Between Life and Death

[Marg2024]

Hi all.. just looking to vent/seek advice…

76 year old Mum, has been increasingly unwell for a number of years. Last year she decided she’s had enough and wanted to die. Obviously we couldn’t do anything about that, so she rallied on until July when she attempted an OD on sleeping tablets. She was taken to hospital and my siblings and I experienced a feeling of despair and hope… I don’t want her to go but I want her to no longer suffer.

Constant medical issues since then has led to her no longer eating “real food” as of Xmas time. She currently lives on 3-4 rich tea biscuits once or twice a day, a cup of tea and a coffee. Not much water. Our GP has been lovely and understands Mum is edging towards end of life. Mum told us she is going to stop eating - whcih she did, for 5 days. We were on tenterhooks wondering if this is actually happening, shipped our brother over from Sweden and told family that Mum is possibly going to die soon..

since she’s been given liquid morphine, she Has rallied - eating again, although still just biscuits… but Mum now needs 24 hour care. She needs help moving around, keeping on top of her meds etc. my brother and sis and I are all swapping shifts, sleeping on the sofa, giving each other breaks. It’s hard but it’s working.

but everything is on pause. My sister and I are signed off sick, im living between my Mums and my sisters having left my boyfriend and dogs at home. my brother has his daughter with him who is missing school back in Sweden. Mum isn’t even incontinent and it’s not even “that difficult” yet…

but I’m already feeling like I’m not going to cope, or how long can I do this for? We’re all frazzled. We thought Mum was going to die and now it seems as though Mum will be with us for a lot longer than we expected.

i don’t even know what I want from this thread… I am just completely at a loss. I’ve been expecting Mum to die for over a year, one way or another…. Fight or flight mode, every day. But now I have totally paused and I feel like I’m just waiting and it’s a horrific feeling.

That sounds really draining for everyone involved.
Does your mum have a consultant over looking her care?

You need to ‘unpause’ op. As a carer I can confidently tell you that your mum can exist for years like this. Can you accept that this very well maybe nowhere near the end and possibly arrange support for her?

I really don’t mean this flippantly and I don’t know much about the process but - can she afford to go to Dignitas? Is that something the family would support?

Only our GP. He used to work in hospice care so he “gets it”. He’s super supportive of us as and we feel safe under his care. We’ve had St Christopher’s involved to a point - but they can’t do much else for Mum right now as we are taking care of it - we agreed that home is best for Mum for now.

This is my worry…. I can’t see a future for myself and my siblings if Mum lives on like this. She has no quality - the only quality she is getting is sleep, as she’s never slept much due to her anxiety. So as much as this is the most comfy Mum has EVER been…. She is housebound, can’t walk too far, out of breath, constipated, terrified of “having an accident” and lots of other nuanced things we are dealing with.

my brother has suggested that we need to talk frankly again soon… and discuss a plan.

but I feel the moment we say we can’t go on like this, and suggest outside care…. mum will want to stop eating again.

We did cover this suggestion :)

Mum would have chosen that route ages ago if we could afford it! we’re all very short on finances. My sister and I are secretaries, brother is out of work currently with two children to support. No other family to rely on/ask for financial help from.

What a terrifying situation to be in.

They will have done this bit perhaps it needs doing again.. It sounds as if the GP or the palliative care team urgently needs to refer her to the older adults mental health team, or to clinical psychology within the palliative care team. As a family you need to scream for help to the hospice social worker.

Home may no longer be best for your Mum if it only works because you are collectively propping it up at the cost of a minimum of 6 lives.

I don’t anything about your mums situation other than what your written. 76 seems a young age to give up but of course it depends on her diagnoses.
Is there any chance of improvement for your mum, for example meal replacement drinks for added nutrition.
Could you ask for a referral to a care of the elderly dr.

Ive just read your updates stating that she’s housebound and breathless. I still think she needs an assessment to see what can be done to make her more comfortable.

This would be the easiest thing to do…. But I come from a family whose mental health is collectively terrible. Lots of trauma etc

So to in essence, pop Mum off to the nearest MH hospital is just a massive no go area. I couldn’t bear the thought of my beautiful Mum being committed and doped up and contained by the system… we understand her MH and we don’t feed into her demons as such…. But we do respect her wishes/feelings about not wanting to be here any more… its a vicious circle

This. My mum has been teetering on the edge for years. I have also seen it as an HCP. It's very very difficult but you cannot all put your lives on hold as you really do not know what the future holds, or more precisely when.

It is.. she’s still a young elder. We’ve covered all this already, with consultants and GP… Mums tried complan, fortisips… she can’t tolerate any of it. Or doesn’t choose to…

she has COPD, Heart disease - she has lost a lot of weight and is terribly frail - shss already tried to recover to a point… for a few months.,. But she’s had enough again

I’ve heard and read so many similar views .. you can’t pause your life for the sake of a loved ones care…

our family are dead set against outside care, trust is a massive issue - as in who can we trust, the system is a mess… etc

but… I think we need to have this conversation. My sister and I can’t give up our jobs and my brother needs to head home…

It feels like when it comes down to it. A decision has to be made, no matter how difficult it may be for us…

Sounds very grim for you all. Do you think (if she's totally set on giving up) that VSED would be worth discussing? It's done under medical supervision so I don't know if it's worth chatting to her gp about?

I didn’t realise this was something you could freely discuss with medical professionals as an “option!”

im surprised.. but basically that’s what Mum is doing. She wanted that last week… and stopped eating for a few days. But when the hospice team came to visit they said they couldn’t help Mum if she was choosing not to eat. Only if she “couldn’t” - ie having difficulty swallowing - whcih is developing a lot.

Hence the lovely liquid morphine she’s on :)

but where she’s levelled out a bit in terms of pain and anxiety as a result of the morphine - she’s sort of just existing in this resting phase.

I feel horribly guilty for even talking about it. This is the most rest she’s EVER had and I’m grateful. But also prepared so much for Mum to go… and now I’m wondering if she wants to live with the help of this painkiller…. How can we manage to live alongside her.

Love you can't go on like this. She should be offered a place in a nursing home where she has full time support. She won't be "doped up" or locked away. There are meds that may help her atm but that's a discussion for your GP. 💐💐💐

Read up about VSED and see what you think x

Thank you everyone for your thoughts and insights thus far. It’s helped me get some things off my chest and eased me into understanding that I’m not a terrible daughter for feeling this way.