Final days for Mum

[Finfintytint]

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?

Hugs. What a terrible time for you. Have you spoken to macMillan? They should be able to advise.

Have they given her a single room at least? Moving her to another building/area to hospice might be physically too much for her now and that may be an issue. If she's on a ward with other patients ask if there is a room available to move her to so you and family can stay with her. If she's in a lot of pain they may set up a syringe driver which administers the drugs. If this is set up she will pass within days. Do you have other family support or close friends who can be there for you?

Is she being seen by the palliative care team? What would your mum like?
Sorry you are going through this OP.

Am sorry for you- Generally (near to us anyway, could be regional) hospices will move patients who have less than two weeks to live. Although you can miss the boat and it becomes too distressing to do the move, so then stay at hospital. Ask to speak to palliative care team for options....

Thank you. I've asked about a syringe driver and they are considering it. Mum has categorically said she doesn't want a room as she does not want to be on her own at all, although a hospice room may change that desire. They seem quite placid and respectful.

Ask the nurse/doctor about a possible transfer to a nursing home. I'm sure she would qualify for fast track continuing health care funding so her place in the home would covered by that funding.

I found the Macmillan nurses and palliative care team so useful. A bed cake up in the Hospice for my mum and we chose to get her moved from the hospital who had her on a ward where no one seemed to know what to do with someone dying. It meant the last week of her life was very calm. If you cannot get her moved then the palliative care team will be able to give more support within the hospital.

Once the team knew we wanted mum moved to a Hospice, as soon as a bed became available, she was moved.

I've tried the local nursing homes who offer palliative care. They are few and far between as we are very rural area and most offer care only. I'd have to offer longer sporadic visits over the regular visits I'd like to do.

Definitely make sure she is being seen by the palliative care team OP. Hospice beds can be very hard to get.

I’m so sorry you’re going through this
What would your mum want? Is there any way she would want to be at home? This can sometimes be quicker with a home palliative care team.
Again, I’m so sorry xx

I'm really sorry for what you're going through. I've been there too.
However When my mums cancer became inoperable we had several months to move her. I had to find a local care home willing to take her for palliative care, which I did but it took a few weeks. She passed about 4 months later.
Do you have a local Hospice who can offer any advice?

We had mum at home and we managed with an amazing home care team and amazing district nurses. We took turns so there was always someone in the house with her. No McMillan nurses came near us and accord palliative nurses weren't much use. Its so hard

If they are considering the syringe driver at this stage I think they won't move her anywhere. She could pass within a few hours, or max I've known someone to live after administering it is 4 days. I hope you are allowed to stay with her. Nursing staff are very aware of the very last moments in my experience so hopefully even if you aren't able to stay overnight, they will call you to be there in time. It's understandable that your mum would not want to be in a room alone now if she's aware of the situation. My heart goes out to you.

I had this (10 years ago tomorrow) with my mum. They kept trying to put her out of the ward she was in and when I complained I was told that it was like a sieve where the weight of patients coming into the hospital would push people like my mum out the bottom, despite the fact that my dad was only a couple of months out of hospital himself after a hip replacement and there was no facilities in the house at all - she couldn't even get to the toilet unaided and was on diuretics! In the end her GP fought her corner hard and got us a hospice place. It was by far the best place. My mum wanted to be there and the care was second to none. There is a much higher ratio of nurses to patients, so although she was in her own room, it was spacious and she had everything to hand, there was rooms she could go into to sit in company (usually the nurses or other families) and at night, one of the sisters used to sit in her room to do her paperwork because my mum couldn't sleep and they both enjoyed the quiet company. It is by far a much quieter and calmer environment and none of us regret the fight to get her there.

Is there a smaller "cottage" hospital nearer to you? I have seen some lovely facilities where, again, the nursing ratio is more favorable and the longer term and more stable nature of the patients often in there may offer something more like the hospice.

To answer your question, keep fighting. The nursing ratio and paliative care experience alone makes it worthwhile. I know that it may seem like the nurses are biding time with your mum, but in reality it is just the demands of the general ward, workload and number of patients, some very complex and a lack permanent speciality for your mum's situation in the ward that mean she gets less than the care that she needs and deserves.

Finally, I just want to wish you strength and love. These are difficult days and you will feel so much conflicting emotions right now. Be kind to yourself and be selfish about your's and your mum's needs.

