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Find bereavement help and support from other Mumsnetters.

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Find bereavement help and support from other Mumsnetters.

Bereavement

My Dad is 64, has days to live and I'm falling apart.

172 replies

StarlightMcKenzie · 24/03/2011 17:08

That's it really. I just can't believe the last 7 weeks. On recommendation of a physchiatrist he had been referred to for moderate depressoin, he had a brain scan and was was diagnosed with a mass in his brain 6cm by 8cm which through brain surgery at the National Neurological Hospital they managed to removed completely.

I had a reaction 5 days after the operation and we nearly lost him.

Just over week ago he was declared completely cured and plans were made for him to go home with a scan every year for 5 years. They just wanted to check out a dodgy blood test.

The blood test triggered a scan of his kidneys where they found he had a tumour 10cm. This, apparantly wasn't too concerning and he was packed off to the Royal Free for treatment.

2 days later we were told that he had had a scan that had shown the kidney was treatable but the damage that it, and the two brain operations plus drugs etc. had done to his liver was untreatable. He was diagnosed with an extremely agressive cancer too advanced to treat and given just days to live.

I just cannot believe what he has been through. He's barely able to communicate with us now he is so ill as his liver is so enlarged it is making its own toxins which are killing him.

I'm so gutted. He isn't even retirement age. I just don't know what to say to my mum.

OP posts:

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georgie22 · 26/03/2011 23:41

Really sorry to hear what you're going through - life can be so unfair at times and often there is jst no explanation for why these things happen. I'm so sorry your mom had to go through that experience at the hospital - it sounds awful.

I'm a palliative care nurse specialist so I hate to hear of people's less than ideal experiences of Macmillan nurses, especially as we are frequently called that. I'm based at a hospice and work in the community and can honestly assure people that we go out of our way to ensure that we facilitate the wishes of our patients wherever and whenever possible. I have never lost sight of the fact that I am a guest in that person's home and respect people's wishes. I'm glad you're happy with your dad's hospice care - it is so different from most NHS settings.

If I can be of any help feel free to PM me. It sounds like your dad is lucky to have his family fighting his corner. Sending you my thoughts tonight.

FourFortyFour · 27/03/2011 10:41

I am so sorry for all you are going through.

My Nana was in hospital with cancer and they messed about with moving her. When she finally got to the hospice they were lovely. When she died they rang to tell me and were very kind to me (heavily pregnant) and my Nana. When I can afford it I want to send them some money, I am sure they could always use donations.

MollieO · 27/03/2011 11:10

My dad's cancer spread from his kidney too. 12 yrs before he died he was diagnosed with kidney cancer - only because a junior GP decided to dontests that our family GP said she wouldn't have done. He had his kidney removed and was given the all clear. From what I understand it can be quite hard to ensure you've got rid of all the cancer so his consultant wasn't that surprised it had come back. We were completely devastated of course. Part of me thought that if he had fought it before he could fight it again but being that bit older it wasn't to be. When he died I was actually glad. He had deteriorated so much that we were grieving whilst he was still alive. His illness changed him so much that it took me several years to recover my memories of how he used to be when he was well.

It is such a horrible thing to go through but you need to be strong for your mum. I found I had some truly lovely friends who supported me and enabled me to cope and provide support to my mum. I didn't have Ds then so it was easier, although it is a source of much sadness to me that my dad died 7 years before I had Ds.

StarlightMcKenzie · 27/03/2011 14:55

Thank you georgie. I really don't want people to be worried that care in the last days is something you have to fight for. But in our case, we did and so people do need to be prepared that it isn't automatically given.

I suspect hospice services will be something that is cut more and more and voluntary and charity support will be expected to take over.

Even if staff in general are great, just one person getting things very very wrong can impact on your whole perception and stress levels. My dad spent one night at the Royal Free, covered in blood from a nose bleed that they didn't clean up. He pressed his bell which rang for 15 minutes and when the nurse eventually came she told him she'd clean it up in the morning as she didn't want to disturb him. Obviously he was disturbed by the blood enough to ring the bell, and then disturbed for 15 mins while waiting etc etc. It's a little thing, and if it wasn't one of his final days then probably not such a big deal, but it was sad for him and us that the nurse at that time, had that attitude.

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PussinJimmyChoos · 27/03/2011 15:03

Starlight - we had similar experience with my Granddad when he was in hospital when the cancer had spread to his bones. He was in pain and wanted a pain killer and we kept asking for one and they were taking ages - in the end my mum stormed down to one of the nurses and asked again and he curtly replied there are other sick people here as well you know

My mum really really had to hold back her tongue but she did because we didn't want them behaving badly towards him when we had left after visiting hours. Yes there are great nurses around blah blah but there are some that really don't seem to give a toss and we saw evidence of this.

