Bereavement Support
following a young sudden cardiac death
Offering help and support to affected families @CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk
Alison Cox MBE CRY Founder
It is extremely difficult for the family to learn that, after their tragedy, the official cause of death has been from “natural causes”. However, when a specific cause of death cannot be determined, “death from natural causes” is how it has to be classified. There is, of course, nothing “natural” about losing an apparently fit and healthy young person in this way, but this verdict has to be used by the coroner to confirm that there has been no foul play. The coroner’s duty is to notify the police when an “unnatural” death is identified, because this will require further investigation. A death by ‘natural causes’ does not require police investigation. Most tragedies attributed to sudden death syndrome have no recognisable signs or symptoms. Usually the young person dies while engaged in some perfectly normal activity such as eating, drinking, exercising or in their sleep. The death of a seemingly healthy child or young adult is so out of order with the usual sequence of life that the effects are devastating. There is no preparation. Nor is there a clear link between an occurrence and its tragic consequences, as in accidental death. In talking to CRY families for over 20 years I have found that parents may have difficulty in not blaming themselves in this situation. Convinced they must have overlooked possible symptoms, their terrible loss is then compounded by feelings of guilt. It can be hard to believe that this weight will ever be lifted from you. Grief affects not only the emotions – other consequences can include exhaustion, feeling sick and being unable to eat or sleep. These reactions are completely normal at times of intense stress and shock. It could be important to talk to someone about your feelings, no matter what they are. It is not always easy to do this with people who are suffering directly from the same loss. Talking to someone outside your immediate family is often the most helpful way forward. These feelings can go deep inside. If you bottle them up, thinking you have them under control, they will probably resurface later. Expressing such feelings, recognising them and thus including them in your life can help to reconstruct a world that you know will never be the same again.
Alison Cox MBE CRY Founder
Since Alison founded CRY in 1995, over 2,000 bereaved families have contacted us for support and information.
Alison Cox founded Cardiac Risk in the Young (CRY) in 1995. As an experienced counsellor she developed a national bereavement support programme for families who had suffered from the tragedy of a young sudden cardiac death.
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Reg Charity No. 1050845
How can we help?
• CRY has Facebook groups where people (aged 18 and over) can connect and share experiences with other people who have been affected by a young sudden cardiac death. We have groups which are specifically for bereaved mums, bereaved dads, bereaved siblings, bereaved partners and bereaved friends, and we also have a ‘Family and Friends’ group which can be joined by anyone who has lost a young person to a sudden cardiac death.
CRY has a dedicated bereavement support programme to support families after the tragedy of the sudden cardiac death of a young person aged 35 or under. So many people have contacted CRY wondering if there are others they could talk to who have suffered similarly. No matter how much professional support is offered (either medical or therapeutic), sometimes just speaking to someone who has been through a similar experience, or reading their personal stories, helps the most. CRY’s Founder, Alison Cox, developed the CRY Bereavement Support Programme with this in mind. CRY offers individual and group support. • CRY has a network of Bereavement Supporters who have themselves been affected by a young sudden cardiac death. They have completed a two-year British Association of Counselling (BAC) accredited course so that they can offer support, over the telephone, to others. Telephone bereavement support is available to anyone over the age of 18 who has been affected by a young sudden cardiac death. The support offered with CRY’s Bereavement Supporters is for up to six months, however there is no pressure or obligation. Some people find they would just like a few calls, whilst others would like to talk to their Bereavement Supporter for the entire six-month period. • We offer National Bereavement Support Days, specifically for bereaved family members in Birmingham. People attend the Bereavement Support Day from all over the UK; this event gives people a chance to meet with others who have experienced a similar tragedy.
