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Life-limiting illness

Handhold please

9 replies

frazzled3ds · 07/11/2017 21:57

My dear Dad is terminally ill with pancreatic cancer. He’s survived heart attacks and a quintuple heart bypass, bowel cancer, lives with prostate cancer, chronic lymphocytic leukaemia and both wet and dry AMD making it to 86. My mum suffered a sub arachnoid haemorrhage 2.5 years ago, had recovered very well but with some ‘side effects’ and is effectively at present my Dad’s carer (he is currently mobile still but clearly starting to decline - weight loss, gradual increase in pain, issues with the colostomy bag he has following colorectal surgery 2.5 years ago).

During half term I told my 3 DS that Grandpa’s illness (they knew he was poorly) wasn’t going to get better, and that over time he would become more poorly and in time would die. The eldest two were visibly upset, both crying and having cuddles with me, youngest more ‘pragmatic’, although I suspect has taken it on board and understands more than he’s letting on (his behaviour has been a bit bonkers since I told them all). We had fireworks and supper with my parents at the weekend, a lovely time and enjoyed by all.

This evening my eldest has been stroppy, stressy and the stereotypical pre-teen (he’s 12, first year in secondary) but somewhat unlike him - when he calmed down and eventually told me what was bothering him it was Grandpa.... they are close, he’s spent a lot of time with my boys, we see him every other weekend at least, and prior to his health failing more often through school holidays and after school etc.

I don’t know what I’m asking for, just needed somewhere to let out some of the sadness I guess.... the reality of it all with my Dad is beginning to hit home more for me now, and seeing my son upset and tearful too has reduced me to tears - I keep it held in most of the time. I was in two minds about telling the boys, but felt they should know before things progressed to full on palliative care.

Eurgh.... why is there no guide book for this?!

OP posts:
DrMadelineMaxwell · 07/11/2017 22:03

Hand hold offered here.
I've been through this with my Ddad who died 2 years ago today from bladder cancer. My 2 dds were very quiet and subdued, but never showed that they were upset. Didn't cry. Even on the night we told them he'd died they just nodded and then took themselves to their rooms. I found that hard to deal with to be honest.

Don't worry about being or looking upset in front of them though. It's natural and probably less scary than thinking you are hiding it from them.

There really should be a manual. What you are going through is hard .

frazzled3ds · 08/11/2017 13:39

Flowers for you, and thank you for taking the time to reply.

Just been speaking to the local ‘hospice at home’ charity who are active and supportive here - they are already involved with my Dad, though not as yet providing fully palliative care and they’ve been great, pointing me towards various resources that may help, and filling me in on what they can do to support me and the boys.

It is hard... a lot of the time it gets ‘buried’ away and life goes on, don’t think about it and all that, but every now and then reality bites, and the realisation lands of what it all means. We get offered parenting classes when pregnant, we don’t get offered classes on how to ‘parent your parents’.....

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BonApp · 08/11/2017 15:26

Sorry to see this frazzled. My dad is also terminally ill and adored by my dc (3 and 6). We haven't really told them what is going on though they know grandad is poorly and that I get upset about it every now and again. We have the added complexity of living abroad, only in Europe and a short flight, but still away.

I haven't got anything useful to add really. Just to let you know I get some of it. And totally agree with the lack of support around death. It's so so hard.

Best wishes to you and your family.

frazzled3ds · 08/11/2017 17:26

Thank you BonApp, and sorry to hear of your situation too... it is hard. It’s bad enough trying to deal with it all for myself, trying to help the children with it makes it harder still.

I hope you’re able to get some support and help too - the lady I was speaking to today recommended the Winston’s Wish charity and website as having some great resources for helping children, I’ll be having a look later on, maybe it would be a useful one for you too.

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BonApp · 08/11/2017 17:33

Thank you.

At some point we'll need to explain it I guess so thank you for the WW idea. I think it's going to be hard when we go home after my dad has gone because I'm sure my 3 year old will ask "where grandad is". Then it'll be harder again when she stops asking. I hate that she won't remember him 💔

Such a long road ahead.

MyGuideJools · 11/11/2017 19:02

💕⚘⚘for both of you.
I've been there recently but (luckily?) My DC are older. Funny how differently they all take the news tho. DS didn't really cry until the funeral.
And you are right, it is bloody hard!!

werewolfhowls · 12/11/2017 22:34

Flowers op, it's such a heartbreaking situation but you have dealt with it so well by being clear and honest. My parents are lovely but always tried to shield me from death and illness as a child and as a result I am really quite anxious about death.

All you can do is the best you can do x

MyGuideJools · 13/11/2017 08:10

werewolf same here. When I was a child and someone died we didn't speak of that person any more. We were supposedly shielded from the hurt.
My mums dad died when she was a teen and her dad was apparently never mentioned again. I find that incredibly sad. It's like the person never existed.

frazzled3ds · 13/11/2017 11:16

My DDad will certainly be mentioned, remembered and live on in memories for me and my boys, no fear of that!

It is a tough one. The boys haven’t made any mention again as yet of his illness, although at present it is still largely ‘Business as usual’ for them with him. I’ve seen him this morning though and he is looking more frail these days. In some ways I sort of wish we had a clearer idea on how long he has, in others not knowing is fine as we can just get on with things day by day, whilst appreciating them more perhaps as they’re no longer taken for granted as much.

Thank you all for your kind words, and thoughts with you too x

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