brother dying so much unresolved in his life

[littlesister]

My brother is such a good man but very, very complicated and he is dying. He was given 6 - 12 months to live when diagnosed with pancreatic cancer around 2 months ago.He has not yet seen an oncologist which I find strange. He was due to have a biopsy a few weeks ago and some mistake was made about why he was there and no biopsy was undertaken. Last week he went again and they couldn't do it because there were blood vessels all over the surface of the large tumour in/on his pancreas?? Nobody seems to know why they even wanted a biopsy because he is too frail for chemotherapy as confirmed by the medics. He eats very little and only when confronted and cajoled with food. The District Nurse comes out every day to top up his morphine and have had to come out in the night to administer further morphine when breakthrough pain has been unbearable and when he is very sick. Worse still his partner has bowel cancer and is receiving palliative care. Despite getting a cleaner and gardener in to take on some of the responsibilities, she is shouldering so much. They have been together for a long time but both have been married before with children and all of their grown children are grieving in their own way which mean so many misunderstanding.

I have no medical knowledge but am a friend of google so am aware that my brother is unlikely to live very much longer. What worries me is all the unresolved issues. I know that he is trying to keep everyone happy BUT his way is not being open, presumably for fear of confrontation which he can't cope with, couldn't at the best of times. I am aware of the stories of people hanging on and hanging on because they are not at peace and wish I could help him find that peace. I am trying my best with explaining/smoothing over the slights. My nieces and nephew are wonderful and I really respect them, I am sure his partner's children are the same but the baggage they all carry over the years is unbearable for them all and there are 2 people dying here, one sooner than the other and all these people who are in pain. I guess I am asking for advice. I think, so far, my diplomacy is helping but I realise that it could all go horribly wrong for all them and for me.

[laura]

oh dear, families eh!!

as a general rule of thumb, why not let them, not the two parents, meet and chat and sort it out, thats if they want to!

be there for your brother and his partner if thats what you want, that surely is enough for you to contend with? the families sound as if they are adults, so perhaps should act accordingly, cos it ought to be what their respective parents want that is important.not their squabbles.

i guess that your brothers way of dealing with things is not new to him, so why should he have to change?

i do hope he doesnt get pulled around too much, but does sound strange about biopsies, no consultant etc, have you got a macmillan nurse or equivalent? our nurse can sort out meds etc etc

could you tell ALL the families that your concern is the care of dad and partner, and wont get drawn into any bickering. families arrrgh, well some !! love lauraxx

[ali]

Hi

I agree with Laura

xx

Dreadful situation for everyone

Take Care

x

[littlesister]

It is dreadful. I know my nieces and nephew are good people. They are grieving and suffering. I do not know my brothers' partners children but it is probably ditto. If I can smooth the way for all of them I am more than willing but am aware that I am only human. My brothers Partner called me today (we talk daily, strange this as they have been together for 25 years and only got to be friends since she got so ill and then he became, not just ill but terminal) to give me an update and her son ( a consultant in A & E, thinks it is only a matter of weeks before my brother dies - and he will have much more experience than all of us). My brothers partner is not well, is weak in body but is trying her hardest. ( got a wheelchair for him today, he is reluctant, but she wants him to get out and experience their mini holiday not just have four walls). I salute her for caring so much. I just wish his children could see her caring and not dwell on their past internicine struggles. I have my own issues but hey! he told me a couple of weeks ago he loves me - very precious to me but I did tell him he is so stupid that we lost so many, many years with all the family guff and I really wish, hope, want to try and avoid that for his kids. Off to bed now, my own family problems are also looming but as I get older so much of all this seems so avoidable.

[littlesister]

specialist nurse said that average is 100 days from diagnosis, this mean only about three weeks if that is average. He is so thin and drawn, voice so weak, cuddling him is like cuddling a bag of kindling. So unbelievably sad. Macmillan nurse care is to kick in tomorrow. Feel for his partner who is also terminal but trying so hard to shoulder all the organisation, and emotionally support him.

[DRAD3]

So sorry to hear about your brother and the unresolved issues that are troubling everyone. It is definitely a time when all of us question life and things we have done or not done. It feels like a race against time to put everything right, to make peace. Not everyone can do that, for all sorts of reasons - what a mammoth task it must be, after all, especially at a time when it is difficult enough just getting through each day being so very ill. Perhaps it is the time to just let go of everything, to not focus of what is wrong or has been wrong in the past. Do not feel you have to fix everything for everyone - you are giving yourself quite a responsibility! Just focus on what is right and I am sure you all share a love for one another that really is all that matters. It is lovely to hear that your brother was able to tell you this. Telling someone you love them in this situation really says lots, lots more - I accept you, I forgive you, I will miss you, I will never forget you. Let that be enough. Sending you all the strength you, your family and your brother need and much love.

