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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

Nat6999 · 22/02/2019 06:23

I lost my dad to kidney failure 5 weeks ago, he was desperate to come home but we didn't think my mum would cope with him at home. He was only in hospital 9 nights, we tried to get him moved to a hospice but it would have taken too long. He was in a bay designed for 4 beds that due to ward closures had 6 beds in it with less than 3 feet between the beds. We asked for a side room but they refused as it would have meant having extra staff to care for him. He passed away in that bay, there was no privacy or dignity. Start fighting for a room for your mum as soon as you can & try to have someone with her as much as you can. We had to fight for everything, right down to sedation when he was near the end. I hope your mum has peace & dignity as her end approaches.

Rockmysocks · 22/02/2019 06:38

No practical advice, just want to send you hugs and hope mum goes gently.

Original poster

Finfintytint · 22/02/2019 06:38

Yes, peace and dignity is what matters most. Her buzzer and drinks table is constantly put out of reach.

OP posts:

2018SoFarSoGreat · 22/02/2019 07:08

Sending a big hug if you'd like it and strength to get through this next bit. Lost my love mum five weeks ago and know how hard this is.

Onedayatatimethistime · 22/02/2019 07:49

I remember your post from the other thread and I am so sorry that you are going through this. So many parallels with my DM who passed last month. We were in a position to bring her home to us but she was moved wards a few times and each time paper work was lost and discharge set back again. I felt just like you that the hospital were content to procrastinate but that time was a luxury we didnt have.

Ended up at PALS and they kicked everyone up the backside to get her home that week. What does your DM want? Afaik hospice care is on referral so, if that's what she / you want I would see PALS (better in person than to call) and fight for it.

Don't worry about sticking to visiting times - be there as much as you want to be. Mum only spent 3 days with us in the end. She was on the driver, comfortable and passed in her sleep. Please PM me if you need to

MsSquiz · 22/02/2019 07:54

My DM was transferred from hospital to a Marie Curie hospice for what ended up being her final week. This was done after speaking with the palliative care team who made the referral. Can you speak to them directly and ask why she can't go to a hospice?

My DM was so much more comfortable in the hospice, she had everything she needed and you aren't tied to certain visiting times. I was allowed to stay over in her room on her final night (she had been fully sedated) and it was just me and her for her last moments.

I am so sorry you're also going through this

Original poster

Finfintytint · 22/02/2019 07:56

Thanks. I know that mum doesn’t want to be at home as she is fearful of being alone. Will keep fighting for her but it’s so draining isn’t it? We’ve been told not to worry about visiting times but in reality the Ward door has blinds so staff can’t see who is ringing the bell for entry so we are ignored for about 20 minuets every time we visit.

OP posts:

JenniferJareau · 22/02/2019 07:56

for you Finfintytint

Mum died at home and I was her carer. The last two days she was basically unconscious. The Macmillan nurses came regularly to look after her. She died peacefully which was, for want of a better word, good.

Visit as much as you want to and tell her how much you love her a lot.

Original poster

Finfintytint · 22/02/2019 07:58

Palliative care team has been severely scaled back at the hospital and are practically non existent.
Will ask a few more questions, thanks.

OP posts:

Nodancingshoes · 22/02/2019 08:01

My Mil was moved to a private room in a nursing home for her last days - she was in her 50's with terminal lung cancer. Thinking of you

freddiemercury · 22/02/2019 08:02

I'm so sorry for you.... hugs for you all

Eliza9917 · 22/02/2019 08:08

There's a process or stages the body goes through at the end too.

I had no idea of what happens so googled when a relative was in a hospice.

Google it so you are prepared for what happens. I'd put up a link but am about to leave for work.

for you.

Original poster

Finfintytint · 22/02/2019 08:09

Yes, have googled and mum ticks nearly every box

OP posts:

labazsisgoingmad · 22/02/2019 08:18

if you have chance for a hospice place you would never regret it. df was in a hospice for his last days after fighting lung cancer. in the end he was so well cared for he lived 3 months. his passing was peaceful and the team were always there for the family to chat cry or just share a cup of tea. my dm died in a small cottage hospital no longer open but her care was wonderful too. i hope you can get what you wish and i hope your mother passes peacefully and pain free sending big hugs to you

Cheeeeislifenow · 22/02/2019 08:42

I have no advice op but just wanted to send you a big hug, it sounds like you are looking after your mum so we'll I bet she is very proud of you x x x

Original poster

Finfintytint · 22/02/2019 08:47

Thanks for all the hugs everyone. It means a great deal. I think she is proud of us. We tell her regularly she’s done a good job!

