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Original poster

Final days for Mum

99 replies

Finfintytint · 21/02/2019 20:31

I've posted on another thread a few months ago.
Mum was diagnosed with bowel cancer (aged 76 ) in the summer this year. She had surgery and then chemotherapy but it appears the chemotherapy caused a massive stroke ( not previously thought to be at risk of stroke- non smoker, non drinker, good exerciser, vegetarian, not overweight - generally very healthy). Still fucking off to sunnier climes on a whim!
She has been in decline on a ward in our local (failing) hospital for the last three months and is now in the last end of life stages. Maybe a few days and at best a week or so.
What should I expect?
I've been trying to get her to hospice for the last few days but am met with bureaucratic delays. Do the NHS think that she's a lost cause and she'll die anyway so let's no waste time?
Honest answers please.
I know nurses and doctors want the best possible outcome for patients but I feel mum is a bit of a bed blocker but at the same time they will do their best to keep her on ward if that's what's best for her.
Crappy situation and I don't know the answers or whether I even have any control. Should I try to move mum or not?

OP posts:
Grace212 · 23/02/2019 08:31

OP I am so sorry

I have kind of been where you are, but the hospice was attached to the hospital so all they had to do was move dad's bed

I too am wondering if they think they shouldn't move her

but it is amazing how hard it is to get answers from them

I would have made a complaint about how it was all handled but mum thinks they handled it correctly so...

anyway, side room is needed for her visitors, I think if she gets moved she might feel relieved even though she says no.

I really feel for you. I had to ask for the syringe driver too.

I wish you all the best Flowers

SheRaa · 23/02/2019 08:39

Hi OP, so sorry to hear you are going through this.

My Mum passed away last year of cancer, she was a nurse so very aware of what was happening and her options.

She died peacefully in a hospice who admitted her just over a week before she died.

It was absolutely the best thing for her & they were amazing.

If it were me, I would push as hard as possible for a hospice bed & exhaust all the options to make this happen.

NarcissistMum · 23/02/2019 08:51

The Marie Curie helpline is open from 11am - 5pm today. Go to this web page and scroll down the page.

Thinking of you at this dreadful time. Be kind to yourself.

www.mariecurie.org.uk/help/support/marie-curie-support-line

Onedayatatimethistime · 23/02/2019 10:02

The hardest thing for me was lack of consistency in who I was speaking to. I lost count of the different doctors 'treating' mum - I say that because so many of them would come in not having read her notes and ask us what was wrong! No one seemed to appreciate how precious and short her time was. 'Tomorrow' and 'shortly' became my most hated words.

Things you could try tomorrow; PALS - they should have an office on site so try to go in person. They gave me a single point of contact on the palliative care team. Failing that try to contact palliative care directly through the hospital switch board. If you can, get in early and stay for the doctors rounds. Tell them (don't ask) that you want to speak to her consultant - they should make an appointment for you. Bug the ward staff eveytime you go in to see where everything is up to and tell them you have spoken to PALS even if you haven't.

It breaks my heart to know you're going through something so similar to us. I fully understand how draining fighting is but we do it anyway. Sending strength and hugs.

Has your mum been given steroids for the pneumonia? They really help. Mum shouldn't have had them as she had osteoporosis but priorities changed.

Gth1234 · 23/02/2019 11:12

Some people wouldn't want to be shut away in a room on her own. Is she aware that she has limited life left? I think the best thing is to try and be with her as much as possible in the time she had left.

TidyDancer · 23/02/2019 11:39

I'm so sorry OP. I don't have any practical advice unfortunately but I couldn't read this and not say something. Thinking of you and sending lots of love to you and your family. ❤️ x

Original poster
Finfintytint · 23/02/2019 17:56

Thanks again to everyone for your kind words. I’ve spent most of the day with her. A decision will be made on Monday re hospice. They do not think she’ll be accepted as her medical needs are low but they will make the referral based on mental health.
The pneumonia is not being treated. She has been put back on a thickened water which she has refused and has also refused drip. Staff have allowed normal water at her own risk as she has full capacity.
The consultant is away teaching abroad so have had junior doctors to talk to.
We’ve discussed funeral plans at her request without prompting from us. (Is the shipping forecast tune suitable? It’s what she wants!).
If hospice is not suitable then the doctors agree a nursing home is more suitable.

OP posts:
JenniferJareau · 23/02/2019 18:47

Play whatever she wants at her funeral. It is her wishes.