Deb

[littlesister]

I am not a sentimental softie, but your post touched me Deb. I did find out, actually I knew, his major worry and that is the short future his partner has. I think he was reassured when I told him I would not abandon her and would continue to to give her as much attention and visit as much or more when he goes. Also that his eldest daughter has said the same. He is worried for his son, who he is particularly close to and I have pointed out he is an adult (middle aged in fact) that he will be devastated, will however, survive albeit feeling a great loss. I think they are showing some signs of healing, whether it is enough is another matter. My brother's partner's son has been visiting and has been great in looking after them both. He returns to Oz tomorrow but has left a warm and positive mark. Fingers crossed that during this appallingly sad time things continue on this trajectory and there will be some comfort and conciliation for them all.

[DRAD3]

Men are funny old things aren't they?! My husband was never worried about himself. From the day he was diagnosed, until the day he died, he worried endlessly about me and our daughter (only 13 years old) and made list upon list of things to be sorted so that we didn't have to worry about anything. I know he worried about our safety without him around to protect us. I did my very best to be strong and to persuade him that I would be OK - I didn't always succeed and on days when I cried and cried I would see the fear in his eyes that I wasn't up to the job. I could never explain to him that I wasn't crying out of any weakness or lack of strength - I just felt so, so, so sad - and not for myself, for him. We really all just worry and care for each other don't we and want to protect our loved ones and take away their fear and their pain? The hardest lesson to learn is that you simply can't. I am still pretty annoyed about that I can tell you!! I am so happy to hear that things are going well and your family are finding peaceful ground to share - that is precious and will help you through difficult times in the future.

Much love to you

Deb

x

[littlesister]

Thanks Deb. Well we visited the oncologist. FIRST VISIT! what a waste of time. What a lot of waffle. He commenced by asking my brother how he felt, my brother, a taciturn man said little but a little discomfort and when his partner tried to give the real info (incidentally this man is also her oncologist, he effectively shut her up, therefore all three of us with him daughter, partner sister were effectively shut up. The oncologist commenced his advice by telling all that could be done for PC, surgery, chemo etc., even said they THOUGHT it was PC?????? 2nd part was to tell him he is too far gone for surgery, too weak for chemo and too weak for the biopsy! then went on to infer the body can heal itself sort of, excerise, food etc., In front of him was a man too weak for any one this and a slight feeling of his responsibility in this. Furthermore, he asked if he drank and smoked, bit like closing the stable door after the horse has bolted even if he did drink, which he doesn't and the smoking hardly matters now. My brother couldn't take anymore and left the room with the specialist nurse. We remain to talk to this man - why?. I don't know. My brothers partner asked how long he had got and he said in such aggressive circumstances 2-4 months but from when?? Hopeless. The DN has taken him off the driver and on to patches and he is having loads of breakthrough pain. DN had to be called out yesterday evening to give him morphine shot and he then woke at 2am with breakthrough pain and had oral morphine. His partner, who to remind you also has terminal bowel cancer has stopped taking her sleeping pill because she feels she has to be there for my brother. DN said this morning to keep a record of how many times orl morphine had to be given so that they would consider upping his morphine patches. Why, why why have they removed the driver which at least, had some effect in reducing the pain ? I spoke to my brother this morning and he is worried about his partner looking after him, he told me he just wants it over with. Oh! difficult. The macmillan nurse is coming tomorrow and the hospital bed is going in. I have suggested maybe the Marie Curie nurse could come in and sit at least for a couple of nights so that my brother's partner can sleep. All so very sad.

[suef]

Oh dear, I am so very sorry things are going so badly and it sounds as if the oncologist is making things much worse. May I suggest that you phone or email the Support people of this website to ask for advice on how to handle the medical staff? They are very experienced in these matters and will be able to help. The phone is 020 3535 7099, email support@pancreaticcancer.org.uk. That way you can at least help your brother to get better attention. Good luck! Thinking of you!

