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Resources for Carers and Family Members

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5 points on practicalities when someone dies

SOURCE: St Christopher's | TYPE: Tips

  • Register the death. You will need to make an appointment at your local register office within five days (eight in Scotland). They will produce a death certificate. Buy a few copies, and take a friend or family member with you for moral support.
  • Use the ‘Tell Us Once’ Service, your Registrar will be able to give you contact information. This service notifies all the relevant government departments. You can also use the Stop Mail service (see contact details below) who will be able to prevent marketing letters arriving for the person who has died.
  • You may be entitled to bereavement benefits. Visit the government’s website (below) for more information.
  • Arrange the funeral. Under the current restrictions enforced by the Government during the Covid-19 outbreak, funerals and cremations may be disrupted or delayed. If you are using a funeral director, they will be able to explain the current rules. In addition, the number of family members permitted to attend a funeral has been limited, and you may be unable to attend if you are in isolation, which can be very distressing. You might like to think of other ways that you can mark your own private goodbye or memorial at home.
  • Some people find it helpful to make a list of family/friends who could give practical help or advice, or to accept support already offered. Tackle things at your own pace and in your own time according to what works for you.

For further help, see


5 self-care tips for carers

SOURCE: St Christopher's | TYPE: Tips

1) Feel It, whatever “It” may be; laughter, sadness, anger, guilt, relief. It’s okay not to be okay, and it is okay to have fun and enjoy yourself.  You’re allowed to experience emotions and have the space to express them. If you ever feel like your emotions are becoming a problem then reach out for support; there are a lot of great online services to help if you are unable to meet someone face to face.

2) Remember you are still You. You have your own care needs and, whatever they may be, they need to be recognised and dealt with. It is not selfish to take time to care for yourself. Try to find the time or space to make yourself feel well, keep up with your own GP appointments and aim to spend time on your own hobbies and interests.

3) Remember to eat, drink and sleep! These needs often fall by the wayside and can be most disrupted in your caring role. Aim to eat nutrient dense foods, drink plenty of water and be mindful of alcohol intake. Good nutrition can help with energy levels and overall health. Many caring duties are 24/7 so trying to maintain good sleep habits and asking for time to allow you to sleep is vital.  Check out ways to improve your sleep.

4) Listen to your body.  Often caring can be physically demanding. Where possible, try to make sure you stretch your body and find time for physical activity you enjoy. This may be at home, something like yoga or dancing, or you may be able to attend a gym session or go for a run. If you feel at any point that you may have put too much stress on your body, speak to a professional to make sure it doesn’t get worse.

5) Ask for help. You can speak to professionals at your local Carer’s Centre or your GP. If you have a friend or family member you can speak to them to let them know how you’re feeling. It is okay to need support, and it’s better to look into the resources available to you long before you may need them. A lot of great services exist in the community to provide advice and support for both yourself and your loved one.


5 tips for planning the future

SOURCE: St Christopher's | TYPE: Tips

  • Think about your future care and support. A good place to start could be to think, ‘what’s important to me’? For example, would you choose to be at a hospice or stay at home; who would you like to be there if you get sick, and what kinds of treatments would you like or refuse? Write your decisions down so that those who care for you have a record.
  • Plan your own funeral: it isn’t being morbid, it’s being organised. Decide how you’d like it, then let your family know. When the time comes, it will be a huge comfort to them to know they are doing the right thing. You may want to talk with your family about how a funeral will be paid for and what aspects of the funeral are most important to you.
  • Make your thoughts about organ donation known and record them, so that your loved ones know your wishes in advance.
  • Consider whether you need to make a Will, which can allow you to plan what happens to you money, dependents, and possessions after you die. Making your wishes known in advance through a Will can often help to give you peace of mind for the future.
  • Think about your digital legacy, for example, what would happen to the information on your mobile phone or Facebook account. Take time to understand the options and then let people know what you’d like to happen.

For further information see https://www.dyingmatters.org/page/planning-ahead and St Christopher’s Leaflet on Do I need to make a Will?


