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. :(

Thanks, Nemno. I'm quite calm about the thought of it at the moment. I think I'm as organised as I need to be, although I do need to compose the message I want to write on the little card that goes on the funeral flowers.

Guy, it's hard to post about something so difficult, but I've foung it useful to have people who know what it's like to share with, so I hope we help.

I totally recognise the waves of anxiety amid things otherwise seeming quite normal. I do hope that your DH tolerates the chemo well and that it is effective for him.

Charley, you and your family will be in my thoughts today xx

jenniferyellowhat i am sorry about your Mum.I know what its like to have" last"s.when Mum was diagnosed in 2007 with stage 4 cancer in my head we were on last xmas and birthday then miraculously she responded to treatment,in2012 when dad was diagnosed with aggressive advanced cancer i feared the worst,Now all options have run out for him and he is in his last months or weeks of his life,This journey isnt easy to watch is it ?i know we ve been v lucky so far.I hope your Mum gets put on some trial drugs.
Thinking of you today Charley, xx

Well, today was hard. The church was full, with standing people at the back and I was so proud to see how many people Dad had meant enough to that they came to his service. When all those voices were raised to sing the first hymn it was very moving. I struggled to join in. My sister and Dad's brother spoke from the heart in the service and everything went super-smoothly. It was still very hard to look at the coffin (topped by an amazing spray of flowers) and think that Dad was in there, but having seen him after he passed did help remind me that he was no longer 'there' really. I cried more tears today than I have in the last week or two I think.

And now things go on. I shall miss him so much.

I hope you don't mind if I stay on the thread from time to time to see how everyone's getting on.

aww that made me feel emotional and i didnt know your dear dad.Of course you must still come on here it is your thread after all and thank you for starting it.Also you can guide us as we all carry on this journey that we didnt want to be on.
today i planted hundreds of bulbs Dad gave us all when they did up the garden.All of his children took some.I put mine in lovely blue pots and when they come up Dad may not be here but i will have a constant reminder of him (he loves gardening).dad sounds cheerful and in less pain although its visible he is ill from weight loss on his face to a general paleness.
Apologies if i cant reply to everyone im working more hrs at the mo and so is dd so very busy we are all like ships in the night.

Charley you must still come on here, and I would also like to say thanks for starting this thread, it has been such a huge help having somewhere where to share things.

Whatis that is lovely about the bulbs, really touched e as y Dad also love gardening. Pleased that he is in less pain.

Will be going to the hospice tomorrow to visit Dad, had the hard task of telling my DD's that they will probably not be able to see him as he is too poorly. Will see what day he is having tomorrow but they are just too young to be able to handle seeing any hallucinations.

Our visit went so well yesterday, Dad was very sleepy but knew me and Mum were there so we invited DD's to go see him and thought it would be a case of saying hello, give him their love and say goodbye.

The moment he heard them he came around so quickly, starting chatting away, making jokes with them it was very touching to see and a special moment.

Was very proud of my girls, youngest dd didn't seem phased at all, it seems she just looked past how ill he looked and saw her Grandad, my eldest who understands more, just said it was hard to see him like that but it would be much harder to not have seen him.

That's a lovely visit for them to remember, groove.

I'm feeling so sad. We tried to get mum on a trial at the Marsden in Friday but for some reason we ended up seeing phase I researchers whereas what she needs at this stage is a phase III drug to have some real hope of it extending her life further. It's now 5.5 weeks since her last set of results and quite a few more than that since the scan itself because she keeps being overlooked in the system If there is anything - and to be honest it shouldn't be that hard to find out, the cancer has had plenty of time to progress in the meantime.

Mum has been quite poorly with sickness every day and the weight loss you'd expect from not being able to eat. Her cheekbones are jutting. She's well under 8st.

Tonight I can't help thinking about how empty her house will be when she goes. I'm dreaming if securing a job locally so that we can keep it and live in it as our family home, but it won't be the same.

My mum was so strong, talented and determined. She's a shadow of herself now.

Sorry for the self-indulgent post.

groovejet im so pleased your dds perked your df up.The same thing happened to my nan when i tookmy baby dd to see her when she was v ill.
Jennifer i am so sorry nothing has progressed for your dm regarding trial drugs.we had the same frustration when when dfs cancer returned and no chemo was given for MONTHS.cancer research told me the cancer would be knocked back anyway by the chemo so the delay wouldnt make much difference,It is so hard to watch our parent deteriorate isnt it?

I have read everyone's updates and am so sorry you all have it so tough.

My dad really makes an effort for his grandkids and friends (and his GP). What pisses me off is that he takes me so much for granted that he loads more on me in order to treat them like honoured guests. Daughters are just there to serve their menfolk in his world, as his mother and my mother were before me. He doesn't have the mental power now to resist his ingrained sexism.

This week dad really is deteriorating mentally but physically is much better than any time in the last 2 months, and much less sleepy. I agreed that he could die at home, what I never considered was that I would be at his beck and call for 18 months so far(his prognosis being 4-6 months). I had always promised myself that I wouldn't be a martyr to a parent with dementia but here I am in a very similar state as my poor aunt with my senile gran. My mum and dad were very critical of her not putting gran in a home. I so want my life back. And of course I keep thinking well it won't be for very long in the scheme of things, so just keep going.

Sorry for the pity party.

Nembo, that sounds tough. My DM will shield me from the worst until she can't bear it any longer. She knows that I, as her only daughter, will be the one to look after her at the end but she would never take that for granted. I bet my DF would though. It must make it all twice as tough that your care is simply expected and not appreciated.

