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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:
Venusflytwat · 29/04/2017 18:36

I'm really sorry for your loss, Paws.

My Dad hasn't long left- leukaemia and heart failure. He has deteriorated lots in the last few weeks. He's signed a DNR; he was in hospital last week but is home at present. We don't have a proper prognosis but guessing we're talking weeks. It's hanging over everything; I wish it wasn't but it is. I don't know how best to help him and my Mum.

Heavy hearted.

Waxlyrically · 29/04/2017 21:39

I'm really sorry to hear your sad news paws.

I'm glad you managed a lovely day with your Dad crimson he is absolutely right about enjoying & noticing the important little things we tend to forget & sounds very wise.

I know what you mean about it hanging over everything venus I have spent a few days in denial but I realise that's just selfish. My poor Mum can't escape it! I'm going to go and see my Mum this week for the first time since she had the news. She lives a long way away but that's no excuse I know. I feel really worried about it as I don't know how to be if that makes sense.

SelenaValentina · 29/04/2017 22:37

Hello everyone. I'm back from a fairly relaxing break. Funnily enough, crimson, my DH was watching birds for ages in the hotel grounds!

venus and wax - we have the cloud of the Oncologist on Thursday.
And Wax - just be yourself, I guess your mum will crave some normality of just seeing you - and shed a good few tears?

I was really surprised to find that the promised Care Plan had arrived, which means we have a 24/7 dedicated tel. no. for any problems. Also get stickers to put on doors and cards to carry with you. Seems good system - just hope we don't need it. He and I have discussed DNR, just need to get it officially recorded now.

Flowers and Brew and Cake to us all?

Ang69 · 30/04/2017 10:16

Hello everyone, my heart goes out to all of you who have found yourself here, it is a truly horrible position to be in. My lovely dm was diagnosed with lung cancer mid December, quite a small tumour but it had already spread to her lymph nodes. She was told in January that it wasn't curable but they could treat it with radiotherapy. At this stage she had virtually zero symptoms but was generally weak. She completed 12 rounds of RT in February and up until last week was doing ok. Since last week however she has really declined, is very breathless, off her food, extremely weak where she can barely walk and has increasing pain. She is refusing to go to hospital, the lives alone and I live 300 miles away and have 4 young children, 2 with additional needs and also work full time. My head is in a complete mess and I don't know where to turn. I have one brother here who is useless and my uncle who seems unable to see the reality of what is happening. I drove up last night and my mum has said she doesn't think she's going to get better now and she dreamt of her own funeral last night and met my grandma there.
Sorry for the long post, just needed an outlet, my thoughts are with you all going through this awful time.xx

Ang69 · 30/04/2017 10:20

Meant to say, thank you to Charley for starting this thread, it is really helpful to know you're not alone. I do hope you and your family are doing ok after losing your dad.xx

whatisforteamum · 30/04/2017 10:34

Hi I've not been on here in ages.My Dad has had a lot longer than the months he was given.however last week he has taken a turn for the worse.he had another infection then felt well enough to go out where he became exhausted and could barely walk.I came home from a mini break to find him breathless and according to Mum forgetful and confused.I'm off to work now no idea how I will concentrate and he has hospice nurse coming Tue if he doesn't call her before.love to all on here xx

Waxlyrically · 02/05/2017 20:44

Will be thinking of you on Thursday selena.

Mum had a phone call this afternoon asking her to go to the hospital tomorrow which we think will be when they tell her about the chemo she's having and give her a timetable. Had planned to visit tomorrow but will have to rearrange - l have three days leave booked to allow for sudden changes. Am glad something is happening though.

ang69 I know how you feel about distance and not being able to just drop your home life (children and work). It's impossible to know what to do for the best but you are definitely not alone in feeling lost in it all.

Sorry about your Dad whatis I'm not sure what's worse having to be on some numb autopilot at work or being at home worrying.

Love to all on this thread going through this xx

SelenaValentina · 02/05/2017 22:18

Thank you, Wax, sometimes I think it's these threads that keep me (comparatively) sane.

