Enhancing life, excelling in care Registered Charity No: 1086837
A guide to help you during your bereavement
Our promise
We will:
provide a range of high-quality care, support and information for patients, their loved ones and those bereaved help you live your best life by supporting you with your emotional, physical, spiritual, social and cultural needs and wishes listen carefully to your wishes and needs throughout your journey and always keep you and those important to you at the centre of all we do work closely together and alongside other professionals to ensure we provide you with the support you need to live your life how you choose deliver care and support where and when you need it keep you safe ensure we keep your information confidential and private develop trusting relationships with you and those important to you, enabling you to share your thoughts and feelings in a safe, nonjudgemental place provide support and care from compassionate, kind and skilled professionals and volunteers welcome everyone regardless of their age, gender, ethnicity, disability or sexual orientation and treat each person with dignity and respect We welcome hearing from our patients, their loved ones, and bereaved people. Their experiences help us understand what we’ve done well and give us guidance on how we can improve our care and support. To share your feedback with us, please visit our website www.hospiceathomewestcumbria.org.uk under ‘Feedback’ or call 01900 873173.
Contents About Us................................................................................................. 1 Family and Bereavement Support.......................................................... 4 What To Do First..................................................................................... 9 Who May Register The Death?............................................................... 12 How Do I Register A Death?................................................................... 13 Where To Register The Death................................................................. 15 People To Inform About The Death........................................................ 16 Arranging A Funeral................................................................................ 17 Help With Funeral Costs......................................................................... 19 Dealing With The Estate Of The Deceased............................................. 20 What To Do With Any Medication and Equipment................................ 21 Practical Help.......................................................................................... 21 Grief and Loss......................................................................................... 22 Talking To Children and Young People About Death............................... 26 Sunflower Tribute Fund.......................................................................... 27
About us Hospice at Home West Cumbria delivers high quality, palliative and end of life care, emotional support, complementary therapies and specialist lymphoedema care to people living in West Cumbria. We are the only provider of adult hospice services in this area and all funds raised help us to care for those in need within our local communities. Established in 1987, we have been recognised nationally and internationally for our excellent model of home-based palliative and end of life care. Hospice at Home West Cumbria works alongside and in collaboration with the other palliative care services, including clinical nurse specialists in palliative care. Home Nursing is at the heart of Hospice at Home West Cumbria. We provide skilled nursing care on a one-to-one basis to adults in their own homes or alternative residential settings, enabling them to remain in their chosen place at end of life. We offer a range of Family and Bereavement Support services for families, carers, and those bereaved, including one-to-one support, group support, and Complementary Therapies. Our help enables people to cope with the most challenging times in their lives.
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We are the only provider of Specialist Lymphoedema care in West Cumbria. We offer comprehensive assessments, advice and ongoing support to help patients manage their condition. Our care and support are available to anyone with a life limiting condition, regardless of the cause, and are offered free of charge. Hospice at Home West Cumbria must raise over £1.2 million each year to maintain and develop its services. If you would like to know more about any of the services that Hospice at Home West Cumbria has to offer, please contact us on 01900 705200.
You are not alone – we are here to support you Hospice at Home West Cumbria staff wish to express their deepest sincere sympathy to you and your family at this difficult time. This booklet aims to provide some useful help and advice during the early days of your bereavement. Inevitably, there are certain practical issues that need to be organised when someone dies and this booklet aims to advise you on what needs to be done. Grief is a normal reaction to the loss of someone you care about and this booklet also outlines some of the emotions or feelings you may encounter. If you feel that you need further support, advice or help, please do speak to us.
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Family and bereavement support Hospice at Home West Cumbria provides a tailor made Family and Bereavement Service for patients, carers and their families. These services are available both before and after bereavement and help with coping, loss, grief and bereavement. This support is available through one-to-one and group support and complementary therapy sessions.
One-to-one support We provide face-to-face emotional support for patients, carers, family members and those bereaved by fully trained Family and Bereavement Support staff and volunteers. We offer a safe and confidential space to talk and reflect with people who understand and are outside their immediate family and friends circle.
Grieve Well Together group Our Grieve Well Together group is for people who have lost a loved one from a life limiting illness. The group runs fortnightly and brings people together who share similar experiences. The group is here to support a person until they reach a place where they can support themselves. The group gives people the opportunity to talk confidentially and give and receive support from others.
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Complementary Therapies Our qualified therapists and volunteers provide Complementary Therapies to patients, carers and those who have been bereaved. These therapies can help to relieve symptoms of stress, anxiety, sleeplessness, pain and aid relaxation. Therapies are provided in our Therapy and Information Centre and, where appropriate, can also be provided in the individual’s home or in hospital.
