A thread for those supporting relatives with life limiting diseases.

[CharleyDavidson]

I know a lot of people come onto here because they are suffering themselves but I wondered if there would be a use for a thread for those who are supporting those who are suffering. Being strong for someone else is HARD and this could be a place to discuss the things that we are up against.

My own dad has a prognosis of a few months for a cancer diagnosis and it's just awful to see how ill he is and how sad he is about things. :(

Finding it really difficult at the moment. Dh is supposed to start a new chemo this week (got a chat with consultant tomorrow to see if side effects will be worth the limited time it will give us )
To top it all off dm is going on holiday next week and is relying on my db and me to look after my df (who has advanced alzheimers). Last time this happened most of df's care fell to me and i was exhausted. Ive told db that i can do 3 hours a day and that is all because of hospital appointments and needing to be at home in the evening for my ds's. I
Im just annoyed that mum has used most of his allowed respite already and she knows how unreliable db is... Sorry just ranting cuz i know its going to fall on me and im already struggling

Dad is in so much pain today. We've just had the GP round. He has now been prescribed morphine. This is all just like Mum. It's so horrible. He's been hoping to make a granddaughter's wedding this weekend, but it is several hours drive away. I don't know what to think about that, will take it one day at a time and not think about a decision yet.

Thank you Nemno. So sorry that your dad is in so much pain. Hoping the morphine helps him. It must be so difficult to watch this with your dad after your watched your mum go through it. I suppose that you have time to decide yet on the wedding. Whatever you decide will be a difficult decision to make. Good luck.

Ludoole sorry to hear about your dh. You have so much on your plate I am absolutely amazed that you can even manage 3 hours a day. Good luck with the chat with the consultant and hopefully he can offer you something you all feel is worthwhile. Fingers crossed for you.

Thanks Dontbe

Yikes, Ludoole, it never rains, eh?

Thumbs up, though, on your DH's new chemo.

Sorry to hear about your dad's health, and wishing you all the very best.

Ludoole I'm so sorry I didn't acknowledge your post when I wrote mine. You really have got it tough . I know exactly how you feel about it all being down to you. In both my mum and dad's times of need you wouldn't know I had a brother and sister. But with your dear husband being ill you really deserve not to have any more heaped on you. I do hope the docs can find a potion that helps. All the best

The morphine is helping my dad, but it is affecting his personality. For one, his usual filter on making sure he is not being too demanding is off! But he is much happier, so that's good.

Nemno, i was just ranting and didnt expect anyone to acknowledge my post
New treatment starting thursday. Side effects sound horrific and dh will likely lose his hair, eyebrows and lashes
Dh says he will try it but if he suffers too much he will stop.
Im dreading it if im honest as he is getting awful mood swings when hes in pain, and the kids and i are tiptoeing around him when his moods are low...
Still the good moods are wonderful

Gosh yes, good moods give everyone a break and a lift.

We've been playing with dad's morphine dose. If he has enough to dampen the pain then all he wants to do is sleep (but in a jolly mood). He's gone from being able to drive and walk his dog on Sunday, albeit for short periods, to being an invalid in his PJs today. This is a bit sudden.

Ludoole i hope your Dhs treatment doesnt cause all the side effects they ve warned you about and i am so sorry about your dfs care falling on you.My dh df and dm have all been very ill with cancer and heart attacks and i know the strain is tough eventhough im not the main carer.some chemo s make the mouth sore so a baby toothbrush maybe needed.Everything crossed for you and your family :)

Whatis Thanks.
Unfortunately they had to stop chemo infusion halfway today as he had a bad reaction to it. No idea what happens now but its looking like its almost the end of treatment options....

Ludoole hoping that they can find another treatment option for him that he can tolerate. I know of someone who had a nasty reaction to chemotherapy, like anaphylaxis, there was an alternative chemotherapy that they tolerated and worked. Don't give up hope, there must be be something else he can try. Thinking of you both

Ludoole, I hope your DH doesn't suffer too many of the side effects. I know that pineapple juice is recommended to try and help avoid the sore mouth as it has some property that helps. Diluted perhaps as it can be strong.

Dontbesilly, sorry you've had to join our little group. I hated those first few weeks when I just cried my heart out. I'm in a bit of limbo now. Ddad is...ok. Prone to infections and in and out of hospital as he doesn't recognise when he's going downhill himself until it's too late.

He's bumped his car so can't drive til it's fixed. I'm not sure he's actually safe to be on the road, especially in those episodes when he's not feeling well, but is in complete denial of it or unaware. He will ignore medical advice for fear of being admitted to hospital. He was checked out after the bump and advised to see out of hours to be checked out as the paramedic didn't deem him needing to go to hospital, but wasn't happy with some of his stats. He ignored. Over-ruled the family members he lives with and didn't go. THe upshot of which was that when I went to pick him up from his respite care, he needed taking to hospital instead of home as he was worse by then. And then it was nearly a week before he could come home.