Reg Charity No. 1050845
• CRY holds two annual walk events – the CRY Heart of London Bridges Walk and the CRY Heart of Durham Walk. These can be attended by anyone who supports CRY, but the vast majority of people are walking in memory of a young person. Some people choose to walk in a team of family and friends, whilst others walk alone or just with their immediate family. The CRY Heart of London Bridges Walk is the main event in CRY’s calendar – in 2015, almost 2,000 people from all over the UK participated – and is another way that families can meet and be with each other. • CRY has developed the Grief series of booklets which contain personal stories from bereaved mums, dads, siblings and partners. Our Grief booklet library now includes: Sibling Grief, A Mother’s Grief, A Father’s Grief, A Partner’s Grief, A Friend’s Grief, Christmas following a young sudden cardiac death, and Anniversaries following a young sudden cardiac death. These booklets are available free of charge from the CRY office. • As well as emotional support, CRY also offers medical support through expert pathology and expert cardiology. It is advised that all first-degree relatives undergo cardiac tests following a young sudden cardiac death, and it is important that the family is seen by an expert cardiologist. CRY can offer advice about family screening after a tragedy. If you would like to speak about bereavement support or would like advice about expert pathology or cardiology, please contact CRY’s support team on 01737 363222 or email cry@c-r-y.org.uk.
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Support resources
CRY has created a series of booklets to help bereaved mothers, fathers, siblings, partners and friends who have been affected by a sudden cardiac death. Each booklet contains ten personal stories from people who have experienced a tragedy, in the hope that they will help others feel less alone in their experience and their feelings.
CRY has published two booklets, containing anonymous contributions from our Bereavement Supporters, about coping with Christmas and anniversaries following a young sudden cardiac death. Christmas and anniversaries can mark particularly difficult times of the year for our bereaved families. The booklets contain the personal coping strategies that our Bereavement Supporters have shared to help other families. Christmas following a young sudden cardiac death Christmas
following a young sudden cardiac death
Offering help and support to affected families @CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk
Preparing for the internationally celebrated Christian festival of Christmas is a prospect that haunts every family having to cope with the tragedy of a sudden cardiac death of a young person.
Finding ways to confront and deal with this massive public event requires enormous courage. Finding the motivation to survive it is a huge challenge for most of our bereaved families. Whether father, mother, sibling, partner or loving friend, it produces a maelstrom of emotions that can dominate the last quarter of every year – and for the rest of their lives. Seasonal music, traditions, celebrations and decorations lead up to a crescendo of excitment that explodes into Christmas Eve, Christmas Day and carries over into the following week as the New Year approaches. This booklet, with contributions from some of CRY’s Bereavement Supporters, helps show how others have developed coping strategies which are intensely personal and which they have so willingly shared.
Anniversaries following a young sudden cardiac death If someone inextricably close suddenly dies, anniversaries are something that most bereaved families and friends cannot, indeed do not, ever want to escape from. Their suffering is immense but is not easy to share. Their feelings grind and jangle with the demands of everyday life as they struggle to come to terms with the inexplicable tragedy that threatens to take over their present – and future too. Anniversaries provide a framework within which their recollections of time spent together can be harboured. They create a predictability which confirms that the person who dies will not be forgotten. It holds promise that their great loss will always be remembered. There is, at first, no softness in their memories. They are a brutal reminder of what is missing from their lives, reinforced by those who remember too. Life is intransigent and they have no option but to cope. However, when family and friends can show they have not forgotten, the impact is massive, reinforcing their craving that their loss will always be shared.
Christmas and anniversaries can be especially painful times of the year for CRY families. As well as being booklets for family members and friends who have been by devastated by a tragedy and would like to better understand how others cope, it is hoped that the booklets may also help the wider family and friends of the bereaved family, who are trying to support them following their devastating loss. 3
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Sibling Grief These stories express how they coped with: the catastrophic effect that reverberated through their family; how the expectation of having to take control feels; the terror of wondering who might be next; their grief being dismissed; finding themselves invisible; having friends too young to know how to cope with the impact of the death of a young person; the legacy of loss of a relationship still maturing; witnessing the agony of their parents’ suffering; wondering if mum and/or dad would have preferred them to have been the one who died… A Father’s Grief Mood swings; vulnerability; turmoil; disbelief; loss of control and the from hope to despair. This booklet bears witness to the brutality of a grief experienced over a decade ago, through to the rawness of a dad’s feelings after the recent death of his son. An onerous sense of responsibility to withhold their feelings for the family’s sake becomes a combustible cocktail of suppressed emotion. Their courage in revisiting the agonising impact of their tragedy has been inspired by their commitment to help other fathers affected.