Reflexology Reflexology is a non-invasive holistic massage, based on the principle that different points on the hands and feet correspond to different areas and organs of the body. The benefit of using gentle pressure over these points may help to restore a state of balance and sense of wellbeing.
Reiki Reiki is a gentle, non-invasive therapy which is soothing and can bring great peace to mind and body.
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Therapeutic massage Gentle touch is known to be so important to us and when used gently can bring great ease to the body.
Emotional Freedom Technique (EFT) EFT or tapping is a proven stress-management technique for the mind and body.
Breathing and relaxation techniques A variety of techniques may be used to calm the mind, ease breathlessness, de-escalate anxiety and improve sleep.
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Useful checklist following the death of a loved one Tick Box Notify family, friends, neighbours and workplace Obtain death certificate Book an appointment to register the death Choose a Funeral Director and contact them to begin arrangements Find ID documents Locate the Will if applicable Cancel any appointments
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Notes
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What to do first It is important that the body of the person who has died is cared for in a culturally sensitive and dignified manner. If someone dies at home: the death will need to be verified by a medical professional such as a Hospice at Home West Cumbria Nurse, District Nurse or GP. Once the death is verified you should call the family doctor to obtain a death certificate. If the death was expected, the doctor will give you a certificate showing the cause of death. You’ll also be given a formal notice stating that they have signed the certificate and telling you how to get the death registered. If the person is to be cremated you will need two certificates signed by different doctors, but this can be done at some point before the cremation and is usually arranged by the funeral director. Some people choose to help with the laying out of the body; others prefer this to be performed by the funeral director or a hospice nurse if they are present at the death. If a hospice nurse is present at the death, they will ask what your preferences are and will assist you with these. If the person dies in hospital: The body will usually be kept in the hospital mortuary until funeral directors or relatives arrange a chapel of rest, or for the body to be taken home. A death certificate and formal notice will be issued by the hospital. The Cumberland Infirmary and West Cumberland Hospital (North Cumbria University Hospitals NHS Trust) have a Bereavement Liaison Nurse Specialist who can help with any concerns you may have. In some circumstances the death will need to be referred to the coroner (if the person had a notifiable disease, e.g. Mesothelioma or Pneumoconiosis, if the death was unexpected or if the person had not been seen by a doctor in the last 14 days of life).
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Referral to the coroner is not a cause for concern. It may result in a postmortem but this is not automatic. The coroner will then give permission for a doctor to issue a death certificate. The doctor issuing the death certificate will ask whether the deceased is to be buried or cremated. If the person is to be cremated, the doctor has to speak personally to a second doctor who then has to examine the deceased and speak to those present at the time of death. This happens before a cremation certificate can be issued by a medical examiner at the crematorium. If the person is to be buried the issued death certificate can be presented directly to the Registrar of Births, Marriages and Deaths. Some people choose to keep their relative/friend at home between death and the funeral. Other people choose to have their relative/friend cared for at a local funeral director’s Parlour of Repose.
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Organ and tissue donation Wherever your relative or friend has died in hospital or at home, tissues (eyes, skin, and bone) can be donated for transplantation or research. It may be possible for your relative or friend to donate tissue up to 24 hours following their death. If you would like more information regarding donation please contact the Bereavement Liaison Nurse, your General Practitioner, Hospice Nurse or the Tissue Donation National Referral centre 24 hour service on 0800 432 0559.
Specialist organ donation team If your relative or friend has died in The Cumberland Infirmary or West Cumberland Hospital (North Cumbria University Hospitals NHS Trust), there are certain circumstances in which your relative or friend may be able to donate their organs (heart, lungs, kidneys, and liver). The Bereavement Liaison Nurse Specialist can refer to the regional Specialist Organ Donor team.
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Who may register the death? Regulations state that only certain people can register a death with the Registrar of Births, Marriages and Deaths. These are: •
A relative of the deceased who was present at the time of death
•
A relative of the deceased residing in the same local district
•
A person present at the time of death
•
A matron or officer in charge of a care home, provided they knew of the illness before the death
•
The person responsible for the body i.e. executor, solicitor or similar
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How do I register a death When you have been issued with a Death Certificate you are legally required to register the death within five working days. You will be asked to supply the following information. You may like to fill in the spaces below in preparation for your appointment: Date and place of death
Full name and surname (if the deceased was a married woman, her maiden name also)
Date and place of birth (town, county and country if born abroad)
Usual address and postcode
The last full time occupation
The full name, date of birth and occupation of a surviving spouse or civil partner
Whether the deceased was in receipt of a pension or allowance from public funds
NHS Medical card (if possible)
This information will form an entry in the Death Register. — 13 —
After registering the death, the registrar will give you: •
A Certificate of Registration of Death (form BD8) This is for social security purposes only. Please read the information on the back of the certificate. If any of it applies, fill in the certificate and send it to the relevant Social Security or Pension Office.
