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29-06-2016, 14:55   #46
Powerfairy
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OP im so so sorry to read your post.

I really feel for you and your family, I’ve been there my mum was diagnosed with Pancreatic Cancer at aged 58, she passed away 18 weeks later - it’s a horrible and a particularly cruel cancer IMO. All I can say is spend as much time with your dad as you can, look after Yousef and worry about everything else after its all over – you’ll never get this time back again XX

Just on your dad's care – we were very lucky as we were able to care for my mum at home until she passed away – just so you know OP you are entitled to 10 days of full nursing care (without charge) though the Irish cancer society – this will be arranged to palliative care but if you need it insist on it. We had it for my mum and it meant the world. The nurse were amazing and so kind – I didn’t think the same of the HSE palliative care nurse if im brutally honest.

My husband’s dad passed away at home too from cancer and didn’t have a nurse present it was very distressing for the family. So insist on the Irish cancer society nurses.

If you have any pancreatic cancer questions… just let me know – its spread to my mums liver too OP.. it really is a dreadful cancer im afraid.

Take care and try and be strong XX
Thank you so much for this information it means the world. Did you contact the Irish cancer society directly for these 10 days? So so sorry about your mam, so young to be taken at 58. You are right it is so distressing on the family, I dread Monday to Thursdays as I am stuck in Dublin at work but unable to work & wondering if all is ok at home,

Thanks for the message, cannot tell you how grateful I am. I am going to contact the Irish Cancer society now, I never realised these resources were available.
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29-06-2016, 14:55   #47
Cornelius Crow
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OP im so so sorry to read your post.

I really feel for you and your family, I’ve been there my mum was diagnosed with Pancreatic Cancer at aged 58, she passed away 18 weeks later - it’s a horrible and a particularly cruel cancer IMO. All I can say is spend as much time with your dad as you can, look after Yousef and worry about everything else after its all over – you’ll never get this time back again XX

Just on your dad's care – we were very lucky as we were able to care for my mum at home until she passed away – just so you know OP you are entitled to 10 days of full nursing care (without charge) though the Irish cancer society – this will be arranged to palliative care but if you need it insist on it. We had it for my mum and it meant the world. The nurse were amazing and so kind – I didn’t think the same of the HSE palliative care nurse if im brutally honest.

My husband’s dad passed away at home too from cancer and didn’t have a nurse present it was very distressing for the family. So insist on the Irish cancer society nurses.

If you have any pancreatic cancer questions… just let me know – its spread to my mums liver too OP.. it really is a dreadful cancer im afraid.

Take care and try and be strong XX
Just to clarify re: this point. You're entitled to 10 nights, ie 8 hour shifts. Whatever nursing care that is needed in that time will be provided but my concern re: the phrasing above is that it may give you the impression that you would have a nurse 24/7 for 10 days. Your public health nurse should be involved too though, and they can provide assistance and support with hands-on care.

I'm so sorry to read your story and I hope you're doing okay xx

EDITED TO ADD: it might be best to talk to the visiting palliative care nurse about when is best to request a night nurse, they will be experienced in identifying the appropriate time
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29-06-2016, 15:06   #48
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Thank you so much for this information it means the world. Did you contact the Irish cancer society directly for these 10 days? So so sorry about your mam, so young to be taken at 58. You are right it is so distressing on the family, I dread Monday to Thursdays as I am stuck in Dublin at work but unable to work & wondering if all is ok at home,

Thanks for the message, cannot tell you how grateful I am. I am going to contact the Irish Cancer society now, I never realised these resources were available.

In our case the palliative care team made contact with the Irish cancer society on our behalf... they were amazing  the nurses came for 10 days and nights full care and I did ask what happens if we did need the care longer and the nurse said it would be catered for XX

Best of luck – be firm with the palliative care HSE nurses I didn’t find them great at all (Kildare) .. as I mentioned my husbands didn’t get any help…nor did they insist….. it was very distressing for them and his dad on the night he passed away without any support.

The only bit of advice I would give is talk to your dad – my mum was in such shock after only living for 19 weeks we never actually discussed her dying (nor did she want to).. while I was by her side 24/7 during those weeks, and I did tell her how much I loved her.. I didn’t say many other things for fear of upsetting her.. (not in a bad way) I will never get that time back, if I could go back I’d say a lot more XX

Best of Luck OP
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29-06-2016, 15:10   #49
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Just to clarify re: this point. You're entitled to 10 nights, ie 8 hour shifts. Whatever nursing care that is needed in that time will be provided but my concern re: the phrasing above is that it may give you the impression that you would have a nurse 24/7 for 10 days. Your public health nurse should be involved too though, and they can provide assistance and support with hands-on care.

I'm so sorry to read your story and I hope you're doing okay xx

EDITED TO ADD: it might be best to talk to the visiting palliative care nurse about when is best to request a night nurse, they will be experienced in identifying the appropriate time
we were given 24 hour care for the 10 nights... my mum was on a morphine pump, she had lost her swallow function.. so all medication (a combination of 20 tablets) HAD to be given via the pump - so nursing 24 hour nursing was required for that reason.

Plus there was only my sister and i caring for my mum (my dad had a major stroke many years ago)... so it is all dependant... and many cases justify 24 hour care.

You mentioned public health nurse - ? they called twice a week for 30 mins... useless IMO
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29-06-2016, 15:18   #50
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we were given 24 hour care for the 10 nights... my mum was on a morphine pump, she had lost her swallow function.. so all medication (a combination of 20 tablets) HAD to be given via the pump - so nursing 24 hour nursing was required for that reason.

