end stage brain tumour, anyone been there with a loved one?

[Inarush]

my fabulous dad has a couple of months to live with end stage brain tumour. It's harrowing. Please, has anyone been there with aloved one? If so, I'd love to hear from you for advice and strength. Also, anyoner who has good advice on palliative care, hospice v home, steriod management?

THanks for that.

I'm keeping everything crossed for the hospice as I think the environment and support you get makes a real difference.If we get fabulous support we could always go for the home option. We are still open minded to that extent.

Going downstairs to have a cup of tea with tea.

Feel a lot calmer.

THanks for that.

I'm keeping everything crossed for the hospice as I think the environment and support you get makes a real difference.If we get fabulous support we could always go for the home option. We are still open minded to that extent.

Going downstairs to have a cup of tea with tea.

Feel a lot calmer.

Cup of tea with dad!
Good advice BB.

Gosh. Had thought I had calmed down from GP rage and then found myself furiously hoovering.

Anyone managed to get the best out of this situation?

OJ, I've read some of your threads. i'm so sorry.Loosing your young husband in this way is tragic. I will read more.I can't imagine how I would cope with the children through this. x

you can get an oncology social worker and also a district nursing team on board these were very important in getting steves care sorted out, steve had lots of bowel problems mainly due to the meds but the DN used to come to our house and do enemas and also drain his bladder when he couldn't wee, steve had two periods in the hospice to sort out drugs and things but his wish was to die at home and a 24 hour care package was eventually put into place via the fast track system. lots of areas do the hospice at home system and also crossroads sitting service and marie curie nurses for night sitting.
it is exhausting on a hands on level and on an emotional level too, i struggled to do it all whilst also looking after 3 kids that need a lot of help.
cancer backup have a phone line and can offer information and advice for carers.
another option might be a day centre service at the hospice where your dad would have access to health care.

Our experience was the same as OJs and the main thing I think this underlines is that you cannot do this on your own. YOur GP is not a specialist and you need to insist on more help. For us the hospice was key, as OJ says to sort out the right med routine etc.

I'm so sorry you are going through this...
I'm a GP so thought I would give you my perspective in case it helps.

I do think your GP is out of line.

Your dad needs 24 hours a day access to palliative care services, in the community (they can also admit to hosipce without going through gp if need be) which your GP cannot provide. Some Gps are VERY good at managing terminal cancer patients, eg if they have a diploma or extra experience in palliative care, but usually they we take advice from the hospice. There are many things that your dad/mum will need help with though that even a pall care doctor could not do - eg social care ds 1500 etc etc

Last night your dad was in pain and needed medical treatment. I'm very very shocked that he suggested you call the samaritans. I think he is probably quite arrogant about his limits and probably talking out of his arse. Some, old fashioned, quite frankly, shit doctors think that once patients are diagnosed with end stage cancer then they shouldn't have any more medical treatment - I wonder if he is one of those. palliative acre is all about symptom relief and pain control! it may be that your family do need counselling but that should be arranged through the hospice where they are trained to deal with the issues.

you need to have a referral to the hospice (on an outpatient basis to start with, visits vy pall care eg macmillan nurse) asap

complain to the practice manager or PCT. you could try ringing the hospice directly for advice and explaining the situation.

I'm so sorry you're going through this, inarush. I hope you can sort something out soon.

Inarush, just wanted to second everything luvaduck said.

I am ashamed for your GP; one of the things we should at least know is when to seek specialist help if we do not know what to do ourselves.

Get palliative care on board, any which way you can: contact hospice directly, contact McMillan nurse directly, voluntary organisations such as Crossroads, Cancer backup etc.

I am so sorry you are all having to go through this. From a selfish point of view, I find it stangely harder to read about what is going on with your family than dealing with v similar situations in RL...

Hope tomorrow is a better day.

Thank you so much. I have read these posts many times over now and value the advice very much.

Good news since this afternoon.Marie Curie nurse arranged for tonight! She's lovely and just arrived. I think having called the emergency doc and pushing a bit did make this happen. We really value it as the nights are esp tough.

Mum is now thinking that the local cottage hospital would a great place for dad to die, they have a couple of pall beds.if she can't do home.It's about 20 min closer to home than the hospice and i think that is what mum is thinking about. I just want the best for dad and i know what wonderful places hospices are and that the whole team is set up for end of life, the spiritual side, the family's needs etc.. this has been a rocky road and i think that woukd give us strength.

I sort of feel that the GP is brain washing mum? Is it just me? I think that she is so tired that she wants to put it all in his hands. Heck.

Advice?

The hospice is about 45 min drive away,an hour in traffic. I thought mum could either be driven by me or a sib when we're around or maybe use a transport scheme or something?

She can drive ok, but I think in her shattered state she cannot contemplate the drive on a daily basis.

Do the hospice let family stay?

Glad OJ found you, she's a real sweetie and so helpful x

I use this site alot as they have target forums for the different cancers and also a chat forum when you need to chat to someone live, you can also email MM nurses.
here

Waves back at lisa.

When Steve was in the hospice the first time there was a spare bed in his room and ok could have stayed over but I didn't cos I had the kids to look after and it was school holidays, the hospice also had a seperate family room for people to sleep over, if you can get a fast track care package in place then you may get 24 hour carers which would ensure your dads safety and give your mum a break, as Steve wanted me to do personal care things the carers would ring me in the night and I got up usually twice a night, as time went on and Steve was fitted with a driver for his drugs he was more settled and he slept more, Steve got aggitated and at times aggressive mainly cos I wouldn't let him get out of bed, he didn't remember he couldn't walk.
He got more confused as time went on and was given medication to calm him.
We had DN come in 3 times a night at one point to top up his drugs and calm him down.
Steve was in a coma for the last week before he died.