OP posts:

AndNoneForGretchenWieners · 22/02/2019 08:51

My DH became too unwell for a transfer to the hospice, so was moved to a single room and I moved into it for the last week of his life. He had two syringe drivers and the care in the single room was far better than it was in the 6 bed room - we suspect because the nurses only had one patient in the room rather than attending to one and then having 5 other patients calling them over. His last few days were very distressing (he had brain mets and was confused and aggressive) so wouldn't have had a dignified passing in a room with others there.

EyeOfTheTigger · 22/02/2019 09:15

Sorry to hear of your situation OP. I lost my DF 18 months ago to pancreatic cancer. My DM and I cared for him at home and he was moved to the hospice late, as he didn't want to pass at home. Getting him moved out of the house was traumatic as he was in so much pain and he died early the next morning. As he'd been in the hospice less than 24hrs it became quite bureaucratic as the coroner had to be involved and it took forever to get any formalities under way.

If your DM gets moved to a hospice it would be highly likely she'd be in a single room.

Now your DM has stopped eating and only having very small sips of water, then she will indeed be moving in to her final days. As others have said, be there as much as you can to comfort her, and say what needs to be said. My DF spent a lot of his last days asleep due to the morphine, but we still spoke to him as they say the hearing is one of the last senses to go. Sending you big virtual hugs as you go through these difficult days.

mentallyfacked · 22/02/2019 10:38

It sounds like your mum has done a wonderful job bringing you up. Sorry I can't offer advice, but I hope one of the suggestions mentioned by others on the thread is successful. Didn't want to read and run. Hugs x

Drum2018 · 22/02/2019 10:44

Maybe firm words with staff is needed to ensure that you have unlimited access now. Waiting 20 mins to get into the ward is unacceptable.

GorkyMcPorky · 22/02/2019 11:55

I was very glad to get my DM off the ward, where she was subject to abuse from a patient opposite her with dementia, stifling heat (not allowed a fan for infection control purposes) and witnessing the indignity of another patient who was left naked from the waist down whenever her nightie rode up. The hospice was peaceful. I had to fight tooth and nail to get her there though, and only did so at 5pm on a Friday. Any later and she's have spent her last weekend on the ward.

Hearthside · 22/02/2019 22:06

I am so sorry op you are going through this .My DF passed away of cancer last year and myself and my DS cared for him at home.We also live rurally .We had the most amazing support from the local District nurses and our GP .We had a hospice nurse two nights a week to give me chance to go home as i did the nights as well as some of the daytime split with my DS. They always had time to listen i remember getting really upset one day having bottled it all in they were our angels and i will never forget their support .I work as a carer but when it came to caring my own it was incredibly hard .We had carers come in to do personal care and i really did appreciate them,probably drove them mad at times cause i wanted everything do right .It does sound op like your mum is coming close to to her final days .It may now be too much for her too move to a hospice if it isn't close by but if you could get a separate room it would be kinder for you and your mum .If your mum can no longer manage sips of water as time pass then just keep her mouth moist .And just be there ,your mum will know even if she doesn't appear to respond .You sound like an amazing daughter and i am sure your mum is rightly proud of you .But remember to look after you too .Even if it's a walk and a cup of tea it is important you take care of yourself too .The 20 min wait is awful that shouldn't be happening .My DF was on a syringe driver for the final few days and went very peacefully as he wanted .I hope your DM passes peacefully and pain free .

Original poster

Finfintytint · 23/02/2019 04:30

Thank you

OP posts:

Decormad38 · 23/02/2019 05:09

Have you spoken to her consultant. Ask him what the plans are? Book an appointment. Ensure she is somewhere she is comfortable with. Are they treating the pneumonia is that why she has stayed on that ward?

DroningOn · 23/02/2019 06:10

When my FIL died last year the staff said he was simply too weak to endure a move.

The out him in a side room on the, ward and we all had privacy when it happened.

Ask about a side room, it made a huge difference for us. Don't think we'd have coped with the, last few hours on an open ward.

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