He's back to being ok. Somewhat depressed, as you can imagine, but medically ok in himself. We are out for a family brunch tomorrow as we are making sure that we do something he will like doing most weeks. Last week it was a meal out with his masonic meeting. This week it's a family meal. The only upshot of this whole mess is that we are spending more time with each other and appreciating him rather than taking those moments for granted.

and hugs all round.

charleydavidson that is good your df is doing ok at the moment.Mine is too apart from bone pain in his arm.My df has decided not to drive when the time comes he feels it wouldnt be safe.I am sorry your dfs car was hit.love to all on here .

I have not had chance to read through the thread as yet but i would really like to chat.

i live 2 ours away from my dad. my mum died from lung cancer in april and my dad was diagnosed with terminal cancer of the peritoneum on july 1st. i having been traveling to my dads with my 2 dds, oh and dog most weekend since. i have got a brother but the care is resting on my shoulders. during the week my aunt and dads next door neighbor are looking after him.

he has had an operation to remove some effected bowel and now has 2 stomas ( one redundant from previous bowel cancer and a new one) i am hoping he will have chemo and radio in the next few weeks.

he is currently in a lot of pain and may be going into hospice this week for pain management. he is having problems passing urine, pain in his back and his redundant stoma is also painful. he is on 10 mg or oramorph hourly and 60 odd mg patch as well as pregabalin. i am at my wits end to be honest. i have spent all day on the phone to his oncologist secretary, McMillian, district nurse and his GP. he told me tonight that he is at the end. i cant face it and i am hoping that its his morphine talking. i am speaking to GP and McMillian about upping his patch and progabalin so he is on less orimorph. it just knocks him out so he is not having a life at all

we are currently trying to buy a house so dad can move into our ground floor flat. we had an offer accepted last Tuesday and everything felt like it was coming together but after today i have decided that i am going to move him in with us when he gets out of the hospice. this means that there i going to be 3 adults, 2 dds and a dog in a 2 bed flat. i am hoping it only tempory until we move. me and oh are going to sleep in front room on one of those airbeds on legs.

i am sorry fro waffling on but it feels better to get it all out

Oh pud, that sounds hard. My df is in some discomfort and I hate to see it. I am dreading the time when it is severe pain that he's suffering with. I hope your df gets some help with the pain. We found that oramorph was not good for my dad, because it built up in his system as his kidneys couldn't cope with it and became toxic. He's also on gabapentin, which is similar to pregablin.

Feel free to waffle on. That's the whole point of the thread for me. Somewhere to share the highs and the lows and to just be able to say what you need to say. Especially the things that you don't think you can say to people in rl.

DF's car remains unfixed and I think that's a good thing. He just doesn't recognise when he's coming down with an infection and the first symptom that we notice is he becomes a bit confused. He's still home at the moment and says he feels well. He sleeps in his chair, which I worry about in terms of bed sores, but he finds it difficult to accept he needs a hospital bed and at least he has a mobility type arm chair that he can get comfy in.

One thing I'm sort of stuggling with is that I don't cry about the situation. I feel sad about it. I know that at some point there will be a moment when it all changes, but at the moment we spend time planning some things to do together and other times helping out at home and then occasionally doing hospital visits if he's in because of an infection. I've done the tears of 'poor me, my Dad's dying' and the tears of 'poor Dad, this is awful for him' and thinking about all the things he won't be able to do any more.

I do fear for what will come next and know that it's a waiting game really. Waiting for the next infection that will put him in hospital - which he truly hates and he's not the most patient- patient as a result. Waiting for the next symptom that will be a worry. Waiting for the next scan (if there will be one) and the news of where it's spread to now.

But for the rest of the time it doesn't feel real and I can't cry about it. He's here. He's uncomfortable but his pain is mostly managed. He's able to do some small things for himself and has friends and family that take him places which he can enjoy for a short time depending on his discomfort. I can't get it into my head that he's dying.

Sorry for the rather maudlin message. :(

Hi everyone, I'm new to the thread (the thread no one wants to be a part of, meant in the nicest way). I posted my story in chat one night and was directed here.

My Dad was diagnosed with colorectal cancer 2 weeks ago. Initially it seemed it was operable and I had a feeling my Dad might be ok. The day before the surgery, we met with the consultant who told us there were metastases in the liver. Ok, not looking as positive, but with specialist surgery and/or chemo I still thought Dad might be ok. So he goes in for surgery the next day and I get a call from the consultant asking me to go in. They found metastases over the peritoneum so didn't remove the tumour as Dad is now incurable. We have not formally had an appointment with the oncologist but had an informal chat and we are looking at a prognosis of around a year with chemo.

I am posting now mainly in agreement with what charley posted. While Dad was in hospital I was devastated, crying all the time. Now he is home, and back to his usual self just with the added complication of a stoma. I can't get it into my head anymore that he is dying and may not be here this time next year. Everything seems so normal.

Hi Balbidou. I did the directing and I hope you find us useful and supportive. Sorry you have to find your way here in the first place.

Hi Balbidou, sorry you and all of us are in this position.

