Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
I am 55 and have four children aged 17,18, 23 and 24. I've been a single mum for 17 years after their father left me when our youngest was born. I was diagnosed with stage 4 [advanced] bowel cancer three years ago, after being misdiagnosed for 18 months. This has now spread to my lungs, lymph nodes and brain. I guess I am lucky to still be here. I am so scared that I will leave my children with terrible memories of my death that will scar them and destroy their youthful, carefree innocence. We have sorted every practicality that can be sorted, just not these awful last few weeks as they are not sortable. If anyone has any advice to help me help them watch their mum die I would be very grateful.
G writes: However it happens, death never leaves enough time. All we can do is our best - and that's what you seem to be doing. You are being amazingly strong in addressing these fears. I can't imagine how hard it must be for you to have to think about not being around for your children in their future, but you need to remember all the positive things you have given them - as they will after you have died. I'm sure you are also telling your children you love them, you think they're the best thing ever and you are proud of them. Let them say the same back to you. Don't be afraid to cry with them.
You say 'I am so scared that I will leave my children with terrible memories of my death that will scar them.' What I think will distress your children more than anything is to see you in pain, physical or emotional. They will want to know you haven't put your wellbeing, at this critical time, behind theirs. While my mum was dying a couple of years ago all I really needed was to know she wasn't in pain or lonely, and that she was cared for with kindness and dignity.
Therefore it's really important to have the practicalities about you sorted out - such as nursing care, pain relief, will you die at home (with support) or in a hospice; who will see to all the everyday things like getting your medication, shopping, meals - rather than practicalities about what your children should do in their lives when you are no longer here. Your local hospice team and/or Macmillan nurses are usually brilliant with this. They're also amazing at dealing with things like pain relief - much better, in my experience, than GPs. They give you space and time to talk about these sorts of fears, and they will support your children after you have died - my mum's hospice still, two years after she died (and I'm 58), drop me the occasional email, having offered lots of immediate support when she died. So if you haven't already done so, please contact these.
Worry about you, get all those things sorted - and that will help your children. Nothing you can do will prevent them missing you, feeling sad, being angry. But they can be left feeling that you died easily and comfortably. I hope your journeys, together and separately, are peaceful and loving.
K writes: I was 22 when my mum died, my sister was 17 and my brother was 24. I'm now a 40-year-old mum of two.
The medical stuff will fade but I encourage you to have favourite photos framed for each child: they will be better memories to savour. I have no pictures of mum ill, just of happy times like holidays. Also, I suggest you write each child simple advice on relationships, marriage, parenthood - all the key things life chucks at you and that you really want a mum's wisdom about. Also, perhaps write a few key birthday cards for 21st or 30th birthdays, or even weddings. They will treasure these.
Discuss their plans and encourage them, however hard it feels. My mum saw me graduate in her wheelchair and told me how proud I'd made her. Her words inspired me to get a Masters degree and I am about to start my Doctorate, while my sister is doing her Masters. Mum's words have pushed us down the years.
Plan your funeral with them if you can so there are no surprises. Hug them lots too, it's what I miss the most, and tell them you love them. Your kids will never forget you and, as me and my sister say, better a brilliant mum for a short time than a rubbish mum for life. If your kids inherit your courage and strength they will be blessed.
E writes: You might like to let them know that, when the time comes, it's ok for them not to be with you 24/7 (if that's how you feel). My dad is dying now aged 58 and I feel able to leave his side. Let them know that you know they love you and they don't have to sit it out with you.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66