Good news though - Marsden have been in touch with news of a specialist phase II trial so hopefully she'll qualify

Dad leant on us for support for all his medical appointments and talked a lot about things. He was happy to moan and groan whenever he had to put up with medical intervention and hospitals as he hated being there. It made visits hard work when he was in there, but I tried not to be too worn down by it.

He kept a lot of his thoughts about what he was going through mentally to himself though when he was at home. He was helped by the hospice day care thing he went to weekly where he talked to their advisors and the councillors too. He did shield us from how difficult he was finding things really. :(

When we were told he didn't have long left, we (my sister and I) visited all the times we could. After the first week, I started to feel so guilty as I was starting to flag and couldn't imagine keeping up the pace (that we had admittedly set for ourselves). I felt like I needed to be there both for me and for him, but also that I was neglecting my other family. Instead of being there 3 times a day as I had done all week, I dropped to 2 visits on the Saturday as I had other previous arrangements. And I'd thought about only going for one visit on the Sun. But in the end he passed away the Sat night and it suddenly all the worry about visiting was over. I think we don't realise how difficult and draining the whole process of being there for someone who's poorly actually is until you are doing it day in and day out, week after week. I had a few days of not actually knowing what to do with myself once the routine of visits disappeared.

If it is a pity party Nemno, then you have good company. :)

Glad there's progress Jennifer. I hope it brings some benefits for your Mum.

Nemno that is so mentally and physically tough for you,glad your df is a bit better though physicallly,Luckiily my df has been able to drive 25 mins away to my dbs something he hasnt done in weeks so the transfusion has worked wonders.I am not sure why he didnt have one before.DM was able to go out too which is lovely for her in the house for weeks with him watching him struggle.I hope this week is as good as it can be for everyone .:)

Fingers crossed for your mum Jennifer. Groove, whatis, Charley* for you all.

I just met Macmillan nurse for first time, she is lovely but can do nothing as dad won't go to day respite, have a befriender at home, have someone cook him a meal once a week, have anyone else walk his dog or generally let anyone else do any of the things I do. We are managing fine apparently. After the visit he didn't tell me she had offered these things!

Good news about the drive, WIFTM. Great for your mum too - she must have serious cabin fever!

Nemno, can you take Macmillan up on their support for your own sake?

My mum is 60 today and I can' see her. DS(3) has a nasty cough and cold which I've no doubt I'm incubating and so an probably already contagious. If she gets I'll now she won't shake it off easily and might miss out on the possible drug trial. It absolutely sucks but it would be selfish to go. I dropped her pressies off earlier though so at least she's been a bit spoilt.

For me, the crappedt thing apart from the cancer itself is not being able to spend enough time with mum. Between risk of illness and working FT I just feel that time's slipping away.

can't see her

Jennifer, I am sorry that you weren't able to be with your Mum today, but good news about the hopes of a drug trial.

Nemno that sounds incredibly tough for you, can you speak to Macmillan yourself they are there to support you as well.

I managed to beg for a day off work tomorrow to visit Dad, we will go Saturday as well, just feel guilty that I can't visit more often.

Nemno, Macmillan were clear with us that they are here for the family as well as the 'patient'. They were happy to talk through lots of theoretical options with us so we knew what was a possibility before it happened. They just happened to come once while Dad was in hospital and we grabbed the chance to talk to the Macmillan lady. She was very helpful.

It's a shame your Dad won't consider day-respite. Mine was very against it. But somehow the Macmillan lady convinced him to go and have a look around. Then he went every week for the day. He had the company of the same people each week, a lovely dinner and physio/doctors/therapists on tap who would arrange to see him without any fuss or proper appointments.

You are all so kind, thank you for responding. I get that not being able to visit as often as you'd all want is incredibly hard and complicates your own home arrangements hugely but good for you for wanting to and making that effort xxx

The Macmillan nurse was lovely and she did offer me a massage at the hospice but other than that was at a loss. But talking and getting a hug was worth something too.

jennifer such as shame about ill dd however you did the right thing my df had a bad infection after chemo and had to go into isolation in hospital.Nemno groovejet and charley i am thinking of you all, x

Just had the call to say my Dad has 24 to 48 hours, I knew it was coming but nothing quite prepares you to be ready.

My lovely, lovely Dad, at least he will no longer be in pain or have to suffer through the indignities of this horrible disease.

I was expecting it to be soon, my Mum had a lovely visit with him Sunday he was alert and ate properly for the first time in ages, I had heard about a sudden surge before the end and suspected that was what it was, but at least my Mum had that time with him.

Now got to sort a time off work and someone to have my daughters, going to go tomorrow to say my goodbyes xxx

Sorry to hear this groove. I'm sure your parents will appreciate you being there .

Yes, that surge of energy just before the end happened with my mum too, it was very odd. She even wanted to speak to her brother on the phone (he lives abroad) on the Saturday having been barely conscious and very confused for weeks. She died on the Tue.

Take care xx

Sorry to read that, Groove. My thoughts are with you. It's a difficult time and nothing prepares you for going through it. I have flashback memories to some of the times in the last week and although I was glad I could be there, it was still one of the hardest things I can do.

I'm glad that he had a brighter day on Sunday and that your Mum had that time. My Dad picked up for a day in his last days too and it meant a lot to those who visited.

I got signed off work by my GP really easily due to bereavement and it gave me the time to be with Dad, then deal with things afterwards too. I hope your work are kind to you and that you can be with him.

xxx