Good morning OJ and Lisa. OJ I think it is so kind of you to talk to me.It realise these memories must be extremely raw.

Dad has just started on halipriodol, I think it's an antipsychotic? Or it might just be a sedative. Not sure.

He slept from 1 till 6am, which is great because he has had some nights without really sleeping at all.

First night with a Maries C nurse, I hope we get some more. It was such a comfort.

Was the 24 hour care you speak of at home rather than hospice?

Steve had the haloperidol too and another blue tablet that melted in the mouth if we were lucky enough to get it in steves mouth!
We got 24 hour carers at home, partly because Steve was seen as a danger to himself and others and we have three kids with autism, the only way Steve could come home from hospice was with 24 hour care package in place.
I was told without the care package I had to choose to have Steve or the kids at home.
If yourdad needs help with mobility then you should be able to get full time help, we had two carers at 7am as that was when I was busy getting kids up for school and ssteve always wanted help then.
Get an oncology social worker, our sorted out all the carer stuff we had 2 SW who were lovely and we still meet for lunch and email each other.

My heart goes out to you.

Dad is mobile at the mo, although before the steroids he was needing help to move around.

Mum has me and my sister at the mo and we are doing a lot.I leave on friday, my sister in a week. I can then come back for the odd day/ over night but live 2.5 hours away. Mum is also a carer for my disabled brother who is not coping well with this as dad been his rock.

Dad is being lovely at the moment but can't be left. He is incredibly insistent and we try to let him do most of his ideas around the house. He often doesn't want to his nappy thing changed and that takes some clever persuasion. He is restless as i say. I really don't think mum will cope without us without daily nursing help for large chunks of time. Someone just popping to put dad to bed wont help cos he'll be out again 20 times.

Marie curie nurse was fab, fab. She's here agin tonight but i know they cant offer ongoing help at this level.

Steriods can help for a while but there are side effects so it is a balance, I know steroids helped to give us Steve back long enough for him to be here for the girls early birthday and to make a few more memories.
If your dad and your mum want him to be at home then they should put the carers in place for that to happen, as your mum is also caring for your brother too, has your mum had a carers assessment?
Do not be talked out of doing what is right for all of you, you won't get this time back.
I feel for you all it is hard juggling all the hands on stuff along with the emotional stuff.
We had issues with flying nappies, Steve would have pulled a catheter out so we had to use pads.
Do you have a hospital bed at home?

Inarush, I have been thinking of you all day. You can get 24 hour nursing care at home but dependent on an assessment from the hospice (they can also provide e.g. a hospital bed/ hoist etc).

I wanted to come back to you on the question of how your mum sees things. I remember how difficult all this was for my mum; she was used to dad making decisions and taking charge at such a tough time was a real strain for her. So I think she had a tendency to trust whatever someone in authority said. (I can see that with your G.P that would have been disasterous). Things got really bad at one point when she was insisting she wanted to manage it all herself and after one terrible night, me and my sister sort of press ganged her and told her that she wasn't coping. It was awful at the time and a sudden realisation that we needed to be real grown ups now. That day, I phoned our community care nurse (part of the hospice I think but not sure now) and discussed my fears with her - that mum was putting herself under a lot of strain and not coping well and I was worried for her and for dad. The nurse was incredible and took what I was saying seriously. She came round that day and spoke to mum and, although she never told her I had called, she made her see that she needed help and that's when dad went into the hospice for a while. That short stay was the best thing we did.

Could you consider discussing your fears with the marie curie nurse and taking it forward that way?

Inarush so sorry to read your op, my dear old dad died in february froma brain tumour, so just wanted to post and send you love and strength

2shoes, so sorrry to hear about your poor dad, BB andOJ thank you so much too. It really has given me strength to hear from you.

Good news!The GP has now refferred to the pall consultant at the hospice and we will have marie curie from now on, Mac nurse coming tomorrow.

Huge difference to have a whole team around us. I'm not so worried about mum and dad now.

Thanks for your insights BB on the mum thing.

The grief at times overwhelms me. I hadn't realised how much this long goodbye would bond us all to dad. I'll miss him now more than ever. I guess that's something to be really grateful for.

x

For what it is worth Inarush, it helped me to remember that the reason it was so tough was because I had been blessed to have had such a truly wonderful father. As you say it really is something to be grateful for.

I'm glad your GP has pulled his finger out and referred onwards for you.

I hope your dad is comfortable, and the extra support helps your mum.

Be kind to yourself, the thing about this sort of illness is it can be quite protracted and the grief is so emotionally draining. By the time my dad died I was mentally exhausted. I took a week off work when he died and really needed that week of peace and quiet and time to cry, reflect and indulge my special memories by looking through photos etc.

Wishing you peace and strength.

I'm finding the stress is putting a real strain on my marriage, which was already pretty stressed to begin with. God i feel low.
I know I've got to build myself up but I don't know how. I think I'm still in shock about dad.

going back to my life tomorrow after 9 days here with mum and dad. after this i will just be able to come for the odd day/overnight.

I hope Dh manages to get start to understand the situation better and be a bit gentler on me.