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?

I can't believe your GP hasn't made arrangements for a MacMillan nurse already .

When my mum was diagnosed with cancer, her GP immediately arranged for a MacMillan nurse and he visited weekly - sometimes more - and informed my mum and dad on benefits they could claim and what to expect etc. He was invaluable at such a horrendous time.

Please speak to the GP again and enquire about it because they really are a lifeline to the whole family.

My thoughts are with you all x

I am very sorry to hear your sad news. My granddad died of this a couple of years ago and I'll be honest, it was very hard to witness. Not because he was suffering - the hospice was amazing and he was not in any pain. But because he couldn't really understand why he was there. He became quite childlike and as he had been an exceptionally strong man, physically and emotionally, it was very hard to see. But by the end he was just sleeping and sleeping, and then he never woke up. As far as endings go, it wasn't a bad one. But I would prepare yourself for some big personality changes as it came as a huge shock to my family.

Lost my lovely Mum to this June 29 2008.

Speak to your dad, I mean really speak to him. Is he aware of his diagnosis, and has he allowed himself to acknowledge that he is dying, as in dying now and not in 10 years' time? Tell him you love him and tell him what made him a good dad to you (if this is how you feel about him obviously, but from your posts I gather you have a good relationship with him, yes?).

It is easy to get caught up in the difficult/time and energy consuming tasks of looking after somebody with a terminal illness, that the spiritual side of it is often overlooked. Does he or you and your family have any particular faith that can give you strength? Some ill people find they want to talk about their own funeral and express preferences etc. Sorry, I really do not want to be morbid or upset you more than you no doubt are already. You have all only had a v short time to get used to a v bad prognosis.

Treat every meeting with your dad as potentially the last, so that whenever he does go there are not regrets on your side, or at least no big ones.

A "good death" is possible, but takes a lot of committment and effort from all parties. Your GP does not sound particularly clued in with palliative care, depending on your/your dad's relationship with him, can you see another doc? Having said that sometimes communication from hosptial to GPs is appalling and IME patients often know things before Primary Care does.

My condolences, Goober.

thank you. I'm on anti depressants now and feel like i'm a mess. I plan to ask my GP for a sick note for a month or so, until I have holiday in July anyway. Although I won't be here all that time, I think I can only focus on my functions as a mum and daughter. Work seems beyond me. Any thoughts?

Yes, obviously take time off work, if that is what you want (some people do find work a welcome distraction).

AD can help you to cope with what is thrown at you, but bear in mind that being unhappy is quite different from being depressed. And obviously you will be v sad to see your dad change, be ill and ultimately die. It is normal and healthy to feel these emotions. It would say sad things about your relationship to your dad if you could see him go through this and NOT be upset by it.

It is really important to remember to also look after yourself and your mum of course.

I wish you lots of strength. Good night.

Goober, I'm so sorry. How did you manage?

Provinciallady, that's exactly it- Dad was a solid, kind, lovely man and he is now weak not just physically but also mentally. It's heartbreaking.

I appreciate that PDog. Dad now does not have the capacity to take in the diagnosis. So we try to just follow the feelings behind what he says. He did say today that life must pass, out of the blue. We gave a big hug and agreed with what he said. We are not perfect but i do not feel that are troubled by unfinished business. This is a blessing I guess.

Thank you all again. THis has really helped.

meant to say NOT troubled by unfinished business. Off to bed soon.

"How did you manage?"
I don't know.
Tried to spend lots of time with her, only I am same as you, have 3 kids and a busy life. Just do what you can and talk as much as possible with DH/ brothers/sisters.
Love to you.

Thank you Goober and good night.

sorry to hear it lost my dad to cancer 2 years ago now he was only 58.

But i would reccomend the Macmillan nursers they was fantastic , my dads was slightly differnt because up to week before hand we was told he was going beok.But he hd 1 attact and for him he realised he had enough and signed the do not resisitate form himself .

But just enjoy your dad while you can and be kind to yourself allow yourself some time to grieve

So sorry you have to face this.

I agree with Pacific - we spend a lot of time don't we dwelling on birth - where to do it, how to do it, what we expect. Then when it comes to death we find it so much harder to do that often it doesn't get done.

It sounds like you are all at peace with one another and that's so important. Try to give a little time to thinking about what your dad might want to do as he comes closer to death. If he is in a hospice or hospital is there anything you can take with him that will make it more home like - a blanket, cushions, photos? Then go and have a good cry because you shouldn't have to be doing this.

Be good to yourself - use your support network, make sure your friends are helping you out, prepare easy meals and get help with your little ones.

Expect that there is going to be some anger here - I would put good money on you and your mum having a falling out at some point. It's the stress, that's all and when it happens don't feel you've let each other down, just blow up and then make it up.

This is most likely going to be the hardest thing you've ever done - but you can and will do it well because the love you have for your dad is going to get you through.

All the best.

Inarush: I haven't read the whole thread because I find this kind of thing pretty raw but wanted to write to say that I know what you are going through. My wonderful, wonderful father died of a brain tumour two years ago. He was such an intelligent, strong and kind person who was always looking out for others and it was devastating to see him so worn down both physically and mentally. By the end, he was very dependent on us for everything.