5 tips for tackling difficult conversations

SOURCE: St Christopher's | TYPE: Tips

  • Be honest and personal: it’s OK to say ‘I know this is a sensitive subject’, or ‘we’ve never spoken about his before, but’ and then explain why it’s important to you to talk about dying and death
  • Choose your moment and try a general question like ‘have you ever thought about what you’d like to happen if you became seriously ill?’ or ‘have you ever thought about what kind of funeral you’d like?’ Or you might ask if they’ve considered what would happen to any dependents, organ donation, things that they’d like people to know, or written a Will  
  • If at first you don’t succeed… Try again later. You may have caught your loved one on an off day – but at least you’ve started the conversation
  • Mind your (body) language: non-verbal clues like crossing arms or covering their mouth may be a sign this conversation is uncomfortable. And watch your own body language too! Remember to relax and smile
  • Listen more than you speak. Once you’ve asked the initial question, concentrate on their answer. You may be surprised at what you hear and it could be a relief for the other person to talk openly.

For further help, go to https://www.dyingmatters.org/page/TalkingAboutDeathDying


5 tips on helping manage grief

SOURCE: St Christopher's | TYPE: Tips

  • Distract yourself a little if you can. Have a cuppa with a friend, if it’s possible, or watch a film
  • Being outdoors around nature is often beneficial for your mental wellbeing
  • Find a healthy outlet to express your grief – through exercise, talking, journaling or painting
  • Let others know what support or help you need, be it practical or emotional support
  • Promise yourself you won’t feel guilty if you laugh or forget for a moment that you are grieving. Instead, be grateful for these brief moments of respite.

For further help in your bereavement, go to


5 tips on how to say goodbye

SOURCE: St Christopher's | TYPE: Tips

  • It is very difficult to make sense of a death, sudden or expected. We are unable to make meaning of it for some time. We need to find ways in place of the previously recognised opportunities to gather and remember in the days after a death.
  • What rituals have been traditional in your family around a funeral or afterwards? Think how you might use these at home. Are there prayers or poems or prose or music that has a particular resonance and importance to you, or to the person who has died?
  • For the funeral, ask if it is possible to livestream the event so that family and friends can join this remotely.
  • Plan an event in the future when you can gather as a family with friends. What would be appropriate? Sharing stories, planning a eulogy or tribute, creating a photo montage.
  • Take time to remember alone. If lighting a candle or writing your memories helps with the remembering, these are good ways to hold the person who has died in your thoughts.

For more support you could visit https://www.cruse.org.uk/coronavirus/funerals


5 tips on remembering those who have died

SOURCE: St Christopher's | TYPE: Tips

  • Not being present when a relative dies, having the opportunity to say ‘goodbye’ or being unable to attend a funeral or memorial service can make grief more complicated to navigate. Saying goodbye matters. Each person must find their own ways to seek, create and take memories which allow the person who has died to remain present in the life of the bereaved even though physically absent.
  • Sharing stories and memories of the person who has died, either by writing a journal, or a joint phone call, or writing memories down helps to keep the person ‘alive’ in our thoughts.
  • Find a time in the year when the social situation changes when you can gather together to memorialise. In this, tell your memories, share pictures, allow yourselves to feel the sadness of the occasion as well and the happier memories you have.
  • It is possible to create memorial pages on social media sites. These can be accessed by several people who have permission from the page ‘owner.’
  • St Christopher’s has our own memorial pages for those who would like to develop their own away from social media. These allow memories to be written, photos to be added and ‘virtual candles’ to be lit.
  • The date of a death, a birthday or important anniversary can become occasions when the person who has died is remembered.
  • Bereavement does not end, it is lived with, and men and women remain bereaved. Enabling personal and shared opportunities to remember and memorialise recognises the we have continuing bonds with the deceased person.