I thought my dad wouldn't be here a year on from his devastating diagnosis but here he still is. And he is very stable again. The rollercoaster of getting his meds right is over for now and I have my dad back a bit. He is painfree and quite chilled, seems almost contented. He can even go out and about for an hour or 2. I took him for a haircut on Monday and a short walk with the dog yesterday. I know this is the lull and the ghastly sticker on the door to warn HCPs that he has a 'Do Not Resuscitate' directive is a regular reminder. We have my DS's room emptied and ready for the hospital bed and now we just wait and live as best we can.

The great grief so far was through the whole 4 month diagnosis process last summer, that was so much harder emotionally than this. That may change but I experienced the same with my mum so possibly not. She was very ready to go for the last few months and the nurses had to convince her that they weren't actually doing anything that was delaying the end. But Dad isn't ready, he wants to do so much more and it is heartbreaking hearing his plans.

Hi balbidou and welcome to our group. Nemno that makes me feel sad to read your dad is DNR as mine agreed to this in the summer too when he was ill.It is practical however seems a step nearer the inevitable.Dad will havve hosp bed in their dining room when he needs one.His hospice nurse referred him to the gp then x ray as he had bad arm pains which maybe cancer mets as he has them in his bones and spine.He looked pale today however said the pain had subsided today after a week.They bought some bulbs for the garden and Mum joked he wouldnt see them come up..the shop assistant looked shocked until mum explained his situation.I think it was a bit insensitive tbh.They cut down the fir tree the xmas lights went on too which seems a bit sad.I havent told my new boss how ill df is.It is nice just to have the escape without pple knowing much really.

Oh my goodness, whatis... I'm a bit at the bulbs joke. We have a lot of black humour to cope with the situation though.

Dad has a hospital bed, but getting him to use it is a challenge as he's depressed by the whole thing and he hates the thought of needing the bed in the first place. He's poorly again. Another temperature and another infection. I hate it. Every time he's sick it's a reminder that he's not got long and I wonder if this will be it.

We have had a hairy few days. I have an appointment with dads gp tomorrow to discuss DNR. His progabalin has been increased from 100 mg to 300 mg daily. I am hoping this means that his breakthrough pain will decrease and we can reduce the oramorph intake.

My auntie is going away for a week on Wednesday do I am going to stay with him for a week. The distance between us is so hard.

He is having MRI and CT Monday. I am dreading the results. He has deteriorated so much this week

greener and pud and hugs.

Dad still quite stable so I should be having a peaceful time. BUT my DSis with SN got hit by her boyfriend yesterday and all hell has broken loose with the rest of my family. But we are trying to keep this from dad, he thinks that he is leaving my DSis all sorted and her life is all organised. My brother thinks she probably annoyed her BF and we shouldn't over react! FGS Her GP and safeguarding social workers think otherwise. Crap crap crap. And I am so unreasonably annoyed that she always grabs centre stage (yes I know this is not her fault but I am a horrible person) and I WANT and NEED to focus on Dad. My Bro has let everyone down and just stays away. I ring him once in a blue moon but today he accused me of trying to make him feel guilty. Well derr, I need help here. But he isn't interested.

Hi greener. My Dad's never been told what grade or stage, which is frustrating but ultimately doesn't change anything. He went from 'you've got a good chance at this trial of chemo being the best' to 'discuss surgery' (which would have been a very radical and life changing surgery) to 'chemo isn't working' and 'you are inoperable' in quite a short time. He himself is frustrated at how little he has actually been examined as he doesn't feel that they know exactly what is going on with him. On top of that, he minimises everything as far as he can, particularly when talking with medical professionals as he's scared of being put back in hospital when he has any symptoms. Could the lack of communication with you stem from their being in denial I wonder? It was only when ddad got his rather bleak prognosis that he called us all round to tell us at once.

pud - dnr sounds a tough thing to have to contemplate, never mind activly discuss.

Nemno - you've got a lot on your plate there! It never rains....
Stuff your bro trying to make you feel guilty by accusing you. Or he could be feeling extremely guilty already which promotes the outburst. My youngest sis lives at home but is least involved in things - or was until recently when she's been made official carer (and paid as such) and still she can be very much not in evidence when you go to visit. Too wrapped up in some of her own things and also having her head firmly in the sand.

Hugs and all round.

Happily, here, what appeared to be an infection and dad getting poorly again the other day has blown over. I went the next day and he was much brighter, more comfortable and not feeling ill. THe doc visited and confirmed it could have been a bug or could have been a reaction to his a-bs.

And now Dad is exhausted again. I've been googling and it looks like his stable period was due to the steroids (improves energy levels and appetite) but this can only help for 4-6 weeks. He is on a low dose and it can be increased says the GP, does anyone know if that would re stabilise him or if it's a one shot deal? GP said he prescribed it to shrink his swollen liver which was causing pain (he has liver cancer, HCC) but I can't find anywhere that states dexamethasone has this effect. Anyone heard this?

A word of caution; Power of Attorney takes 8 weeks to go through according to their own site( we are at the 4 week wait point now), this is not hugely helpful if the afflicted person thinks they will wait until it is necessary before signing it.