Things that really helped us;

• I took at lot of time off work and I am so glad I did. I look back now and know I did everything I could to maximise my time with him and also to provide respite for my mum.
• Getting help from a hospice. They are wonderful places. We didn't use macmillian because we were lucky enough to have a local facility that specialised in tumours so we used them. When dad got really bad, they took him in for 3 days to help sort out his pain relief so that we could bring him back home and keep him confortable. They came out to the house loads and provided counselling for us as well. They were our lifeline and I spend a lot of my time now raising money for them so that others can have the same help. Please make sure you access a service like this.
• I don't know if you or your dad are religious but we also asked the local vicar who dad knew well to stop by from time to time. At the end, dad was bed bound and couldn't speak but when the vicar came and recited some prayers it relaxed him.
• Look after each other in your family. You will all be suffering a lot and you need to find little ways to support each other.

Be thankful too that you have some time to tell your dad how much you love him. I am grateful every day that dad must have felt surrounded by love in his last few days.

Take care of yourself. This is one of the worst things you will ever have to deal with. I wish you lots of luck and best wishes.

Inarush, there is very little that can say that is going to make things any better. I know all too well what you are going through. My father had a brain tumour (his was non-cancerous although he died from a different cancer 8 years ago). My mum remarried a wonderful guy who i was very close to and was a fantastic GP to my DC's. He was diagnosed in July last year with an aggressive brain tumour and died in late september.

My advice would be to spend as much time as you can with him and to be there for each other. As someone else has said, treat every visit as the last, tell him you love him, make the memories. Use the MAcmillan nurses and be prepared to push for what you and your family want. We had to really push for a hospice place but it was worth it.

ALso speaking from experience, look after yourself, you don't mention your mum but she is going to need you but let yourself have time to adjust and take in what is happening. It is so easy to get wrapped up in supporting other people that you can forget to support yourself.

I am really sorry you are having go through this.

Best Wishes.

Elliepac
x

Hi again - posted earlier, but wanted to add something. In my experience, and I have no idea if this is typical, the mood changes and disturbed nights was a phase that passed. Unfortunately, I was a long way away, with a newborn baby at the time, so my DM and DB took on most of the care at that stage, and although my DB sees this sort of thing on a daily basis, he was absolutely exhausted by the end of it - so do try to look after yourself inarush. Also, towards the end, things became much more peaceful (maybe the last 2-3 weeks). Dad couldn't speak or read by then, but still understood what was going on, so we sat and read to him. It's very difficult to write about, but the end is a sort of release, for everyone, but most of all for your loved one I think. There is a certain peace about it, a coming to terms. I remember walking through a field with my mum on the morning after he died and seeing skylarks, and for me, that sort of summed it up.

Hello and sorry to hear about your dad, my lovely husband died June 9th last year from a GBM4 brain tumour, there are lots of threads on here about it if you search my name.
The best thing we did was to get a mac nurse, we still see ours and she is very helpful in many ways.
The mac brain tumour forum is also very good for info and support.
I will be back later when I will read the whole thread and give a better reply, feel free to contact me.

My mum died 5 years ago from a brain tumour but thankfully she had a 'good' death. She remained herself right until the end. Obviously she spent a lot of time sleeping but on her good days she was out and about with my dad. She was laughing five minutes before she died. Apparently the tumour caused a bleed and she died within minutes. I am so relieved when I think of the way mum went. We've since had a few deaths in the extended family and some have been so hard, not only on the person involved but on the family. We had notice that she was going to go, so we could say all we needed to. She even planned her own funeral. I hope that your dad is as lucky.

Thank you. Thank you. Reading those messages has been a huge help just now.

Just had a terrible night, faecal inpaction for Dad and painful. Needed to call emergency doctor.

most hurtful thing for me has just been the GP's visit. We said that we wanted to think about a hospice death for dad.After much soul searching. He kept saying this should be plan B. He thinks that we need a short hospital admission for dad no hospice bed avail) to sort out his bowels. I think this can be done at home and that hospital could be quite scary in his fragile state, even if it is a palliative care bed. He didn't listen to us and was quite rude to me. Shutting me up. Mum obviously has to keep good relations with him. There is no other GP. SO she started to agree with him.

I was polite but didn't agree with him when he didn't seem to listen to our wishes.

He even said that he thought we really should have called the smaraitans last night rather than on call doc. That it was all just coming to terms with the diagnosis. Then gave us terrible advice for behavior management.

I can't handle it. My mum can't take in the medical stuff so I feel like I'm in a very uncomfortable situation.

Please calm me down.

Thank you springtime.

Mum is tending to side with the GP which makes the whole thing uncomfortable. She is exhausted and so I can understand that. The last thing I want to do is to upset mum so I will try to get support from the Mac nurse who we are due to meet soon.

I don't have time to get angry with the GP but things are moving quickly downwards for dad.Support from here really helps because otherwise it is all too crazy at the mo.

I would definitely try to see the Mac nurse asap inarush. Am at your dad's GP. Is the hospice connected in any way with the hospital where your Dad is being treated? I'm usre that there must be ways round obstructive GPs, but it's not really what you and your DM need at the moment I don't expect.
One thing that the Mac nurses offer is overnight care (ie they stay at your house overnight) and it may be worth asking for this just to give you and your mum a break for a night to try and catch up with rest a bit.

Oh InaRush, poor you and poor your family. I know that key for us was that we had a hugely professional and supportive medical team around us. The sooner you can get macmillan involved the better. And, if you can, do stand up to the doctor. He is the medical expert but you are an expert on your dad and what he would want and you need to advocate for him now (don't want to put more pressure on you). I remember my mum was very reluctant to hear any criticism of dad's medical team and it was hard (as I said they were excellent but missed some stuff early on.