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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:
kemptownlady · 29/01/2018 14:39

@Kernowgal thank you I did go to see her yesterday, we had lots to talk about, and it was great to spend time with her. I think the next few weeks are going to be enormously difficult for everyone. However she was much stronger mentally and that's a relief.

Willowkins · 30/01/2018 07:35

I'm so sorry for your loss 84CharingCrossRoad. Words are not enough. Sending you a handhold. Flowers

TheWeeMacGregors · 28/03/2018 04:39

Anyone there? Looks like this is inactive, hopefully not because everyone now without their important people.

Just waiting with my DM in the hospice for the end.

Accepted it, but scared of how to say goodbye to her once she has gone. As in how to leave her on her own.

randommmmmmmmmmm · 28/03/2018 19:53

You will always be with her whatever x

TheWeeMacGregors · 29/03/2018 04:51

Thank you. Two days into vigil and think am learning that. Doing little bit of philosophising on the quiet, getting my head around mortality....

The process of dying is less scary than I thought too I think.

Guardsman18 · 24/07/2018 16:15

Anybody still on here by any chance?

Uglybear · 27/07/2018 00:05

Hi guardsman, I'm just wanting to say hello, my mum is terminal now, so hard.

Guardsman18 · 27/07/2018 09:07

Hi. Thanks for being there. My father died in a hospice on Wednesday morning.
So sorry to hear about your mum.

Uglybear · 27/07/2018 09:12

Aw guardsman I'm so sorry. I'm here to chat if needed xx

BonApp · 27/07/2018 16:48

I’m here. Though out the other side, minus my dear old dad who died 2 months ago, also in a hospice.

Thinking of you all in these tough times. Love will get you through Flowers

Uglybear · 27/07/2018 22:11

Hi bon, I think we are still quite early in the process but it's so hard to gauge I'm not sure. We think mum needs care all the time now so we are trying to sort out overnight stays, hard when you have families.

BonApp · 28/07/2018 07:58

Sorry to see this uglybear. Is a palliative care team involved?

Uglybear · 28/07/2018 12:34

Yes, just minimal presence at moment, they call in every couple of weeks to check up. We have amazing carers though.

BonApp · 28/07/2018 21:52

Don’t hesitate to ask for more help. At times things got overwhelming for us with dad and it was a real worry. And if you have a hospice nearby they can provide amazing support.

Uglybear · 30/07/2018 22:40

We asked palliative care nurse about admittance to the hospice but she said it's no at this time. We have been called to mum's during the night many times now due to falls and vomiting and pain so we are now taking turns to stay over. Juggling family, mum and work is tough.

BonApp · 31/07/2018 20:42

Oh uglybear it sounds very very tough. Can you push for a hospice referral? It sounds very stressful for you. With dad it was like it was all manageable then all of a sudden it was too much. We had to push and “make a fuss” a couple of times.

Uglybear · 01/08/2018 08:04

Yes in i think we are being a bit too accommodating and not being pushy enough. Thanks bon.

jobbymcginty · 06/08/2018 08:37

Hi everyone can I join please?
My mum was diagnosed with ALL the 1st week of July . She got told 3-6 months to live. She's been put on a trail of intensive chemo, it's gets injected into her bone marrow .shes to to stay 6 weeks in hospital and home for 2. 4 rounds in total

It's awful watching my poor wee mum go through it.
I've also feel like I've got to spread myself everywhere by supporting my dad who's who's obviously distraught they've been married 52 years. I have a 11 yo and 17 month old sons . I work 12.5 hour night shifts so cope without any sleep as my mum did childcare, I feel so selfish for writing that. Plus my work haven't even asked how my mum is
I'm thinking of getting signed off with stress but feel I'm wasting the gp's time
Hugs to everyone going through this awful time Flowers

Uglybear · 06/08/2018 16:42

Hi Jobby, I don't know how your coping I have much less commitments and more support than you and I'm struggling. It's just awful,

MyNameIsNotSteven · 06/08/2018 21:54

jobby, that's what your GP is there for. You need to stay well yourself. I did the same. If compassionate leave for immediate family was more generous it wouldn't be necessary for you to go off sick but there's only so much you can cope with Thanks

jobbymcginty · 06/08/2018 22:12

Thanks for your replies , I just feel such a fraud going to go to get signed of , it's my mum that's Ill not me. I've been making some stupid mistakes at work like losing the medication keys then finding them in the cupboard . I can't sleep on my nights of just so much going on in my head just now .
Went to see my mum tonight her legs are looking very swollen and dry I mentioned it to the nurse when I was leaving. She never got her chemo today as the lab had made a mistake with blood for blood transfusion not sure exactly what happened

StitchandMinky · 10/08/2018 16:14

jobby don't feel bad about getting signed off. My OH has got himself signed off work and has no intentions of going back until his mum dies. She's just been confirmed as her lung cancer having moved to stage 4 with brain metastases, given months to live, not sure how many at this point but given how I'll she is with it we don't think it will be long. At the end of the day he wants to spend as much time as possible with her while he still can and while she is still something of herself.

You've got yourself and your kids to look after too Android there's no point being at work if you are too tired/distracted to do your job properly.

Original poster
CharleyDavidson · 13/08/2018 22:48

Hi all. Checking in again on this thread, started so long ago. Always with mixed feelings. So sad to read of others in this situation. Glad though that it can be a place that people have some place to talk about this incredibly difficult time/situation and hopefully provide some comfort.

Flowers all round.

OP posts:
Uglybear · 14/08/2018 07:44

Hi Charley, that's lovely of you to check in, hope your doing ok. Mum is now fairly comfortable and I'm off work to look after her. Everyday seems to bring a new challenge however, life is on hold and I'm so sad all the time.

jobbymcginty · 14/08/2018 08:51

Hi everyone hope your all doing ok. I'm off work now . I got a phone call last night to go in as my mum is really ill. She has sepsis now .
She is so confused but lucid at times saying she doesn't want to go through anymore treatment . My dad said it was the confusion talking but I'm not so sure. She's lost so much weight she was tiny to start with but I can even see the bone at the end of her nose
Wishing everyone as God a day as possible Flowers