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Life-limiting illness

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A thread for those supporting relatives with life limiting diseases.

778 replies

CharleyDavidson · 13/07/2015 19:42

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. :(

OP posts:
nephrofox · 21/12/2015 22:38

Place marking for a day I have the energy to post full story

Hugs to u all

groovejet · 21/12/2015 22:56

Hope you are ok Nephro xx

CharleyDavidson · 22/12/2015 00:42

Welcome, nephro. A few have lurked until they've had the time or strength to post their stories (if they wish). We are hear to lend an ear when you are ready to post questions or experiences. xx

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Beeswax2017 · 22/12/2015 10:04

This reply has been deleted

Message withdrawn at poster's request.

groovejet · 22/12/2015 12:14

Oh Livin, you are far from being the worst daughter, if you were you wouldn't be worrying so much.

You are doing the right thing as those few holiday days you have left may come in far more useful at a later date than attending this one appointment.

groovejet · 22/12/2015 12:26

Dads funeral is tomorrow, he will be getting a good send off despite how close it is to Christmas.

Been a rough couple of days with the last minute organising, hard pat was going through photos to select some to display at the service, found some lovely ones but wish I had taken so many more.

In case I don't get a chance to come back on here before Christmas I just want to wish you all the best at this time, whether you are facing the first Christmas without a loved one or dealing with the possibility of a last Christmas, my thoughts are with you and on Christmas morning I will be raising a glass to Dad and to you all, thanks for the amazing support this thread has provided xx

Beeswax2017 · 22/12/2015 14:14

This reply has been deleted

Message withdrawn at poster's request.

whatisforteamum · 23/12/2015 10:44

teary eyed thinking of you groovejet so incredibly close to Christmas.I hope you can celebrate your dear Dads life and that everything goes smoothly.
I am of course thinking of you too Charleydavidson this first christmas without your Dad.welcome to our newcomers :)
.Dad enjoyed his meal at my new workplace.He has had his ooramorph for pain and drove on sat!! Mum was angry of course.He thinks he will buy some fresh veg for xmas today.Weird to think it will be his last xmas as ive thought it before when they were both on chemo 2 yrs ago.
Myheart goes out to you all and i know im so blessed he is here today with no clue how much longer we have.I will be thinking of you xmas day xxx

CharleyDavidson · 23/12/2015 23:11

I hope things went well today Groove.

Flowers

We went to visit the hospice where Dad had weekly respite once a week. Donations were made instead of flowers at his funeral. That amount, together with various cheques donated by the different lodges that he attended amounted to £1500 and we went to give that to the hospice in his name today. We were made to feel very welcome by them, as always, and I'm glad he had their support.

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JenniferYellowHat1980 · 25/12/2015 21:08

Groovejet, I'm sorry to read that you've lost your dad. I'm really sporadically using this thread when I think about it, so I'm sorry not to have said so earlier.

Livin, I share some of your feelings of not doing this well enough. I work ft and have no flexibility to use annual leave so I just can't be around for appointments.

This has been the hardest day. My DM has slept for most of it. Her mouth is so sore she can barely talk. Her sister and family took it upon themselves to spend Christmas here this year, because without saying it we all know it's her last, but it's been difficult watching her suffer as we all try to sort and eat dinner. All she's managed is jelly, ice cream and water.

I stupidly suggested she make my DCs some bunting a while back, and of course, through all her pain she's done it and it's beatiful. She's made DS kites complete with ribbons and DD bejewelled butterflies. It's absolutely lovely but I'm going to think of how hard she tried to get it done when she really couldn't manage.

My grandad has been here - he's getting senile and frail himself but has cried about mum almost uncontrollably. Her DP (who doesn't love with her) is a tower of strength but my cousin caught him crying earlier.

She has an appointment next week to see about a switch of drugs but my feeling is that the scan results won't be good enough.

In the meantime, as I said before, I'm just feeling awful about working so much, and with young DCs and my house a disorganised tip, this has been one of the first times I've seen her this week. My priorities are all wrong. I think I'm going to have to hand in my notice and consider taking sick leave to be with her and also still have time for my family. I have to work until April so it's the only possible way (just five days compassionate leave). How do people do this?

whatisforteamum · 26/12/2015 22:40

Jennifer i would ask the gp to sign you off as they can do fully off sicknotes and reduced hrs for pple like us.
It was lovely to see dad xmas day though we all know its his last tbh.sadly he was in pain and struggling to get up and walk.we arrived 7 ish as our dd worked all day.We took some photos as dad is a keen photographer.
I worked today and dh said the hospice nurse was there when he went to change a light bulb.Must be fairly serious for him to see her boxing day.My heart goes out to you seeing your dm suffer Jennifer.I know what you mean about working and dcs and worrying about our parents,xx

JenniferYellowHat1980 · 30/12/2015 21:35

Thank you whatis. I hope your dad's holding out. The last Christmas is proving to be tough.

We trekked to London today because mum is supposed to be taking part in a drug trial but the scan threw up a massive lung infection and she's been admitted for the foreseeable Sad

I'm really pissed off with my three adult brothers. They're leaving it all to me. Trying to persuade one of them to share the burden and travel to London to visit her is proving impossible.

whatisforteamum · 30/12/2015 22:13

Oh no that is awful.luckily we have several of us doing different errands.i hope they see sense and help out soon,Meanwhile i hope your Mums infection clears up so she can hopefully start a trial drug.

whatisforteamum · 30/12/2015 22:43

How is everyone coping ? TBH im dreading NYE and NYD.The whole week has flown by and ive been busy working,Im working the next few days but i cant help thinking how weird it will be being dads last,nr yr.I hope he makes it to feb for their 50th anniversary,Thinking of you all on this thread.

