Losing a loved one, especially a carer, through bereavement is hard, with or without M.E. We look at sources of support.
Rose, who has M.E., got in touch to tell us about her Dad, who died while in hospital with appendicitis.
“I had to leave my poor Mum, who was 78 then, to get taxis there on her own,” she says. “By sheer good fortune I was just about able to get to the hospital on the day he died and talk with him and hold his hand. We didn’t know he was dying, he had internal bleeding, so it was very sudden and I had no idea that would be the last time I would see him. I wasn’t able to drive my mum back to the hospital when we heard he was dying – my then-husband stepped in.
“On one of the days I did manage to drive to hospital with my Mum, although he was very sick and weak, my Dad asked me how I was bearing up because he knew how difficult a ‘normal’ thing like managing the journey to visit him in hospital would be for me. So I am blessed with having parents who understood that I still loved them dearly even though I wasn’t physically able to support them in a way that I would have wished.
“Loss is loss and it’s something we all have to get through in our own way, I think.”
We all react differently
Paul Williams, Cruse Bereavement Care, agrees that everyone copes with grief in a very personal way. “When we are bereaved we may experience many similar reactions to other people but also it is so important to realise that we all react differently.
“The way we grieve changes over time and this is affected by many factors including our relationship with the person who has died, the way they died, other losses and stresses in our lives (including the effects of M.E./CFS) and the support we have around us.
“We need if possible to be gentle on ourselves and to believe that over time our lives will improve, even though it is often very difficult to see and feel this soon after bereavement. In the early days, for example, we may be in shock or denial and we may also be busy with making arrangements for the funeral or financial affairs.”
For Rose, it was very important that she felt she could say goodbye to her Dad properly. Too ill to attend the funeral, she waited until she was well enough to visit the cemetery.
“I dressed in the clothes I would have worn to the funeral and took the order of service with me,” she explains. “I sat in the garden of remembrance and sang the hymns and said the prayers as if I had been there on the day. Of course the tears streamed down my face, but it didn’t matter, it was just me (and my Dad).
“I would have done anything to be well enough to support my mother on the day of his funeral but I did manage to say goodbye in a different, very special way. And the one thing I know for sure is that my Dad would have understood. He was such a lovely, caring man.
“I bear the loss of my Dad wishing that I could have done more but knowing I did what I could. I have plenty of time to remember him, which I do all the time, and I plant flowers all over my garden for my Dad as he loved looking at plants with me.”
Losing a carer
When the friend or family member you have lost is also your carer, the grief can be intensified.
“Whoever our carer was they will have been in a position of trust and we would have relied on them in many ways and our world will have revolved around them to a lesser or greater extent,” explains Paul.
“As I mentioned above, one of the factors affecting the way we cope after bereavement is the relationship (good or less good) with our carer. However, it is not the only factor which affects how we cope.
“On our national helpline (see useful contacts) we have had telephone calls from people whose carer has died and they have said many different things about their different situations:
- ‘I don’t know how my wife cared for me. I was always so moody. I didn’t say thank you to her enough and I feel so guilty about that’
- ‘We had so many plans for my retirement but I became ill. I couldn’t do the things we wanted. Why did it happen to us?’
- ‘My daughter has died. She gave up her career to come and care for me.’
- ‘Wehadarowthedaymy husband died. I can never forgive myself’
- ‘I don’t know what I am going to do now. I can’t see a future’
“These examples talk of gratitude to the carer, guilt about not saying thank you enough to the carer, feeling cheated of the future, feeling guilty about having been a burden and the carer giving up so much to care and wondering how they are going to cope after the death of their carer.”
Based on experiences shared on its national helpline and when seeing bereaved people face-to-face in its branches, Cruse offers advice that has helped other people who are coping with bereavement.
“Do talk to other people about the person who has died, about your memories and your feelings,” says Paul. “Look after yourself, eat properly and try to get enough rest (even if you can’t sleep). Give yourself time and permission to grieve, and seek help and support if you feel you need it.
“Don’t be afraid to tell people what you need. Don’t isolate yourself or keep your emotions bottled up. Don’t think you are weak for needing help or feel guilty if you are struggling to cope.”
Where to turn
Charities such as Cruse have been set up specifically to assist people dealing with bereavement. Cruse offers bereavement support, help and advice via its helpline and regional centres, where you can make regular appointments with trained bereavement volunteers.
The Bereaved Parents’ Network offers support to anyone who has lost a son or daughter of any age and in any circumstance.
The WAY Foundation is a charity offering support, help and understanding for those widowed at aged 50 and under (it has a sister group, WAY UP, for those aged 51-65).
If you get on well with your GP, you could discuss your feelings with them. Or perhaps a family member or friend could offer emotional support.
If you are able to use a computer, online communities such as M.E. Friends Online at ActionforM.E. can offer a place where you can contact other people with M.E. who understand the illness and the potential effects of a life-changing event such as the death of a loved one.
Other Action for M.E. members who contacted us also told us they had difficulty coping with the practical demands that result from the loss of a loved one.
The Government produces a leaflet, What to do after a death in England and Wales, which you can pick up at Jobcentre Plus offices, Citizens Advice Bureau and most funeral homes. You can also download it.
The Citizens Advice Bureau can advise on practical matters such as housing and Cruse’s helpline has information on registering a death, arranging a funeral, what happens if there is an inquest and dealing with the estate.
Remember that it’s important, at any stage, to ask for help if you need it. “Try to be honest about how you are feeling and reach out for support,” says Paul. “There are many organisations that can help. Try not to isolate yourself. It takes time to grieve and cope. You may grieve similarly to others but you are also unique so you will be grieving in your own way and what helps you will be unique to you.”
Bereaved Parents’ Network
Tel: 029 2081 0800
Citizens Advice Bureau
Cruse Bereavement Care
Helpline: 0844 477 9400
Young persons helpline: 0808 808 1677
The WAY Foundation
Tel: 0300 012 4929
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