Rich’s tribute to his son
Young Sudden Cardiac Death: A Father’s Grief
A Partner’s Grief The young sudden cardiac death of a partner is pulverising. The present, with lifeless options, offers no respite. The future, carefully crafted through a maturing relationship, has been destroyed in an instant. Unlike the memories from birth that exist for a child or sibling, partners can often only reach into their recent past to relive excruciatingly precious moments that must sustain a lifetime of grieving. The pain may soften in time, but will never be extinguished. Losing a partner to young sudden cardiac death rewrites the expectation of life for the one who is left behind.
Young Sudden Cardiac Death: A Partner’s Grief
A Mother’s Grief The impact on a mother of her child’s death is well documented. It is now properly recognised that her child cannot be “replaced” by having another baby; time does NOT heal, nor will mother one day move on. It is CRY’s hope that this booklet will not only help affected mothers, but also others to better understand why mum has such a massive battle to reinvent herself. Why her endeavours to “reconstruct” her life must first work past the “broken woman” she has become. Family members all grieve differently and in her battle to help she can be swamped by mourning the intolerable loss that frequently, and vividly, encapsulates her with feelings so raw as to defy survival.
Jenny and Adam both died of SADS
Young Sudden Cardiac Death: A Mother’s Grief
A Friend’s Grief A Friend’s Grief
following a young sudden cardiac death
Offering help and support to affected familie s
This powerful and deeply sensitive booklet articulating the thoughts and feelings of the sudden death of a fit and healthy special friend explains the ferocity of the impact of the loss. Its aim is to help others affected understand both their own response to such a life-changing event if they have experienced something similar, as well as friends and their families to become more aware of the searing grief that the authors have so brilliantly expressed and that, many years later, they are still fighting to come to terms with.
@CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk Reg Charity No. 1050845
Reg Charity No. 1050845
www.c-r-y.org.uk
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Group Support
“The CRY Bereavement Support Day was such a wonderful opportunity to meet other mums. “I could feel, and identify with, each mum’s heartache; but the day also gave me hope, meeting with people showing such courage and being able to find a way forward in spite of their loss/losses” Marion Hayman attended the Mums Bereavement Support Day
National Bereavement Support Days CRY’s annual Bereavement Support Days in Birmingham, are specifically for family members (aged 18 and over) who have been affected by a young sudden cardiac death. Dates and more information for upcoming CRY Bereavement Support Days are listed on CRY’s website here: www.c-r-y.org.uk/bereavement-support-days You can register for our Bereavement Support Days by post, on the phone or via the CRY website. CRY Bereavement Support Days are for people who would like to understand more about how to cope with the sudden loss of a young person (aged 35 and under) due to a cardiac-related condition; would like to meet others who have suffered a similar loss to themselves; and would like to learn more about CRY’s bereavement support programme.
Information There is a registration fee of £15 per person for each bereavement support event. Your registration will only be accepted if CRY receives the £15 registration fee (for each applicant) prior to the event. Applicants will be accepted on a first come, first served basis. If there is more than one person attending in your family/group, you are advised to apply as soon as possible to secure your places. Each person wishing to attend must complete a separate booking form. Attendees may sign in from 9:30am; events run from 10am to 3:30pm (approximately). A hot lunch is provided for all who attend.
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Travel expenses (car/train) will be refunded when receipts are sent to the CRY office after the event.
Bereavement Support Days provide the opportunity for bereaved people from all over the country to articulate their own feelings and learn from each other about how best to cope. Please note that if enough people do not register for these events, we will unfortunately have to consider cancelling. Online Support CRY has Facebook groups for people (aged 18 and over) to connect and share experiences with other people who have been affected by a young sudden cardiac death. There are groups which are specifically for bereaved mums, bereaved dads, bereaved siblings, bereaved partners and bereaved friends, and we also have a ‘Family and Friends’ group which can be joined by anyone who has lost a young person to a sudden cardiac death. So many people who contact CRY want to talk to others who have experienced a similar loss. The groups are private communities for people who are in touch with CRY to connect, share their feelings and experiences with others who have experienced the loss of a young person, and be part of a network of support for one another. A place where we hope you will feel safe in the knowledge that you are not alone in how you feel. The groups can only be seen by members; whilst CRY has access to the group as a group administrator, the group is not actively moderated by CRY. For more information about the groups or to join please visit: www.c-r-y.org.uk/group-support
www.c-r-y.org.uk
Reg Charity No. 1050845
Walks in memory
“A very, very emotional day – all these people walking together for the same reason. Amazing.” Donna Faulkner bereaved mum who attended the CRY Heart of London Bridges Walk
“So lovely to remember our beautiful friend, walking in the city she loved so much. We will love and miss her always.”