5 tips on speaking to someone who is grieving

SOURCE: St Christopher's | TYPE: Tips

  • It’s better to do something than nothing – to acknowledge loss rather than ignore it
  • Look for invitations to talk from the other person. If they start talking about the person who has died, encourage them, even if it seems to make them upset
  • Be comforting when opening up the conversation rather business-like
  • Try and create an environment where the person has the freedom to talk or not talk, according to what they want. “I’m around all day if you fancy a chat…” 
  • Grief has its own pace and time so it will be different for each one of us. There should be no expectation on a bereaved person, for instance, that they need to cry – or stop crying – they will find a way through this that’s best for them

Further support can be found at
St Christopher’s Bereavement Team 020 8768 4599, info@stchristophers.org.uk 

Or https://www.thegoodgrieftrust.org/


Additional information on medicines used in symptom control

SOURCE: St Christopher's | TYPE: Leaflet

This leaflet contains further information on your medicines and the way that we sometimes use them in palliative care. If you have any more questions please ask your doctor, nurse or pharmacist. (more…)

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Advance Care Planning

SOURCE: St Christopher's | TYPE: Leaflet

This leaflet explains how to consider your choices and preferences for the future – if you have any other questions, we hope you will talk them over with a member of staff who will be glad to help.
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Art for All online Session 11.5.20: Get involved!

SOURCE: St Christopher's | TYPE: Videos

Join us for a YouTube art group each Tuesday where we’ll present art activities, along with calls for contributions to large scale St Christopher’s-wide art projects.

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Art for All online session 14.4.20

SOURCE: St Christopher's | TYPE: Videos

All our online sessions are free to join. If you are able to, please consider a small donation to our emergency appeal.

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Art for All Online Session 18.5.20: Make a wish with 1000 cranes

SOURCE: St Christopher's | TYPE: Videos

Join us to learn how to make an Origami crane at home, or even challenge yourself to complete Senbazuru!

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Art for All Online Session 2.6.20: A Room with a View

SOURCE: St Christopher's | TYPE: Videos

We’ve all spent a lot of time inside recently, and probably quite a while looking out of the window. In this session we explore what it is that makes a view important to us.

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Art for All online session 22.4.20

SOURCE: St Christopher's | TYPE: Videos

All you need is a pencil and paper for this activity and you’re ready to go!

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Art for All Online Session 25.5.20: We are the music makers

SOURCE: St Christopher's | TYPE: Videos

Join us to learn about making art from music: Follow in the footsteps of Kandinsky and listen to your favourite music to find inspiration to make your own artwork.

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Art for All online session 28.4.20: “Bring me sunshine”

SOURCE: St Christopher's | TYPE: Videos

This ‘Art for All’ session focuses on light- sunlight to be specific! Learn about Cyanotype art printing and to have a go at making your own art, using shadows as a creative inspiration.

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Art for All Online Session 4.5.20: “A page full of colour”

SOURCE: St Christopher's | TYPE: Videos

Sometimes we all need a bit of colour in our lives. Watch how to make the perfect art piece to complement an NHS window rainbow, using materials that everyone has at home. And take part in an activity that encourages us all to look at colour differently within our own homes.

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Bereavement

SOURCE: St Christopher's | TYPE: Leaflet

Most people will experience bereavement at some time in their life. Everyone reacts to their loss in their own unique way

Grief can be very painful and may give rise to feelings and thoughts that you don’t expect. You may find the information in this leaflet helpful. (more…)

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Breathlessness

SOURCE: St Christopher's | TYPE: Leaflet

This leaflet will provide you with basic advice to help you manage your breathlessness. It is intended to act as a reminder following a physiotherapy session – please ask if you have any questions. (more…)

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Candle: Children and Funerals

SOURCE: St Christopher's | TYPE: Leaflet

Parents and carers want to do the best for their children, and it is very hard to know what is best for them when a death has happened. You are trying to come to terms with what has happened, cope with painful and difficult feelings, and there are so many decisions and choices to be made.

This leaflet has been written to help you think about your children and the funeral, why they should have the chance to go, and how to answer some of their questions.

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Candle: Children, Young People and Loss

SOURCE: St Christopher's | TYPE: Leaflet

St Christopher’s has been providing bereavement counselling to patients’ families for over 50 years. St Christopher’s Candle Child Bereavement Service extends this support to all children, young people and their families in the south east London area, covering the boroughs of Croydon, Bromley, Lewisham, Southwark and Lambeth. Any parent, carer, teacher or healthcare professional can make a referral to the Candle Child Bereavement Service. Young people aged over 16 can refer themselves.