•
A Green Form You must give this to your funeral director so that they can go ahead with the funeral arrangements.
•
Certified copies of the Death Certificate These are often required for insurance purposes, Premium Bonds, bank accounts and private pension schemes etc. Upon request, the Register Office will be able to advise on the possible number of copies required, but there will be a charge for each copy. Many organisations will not accept photocopies.
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Where to register the death Whitehaven Registration Office Whitehaven Library, Lowther Street, Whitehaven, CA28 7QW Tel: 0300 373 3730 Carlisle Registration Office Lady Gillford’s House, Petteril Bank Road, Carlisle, CA1 3AJ Tel: 0300 373 3730 Wigton Registration Office Wigton Library, Wigton, CA7 9NJ Tel: 0300 373 3730 Penrith Registration Office Penrith Library, St Andrew’s Churchyard, Penrith, CA11 7YA Tel: 0300 373 3300
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People to inform about the death When someone dies there will be many organisations to contact. Accounts must be closed or cancelled, insurance claimed or details changed. Subscriptions, agreements, payments or direct debits need to be dealt with. Please use the following as guidance to see if you have contacted everyone you need: Accountant Car Insurance Company School or Nursery Clubs/Social Groups Credit Card Company Dentist Driving Licence Doctors Household Insurance Landlord Internet/Phone Provider Mobile Phone Company TV Subscriptions Loan Companies Hospital Clinics Mail for Redirection Pensions
Bank/Building Society Child Benefit Place of Worship Council Tax Office Creditors (anyone owed money) Debtors (anyone owing money) DVLA (driving licence/car tax) Employer Life Insurance Mortgage Provider Car Breakdown Cover National Insurance Contributions Passport Office Relatives and Friends Solicitors TV Licence Utilities (gas, electric, water)
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Arranging a funeral Funeral directors are very helpful people. First make sure that the death does not have to be reported to the coroner, as this could affect when the funeral can take place. The deceased person may have left funeral instructions in their will or a letter about their wishes. The deceased may have paid into a funeral plan, life insurance policy, or a pension scheme that provides a lump sum towards funeral costs. If you arrange the funeral, you are responsible for paying the bill, so check first where the money will come from. Most funeral directors will ask for the funeral disbursement costs (fees paid to third parties such as crematorium and clergy) to be paid up-front. Ask funeral directors for quotations to help you decide which company to use. The National Association of Funeral Directors and the National Society of Allied and Independent Funeral Directors have codes of practice for their members, which must offer a respectful basic funeral if asked. This includes: • • • • • •
The funeral director’s service A coffin Transfer of the deceased person from the place of death Care of the deceased before the funeral A hearse to the nearest crematorium or cemetery All necessary arrangements and paperwork
There may be extra charges for embalming, flowers, crematorium and cemetery fees, doctors and clergy. Ask your funeral director to explain these. Many people when planning a funeral, decide to have family flowers only and donations in lieu of flowers to a charity.
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Arranging a funeral without a funeral director Most people go to a funeral director who can make all the arrangements for you, whether you have a religious or non-religious service. However, you do not have to use a funeral director when someone has died; many people now have ‘do-it-yourself’ (DIY) funerals. These can include woodland burials. It is also possible to opt for a coffin made of materials such as wicker or cardboard. These DIY funerals can be a lot less expensive and more personal, intimate and environmentally friendly. The more advance planning you can do the better, so these may not be a good option if the person has already died.
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Help with funeral costs You may be able to get a grant to help pay for funeral costs from the Social Fund, but there are strict rules about who can get help and how much help. It’s worth checking whether you can get a payment before making funeral arrangements, although more often than not you will need to wait until you have the funeral director’s bill before you can get an assessment. You may not be able to get a payment if the deceased person had a pre-paid funeral plan.
