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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 should be 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

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.

Bereavement: 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.

Media last reviewed: 14/12/2012

Next review due: 14/12/2014

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Comments

The 10 comments posted are personal views. Any information they give has not been checked and may not be accurate.

rfarah123 said on 07 February 2014

End of life care shocking. Lost my father recently due to Bronchiectasis with pneumonia. He was only 68. Ward staff couldn't care less. They stopped feeding him, his lips were dry and his back was hurting from sitting upright for 4 days. On the 3rd day I saw him his oxygen mask had fell off, he had been sick on himself and the alarm was ringing, not a sign of a nurse around- their excuse- short staffed and busy. He fought on and had a chance of surviving as intravenous antibiotics were working but their care was disgusting and the way he died will haunt me forever. My grandparents died the same way in the same hospital. I have been offered no help and I'm not coping.

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rfarah123 said on 07 February 2014

I feel the same. My father had a chest condition, Bronchiectasis, and was taken into hospital for the fourth time in 4 months on 24th Jan this year. He had pneumonia but was fighting it with all his might. Consultant said in front of my father that with his condition it would be best to let him go peacefully rather than resuscitate as there was no hope. He was 68! I was distraught. The hospital said they would treat him with intravenous antibiotics but if they didn't work then nothing! He was put on a ward and rapidly deteriorated, the hospital didn't feed him, he told me he had asked for a cup of tea for 5 hours to no avail, his lips were dry his back was hurting from sitting upright for 4 days and on the 3rd day when I turned up he had been sick on himself, his oxygen mask had come off and the alarm was ringing, not a sign of a nurse around. Their excuse- short staffed and very busy. The lack of care in end of life care is disgusting and the way may father died will haunt me forever. I was offered no help at all and am struggling to cope. I thought end of life care was expert and that the patient was treated with uppermost respect and made comfortable- this is not the case as I have since heard it is exactly the was my grandparents passed away in the same hospital!

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atilla the hun said on 25 July 2013

Seconds out, round 2.
I cared for my mother for 15 months from Jan.2012, till April 2013. She passed away peacefully at the local hospital. Cause of death, Bronchil pneumonia and old age.
I hated looking after her. Mother and Son, on their own, no help from the rest of the family because they lived too far away and she wasn`t going into a residential home. The worst job in the world for a mechanic!! Having to be `Intimate` with my own Mum drove me insane with the feeling of shame. Yes, I gave my mum all the courtesys and dignity but she knew that it was a drain on my metal capacity and understood. It`s that mother and son thing! Even though I have 2 sisters, She appreciated what I was doing for her and I always gave her my friendly face.
The video clip is absolutely on the button.
I can still smell my mother even though she`s been gone for a couple of months. I`m on my own in an empty house. The Demons arrived after the funeral. I drink! I cry! I punch the walls and scream pophanity ! I never wanted to be the `Good man who looked after his dear old mum`, I was Lumbered by loyalty.
Thank you NHS, That includes everybody in the NHS! Thanks to the adult services who arranged her homecare. Thanks to the carers who kept me sane (almost). You were brilliant. Thanks for looking after my mum and giving her the dignity and the respect she deserved.
Me? well I`m a survivor and the `Scum` always rises to the surface!
Fortunately I met someone who`s in the caring profession and we have a relationship blossoming. I`m not out of the woods yet . Anybody else, get help quickly!!
I cannot thank those involved with my mums care enough. Your were fantastic!
Thank you very very much.

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atilla the hun said on 25 July 2013

I got timed out so my comment was lost forever. Just 1 more stress problem to wind me up.

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diddybone said on 19 March 2012

My mother died recently and I was her carer and enjoyed it. She had a fear of doctors and hospitals. She fractured her hip in 2005 and waited 4 days for an operation because it was cancelled and when she got it she also got c.diff. She never quite recovered and a year later couldn't move. I called 999 and was told that as she was breathing it wasn't an emergency.
She was sent for rehabilitation, but three weeks later they realised she had had a stroke but it was too late to do anything.
In 2009 she again became ill and i called 999 and was told again that as she was breathing it wasn't an emergency and call doctor in the morning. By then it was an emergency and i was told she had sepsis and an hour to live. She recovered but had bullous pemphigoid, shingles and disphagia. Recently she became ill again and I was told she was end stageand there were, places she could go, and the doctor didn't believe she cared where she was.(Idisagreed) She was rushed to hospital with aspiration Pneumonia and we were told it was cruel and selfish of us to keep her going and we should let her go. This spoken over her bed along with the signs of dying to look out for. She struggled for survival but had to give upo because we had. The thought that she realised we hadefectively put her down will haunt me forever. I've not had any help whatsover and am losing my home as well as my mind!

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tb76 said on 01 April 2010

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 2010

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 2009

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 2009

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 2009

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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Page last reviewed: 10/10/2011

Next review due: 10/10/2013

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