We also offer a specialist training, advice and consultancy service to schools and other agencies working with children facing bereavement.

(more…)

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Candle: How to help your bereaved child

SOURCE: St Christopher's | TYPE: Leaflet

How to help your bereaved child

You may be bereaved yourself, and may be finding it hard to keep your child’s needs in mind with all that is happening.The following points are a guide to help you focus on what is going on for them. (more…)

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Candle: Someone close has died

SOURCE: St Christopher's | TYPE: Leaflet

How to help a bereaved young person – a guide for adults

Every year many young people experience the death of someone they are close to. Some of these deaths will be sudden and some will be after a long illness, but all losses can be difficult for teenagers. This leaflet is designed to help you understand some of the aspects of a death that are hard for young people and to give some ideas about how you can offer support. (more…)

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Candle: Someone has died suddenly

SOURCE: St Christopher's | TYPE: Leaflet

Helping your child

Everyone is very shocked when someone dies suddenly. There has been no time to prepare and often no warning that the person was going to die. Shock affects adults and children physically and emotionally, and some of the effects you may notice are feeling dizzy or sick, shaky, shivery, hot and cold. After a shock we often feel very unsafe for a while, and need to take things quietly. This leaflet mentions some of the things you and your child may be feeling. (more…)

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Caring for your dying relative at home with COVID-19

SOURCE: Hospice UK | TYPE: Guidance

This guidance is produced to help support people who are caring for someone who is dying at home from COVID-19 infection

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Coping with dying

SOURCE: St Christopher's | TYPE: Leaflet

This leaflet describes some of the physical changes that happen to people as they start to die. It anticipates some of the questions you may want to ask about what is happening and why, and encourages you to ask for further help or information if there is anything at all that is worrying you.
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Coping with feelings of depression

SOURCE: St Christopher's | TYPE: Leaflet

1 Coping with feelings of depression

There is no right or wrong way to feel when you or someone close to you has a terminal illness. You may experience a range of emotions, at different times. You may feel shock, fear, anger and resentment. Or you may feel helpless, sad, frustrated or perhaps experience relief and acceptance. You may also feel isolated and alone, even if you have family and friends around you.
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Coronavirus (Covid-19) if you’re affected by terminal illness

SOURCE: Marie Curie | TYPE: Weblinks and Resource Lists

Marie Curie’s advice on understanding covid-19 if you’re affected by a terminal illness

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Coronavirus (Covid-19) if you’re affected by terminal illness

SOURCE: Marie Curie | TYPE: Guidance

Marie Curie’s advice on understanding Covid-19 if you’re affected by a terminal illness:

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Exercise at home

SOURCE: St Christopher's | TYPE: Videos

A set of four videos designed to help people through exercise.

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Frequently asked questions about ‘next of kin’ and power of attorney

SOURCE: St Christopher's | TYPE: Leaflet

When you are referred to our services, one of the questions we will ask you is about your ‘next of kin’. This is a term that most people have come across without knowing exactly what it means. This leaflet aims to explain it. (more…)

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Gardening vlog week 1

SOURCE: St Christopher's | TYPE: Videos

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Gardening vlog week 2

SOURCE: St Christopher's | TYPE: Videos

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Gardening vlog week 3

SOURCE: St Christopher's | TYPE: Videos

He’s back! Cliff, one of our volunteer gardeners at St Christopher’s Orpington, gives a tour of the beautiful gardens. With strict social distancing measures in place, he can show us how the garden has fared on its own for all those weeks!

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Help during your bereavement

SOURCE: St Christopher's | TYPE: Leaflet

Is it normal to feel this way?

When someone who is important to us dies it can feel unbearable, as though our whole world has changed. As unique individuals, our response to loss is also likely to be unique, and can be affected by the relationship we had with the person who died. There is no right or wrong way to grieve.

