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Re: New Member......so glad I found this forum

Postby Dandygal76 » Fri Jun 10, 2016 7:45 am

Hi Ali. I have not been through this but I send you my love for what you are going through. Children are very resilient, my child is a similar age and understanding and trust me on the one thing I can advise upon, she will be okay. You concentrate on you and your dad and I wish your dad a pain free journey. x

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Re: New Member......so glad I found this forum

Postby sandraW » Fri Jun 10, 2016 11:23 am

Hi Sorry I cannot help with the at home problem as my husband died in the hospice, but there should be lots of help for you, I hope things go well for your lovely Dad.
As for your daughter our granddaughter was 9/10 when we lost her Granddad we explained that he would not want to stay being so poorly and she agreed, she even spoke at his funeral/ celebration of life, which was the day after her birthday which she thought was very special. She wanted to and got up with her 6 year old cousin and said the piece she had written herself about how much she loved her Granddad, the little one just said "I loved my Granddad and he used to lick me all over like an icecream" ther wasn't a dry eye in the house. She cried quite a lot for the first few months and now talks about him all the time as we all do, children are amazing. love sandra xx

PCUK Nurse Dianne
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Re: New Member......so glad I found this forum

Postby PCUK Nurse Dianne » Fri Jun 10, 2016 6:21 pm

Hi Ali,

Sorry to hear you are struggling just now. I have sent you a personal email that may have some helpful information, and of course do feel free to come back to me.

For anyone struggling with children in a similar situation there is a brilliant charity that is very helpful in dealing with bereavement in children - it is called Winston's Wish and the link to it is here: http://www.winstonswish.org.uk/.

Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Team

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Re: New Member......so glad I found this forum

Postby alimc77 » Fri Jun 10, 2016 7:27 pm

Thank you all. My daughter is very shy and sensitive and i'm worried how she will cope with this. Will read your email Diane.

Sandra we do have lots of help at home, district nurses, marie curie and macmillan. It'sonly me and my brother but fortunately he lives with my dad so there is always someone here. They think we should have him in a hospice but the nearest one is miles away and he wants to be at home. And if thats what he wants we'll do everything we can to make it happens x

Proud Wife
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Re: New Member......so glad I found this forum

Postby Proud Wife » Fri Jun 10, 2016 10:49 pm

Where there's a will there should be a way.

Stay strong xxx


Re: New Member......so glad I found this forum

Postby Fifi » Sun Jun 12, 2016 10:56 am


Sadly I understand your feelings all too well. I didn't want to lose my Dad, but I didn't want him to have any pain or discomfort. What he must have been thinking, I think was pain enough.
He coped amazingly throughout his illness.

I agree with you, this is a completely different grief. We grieve from diagnosis, we know we are going to lose them. Everything becomes more precious. We also try to he so strong for them, that we build up our pain.

Dad wanted to be at home, he never wanted to die in hospital. When we were told the chemo hadn't worked, and that he had broken bones in his spine, he was only supposed to be getting pain management. But sadly he had a severe stroke and lost all movement and speech. I worked hard to get him a bed at a local hospice, but they said Dad wouldn't stand the journey. This is my only regret, I feel I let him down.

As for the end, it is different for every individual. 5 days before Dad passed away, he started to get secretions, so obviously I knew then, he could go any moment. He never wanted to die and he held on. He was already nil by mouth because of the stroke. He was receiving fluids. I don't believe he was in any pain. My main concern was that he would get distressed. He had a syringe driver in place which had medication for the secretions, pain control and for distress. Dad was able to stay awake while I told him what was happening, and with his left arm ( the only part of he could move )he stroked my hair. I put my head on his chest, and he held my head, with some strength as well. A nurse came in and wanted to get by. Dad wouldn't let me go. That evening Dad went unconscious.
I read him the newspaper, and just talked to him about everyday things. He passed away the next morning. I know I did all I could, I just wish I could have saved him.

As for your little girl, I think Sandra's post is beautiful, and I think she is so right. Children adjust and she will probably be the one thing to get you through.

Thinking of you.

Leila xx


Re: New Member......so glad I found this forum

Postby Marmalade » Sun Jun 12, 2016 2:51 pm

Perfect Fifi, just perfect.

We are very lucky as our palliative care team provide 'hospice at home' care and so far every thing has worked well. District nurses, nurse specialists from the hospice and hospice trained carers to come in at night when needed to allow me to sleep. Hospital beds and all sorts of equipment are available and arrive usually on the day of request. I don't know if we are just lucky or if this is the case elsewhere.

Of course we don't want them to give in but sometimes love really does mean letting go...

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Re: New Member......so glad I found this forum

Postby shelda » Tue Jun 14, 2016 1:35 am

Oh Ali so sorry to hear that you are at this stage, I can't really comment from mum's experience as we were in a hospice, but when my uncle died at home from cancer the hospice at home team were amazing and in the final weeks provided a bed and nurses stayed most nights I know my aunty found them a god send. Sending you so much love as we all know to well how awful it feels, the helplessness and pain we feel seeing our loved ones suffer like this. Big cyber hugs huni xxx

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Re: New Member......so glad I found this forum

Postby alimc77 » Tue Jun 14, 2016 12:12 pm

Thank you all. I had a good talk with my little girl and she understands that grampa wont be here much longer. It was heartbreaking. I have made her a special photo album with pictures of her and grampa.

my dad is holding on at home. Between carers, nurses and me and my brother we are coping x