Hope as as well as it can be whatis? And Ang69 too?

whatisforteamum · 03/05/2017 07:27

I will catch up with all you new posts and I'm so sorry so many more of you have joined us.I was working Tue so called dad who told me he couldn't move Mon morning and thought this is it....I asked if he thought it was the infection he had but he thought this is something new.tbh he has had five yes so a lot longer than predicted. It still is awful to watch him struggle and Mum who has had stage 4/ cancer for over 9 hrs on and off.Hospice nurse comes out today so maybe she can offer advice.I hope everyone can have as best week as possible.How are you Charley Davidson ? X

JoyceDivision · 07/05/2017 03:01

Does anyone have experience of dealing with panicking / controlling siblings...think it's all getting a bit too much

Seaweed42 · 09/05/2017 09:42

I have experience of a controlling sibling. A brother has a terminal illness. One sibling took 'control' of the situation and this is what we had been/are seeing - the gatekeeper sibling controls all contact with health professionals. She literally rang them all without conferring with rest of the family, and told them she was now in charge and was the main contact. She limits access to the sick sibling, emails other siblings telling them they don't care enough, are bad people and don't love anyone, are bullying the sick person, are doing things wrong etc, are phoning too much/not phoning enough. She also told rang and texted and emailed everyone telling us the sick sibling only has days to live, literally about 10 times in the last year. Based on her own opinion not the doctors opinion.
Takes on far too much responsibility and then blames others for 'making' her do it. I could go on and on.

In my case the controlling sibling was virtually bullying the sick sibling as well when they didn't behave the way she wanted. No one can say a word, because the controlling sibling is so sensitive that if you try to defend yourself, she will then accuse you of bullying her or interfering with the sick siblings care. Also if anyone questions her, the same thing, you are called 'aggressive'. She has also cried in front of the sick sibling saying other people were being mean to her - and this is a grown woman! So we have to let her away with everything she says to us, or my sick sibling will end up feeling bad over it. It's pretty tough.

She also manipulated the sick sibling into only letting her be the main contact at the hospice. So no one else was allowed to ring up and find out how they were. All our information had to come from the controlling sibling. We weren't allowed to come to the hospice without her permission, and she checked the sick sibling's phone to see who was ringing. We had to wait in reception of the hospice for her to come and get us and escort us down to my other sibling's room.

If you brought the wrong drink or chocolate for the sick sibling, or even sat in the wrong place at the visit, this was called 'bullying' as you had done it on purpose to upset the patient!
We are still in that situation to some extent, except that my sibling has been sick for longer than expected so the controlling sibling went off in a big huff, so another couple of us could get access and contact at that point. We are actually allowed to come to the hospice and go down to my sibling's room. Only because she won't speak to half of us now and so doesn't want to meet us in there. It's very tough!

JoyceDivision · 09/05/2017 23:04
Shock

Seaweed, that sounds horrendous!!

I have a sibling who has to be in control and istryinng to control a family member's illness whichsimply cannot be done, but I struggle that whenever I call up to see thefamily member the sibling is always there... I don't intrude on the days I work but they are cancelling work days and always there when I am off so I never get my own time, if any slight hint is dropped it's like the worst insult in the worls, plus their spouse is always there too which fucks me off as it isn't their oplacefor them to be t here all thetime.... Sad

whatisforteamum · 05/08/2017 08:22

Dads in hospital with suspected spinal cord compression.He is having radiotherapy on his spine.He has a blood clot on his leg too and lymphodema.When I joined this thread hrs ago ...I think I was about the third person to reply,Dad had been given months to lie.He has had five hrs since diagnosis which is nothing short of a miracle for his aggressive type of cancer.Mum is still here ten hrs since being diagnosed as stage 4/ incurable.
Dad now has a hospital bed that has been delivered to his home.I have no idea how long he has except he said he is at the next stage...more morphine every morning and evening plus top ups.
I'm just checking on his well being day for day which is tricky as I just started a new job.sorry so many of you have joined this thread and thank you Charley for starting it.

NooNooHead1981 · 05/08/2017 14:57

Thank you for starting this thread.

I am here for a hand hold too; my brother, who is 34, has terminal bowel cancer and only a few weeks left. He pulled through us nearly losing him last week and his prognosis has lengthened; the hospice are truly wonderful.

I am in pieces already, I had the most awful gut wrenching moment lying in bed the other night when I had an overwhelming sense of anxiety that made me sit up in fright. It came out of nowhere. I guess I was subconsciously thinking things and my brain couldn't cope.

Strength to you all dealing with sick relatives and friends. My heart goes out to you all. Flowers

Aardfart · 10/08/2017 02:55

Sorry to read so many people coping with difficult situations. It's heart wrenching.

My DP's mum was diagnosed with cancer last year and had surgery to remove the tumor followed by a course of radiotherapy. Unfortunately it seems the cancer had already metastasized and now it's in her bones.