[DRAD3]

What an awful situation for your brother, his partner, you and your family. My experience of the oncology team was very good whilst my husband was receiving treatment but at the point where treatment was not having any benefit, things changed. I did feel a like we had been "dropped" from the team. I was already prepared for this, however, and was quickly on the phone to the palliative care nurses in the community who became our new team and were absolutley wonderful I have to say. They ensured his last days were pain free and his last hours peaceful. It is awful to find out that there is nothing that can be done and I understand how devastated you must feel. Your brother is obviously very worried about being a burden so it is important that you get as much support as possible to, not only ease his mind, but to offer the help that his partner will be in desperate need of. Push for the pain relief to be right - it is unacceptable that he be in any pain or have a regime changed if it was previously doing the job! You are obviously being of great help to them - I do hope you rally a good team around you for the weeks ahead. Sending you love and strength.

Deb

x

[littlesister]

Well, what can I say - things have taken a turn for the better. The care has kicked in, my brother has carers to shower him and cream him. His pain relief and nausea control is now well controlled, well for now. He has perked up, though,not eating - he is drinking and yesterday had 3 ensure cans. He even went outside and sat in the sunshine for a while yesterday. His daughter came down to help yesterday which meant his partner took her sleeping pill and slept from 8pm last night for the whole night. My brother loves his hospital bed and slept all night. bliss. I am going up tomorrow to sit with him tomorrow evening and night and his partner is going out for the evening and I am sure it will do her the world of good. Our hope is, not that he will live for a long time, that is ridiculous, that instead he will be free of pain, contented and that something will happen to take him while he is in this state. We will be sad but imagine, the solace of knowing he left us whilst all for him is well. The acrimony seems to have gone and I have to take my hat of to their children for ensuring this.

[laura]

hi there, so pleased you have a happier post, you must be so pleased, c we never know whats round the corner! am glad that family differences have been put aside, for all your sakes.

long may it continue that your brother and his partner have a more relaxed and comfortable and pain free life.

wishing you all well

love laura x

[littlesister]

How strange this illness is. Went up to see by brother and partner yesterday. I was sitting with him last evening so that his partner could have a much earned evening off and he was so animated talked all evening until 9 ish when he needed some oromorph. He ate a big bowl of rice pudding. Then he just sank. This morning really poorly, wouldn't let the carers wash him so ill. About an hour later, he perked up and has been fine all day, talking, having a little sleep, going into the garden to sit in the sun. His morphine patch ( yes they removed the driver the other day) has been upped to 75mg morphine-2 patches). Is this the usual way this disease plays out?

[littlesister]

saw my brother today. Strangely composed. Obviously not comfortable a lot of the time, sleepy but doesn't wish people to leave, neighbours drifting in and out, partner so tender with him. You know what without the pain I guess this is the way to go. He is feeling the love and I think he is accepting it and maybe even embracing it. Spoke to my niece tonight and she feels as I do, I hope his other children do too.

[littlesister]

My poor brother is constantly vomiting, well its dry retching really. So awful. Even if he was well this would make him weak with this bloody PC it is horrific for him. Can't keep down cyclozine, or other drugs, hope the DN will be out to give him an injection of an anti emetic.

[DRAD3]

So sorry to hear your brother is having a bad day. It is such a roller coaster isn't it? My experience with Gary was much the same. There were days I feared he would not see out, then suddenly he would perk up and "recover". For me fear, followed by relief over and over again and constantly trying to second guess this horrible disease! I am glad you are all making the most of the good days and making some happy memories. Much love.

Deb

x

[littlesister]

Thanks Deb

Daughter no.2 rang me yesterday, visited her uncle and felt he really is close to dying. I rang and his partner says that because she is with him 24/7 she is not noticing how quickly he is deteriorating. I am driving up to their home to stay overnight so that she can sleep properly tonight. I seem to spend so much time on motorways - thank god for radio 4! I just wish I could be of more help, more use, I am more in the mentor role without having much clue! Still, if that is all I can do, I'll muddle along.

[DRAD3]

You are doing a fantastic job - what a wonder you are! I was with Gary 24/7 and too did not notice the deterioration - he was just my wonderful Gaz. I did notice every awful symptom, don't get me wrong and knew every day he was getting worse, but also saw beyond that and into his soul, which was of course, shining as brilliantly through the shadow that is this hideous disease. I only realised how awful he looked to everyone else when I look back at photos of his last week. Looking back too I realise how courageous and amazing he was but also how well I did. I am so, so tired now - probably because now I have time to feel it. I did not allow myself to feel much of anything back in April - I needed to be strong so I could help him. So be proud of yourself because I know how hard it is to be there for everyone else - in the midst of it all, you don't realise - love to you and your family, as always.