Burial • •
Firstly find out if a plot in a church yard is available or has been reserved. The vicar, priest, minister or funeral director will be able to assist you If a plot in a cemetery is available or reserved, the local council will be able to assist you
Cremation • • •
No one can be cremated until the cause of death has been certified If you wish, a service can be held at your own place of worship before the cremation takes place at the crematorium It is important to state clearly what you want to happen to the cremated remains. Options can include scattering in a personally chosen spot or interment in a family grave
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Dealing with the estate of the deceased Probate is the legal process of the settling of the estate of a deceased person. First you will need to find out if they made a valid Will. This may be held by a bank, solicitor, will-safe facility, the Principal Probate Registry or a trusted friend or relative. A Will says what should happen to the deceased person’s estate – their money, property and possessions. If there is no Will the person is said to have died intestate and there are different rules for dealing with the estate. If there is a Will, usually the deceased will have appointed executors to deal with the estate. If no executors were appointed, or there is no Will, the court will appoint an administrator. Executors and administrators are known as personal representatives. If you think you are an executor you will have to apply to the local Probate Registry Office for a grant of representation. You can do this in person or through a solicitor. Sometimes there is no need to apply for a grant of representation because, for example, the value of the estate is very small (usually less than £5,000). In this case you need to write to the bank, building society, or whoever is holding the money. Solicitors can be very helpful in guiding you through these matters.
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What to do with any medication and equipment following the death of a person at home If someone dies at home it is the responsibility of the family to take the medicines to their local pharmacist for safe disposal. This should be done as soon as possible. Equipment that has been borrowed may need to be returned to the District Nursing Services or Hospital. Services and appointments need to be cancelled. The community nurse will also advise you if you need any further information.
Practical help Sometimes, the person who has died is the very person you may have relied upon for help and support with your day-to-day activities. Cumberland Council (Health and Social Care) and Age UK can assist in providing help so you are able to manage in your own home. You can contact your local Cumberland Council (Health and Social Care) or Age UK to arrange an assessment or be advised on how and you may be able to get help with services such as: • • •
Home Care Meals on Wheels Social Activities
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Grief and loss The death of a family member or friend can be a devastating experience and can bring about stronger emotions than you have previously felt. For some people the grieving starts at the time of death; for others it may start sooner. Grief may involve a number of changes in our lifestyle and in our attitude to living. It is a social and emotional upheaval - the world with which we are familiar has changed - so we need to be able to adapt to new circumstances. Change can be stressful, it is often difficult to get used to new situations. How we cope with grief depends on how close we were to the person who died, on our age, on our personality, the amount of support we get from each other and on our own beliefs about life and death.
How might I feel? There are no rules about the natural process of grieving; it’s a unique experience for everyone and reactions will vary. How you feel may depend on your previous relationship with the person who has died and how you felt about them, as well as your own personal experiences and present circumstances. You may experience a wide range of feelings that are difficult to make sense of. Grief can be an untidy and unpredictable experience which comes and goes in waves.
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How might this affect me emotionally? You may feel: • • • • • • •
Sad, low in mood, intensely distressed, unable to enjoy life and even depressed Worried, frightened, anxious and unable to relax Angry towards others, such as family, friends, health care workers, or even the person who has died Guilty and blame yourself Lonely, even when in the company of others A sense of relief after the death, perhaps following a period of distress in the time leading up to the death A sense of longing and searching for the person who has died
How might this affect me physically? You may feel: • • • • • •
Tired and exhausted with no energy to perform simple tasks Unable to sleep normally ‘Aches and pains’, such as headaches, back pain, and muscular aches Changes in your appetite, such as not feeling hungry, unable to enjoy eating, or wanting to over eat; this may lead to weight loss or gain Nauseous, have an unsettled stomach and possible changes in your bowel habits Low resistance and may pick up minor infections such as colds more easily
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How might this affect me spiritually? • • • •
Spirituality includes both religious and non-religious perspectives It includes searching for meaning, purpose and truth in our lives. It is an important part of the beliefs and values that make up our lives Medical illness, impending death and death can trigger spiritual distress affecting you physically and emotionally Hospice at Home West Cumbria can offer spiritual care, with experience and advice that is responsive to the diverse spiritual and religious needs within West Cumbria
How might this affect my behaviour? You may be: • • • •
Irritable, angry and distrusting of others Restless and unable to settle and relax Tearful or unable to cry Preferring your own company, rejecting others, such as friends, family, and social situations
Realising that some of these feelings, thoughts and behaviours are normal may help you feel less isolated and that you are not losing your mind. No-one can say how long you will feel this way - just as your relationship with the person before they died was unique, then your feelings of grief and their intensity and duration, are also unique. Grieving is necessary to help people find a way of living their lives while still feeling able to remember the person who has died and holding onto the bonds that you shared.
