It’s been almost a month now since our daughter Nikki closed her eyes for the final time. She was 38yrs and had been considered end of life for three weeks before she passed. Three hospital admissions this year , each one worse than the last. Everything going wrong , test results de ranged badly. Nikki being tube fed but still trying to smile. She had been tachycardic with low oxygen twice before but hospital intervention with fluids and antibiotics had calmed her pneumonia down. But finally we were told early April nothing else could be done , she was coming home until she died. I suppose neither of us really believed it as she seemed fairly ok and was still able to eat. They said we would have a fortnight but Nikki gave us three weeks and it was clear in the final days she was fading away. She had to have the morphine drivers put in but died the following day Sunday 26 April ‘26. I was with her , dad was there straightaway , she left as she lived , peacefully no fuss. I was glad it was like that because more suffering would have broken me in two. She was cremated a fortnight later , her blue Ellie is hugging her casket in her bedroom. Now I’m trying to survive the night times. Trying to cope with the pain in my chest , the longing which is breaking my heart , but most of all I miss the hands on of looking after her. The personal care , the feeding , brushing her beautiful long hair. Saying ‘ hello baba’ when I walked in to her room . Her smile and laughter in reply. How am I going to live without her. That’s my problem at the moment. I don’t want to be here. I miss her so terribly.
Hello @JuliaDaws54,
I can see that you’re new to the community. I hope you find it to be a support to you, but I am so sorry for the loss of your daughter Nikki that brings you here. It sounds like you shared many special moments with her.
I can imagine how heartbroken and overwhelmed you must be feeling. I’m sure many others on here who have lost a child will be able to relate, whether their loss was recent like yours or a long time ago. I wanted to share some sources of support that might help you right now.
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Child Bereavement UK support families with the loss of a child. They also support bereaved children. You can call their helpline on 0800 02 888 40.
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The Compassionate Friends support families who have lost a child of any age. They have a grief companion scheme where you can get 1-1 support from another bereaved parent. You can call them on 0345 123 2304.
Sue Ryder also has some resources which can help you navigate your grief.
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Our Grief Guide self-help platform which has information, resources and advice to help you through your grief
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Our Bereavement Information pages which can walk you through what you are going through.
Thank you again for sharing this with our community - please keep posting if it helps. Remember that you’re not alone in dealing with this.
Take care 
Harriet
Thank you very much.
I’m so sorry for the loss of your beautiful daughter and understand how you are feeling at this time. My son was severely disabled and We cared for him for 41 years until he passed away four years ago. I didn’t think I could carry on without him as he had been such a big part of my life. Like you I had done all of his care. I couldn’t face each day not seeing his beautiful smile when I went in his room first thing in the morning. I didn’t want to do anything and didn’t want to go out and have to come home to him not being there, I really didn’t think I would survive, but I have. The pain never goes away, but things do get easier and somehow eventually you manage to live alongside your grief without it overwhelming you. I started to spend time in the garden and eventually joined a couple of local groups and made new friends. My life is different now but I would give anything to have my old life with my son back.
I had started to feel much better but then had a set back at the end of last year when my other son had a massive brain tumour. This was successfully removed and he has made a good recovery but I became so anxious that I was going to loose him also. I’ m trying to get on with life again but it’s hard. I want to put my arms around him and hold onto him and not let him go.
I understand how you are feeling as when you have been a carer as well as a parent it just leaves such a gap in your life and you miss all the things you did for your loved one. I know there is nothing I can say at this time to make you feel any better, just take each day at a time and just do what you feel you can do. Take care of yourself, something you probably haven’t done for some time and things will eventually start to feel a little better.
Your reply has brought tears as I expected it would. But not tests of grief , relief in knowing someone else knows exactly how I feel. I’m so so sorry about your other son’s brain tumour and relieved it was treated successfully. However , it put you back in to square one for a while.
Everything you say resonates with me , I wish I could hug you tight , so I’m sending you a virtual huggle instead. That’s what we called the squeezey hugs we gave Nikki. Add sloppy kisses and she was in hysterics. I can hear her now in my minds eye.
Well , the care company commissioned to support us end of life , rang me last Wednesday and offered me part time nursing work. Their carers had told them they thought dad and I were brilliant carers , so I’m now working 12 hours a week locally supporting a lovely lady in her own home. She needs skilled feeding and when I fed lunch last Friday it was like feeding my Nikki all over again. Somebody up there is certainly watching over us.
Small steps forward , I’ve had a bad night , but I’m at work shortly , so I can focus on something else for the afternoon.
I’m sending my very very best wishes and thoughts.
Julie x