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Final days for Mum

(100 Posts)
Finfintytint Thu 21-Feb-19 20:31:20

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?

whyhaveidonethis Thu 21-Feb-19 20:35:00

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

Drum2018 Thu 21-Feb-19 20:39:48

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?

EleanorLavish Thu 21-Feb-19 20:44:28

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

YetAnotherThing Thu 21-Feb-19 20:47:46

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....

Finfintytint Thu 21-Feb-19 20:49:25

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.

Mumof1andacat Thu 21-Feb-19 20:49:30

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.

TildaTurnip Thu 21-Feb-19 20:51:19

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.

flowers

Finfintytint Thu 21-Feb-19 21:03:33

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.

EleanorLavish Thu 21-Feb-19 21:05:15

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

helpmehelpmygirl Thu 21-Feb-19 21:08:27

I’m so sorry you’re going through this flowers
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

APurpleSquirrel Thu 21-Feb-19 21:13:46

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?

Oorwulliesbucket Thu 21-Feb-19 21:19:35

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 flowers

Drum2018 Thu 21-Feb-19 21:24:31

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.

Poshjock Thu 21-Feb-19 21:25:21

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.

Finfintytint Thu 21-Feb-19 21:30:30

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

Claireshh Thu 21-Feb-19 21:49:27

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.

CoolJule43 Thu 21-Feb-19 21:57:31

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.

Amfeelingfline Thu 21-Feb-19 22:37:07

flowers 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

chaoscategorised Thu 21-Feb-19 22:44:21

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. flowers for you. Xxx

chaoscategorised Thu 21-Feb-19 22:46:48

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

Werve1 Thu 21-Feb-19 22:55:53

My Darling mum passed away 8 years ago this saturday coming sad 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

Mustbetimeforachange Thu 21-Feb-19 23:01:22

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.

Finfintytint Fri 22-Feb-19 05:55:13

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.

RedWineIsFabulous Fri 22-Feb-19 06:13:00

💐 for you op. Love to you and your DM

Finfintytint Fri 22-Feb-19 06:23:35

Thank you.

Nat6999 Fri 22-Feb-19 06:23:55

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 Fri 22-Feb-19 06:38:01

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

Finfintytint Fri 22-Feb-19 06:38:17

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

2018SoFarSoGreat Fri 22-Feb-19 07:08:56

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 Fri 22-Feb-19 07:49:11

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 flowers

MsSquiz Fri 22-Feb-19 07:54:49

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 thanks

Finfintytint Fri 22-Feb-19 07:56:01

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.

JenniferJareau Fri 22-Feb-19 07:56:09

flowers 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.

Finfintytint Fri 22-Feb-19 07:58:56

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

Nodancingshoes Fri 22-Feb-19 08:01:29

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 flowers

freddiemercury Fri 22-Feb-19 08:02:17

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

Eliza9917 Fri 22-Feb-19 08:08:35

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.

flowers for you.

Finfintytint Fri 22-Feb-19 08:09:39

Yes, have googled and mum ticks nearly every box sad

labazsisgoingmad Fri 22-Feb-19 08:18:10

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 Fri 22-Feb-19 08:42:26

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

Finfintytint Fri 22-Feb-19 08:47:34

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!

AndNoneForGretchenWieners Fri 22-Feb-19 08:51:13

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.

flowers

EyeOfTheTigger Fri 22-Feb-19 09:15:03

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. flowers

mentallyfacked Fri 22-Feb-19 10:38:07

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 Fri 22-Feb-19 10:44:28

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 Fri 22-Feb-19 11:55:39

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.

thanks

Hearthside Fri 22-Feb-19 22:06:55

I am so sorry op you are going through this flowers.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 flowers.

Finfintytint Sat 23-Feb-19 04:30:43

Thank you

Decormad38 Sat 23-Feb-19 05:09:20

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 Sat 23-Feb-19 06:10:53

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.

Grace212 Sat 23-Feb-19 08:31:52

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 Sat 23-Feb-19 08:39:06

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 Sat 23-Feb-19 08:51:16

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 Sat 23-Feb-19 10:02:49

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 Sat 23-Feb-19 11:12:22

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 Sat 23-Feb-19 11:39:42

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

Finfintytint Sat 23-Feb-19 17:56:52

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.

JenniferJareau Sat 23-Feb-19 18:47:17

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

Good luck flowers

UtterlyDesperate Sat 23-Feb-19 18:54:39

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 Sat 23-Feb-19 19:07:15

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 Sat 23-Feb-19 19:08:40

Sending kind thoughts to you and your mum flowers

Finfintytint Sun 24-Feb-19 18:57:15

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.

DorisDances Sun 24-Feb-19 19:22:48

Thoughts with you and your mum OP flowers

Grace212 Sun 24-Feb-19 20:51:22

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 Sun 24-Feb-19 21:12:22

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 Mon 25-Feb-19 09:16:33

youtu.be/Ic0mjPpCsks 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

Finfintytint Wed 27-Feb-19 19:32:56

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?

