March 2013
So sorry for your loss Terese, I know your pain, I know the struggle of the last days/weeks. I am here for you any time you need me. I can't believe it's been 4 months since Johnny passed. It's hard still but did you want to talk to someone who truly understands how you feel, you have my number sweety.
Love and hugs,
Jan
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December 2012
Hey there,
Been very worried about you. Send me a text when you can please sweety,
Hugs,
Jan xxxx
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December 2012
Oh sweety, I know only too well how it is at that point in this horribly journey! Hang in there, just when you think the nightmare will never end, it does and it happens so quickly it takes you by surprise.
I am here if you need to talk
Hugs,
Jan
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December 2012
Don't think we can ever be prepared for losing them. I have such pain it is hard to believe it can be lived through. But I get up every morning, still here, and he's still gone......never ending, heart wrenching agony!
I'm glad your angel had his smile, that's a good thing to remember, that he's okay?
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November 2012
My darling John passed away on Saturday. I am not coping, It hurts so much I cannot breathe. How are we expected to keep going when this insidious disease takes them from us?
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November 2012
You sound like you both have a wonderful outlook Trish. I am happy to read that he is able to get out and about and enjoy life, I hope that he stays that way for a long time to come. Humour will be your savior in times to come, tell Nigel to hang onto that. Dex does have its drawbacks but Thank God for it anyway, to manage symptoms.
You will find great support here.
If there is anything that you are wondering about or just need to chat I'm here :)
Jan - wife and carer of John who passed on Sunday (GBM Grade 4)
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November 2012
John passed away this afternoon. It doesn't matter how prepared you think you are it is still a shock when it happens! I am relieve he is no longer suffering but I miss him so much already!
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November 2012
No choice is the wrong choice in my opinion. You have made your choice in love, you mum knows that, be at peace knowing she is getting the best of care. I made the decision to keep my husband at home but I can tell you that I was so very close at times to putting in a hospice. The stress of caring for your loved ones at home is extreme so please don't be hard on yourself, we all have feelings of 'am I doing the right thing?' 'could I have done something more, something different?'. You are not alone and what you are feeling is completely normal
Hugs,
Jan
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November 2012
Well John is finally nearing the end of this horrendous journey. Palliative Care have told me 'any time now' and we sit, my daughters and myself, and we watch him as his breathing pauses for long periods. We have been sitting watching for over 24 hours now. I had thought that he would have entered a coma state by now, but no, the poor man is aware of everything that is happening. He is lightly sedated but still startles and is scared and begs me to help him. Whoever said that death was a peaceful transition was a liar! I hate this suffering with a passion! I sit beside him and pray that this next breath be his last. Hopefully soon he will be at peace!
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November 2012
Yes we do all seem to be living the same nightmare, as are our loved ones! GBMs are indeed a horrible beast, they don't just take someone's life, they take all that is beautiful about them first, and they take everything that their carers have as well. I am so tired, what a cruel thing it is to have to watch your soul mate slowly die over months and months....it's been over 10 months now and John has been severely disabled for all of that time, thanks to a stroke after his surgery. A lot of people say 'let me know if you need anything' but I get they wouldn't be too keen if I asked them to help me roll John on his side so I can clean him up! They come, they visit, they coo and croon over the poor man. Stay awhile people, I'll be waking him soon to fight with him over taking his pills, letting me help him eat something, anything, or even whether or not I'm holding the urinal bottle correctly or just trying to trick him into peeing his pants! Some days I just want to scream but I'm afraid that if I do, I might never stop.
Please all of you keep in touch, maybe together we can make it through this awful journey in one piece ❤️
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