a team who attended the CRY Heart of London Bridges Walk in memory of their friend
CRY Heart of London Bridges Walk The CRY Heart of London Bridges Walk is the biggest annual event on the CRY calendar, attended by over a thousand supporters every summer – the vast majority of whom have been personally affected by the sudden cardiac death of a young person. Begun in 2007, the event offers participants the opportunity to walk and remember young people, whilst raising awareness of young sudden cardiac death in the capital.
CRY Heart of Durham Walk The CRY Heart of Durham Walk was instigated by our supporters in 2010 and has become an important autumn event in the city, with over a hundred friends and family affected by the sudden cardiac death of a young person taking part every year. The event offers participants the opportunity to walk and remember young people, whilst raising awareness of young sudden cardiac death across the region.
The walk starts at approximately 11am.
The walk starts at approximately 11am.
The start of the walk is at Potters Fields Park and finishes at Hays Galleria near London Bridge.
The walk starts and finishes at Durham Amateur Rowing Club.
Who can take part? Anyone with a moderate level of fitness. All ages are welcome but those aged 16 and under must be accompanied by an adult. A wheelchair friendly/shorter route is available. Do I have to raise sponsorship? Your entry fee goes towards the cost of running the event safely. There is no obligation to fundraise. Do I have to be in a team? Many people will be taking part on their own and many as part of a team. There will be an opportunity to meet others who are walking in memory of someone. Any questions? Please call CRY on 01737 363222 or email events@c-r-y.org.uk
Reg Charity No. 1050845
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Individual Support
“It helps to discover that your Bereavement Supporter did and does experience the same emotions, fears and challenges as you do. It makes you feel less ‘alone’ in the world.” Murdo Macleod bereaved dad who received telephone support through CRY
“My Bereavement Supporter has lived through the same horrific experience with her son and she has survived it. She can empathise with how I am feeling and gives me hope. She understands the loss and pain.” Clare Watts bereaved mum who received telephone support through CRY
Cardiac Risk in the Young has trained a network of Bereavement Supporters, all of whom have themselves been affected by a young sudden cardiac death.
each person to a different Bereavement Supporter to maintain privacy.
Our Bereavement Supporters have all completed the two-year British Association of Counselling (BAC) accredited Skills and Theory course so that they can support others through their loss.
The telephone support that we offer is for up to six months. However there is no pressure or obligation. Some people would like to speak weekly for the entire six months; whilst others decide that they would just like a couple of calls with someone who has been through a similar experience.
So many people have contacted CRY wondering if there are others who they could talk to who have suffered similar tragedies.
At the end of each call you decide with your Bereavement Supporter when, or if, you would like to speak again.
No matter how much professional support is offered (either medical or therapeutic), sometimes just chatting to someone who has been through a similar experience helps the most. Alison Cox developed the CRY Bereavement Support Programme with this in mind.
If you would like to speak with a CRY Bereavement Supporter, please contact CRY’s support team on 01737 363222 or at cry@c-r-y.org.uk.
CRY offers telephone bereavement support to anyone (aged 18 and over) who has lost a young person to a sudden cardiac death. Where possible, we will try to place people with a Bereavement Supporter who has experienced the same aspect of grief, for example another bereaved sibling or bereaved mum. If we do not have a Bereavement Supporter who has experienced the same aspect of grief, and you would like to speak with someone, please be assured we would still arrange for you to speak with one of our Bereavement Supporters. Your Bereavement Supporter is someone who is there specifically for you to speak with about your tragedy. If more than one member of the family would like telephone support then we would refer 7
Our Bereavement Support Programme Manager will register you on our waiting list to speak with a Bereavement Supporter. As soon as we have someone available, our Bereavement Support Programme Manager will contact you to let you know the name of your Bereavement Supporter and to confirm that you would still like to speak with someone. Your contact details (normally an email address, landline number and/or mobile number) will be passed on to your Bereavement Supporter, who will be in touch with you to arrange a time when you would both be available for your first call.