Thank yo s much for your responses. I'm actually quire knackered and have been up since 2am so quite tired.

My Mum died in hospital due to complications from pancreatic cancer. From our families experience I would say talk to the nurses. They are so knowledgable about end of life care and work so closely with the palliative team. My Mum was too weak to be moved to the hospice. She was bedbound but still talking and laughing although quite sleepy. The palliative nurse said she didn’t think my Mum would survive the transfer. My Mum had a driver and she pretty much stopped drinking and eating around three days before she died. She would have sips of water and was very calm. My Mum was peaceful and calm but I found the whole thing very stressful and frightening. My brothers and sister were ok and found the process upsetting but peaceful. I’ve mentioned this as I felt I was letting my Mum down as I found the last few hours difficult and couldn’t stay in my Mum’s room. Talk with your Mum if you can. Leave nothing left unsaid. Don’t be frightened. The nurses will be able to guide you. If you want to ask me anything specific please do. You can message me privately if you wish. Sending you, your Mum and family lots of love.

I am sure you will be told that there is open visiting for you now and, considering how your mum feels, I would make sure you or another family member is there 24/7.

Just hold her hand and make sure you don't leave anything unsaid.

If she can be moved to a hospice that would be good as they are such specialists and really help people to come to terms with their impending passing and remove their fears.

I wish you strength and courage in the days and months ahead.

to you, I have no advice as when my mum died last year it was in France and the system there is different, but didn’t want to read and run

Oh I'm so sorry. I've been through this a few times, one very recently, and it's not nice. IME hospices are incredible places - a totally, totally different atmosphere to a hospital. Calm and nurturing and they give you time to grieve, even preemptively. They're also really good at explaining what's happening and what to expect (breathing will start doing X, her skin might start to look Y) in a way that takes some of the fear out of it. It made witnessing the process of dying a really serene, almost spiritual experience which was the nicest possible way to remember it (and I'm not religious, not remotely woo at all).

Mostly though - remember your own basic needs if nothing else. After a week of being in the hospice having barely showered, slept or eaten, I realised I was getting ill and it made the whole process much harder because I needed my shit together for all the stuff that happened after. for you. Xxx

Argh I'm so sorry, I misread the post as asking if you should get her moved to the hospice or not! Agreed with PPs who say speak to Macmillan if you can. And my advice about looking after yourself still stands x

My Darling mum passed away 8 years ago this saturday coming :( we had the most amazing support from MacMillan nurses and also Marie Curie team, and she spent her last days in our local hospice.
My dad, brother and I created a rota, and for 2 weeks she was never alone, My brother was with her overnight, then Dad went in the morning, my brother came home, had a sleep, then he looked after my kids, and i went for afternoon, then my brother took over and I came home to cook meals etc. It was very hard going, but i dont regret a single extra moment i had with mum. near the end i was there for 36 hours straight, my mums best friend came to sit with her, and i was able to pop to the local asda for some new undies and san-pro! I couldnt be asking my dad or brother to help out with that stuff. There was a family room in hospice and i was able to shower etc.
As a previous poster said, talk to your mum.. while mum could still talk she had kept her sense of humour! at one point my sister was there and she sent us out of room so she could have a nap, half hour later she sent a nurse to say we could come down off the nawty step!
It may sound silly but laughter can really help xx
all the best xx

You asked what to expect. Listen to this week's "You, me & the big C" podcast from this week if you have time. The first half is about palliative care & the second half about end of life care. The end of life section is quite comforting & tells you what to expect in the last days. I have been traumatized by sitting with both my parents as they died & this gave me some comfort.
If someone is going to stay with your mum I would try & get her moved to a side ward. You are then free to talk to her when needed and can leave nothing unsaid without disturbing other patients. It's quite inhibiting having other patients around. My father said his goodbyes to my mother after 60 years together on the ward & had to tell her she was dying. Actually she was then moved, but it must have been hard for others to hear.

So many kind responses here, thank you. Mum knows she is dying and we've talked about it quite a bit. Her concern is that it's taking too long.
She has pneumonia now and is also quite confused (she thinks I have killed someone and am on the run) so is anxious and distressed too.
She stopped eating about two weeks ago and they've taken her off the drip. She is very thirsty and only drinking minimal amounts so I think the end is imminent.
Thank you again for all the advice.

💐 for you op. Love to you and your DM

Thank you.