting Carers Week Bike Ride on Sunday 24 June which has been organised by Jonathan Clack at Rethink Mental Illness. Everyone is to meet at 11am at Hartham Common, Hertford for the twelve mile ride along the National Cycle Network from Hertford to Cheshunt. Bring your own picnic. The route is all off-road and easily accessible via train or cycle. For further information telephone: 01920 465152 or email: jonathan.clack@rethink.org or visit the website: http://carersweek.org/events/find-an-event/events-2012/item/1792-rethink-mental-illness.

Ends

Notes:

Carers’ Week website: http://carersweek.org/

Carers’ Trust: www.carersuk.org/

Carers in Hertfordshire: http://www.carersinherts.co.uk/

Hertfordshire Partnership NHS Foundation Trust (HPFT):

Hertfordshire Partnership NHS Foundation Trust (HPFT) provides mental health and specialist learning disability services across Hertfordshire, and specialist learning disability services in North Essex and Norfolk.  Our 3,000 staff care for over 30,000 services users each year, across more than 100 locations.

The Trust is committed to providing excellent care. We have embarked on a transformational programme to ensure our services make a positive difference to the lives of service users and their carers.  Visit www.hertspartsft.nhs.uk

Press enquiries to:

Communications Department,
Hertfordshire Partnership NHS Foundation Trust,
99 Waverley Road,
St Albans,
Herts. AL3 5TL.
Tel: 01727 804791

The above was produced by Jackie Kramer as part of her placement project. Jackie is a social work student at the University of Hertfordshire.

Join our debate on “In Sickness and Health: Caring for Carers: Identities, Perceptions, Challenges & Realities” Tuesday, 19 June 8:00 PM UK / 3:00 PM EDT @SWSCmedia.

Also published by Hertfordshire Partnership NHS Foundation Trust.

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