2018SoFarSoGreat Wed 27-Feb-19 19:51:07

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 Wed 27-Feb-19 20:01:40

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

Finfintytint Wed 27-Feb-19 20:01:51

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

Finfintytint Wed 27-Feb-19 20:05:08

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.

Grace212 Wed 27-Feb-19 21:11:50

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 Wed 27-Feb-19 21:32:21

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

Nothininmenoggin Thu 28-Feb-19 02:18:32

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 Thu 28-Feb-19 04:00:27

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

Finfintytint Sun 03-Mar-19 16:54:55

Thank you all so much for your kind words. Mum died over the weekend. We were all with her and she is now free from pain and distress. Xx

DramaAlpaca Sun 03-Mar-19 16:57:58

I'm so sorry for your loss. I'm glad you were all with her at the end & that she is now at peace. Sending love flowers

Amanduh Sun 03-Mar-19 16:59:20

Lots of love to you all flowers xxxxxxx

TidyDancer Sun 03-Mar-19 16:59:56

So very sorry for your loss. Thinking of you. thanks

twinnywinny14 Sun 03-Mar-19 17:09:39

Thinking of you, so sorry for your loss. Now she is free from pain and discomfort but yours is just beginning, take care of yourself and each other x

kazillionaire Sun 03-Mar-19 17:11:45

Thinking of you all xx

Amfeelingfline Sun 03-Mar-19 17:19:13

💐 I am really sorry about your loss, she was surrounded by those she loved and who loved her back. You did fantastically being there for her, not many people do it xxxx

beeyourself Sun 03-Mar-19 17:29:44

I'm so sorry.

ourkidmolly Sun 03-Mar-19 17:37:39

How lovely that you were there for her and she died with her family close by knowing she was loved. That's all anyone could ever ask for.

redastherose Sun 03-Mar-19 17:38:40

Sorry for your loss 💐

Finfintytint Sun 03-Mar-19 18:50:26

Feel privileged and fortunate to have been there at the end. Have attended so so many lonely and isolated deaths.

YoThePussy Sun 03-Mar-19 18:57:52

OP it is indeed a privilege to have been with your DM in her moments. I am so sorry however to read that this has occurred. You make sure you take good care of yourself now, tiring days and weeks ahead which you will need all your strength for.

Sparklesocks Sun 03-Mar-19 18:59:03

Love to you OP, thinking of you and your family ❤️ I’m glad you got to say goodbye xx

HaventGotAllDay Sun 03-Mar-19 19:00:41

Bless you and your family. flowers

MutantDisco Sun 03-Mar-19 19:08:57

thanksthanksthanks

Jacksback Sun 03-Mar-19 19:24:35

Sorry for your loss 💐

2018SoFarSoGreat Sun 03-Mar-19 20:06:15

Oh so sorry for your loss, but so glad you were able to be with her. Hope you get some time to recover now. This is such a hard loss 💐

Nothininmenoggin Tue 05-Mar-19 00:41:02

So sorry for your loss. Losing your Mum is devastating but I'm so glad you were there with her to say goodbye. Be kind to yourself in the next few weeks and months it's tough but the memories you have will see you get through it. flowers

Finfintytint Tue 05-Mar-19 17:32:44

Thank you. On a practical note. I want to keep mum’s house running until we decide to sell. I know that banks will usually allow money from her current account to pay for the funeral but I wondered about utility bills? Once the account is frozen do I need to take on the gas, electric etc or do banks allow the direct debits to continue. Due to see her solicitor later in the week so she will probably be able to assist but thought I’d ask.

alwaysdancing Tue 05-Mar-19 18:33:40

Yes, you (or someone else in the family) will need to have the bills transferred to your name and bank account - IME utility companies are generally good about dealing with this sensitively (except TV licensing who constantly hound ‘the householder’!). You (or your solicitor) can also inform the council, so that council tax can be suspended (they’ll refund any overpayment if it takes a while to do this), and don’t forget about insurance companies (e.g. home insurance and car insurance). Your solicitor should be able to help you with checking you’ve covered everything, although we also got a checklist when we registered the death (and from the funeral director, I think).

Take care of yourself flowers

Finfintytint Tue 05-Mar-19 18:42:17

Thank you Always, that’s really helpful to know.

Finfintytint Tue 05-Mar-19 19:27:25

This is so overwhelming. Mum lived frugally, shopping in charity shops and making do and mend. I had no idea she could have been sitting on a beach on the Algarve, sipping G and T and nibbling on lobster if she wanted. How odd.

YoThePussy Wed 06-Mar-19 16:12:38

Fin when my DM passed away the bank were happy for utility bills to be paid out of her frozen bank account. This continued until probate was granted. Well worth asking if this could be done.

GirlsBlouse17 Wed 06-Mar-19 16:23:04

flowers

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