Because we often have a waiting list, please consider registering with us as soon as you are considering having telephone bereavement support. This will secure your place on the waiting list, which can be withdrawn on request.
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Reg Charity No. 1050845
Bereavement Supporters
family and I so much in those early days, just talking to someone who truly understood what I was going through gave me the strength to carry on. Being a bereavement supporter I am able to be there for others who have suffered such devastating losses of loved ones.
Sue Ainsworth: On Sunday 11th April, 2010, my son, Jonathan, passed away suddenly in his sleep. Our family are still devastated and struggle to understand how a seemingly fit and healthy person can have their life tragically end without any warning. I became involved with CRY when I realised that SADS had implications for my daughter. We were so supported that I wanted to give something back in return for the help we received. Diana Bower: My son-in-law, Andrew, was a healthy, successful and proud father-to-be. When he died suddenly aged 30, my daughter’s dreams were shattered. Having supported her through the ups and downs, I would now like to help others. Although times can still be difficult, watching my daughter and grandson laugh together brings me a happiness I couldn’t envisage after Andrew’s death. Gabby Broadhurst: On December 1st 2010, I lost my beloved son, David, to a sudden cardiac arrest in his sleep. He was a fit young man who played football and hockey from a young age and never complained of any symptoms that would have indicated there was a problem. We were all in complete shock, not knowing anything at the time about sudden cardiac death in the young and that 12 young people die each week in the UK from undiagnosed heart conditions. CRY helped my
Reg Charity No. 1050845
Irene Broughton: My world changed forever on Sunday 2nd September 2007 when we found my 17-year-old daughter, Steffani, had died in her sleep after going to bed a fit and healthy teenager. How could this be? I had never heard of SADS. The internet led us to CRY who were a tremendous help to me in the early days and are still there for me. I hope I can help others by sharing my experience and being there to listen to and support people who have had a similar devastating experience. Angela Butler: My son, Nathan, collapsed and died suddenly in his bedroom on the morning of 22nd February 2006 whilst he was getting dressed. Nathan was a happy, healthy and very fit young man and to be told that he’d died from an underlying cardiac condition was, and still is, very difficult to comprehend. I have had tremendous support from CRY and the bereavement support that I received after Nathan’s death helped me to come to terms with our loss and somehow gave me the strength to support my family. I hope that I can offer the same support to others going through the same terrible journey that I’ve gone through. Sue Fisher: On June 28th, 2012, my son, Phil Standing, died suddenly whilst playing cricket. He left a beautiful wife, twin boys of 21 months, and a sister. We were all devastated. A, fit, healthy, young father with twinkling eyes was no more. How could that be! CRY’s team have supported me through the maze of grief and still do. I hope now that I can offer support to others who tread this harrowing journey.
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David Foley: My son Nolan, died in August, 2008, just days after his 30th birthday. He was relaxing at home on the morning of the first day of a week’s holiday when he collapsed and died, no warning or suspicion of any heart issue. The CRY charity helped my family in the following months to find reasons and access family screening and counselling. I hope to now give back by helping to support others in some way however small. Linda Goodwin: Our son, Ashley, completed the London Marathon in 2005 and 2006. He died suddenly at home in July, 2007, of hypertrophic cardiomyopathy (HCM) the day after his 35th birthday. Words cannot describe the feeling of utter devastation in the following hours, days and weeks. Only the support of family, friends and CRY have enabled us to slowly rebuild our lives. Shelagh Green: My husband, James, went off to play cricket in 2002 and didn’t come home; he collapsed and died from undiagnosed cardiomyopathy. His family, friends and I lost a wonderful person and we were all robbed of the future we thought we were going to enjoy together. I hope through bereavement support I can help others navigate life after their sudden tragic loss. Marion Hayman: Our lives changed on January 3rd, 2013, when our beautiful son, Jon, died. He was always so active, fit and healthy. His death was sudden and unforeseen but he had been complaining of flu-like symptoms. He died of hypertrophic cardiomyopathy. Grateful for the counselling I received through CRY, I have become a bereavement supporter myself. The calls helped me immensely and I would like to offer others the same support, at this most traumatic, excruciatingly painful time in their lives. 9