Plus there was only my sister and i caring for my mum (my dad had a major stroke many years ago)... so it is all dependant... and many cases justify 24 hour care.

You mentioned public health nurse - ? they called twice a week for 30 mins... useless IMO
In my experience I haven't ever encountered a scenario where the ICS were in a position to provide 24/7 care, nor am I aware of them offering it as a matter of usual course. I'm not saying I don't believe you- yours must have been extenuating circumstances, I'm just advising caution to the OP against getting her hopes up for a service that in all likelihood isn't readily available.

Public Health Nurses are at the pin of their collars, just like all the other health services. Some are amazing, some aren't, some have time to give and go the extra mile, others don't. I would definitely recommend at least getting in touch with them if they're not already visiting your home OP. With any luck they'll be a good support for you all right now and not to mention in the future when your Mum will need ongoing support.
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29-06-2016, 15:27   #51
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Powerfairy I have just come through a set of professional accountancy exams, and they absolutely consumed my life. I cannot imagine how you could contemplate them in your current position. You need to unload some of the stress from yourself, and they are the easiest to move. The needs of your family are greatest at the moment, exams and qualifications can be dealt with in the future.

I too have an extremely close relationship with my father, and somewhat fraught one with my mother, so putting myself in your situation and trying to function with exams is not possible. Do yourself a favour and postpone them. It will be one less thing in your head, and every little bit of relief you can get will give you more time with your Dad.

Take care x
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29-06-2016, 23:06   #52
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I'm so sorry to hear you are going through the same, my thoughts and prayers are with you, can I ask you do you find yourself unable to focus in work / college etc? I cannot get focused anymore and I am wondering is it depression,

I know what you mean about unable to remember what it was like before your dad was sick, I still have the memories of him being well but god it feels like a distant memory, I would literally do anything to go back 3 years, and tell him to go to a doctor sooner, (he got sick 2 years ago)

Thinking of you. x
Ya for sure, I lose focus all the time. It's constantly in the back of my mind no matter what is happening in work but I think it's only natural for it to consume your mind considering how horrible it all is. Normally I'm a very sociable guy, always up for a laugh or a joke but I can't do that now without nearly having to pretend to have fun, all the worry and hurt just isolates you. But I think all these feelings are natural and it helps to talk. On the odd night out with my friends I've started to feel bad for enjoying myself, and jealous of everyone with healthy happy families. I know the reality is often different and you can't judge a book etc. but it just goes to show how much of your mind it takes up.

What you're feeling is normal though, devastating but normal. It helps to have someone to talk to and to confide with and I'm happy to hear you have someone like that. At least we still have brilliant memories to look back on, it might make it more difficult now but it's more than a lot of people get. I'll keep you, your dad and your family in my thoughts I really do wish you some sort of comfort and the very best in your exams whenever you sit them.
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07-07-2016, 20:53   #53
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Hi Powerfairy, apologies for my late contribution, I have not been about here lately. Many campaigned long and hard to get this forum up and running, your heartbreaking situation is justification for its existence now. I'm impressed, but not surprised by the kind & helpful replies you have received from the good folk on here. I smiled and almost shed a tear at your "poor me " thought in your 2nd post, you are a hell of a lot stronger lady than you give yourself credit for, having to deal with so much at one time. You haven't posted recently, however the situation has developed, I hope you are coping there and I'm sure many have already told you on here, but don't be afraid to rely on the good boardsies for any support or words we can offer. Take care of yourself, hugs.
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11-07-2016, 12:09   #54
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My dad passed away on Saturday night peacefully, he Is out of pain. Thank you everyone for comments and advice.
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11-07-2016, 12:49   #55
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My dad passed away on Saturday night peacefully, he Is out of pain. Thank you everyone for comments and advice.
Sincere condolences Powerfairy.

I hope the happy memories far outweigh your sense of loss. I'm glad for you that he didn't suffer for too long.
Look after yourself and those close to you in the coming days and weeks.

I think this thread could stay open and it might give you some support during that time.
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11-07-2016, 12:57   #56
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My dad passed away on Saturday night peacefully, he Is out of pain. Thank you everyone for comments and advice.
Sorry for your loss, I know you will still be in a state of shock for a while, but don't be afraid to cry, confide in family and friends, and seek counselling in the future if you think you need it.

You will learn to cope with your loss, but it takes a different length of time for each individual. I lost my father in circumstances I didn't think I would ever learn to live with, but now years later, everytime I think of him I smile and remember only good things as opposed to bad things and pain.

Take care of yourself.
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11-07-2016, 13:06   #57
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So sorry to hear that Powerfairy . As said above take care of yourself and feel free to use here for support/chat or to just vent anything that's on your mind. Time will bring peace and comfort .
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11-07-2016, 13:09   #58
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Powerfairy, I am so sorry for your huge loss, it must be conforting to know he was not in pain. Mind yourself and be good to yourself. Xx
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11-07-2016, 13:28   #59
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Sorry for your loss, Powerfairy. Take comfort in the fact you had such a loving and close relationship, and that he will always live on through you. Take care.
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11-07-2016, 13:56   #60
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My dad passed away on Saturday night peacefully, he Is out of pain. Thank you everyone for comments and advice.

Thinking of you and your family. Be kind to yourself x x
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