Good luck Flowers

UtterlyDesperate · 23/02/2019 18:54

Just stopping by to send love to you and your mum Flowers

I think the shipping forecast would be wonderful: I wish I could get back to back recordings - I find it really calming. Perfect for a funeral Flowers

NarcissistMum · 23/02/2019 19:07

We had the shipping forecast music played at my dear FIL funeral. It is called ‘sailing by’ by Ronald Binge. FIL was in the navy for years and would listen to the shipping forecast very early with a cuppa before everyone else got up. Thinking of you OP.

rainbowruthie · 23/02/2019 19:08

Sending kind thoughts to you and your mum Flowers

Original poster
Finfintytint · 24/02/2019 18:57

I can see further decline today. She nods or shakes her head in response to chat and occasionally whispers a response. She’s coughing, yawning and retching. It’s so bloody hard to see this.
I’m used to sudden and unexpected death (retired police officer) but this is something new and difficult to deal with.

OP posts:
DorisDances · 24/02/2019 19:22

Thoughts with you and your mum OP Flowers

Grace212 · 24/02/2019 20:51

hi Fin

bit confused re hospice and medical needs. Is there any kind of time frame that's been mentioned to you? has the concern about moving her gone away?

I really feel for you - watching my dad decline was the hardest thing I've ever done in my life. At one stage, I was listening to a song called "What Sarah Said" - don't look this up if you are not ready for it, it is literally this experience in a song!

I was familiar with the song already, and when dad didn't really know I was there, I was listening to it and just letting tears flow. It helped me in a weird way, so just putting it out there.

I also listened to Elaine Paige "memory" but partly because dad liked that one. The lyric "when the dawn comes, tonight will be a memory too" made me feel a teeny bit better. Flowers

Gth1234 · 24/02/2019 21:12

The shipping forecast rune is called "Sailing By" and always strikes me as very restful. It's as suitable as anything else that might be chosen for a recession, I would think,

Eliza9917 · 25/02/2019 09:16
That is beautiful. I've got a tear in my eye now at work.

I hope your mum is comfortable today OP and you are coping ok Flowers

Original poster
Finfintytint · 27/02/2019 19:32

Bit of an update. Mum has been deemed not suitable for the hospice. She doesn’t require any medical need. The cancer, stroke, pneumonia is not requiring treatment and she will be left to die in the next few days/weeks according to her own body.
The discharge nurse is therefore keen to get her off the ward as the bed is needed and have requested she goes ASAP to a nursing home.
She’s on a syringe driver and pretty much out of it.
We still chat to her but she is uncommunicative.
Trying to organise the nursing home and have lost all faith in the hospital. They tried Physio today! She’s fucking sparko on a bed. Yes, I’ll just get her Lycra leotard out of the drawer shall I?

OP posts:
2018SoFarSoGreat · 27/02/2019 19:51

oh that is hard to hear, Fin - sorry that was the decision.

Physio - truly it is like they are just ticking boxes. They did the same with my DM who was barely there.

Here's to finding a good nursing home. I am sending you positive vibes that it happens soon. Flowers

BusySnipingOnCallOfDuty · 27/02/2019 20:01

Oh Im so sorry. Physio? What a joke! I hope she passes as pain free as possible, with you there to hold her hand.

I went through this with an ex's mum. I had never seen a deceased person before. She passed at home in a specialist bed put downstairs, with round the clock care.

Are YOU being supported by friends and other family?

All my love, OP. Its very sad. And I feel compelled to youtube that theme song because I dont know it. X

Original poster
Finfintytint · 27/02/2019 20:01

Thank you 2018, it really is a box ticking exercise. There’s no joined up thinking at all.

OP posts:
Original poster
Finfintytint · 27/02/2019 20:05

Busy, yes, there’s plenty of support. Us three siblings manage about two hours each per day which is enough for mum. We support each other at othe times depending on work stuff.

OP posts:
Grace212 · 27/02/2019 21:11

Fin, I hear you on the physio.

my dad wasn't sent to hospice when he should have been - it was at least 2-3 weeks late in my opinion - but he was bed bound and could hardly move, then physio paid him a visit, left zimmer frames by the bed etc.

I was really upset. At this point, the hospital were not willing to say "he's dying" but even then, I thought it was batshit, unnecessary and upsetting. And I'm really sorry it's happening to you too - makes me think that there's some actual crazy policy here.

how are you doing with finding nursing homes? my dad didn't have any medical needs when he went into the hospice, but perhaps different hospitals have different policies.

I wish I could say something helpful Flowers

CCC1 · 27/02/2019 21:32

Hello sweetheart. We were in a similar place 18 months ago. You are strong. You will be strong. x

Nothininmenoggin · 28/02/2019 02:18

So sorry OP it's an awful experience losing your Mum. Just be with her hold her hand and talk to her she will know you are there.Flowers

YoThePussy · 28/02/2019 04:00

Another one saying so sorry OP. This is an awful time for you and your family. Lost my DM over two years ago to cancer and it was the most dreadful time, thankfully some of the more awful memories of those days have faded now.

I really hope you can get your DM somewhere nicer for her and your family. Treasure your last days with her, sadly they will feel all too short. My DM had a syringe driver which helped her greatly and slipped very quietly away. Not frightening at all just extremely peaceful.

Take care of yourself, sending my very first mumsnetty Flowers

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