Deb

x

[littlesister]

stayed overnight Sunday. Slept but woke up about 6 times to go over to his bed and check him. His partner does this night after night and her with terminal bowel cancer - not good. My brother said to me he thought he would have a heart attack to end his life - I pointed out that he must have a strong heart - he agreed. Just goes to show it is not just those near and dear who need to know how this will progress but the dying do too. Not sure when next trip. Sat Nav really buggered up my last trip, instead of taking 2.5 hours it was almost 4. Had turned off voice accidentally. When I realised (on a motorway) I had to make a decision about direction without a clue and naturally made the wrong decision. When I turned voice back on got on road, then realised volume turned right down - doh! and on and on...... Will check sat nav carefully before next trip and at every stop!

[Ella50]

Hi, I have just been reading through your post and my heart goes out to you all.. It surely is a dreadful disease..but you must be so proud at how strong you all are coping.

I too saw beyond my mams obvious deterioration, I was with her everyday for hours and

hours, and only had to look into her gorgeous eyes, that never changed.

My mam just passed on the 10th, (thankyou for posting) I still feel the need to read through these stories, in tears mostly, as all so simular stories to my mam, just diff times and dates.

All you can do is to spend as much time as you can with your loved one, and say everything you want to say. Knowing your there for them and your doing your best.. keep asking for any advice you think you may need.. or ask on here.

My mam never got to use anything she had delivered.. the zimmar, commode etc.. only used her surgical bed for 3 nights before she had to go into hospital.. and then the hospice, which she loved. Just things happened so so fast with her..

Our one oncologist meeting wasnt the best, just handed out some steroids, which done nothing.

She never had nausea at all, only one night which was due to the morphine dosage increase, the anti- sickness seemed to keep it under control.

When I saw her every morning I never knew what was waiting for me- good day, bad day etc.. no two days were ever the same.

I hope you have some really good days where you can keep making some lovely memories..

In the end my mams pain was under control and she was comfortable and where she wanted to be. As a family we all pulled together.. She knew we were all there for her and looking after eachother.. kept her spirits up.

Thats all we can all hope for in the end with this horrible disease.

As already been said.. you dont seem to think of yourself.. everything was based around my mam.. Now my rollercoaster has stopped.. it can hit you hard.

So look after yourself.

Take care! Love Ella xx

[littlesister]

Thanks Ella and I am so sorry for your loss. My brother's partner has just ordered a kind of bed for the garden. They have a beautiful garden and under the shade of the apple tree in this weather is a wonderful place to be. Hope the weather holds so he can spend it out there in comfort. He fell last night and we are just hoping he hasn't broken any bones, DN coming out today so will know whether he needs to go to hospital for xray or not. He felt better and got himself up to walk into another room but keeled over. I can't speak to him on the 'phone anymore as his voice is so weak, I can't hear him. His daughters are down this week-end so I will not go up until early next week, unless I am called to do so. His son is there everyday, the neighbours are really good friends and drift in and out every day, this together with the macmillan nurse the carers and I think the marie curie nurse is about to come in, oh! and also they have a woman from another charity who has started to come in once a week for three hours so that my brother's partner can go out - so they are well supported.

That's it for now - each day is different so expect more posts.

[Ella50]

That sounds lovely, I really hope he gets many sunny days..

And hope the fall is nothing too serious.. this on top of everything else eh! you must feel what next!? Just got to pick yourself up and carry on and just try to stay strong.. easier said than done sometimes I know.

I remember my mam, used to have to bend in over her to hear what she was saying.. the quickness is scarey.. if that weak - now is the time to talk talk talk..!! Go and see him if you feel the need.

Thats great support, at least you can sleep easier knowing that.

Watch he doesnt get so tired tho with all the visitors, they can wear him out without realising.

But good company, and that will help.!

Take care Ella xx

[littlesister]

Thanks Ella, the neighbours and friends are very considerate. When they pop in they only stay a little while and my brother is happy to close his eyes but when asked if he wants us/anyone to leave him to sleep, he always says no. I think he knows he is alive when he hears people he knows talking.

Enjoy the weather.

[littlesister]

Trust me to be so optimistic in my last posts. Turn for the worst now. My brother has soiled himself 3 times since last night. Could be the voltarol pessaries have stimulated his bowel or it could be that he has become incontinent. Whatever, he is mortified. His partner is a former DN so she is not squeemish - he however, is having his dignity removed. She doesn't want him to go to a hospice but is so worried that because of her health she will not be able to cope. So much for lovely times in the garden - he doesn't want to be bothered with anything, just sleeps.