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

(89 Posts)
Inarush Mon 25-May-09 20:48:12

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?

cornsilk Mon 25-May-09 20:49:31

Have no experience but didn't want to read without posting. Take care.

Inarush Mon 25-May-09 20:50:54

Bless you. I am quite desperate. Thanks.

cocolepew Mon 25-May-09 20:52:00

So sorry to hear your sad news. My Uncle died from a brain tumour. He was in hospital for 19 weeks and closer to the end (last few weeks) he just slept. My Aunt didn't want him moved to a hospice, as she said people die within days of moving there, but TBH it would have been kinder for him to go sooner.

Thinking off you.

bigbellylady Mon 25-May-09 20:52:30

hi, I work with people in the community often at end stage illness.

Where is your dad now and what questions did you have ?

bigbellylady Mon 25-May-09 20:52:31

hi, I work with people in the community often at end stage illness.

Where is your dad now and what questions did you have ?

ProfYaffle Mon 25-May-09 20:52:44

My dh has a brain tumour but it's benign and not life threatening. There was a poster called OJ whose husband died of a brain tumour relatively recently. Not seen her around lately but hopefully someone can point her over here.

So sorry to hear your news, hope someone can help you soon.

PussinJimmyChoos Mon 25-May-09 20:53:06

I went through my MIL dying with cancer last year - she died in Jan. She was abroad and DH visited her to nurse her through it and although I wasn't there, I was providing them with a lot of information at this end as they don't have palliative care in the Middle East

I found the Macmillan forum invaluable - google that and when you join up, you can post on the discussion forums and ask for advice, support, what to expect etc

Am also here to help if you need me, although am by no means an expert, but am familiar with end stages as I was advising DH and family what to expect

Much love at this difficult time

babybillandsplodge Mon 25-May-09 20:54:24

Inarush, I'm so sorry to hear about your dad. I lost a very close friend to a brain tumour eight years ago so understand a little of what you are going through.

She did not want to go into a hospice as she had two very young children (3 and 6 at the time), but, tbh, she became very confused towards the end and so was finally transferred from home to a hospice about 3 weeks before she died. The hospice care was amazing and I think we all wished that she had been transferred earlier - but this is not for everyone.

Have you got support from Macmillan Nurses - they were fantastic.

My only advice is to try and spend as much time as you can with him. I saw my friend every day for the last few weeks and was one of the last to see her before she died. Even when she was no longer really aware I was there, I found it a source of comfort to me, and I hope she knew that we were with her.

Look after yourself too - lean on other people, it's a devastating journey and you need all the RL support you can get.


wrinklytum Mon 25-May-09 20:56:29

Sorry to hear this.

Has your Dad got a Macmillan nurse?The macmillan service is excellent.I will try to post their web address in a bit. useful and have a freephone service for pts and relatives.

There is a poster on here who lost her dh,very sadly,with a brain tumour.

wrinklytum Mon 25-May-09 20:58:26

wrinklytum Mon 25-May-09 20:59:38

sorry macmillan

midnightexpress Mon 25-May-09 21:05:33

First of all, my sympathies to you - it's a very difficult time. My lovely dad died of cancer (secondaries in the brain) 3 years ago. It was all quite quick from diagnosis to death - about 3 months, which was merciful as it was pretty grim for him, particularly the last month. We moved him to a hospice for the last few weeks as my mum found it too much to cope with getting him up and down stairs, and he was having very disturbed nights for a while. Dad was a bit reluctant at first, but the staff were so fabulous and it was such a peaceful, lovely place - not at all what I expected.
As far as meds are concerned, I'm not an expert. My brother is a nurse, though, and one thing he said to me was that it is important to remember that medicine is an art rather than a science, and in this situation I think this is very true - each patient is different and we also found that something that worked one day was not so good a day or two later.
Spend as much time as you can with your dad, but also try to remember to get rest and a bit of time out for yourself.

PacificDogwood Mon 25-May-09 21:06:34

V sorry about your dad's illness.

Hospices are magical places of peace and comfort for people with life limiting illnesses. They offer a lot of support and symptom relief even before the very end of life and a lot of people will spend some time in a hospice to have medication adjusted optimally and then go home, to die if that is where they wish to die. In my experience (professional only, not loved ones) a lot of relatives really benefit from the peace, confidence and rest a hospice can give them too. Please do not discount hospice care on some old fashioned prejudice held by your aunt - if you or rather your dad is lucky enough to have access to a hospice.

Steroids: they can be used to decrease pressure on the brain to help with symptoms like pain/nausea/headache, but are also used as they can boost appetite/energy.

I wish you and your family lots of love for each other and strength for the next few months.

Inarush Mon 25-May-09 21:09:01

Thankyou so much for posting. Dad is at home with my mum.I live a couple of hours away with 3 little ones and so can only be with them for a few days at a time.e says

GP is keen to maanage the whole case himself and not to refer to the hospice for advice.He says he will refer to Mc M nurse in time.

Dad is already very challanging to manage. He is polite and not aggressive but has a lot of confusion, bizarre behavoiur and can be very agitated. He is now doubly incontinent and it takes super persuasion powers to change him.