When he first had prostate cancer (before it spread to his bones) he caught c diff when he was in hospital. We went in and found his bedpan hadn't been emptied and he was distressed. I looked at the cleaning rota and saw it hadn't been filled in for that day. I ripped it off the door and marched down to the nurses station with it and queried why as he had c diff, hygiene is paramount etc. They started moaning that it wasn't their job and I said stopping the spread of germs is part of nursing and tore them off a strip - the next day he rang Gran up to say the cleaning lady was being very thorough with his room.

I sometimes think that if you haven't got family being an advocate for the patient in hospital, the elderly can really fall through the net

magicOC · 27/03/2011 16:10

Starlight so sorry yo and your family are going thru this. Cancer is such a b disease. I lost my own dad to the same thung 5yrs ago. I'm pleased you finally managed to get him to a hospice, the dedication and care from the staff in those places are second to none. I've had to see the loss of 2 close relatives in a hospice sadly, but, the lasting memories i was able to leave with were happy ones (not the loss itself) knowing that my loved ones had peace in thier final days. Pls try not to let the bad experience mar your final precious last dys with your dad. Treasure those moments to create some final lovng memories that will stay with you forever. Later on write letters to those involved telling of your anger, but, for now I wish you and your family live and peace to get thru this difficult time. X

magicOC · 27/03/2011 16:11

*love and peace

OMaLittle · 28/03/2011 11:53

Oh Starlight. I remember you well from my DD2 birth thread, in much happier days. We lost my darling Dad (see Other Lives in the Guardian today) last Monday, 17 days after a botched hernia op. He was 63 - so fit, so healthy, always looked after himself impeccably. He was admitted to hospital twice in the interim and discharged on Friday 18th, being told he couldn't see his X-rays (he was a GP) and that he had constipation and needed to do lots of exercise. By Sunday he was in septic shock and too ill to recover. I need to separate the anger from the grief at the moment, though I suppose our situations are different in that there are still things you can do to make your Dad more comfortable. It is so very horrible and I'm really thinking of you. Treasure the time you have left with him if you can. I can't help at all, and I hope I'm not hijacking, but the love of my family and all my friends is the only thing making life seem remotely bearable at the moment.

It's so so shit :(

StarlightMcKenzie · 28/03/2011 16:56

My Dad passed away at 3:10am this morning. My mum, my brother and me were with him.

We were drinking an 11yr old bottle of red that my dad had bought my mum for a special ocassion. He just sipped into unconsciousness but was able to pucker his lips to kiss me when I arrived at 11pm with the bottle. We told him what we were doing and chatted to each other and him.

It was lovely, but my God does it hurt now!

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StarlightMcKenzie · 28/03/2011 16:58

OM So sorry to hear of your sad new too. It sounds absolutely dreadful for you.

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Bucharest · 28/03/2011 17:01

Sorry Starlight.
Take care of yourself xx

Sexonlegs · 28/03/2011 17:05

Oh Starlight, I am so sorry to hear you darling Dad has gone :( Your evening sounded just lovely.

I wish you love and strength.

BerryLellow · 28/03/2011 17:07

Really sorry to hear of his passing, but wonderful that you made it so much easier for him.

Wishing you peace and strength for the time ahead.

noddyholder · 28/03/2011 17:07

Thinking of you starlight x

LizaTarbucksAuntie · 28/03/2011 17:09

Oh Starlight, I'm so sorry.

What a lovely thing for you all to have done together.

Take care of yourselves, you'll all be in my prayers.

Ormirian · 28/03/2011 17:09

Oh star, oh poor love

So sorry.

Wishing all your family strength and peace in this hard time.

StarlightMcKenzie · 28/03/2011 17:15

slip, not sip. Honestly, we didn't try and get wine down him.

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Buda · 28/03/2011 17:16

Oh starlight. I am sorry.

We are never ready for our parents to go.

FourFortyFour · 28/03/2011 17:17

I am so sorry you have lost your father. I can't imagine what you must feel like. I am glad it was peaceful and you were all with him. Take care.

Buda · 28/03/2011 17:17

Oh dear. I am giggling. Sorry. Maybe you should have! He would have enjoyed it I am sure.

ilovemydogandMrObama · 28/03/2011 17:20

So sorry. From your description, he sounded like a man full of dignity, and I'm sure he would have been appreciated you all sharing a good bottle of red...

That's the way I want to go.... room of family, bottle of wine...

LoveBeingKnockedUp · 28/03/2011 17:34

Starlight I am so sorry but also glad you were able to be there x

Al1son · 28/03/2011 17:55

I'm sorry to hear the news but pleased that he managed to have time in a lovely place and his final hours were spent peacefully with dignity and with his family around him.

BecauseImWorthIt · 28/03/2011 17:57

So sorry, Starlight - but lovely, in its own way, that you were able to be with him and to celebrate his life in that way.

madmouse · 28/03/2011 18:03

Thinking of you Starlight - be kind to yourself - it will hurt for some time to come, but you've given him a good death so take a bit of comfort from that xx

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