Ways to think about grief

“In some ways the pain of grief itself stayed much the same … but as time went on my world expanded so it felt less suffocating”
Dr Lois Tonkin (2006)

Dr Lois Tonkin, who writes about loss and grief, suggests a helpful way that we can think about grief:

  1. At first it can feel as if grief has filled your entire life
  2. As the weeks and months go by, something important happens. The grief may stay the same, but your life starts to grow around it. You will have new experiences and begin to find moments of enjoyment
  3. Eventually your life will grow around the grief. It will always be there, and it may grow bigger at difficult times, but it will not dominate your life.

Some reactions to grief

Emotions

“I can’t stop crying and I feel really angry”

Grief can have a powerful effect on how we feel. Sadness is a natural response to grief, although not exclusively expressed through tearfulness. We may be surprised or shocked by some of the feelings we are experiencing or we might not be able to feel anything at all. Some may find it easier or harder than others to express and cope with the emotions they are experiencing. This range of responses to loss is normal.

Sleeping

“I can’t sleep and I’m exhausted”

Grieving can be exhausting. Some people notice they are sleeping more than usual, while others have restless sleep, interrupted by dreams, or they might wake up during the night and can’t get back to sleep. For others sleep continues as usual. Many sleep hygiene tips are widely accessible online including mindfulness and sleep apps. Keeping a bedtime routine, having a relaxing bath, exercising or avoiding caffeine, amongst other things, may help.

Eating

“I’m not interested in food” or “I can’t stop eating”

We may feel we can’t be bothered to cook or we don’t feel hungry. Alternatively, we may be comfort eating or drinking more than usual. Try to eat at least one healthy meal a day. It is important to look after ourselves as best we can as this is likely to have a positive effect on our overall wellbeing.

Concentration

“There’s so much to do but I can’t put my mind to it”

Grieving can affect every part of us; mind body and spirit. It might be hard to concentrate, maybe your thoughts are confused or you just don’t know where to start. It’s important to be gentle and compassionate and not expect too much of yourself.

Health

“I don’t feel so good, both physically and in myself”

It is not uncommon to experience physical and/or mental health symptoms and it is important not to neglect your health. Your GP can talk you through some options which might help. Physical exercise like a walk, going to the gym or gardening can be beneficial to wellbeing.

Anxiety

“There’s a knot in my stomach”

When things happen that are out of our control we can sometimes feel anxious or worried. Looking at ways we have coped with stress and loss in the past can often help us manage some of the things we are experiencing at present. There are many different techniques and activities which can help alleviate symptoms of anxiety and different people will find things which work for them.

Will I ever feel the same again?

“I thought I was coping but now I’m going backwards”

When someone close to us dies, we know that life has changed and will never be exactly the same as before, but over time there will be an adjustment to this different life which will gradually become the new normal. Grief has its own pace so it will be different for each one of us. Bereavement is rarely experienced in a straight line so it’s natural that some days our bereavement will be more or less bearable than other days. It can often be affected by remembering through seasonal changes.

Family and support networks

“I don’t want to burden my family and friends”

We often hear that family and friends have been great but they have busy lives or they are bereaved too. We might not feel able to talk about how we really feel or we might have different ways of expressing grief and communicating than other family members. It can be helpful to find someone you know who is patient, kind and will listen to what you want to say about how you are feeling. Talking is part of the healing process. Some may find comfort in their faith and spirituality.

Practicalities

“Where do I start?”

It can seem like there is so much to do with new tasks to learn. Some people find it helpful to make a list of family/friends who could give practical help or advice, or to accept support already offered. Tackle things at your own pace and in your own time according to what works for you.

Are there things I can do that help?

  • It’s OK to have time off from your grief. Give yourself a welcome distraction if you feel able, like a cup of coffee with a friend or watching a film
  • Being outdoors around nature is often beneficial for your mental wellbeing
  • Find a healthy outlet to express your grief – through exercise, talking, journalling or painting
  • Let others know what support or help you need.