I wasnt to make sure his steriods are managed just right and to know what to expect.

babybillandsplodge Mon 25-May-09 21:11:34

Inarush, can you not go straight to Macmillan nurses yourself? Don't think you need to wait for your GP do you?

justaboutspringtime Mon 25-May-09 21:16:27

Message withdrawn

Inarush Mon 25-May-09 21:16:55

Thankyou again for the posts. So comforting to hear you say that it was hard for you too, Midnight. I'm shocked at how exhausting it is so far and dad is still mobile.
It's taking all our skill and quick wits to keep up with his behavoiur, as well as juggling fear and grief. And also trying to gem up on the topic.
I read the McM web site but can't work out how to chat there, I'm too exhausted I think. Thanks again.
Also it is great to hear experiences of
I wonder how we will cope.As strong as we try to be.

PacificDogwood Mon 25-May-09 21:20:37

Contact the McMillan nurses now: it is nice for all concerned to know a person before a possible time of crisis. They are v helpful in all sorts of ways and have lots of informtation you might find useful/helpful.

Also get your disctrict nurses involved. They will not do a lot of personal care (Social Work can sort that side out, and in a hurry, too, in a case like your dad's) but have access to special mattrasses, hospital beds that make changing somebody easier etc.

Has your Gp filled in a DS1500 form? This form speeds up all benefits other entitlements for people with less than 6 months to live.

Predictions how long somebody is going to live are notoriously difficult to make and v often wrong, either way. You, your mother and other close family will have to pace yourselves. You may want to be there for your father, but you are also likely to have other important obligations, and to keep looking after somebody who you love, is failing and can show increasingly erratic behaviour is v v hard. It is no failure on your part to get some help in, and get in early, before you/your mum collapse in a heap.

fishie Mon 25-May-09 21:22:25

inarush my mil died of this.

she didn't want to go to a hospice, but to die at home. but then no arrangements were made for that to happen so she died in an ambulance on the way to hospital.

macmillan and the hospice had made sure that she was very comfortable at home but nobody had ever gone to the end bit.

wrinklytum Mon 25-May-09 21:26:23

Additionally,does your Dad see an oncologist/pall care person in a hospital situation?They should be able to refer you to a specialist nurse who can deal with both the psychological stuff,including Mac support,and other practical help,such as the ds1500.A lot of units have specialist psycholgists/nurses that are available to relatives,too,as well as patients.

Inarush Mon 25-May-09 21:27:26

Thank you. Right, I'm now determined to get McM nurse for us. The bank hol weekend has been a nightmare. We started the steriods Thursday evening and only got the terrible prognosis on Friday afternoon. So it's been a steep learning curve on our own.
Dad didn't sleep at all the first 2 nights. Mum was up with him. (Even if I got up too).

I actually called the hospice for advice and i managed to speak to a lovely nurse who suggested we give the 4 steriod tabs together in the morning.He slept much better after that. (still up for good at 5am and marching around).

Hospice needs GP/ Mcm nurse referral to be involved further.

God, it is tough. So exhausting on all levels.

Sidge Mon 25-May-09 21:33:42

Inarush my dad died in January from a brain tumour (GBM grade IV). He was in Australia, I live in the UK so it was incredibly difficult; luckily the rest of my siblings are in Oz so they were there for him.

I went over twice, the last time was at Christmas 3 weeks before he died. He had gone into the hospice 5 days before I had arrived for pain management and also because he was increasingly unsafe at home. My sibs were having to do a rota system to be with him as he was wandering, didn't sleep well, turned on the oven for example, fell over, was quite confused. It was incredibly hard for them, so going into the hospice was best for them as well as him.

Dad initially said he wanted to die at home, but as he got more ill he realised that wasn't really feasible, especially as he didn't want any of the family to do any personal care for him. And of course near the end he was asleep for 23 hours of the day so needed full nursing care.

He also needed constant tweaking (and increasing) of his pain meds, so being in the hospice was the best place to get that done quickly and appropriately.

It was a lovely place ironically - peaceful, totally patient-focused and with such kind and experienced staff. Dad's death was peaceful, dignified and comfortable, which is all we ever hoped for.

I am so sorry you are going through this - it is the hardest journey, so very painful and difficult. Please CAT me or let me know if you want to chat, if you have any specific questions.

Thinking of you and your dear dad.

Inarush Mon 25-May-09 21:34:29

Pacificdog, I didn't know predictions are often wrong. The neurosurgeon told us 2 to 3 months. He had 2 good (if hyper)days on steriods and then today has been much more drowsey (slept about 3 hours in the day). I wondered if this meant that the steriods are starting to not be enough for the swellling.

cass66 Mon 25-May-09 21:35:14

The macmillan nurses will also provide a lot of support (both physically and emotionally) to your mum and you. which you will need. They can also arrange night sitters to give your mum a rest. (a close family friend died of a brain tumour, and his wife was reluctant to accept them at first, but they were a godsend in the end.) please refer yourselves to them, if your GP won't (which I am saddened by). A lot of district nurses are also very good with palliative care issues.

Although it's hard to think and talk about some issues, towards the end, you do need to think of where your Dad would like to be to die, and to get his GP to document that and to sign a DNR (do not resusitate) form and let the out of hours team know etc.

Best of luck. Cass.

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