CharleyDavidson · 30/12/2015 23:40

Oh, Jennifer. I hope your Mum responds quickly to treatment for her infection. It's horrible enough to be dealing with the main illness, never mind the insidious infections that creep up out of nowhere it seems.

Christmas was weird without Dad. We remembered him fondly at Christmas dinner. Noone was talking about him, but I did tell Mum he'd have been proud by the dinner she managed to put on for the family. And I cried about missing him later.

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JenniferYellowHat1980 · 31/12/2015 19:17

Charley,I thought about you and others who were spending their first Christmas without a parent on the day. Isn't it strange to think that most people are having the usual, light-hearted family Christmas (or so it seems) while some of us just can't enjoy it for what it is this year? Next Christmas is unimaginable - mum puts the whole thing together and without her I don't even know if me and my DBs will have lunch together.

We're doing absolutely nothing for new year. DH and I are both feeling rough and flat and luckily the DCs are too young to miss a fuss. I just want to get some sleep and prepare for the days ahead.

I will never, ever take anyone else's happiness for granted at Christmas again. It's easy to feel like you're on your own when the whole world is celebrating.

JenniferYellowHat1980 · 02/01/2016 22:35

I can't cope. I've just got back from London (4hrs each way). I haven't seen my DCs at all and I go back to work on Monday. I haven't had time to do any planning and I know I can't take the behaviour. I know I'm going to completely lose my shit.

JenniferYellowHat1980 · 02/01/2016 22:36

The behaviour of the kids I teach, btw.

whatisforteamum · 03/01/2016 11:06

Just seen your post.See your GP tell them what you ve just said and im sure they will sign you off,mine did last summer when df was really ill.
you are human and can only take so much,Coping with your Mums illness is hard.
im a workaholic however im sure i will get signed off when dad gets worse.
Only new yrs day (hard enough with df barely able to walk and thinking he wont see another new yr day one of my colleagues who is half my age and was hungover badly tried to have a real go at me for threwing past its sell by date meat away.I had to point out it is a prisonable offence to keep out of date stock.He would know this and was just pulling rank being pathetic.
Peoples testing behaviour is worse when you have to deal with terminally ill parents.

groovejet · 03/01/2016 12:49

Jen, I agree with whatis go visit your GP and see if they can sign you off.

Christmas has been a strange one, kept things going for my dd's and having my sister and BiL over for Christmas day was a big help, they haven't spent Christmas in the UK for about 9 years, so having them here did provide a distraction.

This 2nd week of the Christmas break has been harder, I think before, everything was focussed on organising the funeral and doing Christmas prep and it is now that the reality of it all has set in.

His funeral went as well as these things can go, we were blessed with a true winters day, cold but with blue skies. It was a lovely if simple service, which actually sums up my Dad, had to smile as the Crem my Mum chose is right opposite a garden centre, my Dad loved gardening so it was suitably fitting.

CharleyDavidson · 03/01/2016 14:34

Jennifer, I teach and know how much of your enerygy and concentration you need to put in to doing the job properly. Once Dad was very poorly I had this stone cold feeling of 'I can't be here. I shouldn't be here. I can't do this properly with my mind on Dad' and I left at lunchtime the first day back after the half term. Things were in the last days, but we didn't know that then, I just knew he was very ill and I had to be with him. Let your work know and phone the doctors in the morning, I think.

Groove, I'm glad the funeral went well. I found Christmas without dad not too bad, but really struggled to see in a New Year that he isn't part of.

In fact, I think I have something approaching post traumatic stress as I keep thinking back to his death. How we was in the last week, the last day, the last few hours. Thinking that I should have noticed that things were different when he was agitated that last visit. Remembering how he looked after. And remembering all the upsetting times for him throughout the last year or so when he had bad news after bad news. I think of him and I get a panicky feeling inside straight away. I have to distract myself, then I feel guilty for purposefully not thinking about him. Last night I dreamt about him. I was rubbing his feet to make them feel better and I lay with him and gave him a cuddle. It's weird to wake up after dreams like that.

(Sorry for derailing and being a bit self absorbed there!)

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whatisforteamum · 03/01/2016 20:53

Groove im so glad your Dad had a good send off and that made me smile about the crem being by the garden centre.Charley i understand our minds replay over and over our loved ones last days until our minds accept what has happened.I hope the dreams are nt too upsetting,
I have a question if anyone can answer Dad had cancer in his pelvic area and has been getting swelling in his legs which is painful and comes and goes.He finds it hardto walk now and cant drive.Any experience of this i know it is an end of life sign,Thinking of you all.Flowers

JenniferYellowHat1980 · 05/01/2016 09:51

Charley, you couldn't have changed the outcome. Nothing you personally can do can change the outcome of this bastard disease. It's down to pure luck whether or not the thing responds as it should do to treatment. You know that though, don't you? You must give yourself a break.

groovejet, I'm glad you've able to say goodbye in such a fitting way.

Thanks for the advice, though I did go in yesterday morning. It was a PD day and I got there early, so just sat at my desk for half an hour wondering where on earth to start. The workload, the behaviour, the expectation that everything carries on as normal is impossible. I left and spoke to the GP who has signed me off for a week and I've handed my notice in. I have no idea how to get through to the end of March, when I can actually leave.

Mum is stuck in hospital for the foreseeable with, at best, severe pneumonia. I plan to visit on Thursday - it's a 9 hour round trip in total. Just want her home so I can be with her while she's still here.

whatisforteamum · 05/01/2016 19:48

Thinking of you Jennifer.x

JenniferYellowHat1980 · 09/01/2016 20:21

Thank you. Mum is at risk of heart failure due to infection. I am being allowed to stay with her round the clock in case she slips away. We're hoping to get her nearer to home early next week.