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End of life issues

Bereavement support

When a person you look after dies, you may be not only losing a loved one, but as a carer you may be losing your sense of purpose when your caring role ends. It may not feel like it, but there are many people who you can turn to for help and support, including health and social services professionals who are becoming more aware of this impact.

Bereavement care and support are now being routinely offered to all carers, family and close friends. Family members and friends can also provide emotional support.

You might find it useful to find out more about registering a death and dealing with wills and estate. The NHS Choices End of life care guide may also be helpful.

Counselling services

You may also feel the need for a professional counsellor to talk to at this time. Use the NHS Choices directory of therapy and counselling services to find contact details for members of the British Association for Counselling and Psychotherapy, the British Association for Behaviour and Cognitive Psychotherapies, as well as independent mental health practitioners.

As a carer you may feel more comfortable talking to other people who are in a similar situation. There may be support groups for carers in your local area. Cruse Bereavement Care is the leading bereavement charity in the UK, with more than 100 branches and 6,000 volunteers nationwide. Its website offers help and support. You can find contact details for local Cruse services in the NHS Choices directory of bereavement services. Cruse also has a website for young bereaved people called Road for You.

Many hospices also offer bereavement counselling. Help the Hospices is a charity that supports hospice care across the country. Call the Help the Hospices hospice information service on 020 7520 8222, or use the directory of end of life care services to find a hospice or palliative care provider near you.

You can also ask your GP and other health professionals for a list of counselling services for you or other members of your family.

Coping with grief

When someone close to you dies, it’s normal to experience sadness and grief. Everyone experiences grief and deals with loss in a different way.

Many people feel shock and disbelief when someone dies, even if their death was expected. Others feel completely numb for a while and experience strong emotions later on. Both of these reactions are perfectly normal.

The grieving process can cause feelings of despair, depression, anger, fear and even relief. These can happen suddenly, change quickly or come all at once.

Many people experience a feeling of profound unfairness over the loss of a loved one and many regret not having the chance to say or do many of the things they wished they had. Again, these feelings and reactions are perfectly normal.

Physical effects of loss

Sometimes, the shock and grief can be so intense that they cause physical symptoms. These are often the same as acute stress or anxiety (panic attacks), including nausea, dizziness, headaches, breathlessness, weakness and a tightening of the lungs and airways.

These symptoms can be upsetting and scary, but remember there is probably nothing wrong other than the intense grief. If you're concerned about anything, speak to your doctor.

Talk about your feelings

During the grieving process, many people find it difficult to speak to others about how they feel. This can lead to physical and emotional isolation, which can make you feel worse. Talking to someone, whether it's a friend, relative or even a doctor, can be helpful. Lots of people find that their mood lifts after ‘offloading’ some problems to a listener.

Life after being a carer

When the person you've been caring for dies, there is support available to you. In this video, former carers discuss how they coped with their grief and found a new purpose in life.

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Comments are personal views. Any information they give has not been checked and may not be accurate.

tb76 said on 01 April 2024

A doctor then asked if he could give her a shot of morphine to make her more comfortable. She wasn't in any pain and we declined. The staff gave the impression they couldn't understand why we wanted her to ive, why we were concerned about her and questioning their methods or lack of, and since she died no support has been offered at all.
I find the NHS to be severely lacking in compassion and competence.

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tb76 said on 01 April 2024

Bereavement support is not being routinely offered at all. My mum cared from my gran for 2 years after her doctor overdosed on her morphine, from which she never recovered. GPs were all useless, we changed GP many times to try to find appropriate care, concluding there just isn't any.
The GP was called to see my gran, and he said she had a cold. Another GP from the surgery saw her two days later and said she had pneumonia and should be admitted to hospital. She had emphysema (never diagnosed despite numerous visits to medical staff) with a chest infecion on top and died 10 days later.
The docotrs in the hospital were equally unhelpful/caring. They called us in unepectedly and we expected bad news, they didn't give us any, saying they believed she would pull through. But they did ask for our thoughts on resuscitation which didn't seem to fit with the view she would pull through. We said we needed more time to think about that and they said that was fine.
Doctors who saw my gran when we weren't there gave her the impression there was no hope, but when we asked they did not make any such assertion. A chat with one doctor revealed that they had put a do not resuscitate sheet in her file, despite us not providing an answer. When we challenged this, thye said my gran had given consent. We asked her about it and she didn't know what they were talking about. She didn't believe she was dying. They continued to assert their belief she would pull through. Doctors stopped visiting her after this time and we had to insist her treatment was continued, remaining with her almost always.
Nurses informed us they weren't giving her antibiotics as she couldn't swallow, this was a complete fallacy, she could swallow and was still eating, even though they also told us she could no longer eat. When we were with her she ate some of what we gave her.

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Thea1 said on 08 December 2024

There are a couple of support organisations for people who have lost their partner:
www.nawidows.org.uk
www.wayfoundation.org.uk (for the under 50s)

I'd recommend you ask your GP what counselling services are available, but also the hospital/hospice who may offer you some extra support, and if you work, your employer may have an employee assistance scheme offering help. Don't wait to be offered it, ask!

Just one correction on the content, Cruse do not operate across the whole of England, so you may have to look to other organisations for help.

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Lee66 said on 20 April 2024

I lost my mum in January this year. We were exceptionally close because I had always lived with her. We were only separated when she or I took a holiday.She was my best friend , partner and mum and the person who was always on my side. We would chat for hours about everything and now I feel completley lost. I am seeing a counsellor but I feel it would help if I could talk to people who are going through the same experience maybe a support group. Initially friends and family are sympathetic but you are expected to get on with it after a couple of months.

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Janet70 said on 17 April 2024

I looked after my husband for 38 years, my NHS records show that I was a carer and my GP came to his funeral yet no one (contrary to this video( has ever called on me or offered me support. since his death.
I found the video by accident and it is really helpful to know that other people feel the same way, but I am having to find help on my own and there are presumbaly lots of others who are doing the same.
Many of us who become carers 'by accident' don't see it as such, nor do we feel that we have to 'sacrifice ourselves' for our partner as some people seem to think! We are doing what we want to do, which is to be togther.
Maybe NHS records ought to show on the actual patient's form that they have a carer so that when they die help automatically swing into place.

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Last reviewed: 10/10/2024

Next review due: 10/10/2024

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