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. :(

Jennifer Let the hospice staff know, they can help with limiting guests' time. Your mum's interests come first.

As to whether anything is ever said explicitly, I think the HCP's usually take their cue from the patient. If the question is asked then they will answer but plenty of people don't really convince that they want to know. Many HCP's don't give a time prognosis because , honestly, they can be very inaccurate.

So sorry to read such sad news, my condolences. Been lurking for a while. My dad was diagnosed with oesophagul cancer stage 4 in August, palliative treatment only with hopefully '6 good months'. We are now into February, month 6 and dad is still generally okay. He has had stents fitted and will only eat puréed food. He has lost a lot of weight but is in no pain. He is v tired and has pretty much stopped doing anything at all, not even the crossword. As a result he is listless and can't sleep and is constantly shouting for my mum, physically and mentally he has no other problems, so even though he can do things he seems to be choosing not too if that makes sense? Has anyone else experienced this? Any thoughts or advice to help my mum, without upsetting my poor dad would be appreciated.

Jennifer I am pleased your Mum is having hospice care, they really do a wonderful job, all the staff and volunteers where my Dad was were lovely.

Sherbetpips is your Dad on morphine or similar? Morphine made my Dad tired and confused at times, and it was quite frequent he would call out for Mum to do something in the middle of the night.

Hi groove no he isn't on anything as he has no pain luckily

Sherbet, It's good that your Dad has had his 6 months and is still going OK. My Dad was told months, quickly revised to 'months to a year' by the consultant - I think because of Dad's reaction to the news. And 4 months later he was gone.

I think the knowledge of what is happening is obviously very depressing. Dad had looked after Mum for years and years, doing all the running around. He definitely withdrew into the roll of being cared for rather than being the carer. He got someone to take him to every medical appointment. And Mum took charge of all of his medications, to the point that he didn't really know what he was taking as he didn't need to because Mum sorted it. We encouraged Dad to go to the local hospice. THey had a day care programme where he could go, get any medical help he might need, have physio and enjoy a slap up lunch and time talking to people in similar situations. It took a long time to get him to agree to going, but once he'd gone, he wished he'd started there earlier.

Infections made Dad tired and very confused every time.

Hi sherbertpips sorry you have to join us but welcome.So sorry your Dad is in this situation,My Dad was diagnosed in 2012 and was given a year last March so i know how you feel.My Dad was given steroids when he couldnt eat much and kept falling asleep,,,he is like a new man and what with their 50th wedding do in 2 weeks he is organising photos to put on a pin board which i think has given him a focus,
My dad has lost 2 stone however being larger before it is nt so noticeable to others.

Hi all, I will join you if that is ok. I have read the thread for a while and my thoughts are with you all.

I have started another thread where I got some lovely support. My dad has multiple brain mets secondary to lung cancer and has had 2 lots of whole brain radiotherapy, which is quite rare. The usual prognosis would probably have been 9m or so so he has gone over that. There isn't anything else they can do/give and he is on steroids (massive side effects as been a year now) and a variety of other meds to help with the side effects and seizures.

He seems to have deteriorated since Christmas, and now sits in a chair all day, just occasionally shuffling to the kitchen or loo. He also started having some sort of collapsing seizure but thankfully hasn't for a week.

I live 6+ hours drive away, or a flight, and have 3 small kids so it is a challenge and I feel awful that I can't be there in person more to give support to him and my mum.

Welcome, Nanny. And sherbet, to our little group. It's nice to hear of people who have made and exceeded their prognosis. Sorry to read of those who find it difficult because the distance gets in the way of their chance to be able to visit and help when they want to or are needed.