She's been having chemo and it's so horrible seeing her get weaker after each round. Me and DP are getting married next year and just hope she'll be around for the wedding but if anybody's been given a prognosis I'm not aware of it. She's only 56 and it seems so unfair - we were talking about grandchildren and future plans and it's just been snatched away.

It's heartening to read of some who've survived longer than expected. If only we could have five more years!

MyGuideJools · 11/08/2017 22:06

Hi I can't remember if I've written on this thread before but we now have a diagnosis so unfortunately I'm join the thread 'for real'
My dear dad had been diagnosed with mesothelioma. All a bit shell shocked at the moment but I'm sure I will be posting in the coming weeks. Sad

MyGuideJools · 11/08/2017 22:27

So sorry to read about every one else going through what can only be described as a living hell Flowers and thanks for whoever started the thread.

whatisforteamum · 12/08/2017 07:43

Dads at the last bit now.We were told Thursday his kidneys are failing and he can't have dialisis as he is on blood thinners for his blood clot.Dad has been almost hallucinating and drenching in sweat.He couldn't make head nor tail what he was being told by the kidney specialist.I saw him sat and he was chatty and according to my aunty much better than he had been.Now we wait and its heartbreaking to see him shuffle to the loo legs all swollen and badly leaking fluid. My heart goes out to you all xx

CookieWarbler · 12/08/2017 08:38

Firstly Flowers to you all.
Noonoo how is your brother doing?
Myguide and whatis I'm sorry to hear of your recent diagnosis.

Until a month a go I had no need of this thread but in that time my beloved Mum has been diagnosed with advanced secondary liver cancer from a primary cancer somewhere in her upper bowel. She had no idea.
We are waiting on options for treatment but we already know her liver is so riddled with tumours surgery is not an option. Maybe chemo to try and shrink them a little and buy her a little more time. However Mum is a nurse and she knows the score, she's already said she won't go through chemo if it doesnt offer a decent chunk of time more.
I'm heartbroken and have no idea how I can put on that brave face, I just have to look at her and I cry. My Dad relies on her for everything.
She's 67 and spent 46 years of her life as a nurse, saving lives and making people well again. She's now going to be taken from me too soon by agressive cancer and I'm so angry.

MyGuideJools · 12/08/2017 09:28

cookie Flowers it's shit isn't it?! Anger is where I'm at at the moment. Dad is being so bloody brave, he's more worried about leaving mum on her own. They have been together for 55 years. It's heartbreaking and I'm walking around like a zombie right now. I need to put on my big girl pants 😐

Willowkins · 12/08/2017 10:24

So sorry for what you're all going through.
Cookie I well remember DH's diagnosis for bowel cancer with liver and lung mets last year and palliative chemo the only option. And yet here we are a year later. Not just chemo but immunotherapy (Cetuximab) is now available and it has helped to extend and give quality of life. My point is that new treatments are available and hopefully your mum will at least consider them.Flowers

CookieWarbler · 12/08/2017 14:16

Myguide I know what you mean about the bravery. Mum is the one telling everyone to cheer up and being brave. Breaks my heart even more. I'm still looking for my big girl pants....
Willow thank you for your post. It really helps to know that there is some hope in this situation. I hope your DH continues to do well. We find out on Wednesday what treatment they will recommend to Mum so that's the next tiny beacon of hope to aim at.

MyGuideJools · 12/08/2017 16:25

cookie my big girl pants have gone awolConfused
At the moment my every thought is of my dear dad. I'm in a constant state of anxiety which isn't like me at all. I don't know how I'm going to cope at work next week.

CookieWarbler · 12/08/2017 21:33

Myguide I think it's completely normal to be in a state of anxiety given the circumstances. I'm usually a strong capable person but I feel like that's just collapsed in the last couple of weeks. I've been trying to carry on exercising just as a way to get out and do something positive for myself - however the wine self-medication is probably undoing all that! Doesn't work for everyone but I find it a bit of a release for anxiety.
I have to work next week too, ferry DD to holiday clubs and my DH is away with work (unavoidably) for 2 weeks. Do you have any flexibility with work? Are they understanding?

MyGuideJools · 12/08/2017 22:06

cookie work have been brilliant actually. They gave me special leave when dad had his surgery then I've been on annual leave. I'm seriously considering getting signed off by my gp for a couple of weeks as I need to be with dad. Not sure if that's an option tho. It's like I'm watching someone else's life unravel. It's so surreal. I'm knackered but wake at 2am having panic attacks.
Wine sounds like a plan but I don't much like the tasteConfused