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What can I do to help myself? It is important not to forget about your own health. If you feel able to, try to eat regular meals rather than snacks and try to get adequate rest, even if you cannot sleep. At times of stress it may be tempting to feel like life would be easier if you moved house or made decisions about your loved one’s possessions, but in fact this is not a good time to make major changes in your life what seems right now, may not seem right in several months time. If you cannot avoid having to make important decisions, try and talk them over with someone you can trust and someone who can help you consider the various options. Your emotions may at times be very intense. This does not mean you are going mad or unable to cope.
What can others do to help me? Bereavement affects families in many different ways. Each family member will cope differently following bereavement. There may be a recurring need to talk to people about the person who has died, their illness and death, the good and the bad times. Families and friends can help listen to and share these memories, although they might find this difficult or uncomfortable at times, as many people do not know what to say. It is important to reach out to them when you need them because it may be difficult for others to know how you feel and what they can do to help. If you feel unable to share your feelings with family and friends, or don’t have anyone close, or if you are experiencing persistent problems coping with day-to-day life, then it may be worth considering other forms of support. Hospice at Home West Cumbria offers bereavement support on a oneto-one basis in your own home, as well as support in groups, in your local community. — 25 —
Talking to children and young people about death Adults often feel the need to protect children from death. They may feel children will not understand or that they will be too upset. However, we can often underestimate a child’s resilience and ability to cope. Children often find it harder if they are not told what is happening, because they may be more frightened by imagined events. Children should be told the facts in a simple manner, using appropriate words, e.g. ’dead’, ‘death’ or ‘died’, rather than ‘lost’ or ‘asleep’. Give them time to ask questions (which may be very direct) and offer plenty of reassurance. It’s helpful for adults to share feelings with children, such as feelings of sadness. By doing this they learn that it is natural to feel sad when someone dies. Children may like to draw pictures as part of their way of saying goodbye. Try to let children and young people share your grief and encourage them to express their feelings. It is common for them to think they were responsible in some way for the death. Talking, reading, drawing and playing games can be helpful.
Supporting a bereaved friend or relative Giving time to provide the opportunity for talking and for tears can be particularly helpful for those who are bereaved. Words are not always necessary; just listening and giving your time can be most helpful. You will find that some people need to cover the same topic over and over again. This can be an important part of the healing process and should be encouraged. It is important that the bereaved person be allowed to talk and to cry without being told to pull themselves together. Practical help, such as helping with chores or child care, can ease the bereaved person’s stress. — 26 —
Sunflower Tribute Fund
s e t u b i r T r e w o fl n u S A PL ACE TO REMEMBER SOMEONE SPECIAL
At Hospice at Home West Cumbria we know how important it is for you to remember someone you love. For many people, setting up a Sunflower Tribute Fund in the name of their loved one can be a positive way to celebrate the life of someone special. It’s a place where you, your family, friends and colleagues can remember important dates such as birthdays and anniversaries, and also update fundraising events you’ve held in memory of your loved one. You’ll have your own dedicated online page, where you can add photos and messages to share with friends and family. Your Sunflower Tribute Fund will help us continue to care for local people in their time of need, offering support to both them and their families during the most difficult of times. For more information about our Sunflower Tribute Funds, please contact our fundraising team on 01900 873173 or email info@hhwc. org.uk. www.hospiceathomewestcumbria.org.uk/sunflower-tributes
C O N TA C T U S For Home Nursing, Lymphoedema, Family and Bereavement Support and Complementary Therapy: Workington Community Hospital Park Lane Cumbria CA14 2RW Tel: 01900 705200 Email: info@hhwc.org.uk For Finance, Fundraising and Marketing: Head Office and Therapy and Information Centre 10 Finkle Street Workington Cumbria CA14 2BB Tel: 01900 873173 Email: info@hhwc.org.uk
If you have any good quality pre-loved items you would like to donate for us to sell in our stores: Donation Centre 48 Pow Street Workington Cumbria CA14 3AB Tel: 01900 268229
To visit one of our stores: 54 Pow Street Workington Cumbria CA14 3AB Tel: 01900 268045 Old Kings Arms Lane Main Street Cockermouth Cumbria CA13 9LS Tel: 01900 821431
Website: www.hospiceathomewestcumbria.org.uk
Hospice at Home West Cumbria is a company limited by guarantee Registered Company No. 4191126 registered in England and Wales Registered Charity No: 1086837 Registered with the Care Quality Commission Certificate No: 1-183623894
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@hospice_at_home_wc
@hospice_at_home_wc
@HospiceatHomeWC
@HospiceatHomeWestCumbria
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The Hospice would like to thank RNS Publications for publishing this information and the following pages contain some features from services offering their help at this time. Whilst the Hospice is grateful of their support it does not endorse or recommend any of the services that they provide.
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