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. :(

Dad died today. He stayed in his own home throughout. It was peaceful at the end but really hard on both of us for the last 6 weeks.

Take care everyone on this thread x

Oh Nemno i am so sorry.i am so pleased he was able to stay at home though xxx

Sorry to read your news, Nemno. Those last weeks are hard and I'm glad your Dad got to stay home and that it was peaceful. Look after yourself. xx

Jennifer, I have my fingers crossed for your Mum.

Thank you Charley and whatis. I registered his death today and feel I'm doing well with all the admin stuff. This is very different to my mum dying when I had to guide and support Dad. I just miss him terribly and can just focus on him and my loss as I don't need to worry about anyone else. I'm fine with all the big things eg the registering and starting funeral and probate processes, it's the little stuff that gets me; his pajamas in the laundry, his food treats in the fridge.

Take care everyone on this thread x

Oh Nemno that must be hard all the little reminders,I am thinking of you too jennifer.
Mum messaged to say dad is too ill to go abroad for her birthday and their 50th anniversary so they have booked for 40 of us to have a meal with them at a lovely local hotel,Mum saw her onco and is ok back in 6 months time if no signs beforehand.
Dads legs have stopped hurting too much this week and he has driven as no need to take ooramorph,The hospice nurse and gp are doing regular blood tests,
I really hope he is ok in 5 weeks as it will be a day i never dreamt we would see with all adopted and foster kids and 13 grandchildren.
I am thinking of you all on here and hope you are all coping at the stage you are at xx

I'm really sorry to hear that, Nemno.

Livin, it's hard isn't it? Mum is so ill - each time her infection makers come down she seems to contract another infection so at this point she's not well enough to go to the hospice. She has had litres and litres of fluid drained from her lungs - more than four altogether. I could never have imagined the body could produce such quantities. I worry about her being in hospital as she can't attend to her own personal care. She won't make a nuisance of herself by asking for help either, so she'll wait until I get there to go to the bathroom. I just want her to be comfortable but I know she isn't.

My sister has an op scheduled for brain surgery in a couple of weeks. Despite begin told not to she's been googling and found this

www.everywhereist.com/20-things-you-can-expect-after-brain-surgery/

She found it helpful, and I have too. Although the doctors have been superbly helpful in explaining procedures etc, they haven't gone into the practical aspects of how to cope.

Posting in the hope someone else finds it useful.

How are things jenniferyellowhat and Nemno and livinlavida ? Sorry about your sister ollybjolly what a worrying time for you all.

I understand your anger, Livin, and I have the opposite: anger for every cigarette she didn't smoke. Crazy that someone exposed to none of the usual risk factors should end up dying at 60. My dad, on the other hand, used to smoke and still drinks like a fish but is in perfect health. No rhyme or reason.

im sorry livin lavida and i can see where you are coming from.I feel fed up that both my parents ate what they liked and my husband too and laughed at me watching my weight and teased me for yrs now the husband has has a heart attack 2 yrs ago and both parents have advanced possibly lifestyle related cancers,They stopped smoking and rarely drank though.
How is your Mum jenniferyellowhat ?

I'm so sorry to read these updates.

Dad's funeral was yesterday and I was pleased how it went.

But on Monday at 1.30 am I was woken by a call from the hospital that as my uncle had listed me as next of kin could I come in urgently as he was critically ill. I stayed till 6.30, got home for 2hrs and was called again to go back. Upshot is that antibiotics helped him over his chest infection and the imminent crisis but that by Tue it was apparent he is riddled with cancer and was put on end of life palliative care. So since Monday I've spent most of every day/some nights sat by a dying man watching him struggle to breathe, again. It's a very sick joke. He has had no fluids since Tue. Nobody can tell me this is a better way than letting nature take its course on Monday. The HCP's did know the extent of his cancer then.

And again there is only me doing anything, if my siblings weren't going to help with their own dad you can imagine how much they'll do for his brother . We are his only family.

I did ask the caterers yesterday at the funeral if they'd do me a 2 for 1 deal :(

Sorry I haven't been on here in a while, have been thinking of you all just a bit wrapped up in my own thoughts lately.

Nemno I am so sorry to hear about your Dad, and then your Uncle, you have my deepest sympathies xx

Nemno, sorry it's so tough for you but I like the dark humour of your 2 for 1 catering quip.

Mum is increasingly anxious. The oncology and respiratory teams have just been fantastic, as has the palliative nurse specialist. She was prescribed diazepam yesterday to help to calm her, but it took until 6:30 pm for fucking useless pharmacy to dispense it for her. Between them they are managing a move to hospice for her. I've no idea how long she can survive but I'd love to think she can get home if only for a day or two.

I've spent many, many hours by her side. I'm a bit worried about how I'll cope when she dies. I can't see me going back to my job but I need to be more available to my DCs. I will just want a sedative and sleep I think.

Thank you livin Jennifer and groove for your care xx

My uncle died in the early hours of this morning. I was all he had in the end but my mourning and sadness is with my dad. I so don't want to do the after death stuff for uncle now. I strongly feel I need to grieve for my lovely dad.

Well done though, Nemno, for doing your best by your uncle

Mum is in the hospice now. So much more personal and relaxed than the hospital.

I'm glad your mum has got to a hospice Jennifer, if there is any comfort in any of this I think that a hospice is the best place to get it. Your mum will now get the very best care, in a timely fashion, and you will be supported. But it is hard and I send you deep felt wishes of strength and peace for your mum. x

Jennifer im pleased your Mum is being cared for in a hospice where i understand they are geared up to helping the patient and family.
Nemno i am so sorry about your uncle,how sad for you all.Thinking of you,

I'm glad your Mum is having hospice care, Jennifer. I think they do a wonderful job. We were given a side room for Dad in the main hospital and were allowed to come and go as we pleased and spend as much time as possible with him. They were excellent with that and his pain relief and we didn't want to disturb him and cause him discomfort, so we didn't move him to the hospice when we could, but I sometime think we should have.

Livin, it's hard waiting for results. We didn't realise Dad was as far down the line as he was because, at his last consultant appointment, when he'd had scans because of bowel discomfort, he was asked if he wanted to know how things were going to progress. No, he told them. So they talked about other things and he wasn't told that basically, the cancer had spread everywhere in his bowel/bladder/digestive area. He had weeks left and didn't know. When he was finally admitted to hospital, he had days left and din't know. That was a kindness, I think. He did say things to Mum that gave us the clues that he had an idea of what was going on, but he would have been so depressed if he'd known exactly what was going on. We were cross at the time, but in hindsight, I'm glad the consultant gave Dad the choice in the knowledge he was given.

And there, I've gone on too much about me. Again. Apologies.

And to all going through this.

Speaking of prognosis, to my knowledge apart from one consultant during mum's time in London, no one has explicitly said she's dying or predicted a length of time. It's difficult in that it's easy to be lulled into a false sense that she might get better. She was told that she would need a performance status of 0 or 1 to take part in drug trials but that at that point she was a 3 (prob 4 now). I don't think you come back from that, do you?

I'm with mum 6-10 hours a day, depending if it's a school day or not. It's lovely to be able to spend this last bit of time with her. We're struggling a bit with some people visiting for hours on end now she's in the hospice. It means she has to signal so I can ask them to go and make tea while she goes to the loo, and she's battling to stay awake because she knows she looks deathly when she sleeps. I wish people could be more sensitive. As it is, I'm going to have to say it outright and make myself unpopular - I have somewhat difficult relationships with the people who are doing it already - but I will do it for her. She is making herself breathless and anxious trying to explain to them that she needs ten to leave, but they don't listen 😡