Here to help you

St Christopher’s Bereavement Team
Telephone 020 8768 4599
Email info@stchristophers.org.uk

Candle Child Bereavement Service
Telephone 020 8768 4533
Email info@stchristophers.org.uk

Anxiety UK
A charity offering support with anxiety.
www.anxietyuk.org.uk

Bereavement Advice Centre
Practical information and advice soon after a death.
Telephone 0800 634 9494 (Mon-Fri, 9am-5pm)
www.bereavementadvice.org

CALM (Campaign Against Living Miserably)
Telephone 0808 802 5858 (daily, 5pm-12am)
www.thecalmzone.net

GriefChat
A free online space to text and talk.
www.griefchat.co.uk (Mon-Fri, 9am-9pm)

The Loss Foundation
Offering virtual support groups for those who have lost a loved one to cancer.
www.thelossfoundation.org

Samaritans
A free 24/7 safe place to talk, for those in crisis
Telephone 116 123
Email jo@samaritans.org
www.samaritans.org

Shout
A 24/7 UK text service for people in crisis.
Text 85258

Silverline
A helpline for anyone over 55 years of age
Telephone 0800 4 70 80 90 (daily, 24 hours)
www.thesilverline.org.uk

Video resources
A channel for guided mindfulness and meditation
www.youtube.com/user/getsomeheadspace

A TedTalk by Dr Susan Delaney about different grieving styles
www.youtube.com/watch?v=F_HVeL99eK4

A TedTalk by bereavement specialist Julia Samuel MBE about the power of pain www.youtube.com/watch?v=flijEwhjW0M

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Helping someone to take their medication

SOURCE: Marie Curie | TYPE: Guidance

Marie Curie’s advice on ‘Helping someone to take their medicine’

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If something happens to you as a carer

SOURCE: Marie Curie | TYPE: Weblinks and Resource Lists

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Leaflets for healthcare professionals

SOURCE: St Christopher's | TYPE: Leaflets

St Christopher’s has produced a range of information leaflets for patients and carers. Healthcare professionals and other organisations may use this material providing St Christopher’s is credited as author. Copyright remains with St Christopher’s Hospice. For further information regarding use of leaflet material, please contact the Communications Manager on tel: 020 8768 4585 or email: communications@stchristophers.org.uk

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Managing breathlessness

SOURCE: St Christopher's | TYPE: Videos

Four videos designed to give people advice about managing breathlessness

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Medicines A to Z

SOURCE: NHS | TYPE: Weblinks and Resource Lists

NHS A to Z list of medicines

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Meditation – More than you can handle?

SOURCE: St Christopher's | TYPE: Videos

From the book Postcards from Heaven, words and pictures to help you hear from God, but Ellie Hart.

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Meditation – the art of firewalking

SOURCE: St Christopher's | TYPE: Videos

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Mindful breathing

SOURCE: St Christopher's | TYPE: Videos

Take a break from your desk to enjoy this short video on mindful breathing led by Sarah.

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Mindfulness Live Events

SOURCE: | TYPE: Webinar

Stirling Moorey is a Consultant Psychiatrist in CBT, South London and Maudsley NHS Trust and Visiting Senior Lecturer Institute of Psychiatry, Psychology and Neuroscience. Stirling provides weekly mindfulness sessions. To be included in the notifications for these sessions, please email Stirling on Stirling.Moorey@slam.nhs.uk


NHS Advance Care Planning

SOURCE: NHS | TYPE: Guidance

This guide is for people who are approaching the end of their life. Some parts of it may also be useful for people who are caring for someone who is dying, or people who want to plan in advance for their own end of life care.

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Preparing for a funeral

SOURCE: St Christopher's | TYPE: Leaflet

A funeral is a significant event. It may not be easy to think about, whether your own or that of a relative; for example how best to commemorate a life, what to include or leave out. However, planning a funeral can be helpful for those who are approaching the end of life and is one way of ensuring that their wishes are respected. (more…)

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Relaxation

SOURCE: St Christopher's | TYPE: Videos

A short guided relaxation exercise.

Please note that all exercises demonstrated and repetitions suggested are a guide. Please start with whatever you can do and build up gradually over time. Remember to rest as needed between repetitions and between exercises. If you feel dizzy or have chest pains when exercising stop immediately and seek medical help. 

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Visiting someone who may die soon

SOURCE: Marie Curie | TYPE: Weblinks and Resource Lists

For families: If you are unable to visit someone who is dying – what can you do instead?

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