Joan Hillier: Laura was working during her vacation in her father’s GP surgery. She suddenly collapsed and died on 20th June, 2003, aged 21, from undiagnosed arrhythmogenic right ventricular cardiomyopathy (ARVC). She was lively, witty, a fun person, a joy to know and is deeply missed by all who knew her. Paul Hovhannisyan: We lost our son, Samuel, in October, 2008, when he died in his sleep. He had been a perfectly healthy boy and this came out of nowhere. He had just started primary school and was the centre of our lives. Words cannot describe how we felt about this. Working with CRY has helped connect me with some wonderful people and restored some faith in the world, as well as aiding my own recovery from such an event. I hope to help other parents realise that they are not alone. Diana Hunt: My son, Matt Hadfield, died on February 19th, 2010, just short of his 30th birthday. His family and friends celebrate the special man that they loved and lost, but miss dreadfully the future life that they should have shared with him. I am proud of my involvement with CRY and hope that through my own experience I can help others to endure at this hardest of times. Jane Lambert: The tragic and unexpected deaths of my children whilst sleeping resulted from undiagnosed ARVC. In 1992, Jenny, aged 17, died with no clear diagnoses. At that time inherited heart conditions were not widely known. When Adam died in 2011, aged 34, CRY was there for me, providing both invaluable information and support that I so desperately sought. I hope to be of support to others during these most difficult of times.
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Reg Charity No. 1050845
Bruce Lord: Our daughter Rachael (24), died suddenly in March, 2008, from a cardiac arrhythmia when swimming in the hotel pool whilst on holiday abroad with her partner. Doctors were investigating her fainting episodes. She was talented, level-headed, much loved and is sadly missed by everyone who knew her. Ruth Lowe: I had never heard of SADS until 12th April 2004 when my only child, Andrew, died suddenly at 21, shortly before he was going to be married. Andrew rarely went to the doctor but had been experiencing symptoms no-one thought could be serious. We were left bewildered after his sudden death. I feel privileged to be a Bereavement Supporter and hope through my own experience I will be able to help others. Katherine McNamara: My younger brother, Si, was on holiday in Croatia with a group of friends in July, 2008, when he suddenly collapsed and died. He was 25 years old, and seemingly fit and healthy. It just didn’t make any sense and the future looked impossible. It was on the very first CRY Siblings Bereavement Support Day that I found people who truly understood and where no explanations were needed. I knew, from that day, that I wanted to help others find that same support and way forward. Carly Sykes-Blowers: My husband, Paul, died aged 28 playing football in April, 2005. Extremely fit and healthy, he showed no signs of any problem. His death left me and our baby son devastated. CRY’s help and persistence enabled me to obtain a diagnosis other than “natural causes” and ensured Thomas has ongoing screening, as Paul died of the genetic condition ARVC. CRY has proved to be the support network I needed on so many levels. Reg Charity No. 1050845
Vanessa Vaughan: My fit and vibrant brother, Simon (35) died suddenly in July, 2004, of undiagnosed ARVC, leaving a traumatised wife and four young children. We are still devastated and shocked at his sudden death and miss him every day. I have ARVC and was fitted with an ICD soon after my brother died. I trained as a Bereavement Supporter to try and help others through their grief. Jenny Thomas: Our son, Nicholas, 25, died suddenly at the wheel of his car while waiting for the traffic lights to change on the 13th January, 2005, from long QT syndrome. No words can describe our devastation. He is thought of every hour of every day. With the support of family, friends and CRY we have been able to carry on and I hope my training as a Bereavement Supporter will enable me to help others. Diane Tolley: My 15-year-old son Robert was on a bike ride with his two best friends. During the ride, Robert got off his bike complaining of feeling dizzy. He collapsed and died, despite the best efforts of passers-by and paramedics. Robert died from hypertrophic cardiomyopathy. There were no warnings, signs or symptoms of this condition. Sarah Willis: Our son, Jo, collapsed and died suddenly and unexpectedly on the 26th February, 2005, after going for a Saturday morning run. He was 19 and in his first year at university. Jo was a good listener and always made time for people. In becoming a CRY Bereavement Supporter I want to help other parents or relatives who are facing similar tragedies – and to remember Jo by listening to others.
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