We have experienced the horror of unrelated infections. Dad keeps getting thrush in his mouth and throat which pretty much closes everything up, he says nothing, gets really dehydrated and stops eating. This then leads to delirium. Despite having been hospitalised a few times and begging them to give him a drip to rehydrate him we always have days of tests (even a lumber puncture last time) before they put him on the drip and medication and he gets miraculously better. We have to visit the doctor each time for the medication to prevent it as they will not do a repeat prescription. When we asked why we were told it could damage his liver - yeh don't really think that's his biggest problem right now! Scary thing is even though he is clearly suffering delirium when admitted they will do nothing to help mum keep him in the hospital when he is screaming and shouting and trying to get out. Very distressing. Even the Macmillan nurse couldn't help.

That sounds difficult, Sherbet.

I learnt quickly to tell the doctors that if Dad wasn't making sense or that he was twitching, that he often presented like that if he had an infection. Sometimes that meant they got to the bottom of what was going on quicker, especially if he was at the hospice that day, but mostly it resulted in hospital stays. And yes, Dad was a sod for feeling rough and not telling anyone. Even to the point of trying to carry on, inc driving, and having 2 separate bumps in his car. Luckily, neither involved any other cars or people, just a wall or a railing. Each time, he would be down with an infection the next day or two.

I kept saying that we wouldn't lose Dad to his cancer, we'd lose him to infection. I was wrong though, he ended up with malignant obstruction and I wished by then that it had been an infection that had been his final straw.

With today being World Cancer Day just wanted to say thinking of you all on
here xx

I wrote a post in the early hours while watching over my mum, but couldn't bring myself to submit it.

She died this afternoon. I hated the fight metaphor before but she genuinely did fight it as long as she possibly could. Not in a figurative way though. She actually tried to breath for as long as she could even though there was no way her heart could pump the oxygen. As a little girl I used to think I would just decide not to die, and mum and I made a pact that she would test that theory.

I also now firmly believe that she is gone - that there is nothing left of her but memories and the many things she made. She was a talented woman. She promised she would do her utmost to reach me if there was anything after death, but all I feel is her absence and relief that her struggle and sadness is over. Time for us to take it on now.

Hello Sherbet and nanny. I'm sorry you have to be here

So sorry Jennifer I do like the idea your mom was testing the theory.... It's coming up to a year since I was in your shoes and I wish you (and everyone else on the thread) lots of love

My condolences Jenniferyellowhat.I am glad you were with your Mum when she passed away.

I am sorry for your loss Jennifer, I am glad you managed to be there with her and I hope it was peaceful

I'm glad you could be there when your Mum pass, Jennifer. I had wanted to be there with Dad, but it wasn't to be and I regret that. I do love the pact that you and she made. I rarely have dreams with Dad in, but when I do I'm always grateful and feel that I've had some time with him.

Jennifer I am so sorry for the loss of your Mum xxx

Thank you. I feel sick with grief and disbelief even though I knew it was coming. I think the adrenaline is wearing off, having had to control myself to be strong for her though the weeks in hospital.

I think there's a definite 'What now?' feeling when you've supported someone through such a traumatic time (for you and for them). Take care and look after yourself. xxx

for you, Jennifer. So sorry for your loss, but glad that you were there at the last.

I hope your mum gets on ok today Livin

We are still waiting to get a date for the alarm system and for the ot/physio/mobility type person to assess what aids he needs.

I hope everyone had a reasonable weekend.

Jennifer thinking of you

thinking of you livinlavida and i hope you Mum gets on well with chemo,Mum and Dad had it twice so i know how you feel xx

My dad had the alarm people and the mobility assessors turn up today. They were supposed to ring my mum before hand but didn't so she was at work. He also had the nurse in to redress his arm.

My mum got in from work and sent me a message to say that he had told her he had been on her exercise bike!! He can hardly make it to the kitchen from the living room and they live in a small bungalow and is house bound/almost chair bound. I have no idea what possessed him to try and get on an exercise bike. I am surprised he either didn't drop dead as his breathing is awful, or fall of it and break some more ribs. My mum was ready to throttle him when he told her.

I don't know whether the brain tumours are affecting his sensibility (although he still tries crosswords) or whether it is just serious denial/lack of awareness of his performance status.