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Life-limiting illness

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Original poster

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:
Uglybear · 14/08/2018 09:13

Hi Jobby, that's awful, at least the stress of worrying about work is relieved. My mums quite comfortable now at home but just saying she's had enough and wants to go. Your poor wee dad though having to go though all this Sad

jobbymcginty · 20/08/2018 16:22

Hi everyone how are you all? My dad got told that's there's very little a chance of survival for my mum. Ages tube feed on oxygen and has a syringe driver in . Not sure how long she's got but not long I think. I just hope she isn't suffering . I was in yesterday and she was asleep all the time. I'm going in tonight to see her

Uglybear · 21/08/2018 05:38

Aw Jobby I'm so sorry. Mum's got the driver in bit still able to eat and drink a tiny bit, she's drowsy mostly, all you can hope for at this point is for them to be comfortable, hope you are getting support.

jobbymcginty · 21/08/2018 06:48

Uglybear my mum is really sleepy as well which I count as a blessing as it means she's not in too much pain. Another night on The sofa as dint want to disturb dh with my tossing and turning

Uglybear · 21/08/2018 07:10

That's it, they keep increasing her morphine which makes her so drowsy but at least she's not suffering. I'm sleeping ok but waking about 3 and can't get back to sleep, I feel likes I'm constantly 'braced for impact' if that makes sense.

jobbymcginty · 21/08/2018 10:46

I know it's like living in limbo . I phoned the hospital my mum has had loose stools stools 10 times overnight so not taking that as a good sign

Uglybear · 21/08/2018 11:26

Aw no that's not so good, hope things go ok today xx

jobbymcginty · 21/08/2018 15:50

Just spoke to consultant he reckons my mum only has 24-48 hours left . I know this sounds selfish but I hope it's sooner rather than later more for my dads sake he's in a terrible state

Uglybear · 21/08/2018 18:49

Jobby I'm so sorry. It is a head wreck, I'm dreading mum going but can't bare to see her suffer, just look after yourself and your dad now, I'll be thinking about you xx

Uglybear · 23/08/2018 21:48

Thoughts and prayers still with you Jobby xxx

jobbymcginty · 23/08/2018 21:53

Thank you I stayed last night my dad is in tonight I really don't think she'll make it. She took my hand this morning then has been unconscious since

jobbymcginty · 24/08/2018 22:10

Hi ugly bears how's your mum doing? My mum is still her but only just I thought earlier she'd be gone by tonight her heart must still be very strong

Uglybear · 24/08/2018 22:41

She doing ok, she's very stable at moment, very sleepy most of the time. I'm not sure what to expect now, a few weeks ago I thought we were close to the end as she was so ill and in pain, but now she's not at all, but on lots of morphine so it's hard to know what's happening. I'm pretty exhausted I'm over there all the time then trying to fit in real life round about it all.

How you holding up? And how's your dad doing?

jobbymcginty · 25/08/2018 06:40

I'm ok it just feels so surreal at times. She really needs to go my mum would of hated this. My dad is getting worse he's in such a state . I know people are meaning well but having to answer constant text is effecting him. I've managed to take on the percentage of text now but he still gets a few

Uglybear · 25/08/2018 12:22

Funny you should say that I'm finding the constant phoning texting etc quite hard to deal with but I know it's just because people love her and are concerned so what can you do Sad

jobbymcginty · 27/08/2018 10:29

My mum passed away at 23.50 yesterday . I'd went home but my dad was there. I'd dozed off but I woke up at 23.50 I'd like to believe she was coming to say bye

Uglybear · 27/08/2018 15:32

Jobby I'm so sorry, love to you and your dad and all your family at this time, I most definitely believe that's why you woke up, take care of yourself xxx

gillmoregirl · 07/09/2018 23:33

Hi to all sorry I haven't read all posts but condolences to everyone who has lost or is losing a loved one. My dad was diagnosed with melanoma just over year ago. Spread to lymph nodes with specks in liver and lungs. Immunotherapy didn't work and told its spread to brain. Steroids and different drugs tried (unsure of these). Bad reaction re kidneys and consultant advised no further treatment appropriate. Managed on steroids which are being reduced. Not sure what to expect and would be grateful for any advice. Dad very reluctant to give us medical details or talk about his situation. Also covers up if he feels Ill to us and doctors. Resists advice and help. The big unspoken question in our family is mortality and how to ke

gillmoregirl · 07/09/2018 23:35

Sorry hot button too soon.

How to talk to him about the situation without upsetting him or do we act normal. I'm all over the place so thanks for any advice. X

simplepimple · 09/09/2018 11:28

gillmoregirl It's difficult to act normal in a situation where you know there is no further treatment available for your Dad and can make you (and him) feel completely helpless. Everyone is likely to be upset at times so maybe move this down your list of worries.

Hard that he doesn't wish to talk about it. Some people can only cope with it in this way and it's not possible to tell how his behaviour may also be affected the cancer spreading to his brain.

Its easy to say but really important to look after yourself. If you'd like more info on death and dying this is a good website.

www.dyingmatters.org

Remember all feelings are temporary. Flowers

gillmoregirl · 15/09/2018 00:12

@simplepimple Thank you for this link. And for your advice. I agree. In this situation nothing normal.

Marmalizes · 18/09/2018 19:47

Can anyone give me somthing positive to hold onto about secondary brain cancer. Everything I’ve found is dire . My young DiL has had years of treatment for breast cancer, ongoing treatment for secondary bone cancer, then spread to her liver which meant months of gruelling chemo, now this just months after finding that the liver cancer had responded well to the chemo. She seems to tolerate the treatment well She has three young children. We’re all so scared.

simplepimple · 19/09/2018 06:46

Have you tried the Macmillan site Marmalizes? They have forums and there may be others with a similar diagnosis who may know more.

It is scary and everyone is different - so difficult to work your way through this. Flowers

simplepimple · 19/09/2018 06:47

For anyone trying to cope with grief...

www.refugeingrief.com/2018/07/19/help-a-friend-video/

Stopyourhavering64 · 20/09/2018 14:25

DB was sadly onlygiven 6-9 months to live back in April( has mets in liver and lungs, and has had previous radical surge and chemotherapy 18 months ago) and had been coping reasonably well at that point...going out and seeing friends- I even managed to visit him in May with my ds and dd. Have been in contact via messenger as he doesn't do phone calls as has tinnitus
However I live 7 hrs away so not easy to just pop round to visit, but was planning to visit Ds at Uni next weekend which is only 45 mins from where dB lives and had hope we could visit
Also, My eldest dd has been abroad for a year and is home on holiday for a fortnight so is also coming up to see her dB at uni and is now devastated that she won't see her uncle again
DB has a daughter who has been visiting her dad regularly until a fortnight ago when he found he was really struggling with socialising and didn't want to see anyone
I totally empathise with my brother but I'm just not sure what to do...he's not replied to my messages, it's like he's withdrawing and as he lives on his own , I'm worried he's not getting the support he could from Hospice at home / Macmillan
He's my big brother and I'm desperately sad I'm not going to see him again, nor are my dcs
Ironically I work with and support cancer patients and their families on a daily basis and if he lived locally I'd know what support was available and I'd be able to get my own support from colleagues ....I just feel numb and at a loss