I so hope this is the end (dying)

[Soupsetscared]

Mum broke her hip on Monday, had an operation on Tuesday.
She has been suffering with dementia for a number of years.
Lives in a residential home. She does have a DNAR in place.
Went to see her Wednesday and she is just curled up sleeping alot.
Same Thursday and Friday. The only thing she has eaten is a spoon
of porridge. One small sip of water. Ripped the canulla out herself.
Now is refusing all food and drink.
Yesterday the only words she said was to call me 'evil and a fING bith.
Today she hasn't eaten or drunk anything.
Hospital say it's not at the end yet. Will call me when it's nearly time, so I can
ring my brother and aunt.
I have never heard mum swear. I'm her only daughter and upset that she
thinks that about me.
Am I evil hoping it is the end. She has no life can't remember any of her family
and friends. Forgotten she was ever married.
This was someone who was the first on the dancefloor and last to get off.
Enter a beauty contest before marriage and won.
PA to the CEO of a top company.
Loved everyone and anyone.

No you're not evil. I had to watch my beloved mum die from this awful disease and in the end I was willing for her to be at peace.

I went to see the staff nurse but unfortunately there were 2 emergences so after 90 minutes I left.
Seeing her hopefully this afternoon visit.
Mum was asleep all the time I was there. Tried to hold her hand but she wouldn't let me.

Huge sympathies, OP. For both your sakes I hope it’s the end, too. Dementia is such a cruel disease.

My DM at 91, with already fairly advanced dementia, broke a hip, and we assumed that this would be the beginning of the end, as it so often is. But she had the general constitution of a rhinoceros, recovered well, and went on to 97 - with still more advanced dementia.🙁
TBH a swifter end would have been much more merciful.

On a much lighter note, we were impressed with how the hospital nurses coped with her. As a visiting DSis heard, she was frequently saying that she was going to tell her father of them, and he’d have them all put in prison.

Whereupon one of the nurses said, ‘Well, I’ve spoken to your father, and he says you’ve got to eat your lunch.’

This seems a bit odd. Where do they imagine your mother is going at this stage? Do they think someone will try to take her out of the hospital?

@Kiwano no one wants to remove her.
Maybe she is saying I want to go home and even though she is not in
her right mind they have to treat her with dignity.
Will find out more this afternoon.

Hope she is settled this afternoon when you visit, you get to say all you want to her, including you will be fine and she can go when she is ready and today is the day. Heartbreaking you don't want them to suffer but you don't want them to go.

I'm I being unreasonable thinking about what the hospital is doing.
Mum is curled up not eating but has had a couple of sips of juice today.
Sunken eyes.
Last night they put her on a drip for an hour.
Of course she is hydrated from the drip. So has a bit of colour in her cheeks.
Hasn't been for a poo as no food has gone in.
Mumbling about her mum and dad.
But did acknowledge me and my brother.
I spoke to the Staff Nurse and asked if they are prolonging her life
by giving the drip. All she said was that they are caring for mum.
Blood test is arranged for tomorrow morning.
I'm so confused about everything today.

I wouldn’t say they were prolonging her life but they are making her comfortable. Thirst is a horrible thing to see someone suffer, as anyone who has witnessed someone on the old Liverpool pathway will confirm.

There's really variable evidence about iv fluid at end of life - some indicates that it makes people more uncomfortable, some that it's more comfortable. It's unlikely to prolong things much. The evidence is so variable in fact that the team are very right to treat your mum based on the symptoms they see at the time.

When my mum was very ill, the hospital were beyond lovely. The senior doctor took the family into a meeting to discuss options and kindly suggested it was, as we suspected, near the end and that too much intervention would not be kind. Then they let me stay in her room even though it took a couple of days for her to go. It was a 'good death' as they say. The fluid may just help her be more comfortable and perhaps have a few episodes of lucidity with you, as seems.
I send you love.

This was us a year ago.

Im afraid you have to be quite demanding to get proper answers, that doesn't mean rude or aggressive, but firm in the extreme. If the staff nurse cannot tell you what you want to know then keep escalating until you can speak to the doctor (or whoever) who does know.

DH at one point ended up standing in the corridor outside the consultants' office for about half an hour before he found out what he wanted to know.

I'm so sorry you're going through this @Soupsetscared - when my partner was put on EOL care last year after contracting sepsis, he had a temperature on the last morning so they gave him IV paracetomol to try and bring it down but nothing else. I thought that was strange, I was lucky to be with him as he took his final breaths and it was very calm and peaceful. I truly wish your experience will be the same

So sorry OP. It's so, hard isn't it.
The sleeping lots and hardly eating means you could be looking at 1-2 weeks.
It's totally heartbreaking.
Ask the palliative care team to make her as comfortable as possible with pain relief.
Take breaks from sitting with her.
Tell her you love her 💛

Have I missed something? It sounds like OP wants her DM on EoL care but the hospital clearly aren't doing that. OP have you explicitly discussed with the medical and nursing team what your mum's care plan is as they see it and whether that aligns with what you want and with what is best for your DM? People here can post all the kind words they want but if the hospital are providing interventions then your DM is going to keep ticking over.

@whatausername that is what as family we want.
I have spoken to 2 staff nurses asking if they are giving intervention care.
They just keep saying they are making her comfortable.
Of course none of us have seen a doctor on the ward as they go in the morning.
Even physiotherapist aren't going so mums legs are not being used.
It's taking 3 nurses to turn her over and all she does is moan then tries to
turn back again.
Can't even have open access as there are no single rooms available.

I'm not sure that that necessarily makes the patient more comfortable. At the end of life essentially the digestive system shuts down and the person really isn't hungry or thirsty. I remember my mother at that stage saying that even drinking just a little made her feel uncomfortable. It also becomes necessary to manage the risk of the lungs becoming overloaded with fluid when the heart and circulation are not working properly.

Is it not possible to make your point without implying criticism of people for make kind comments?

Our mum was in a care home with DNRs and an explicit 'no transfer to hospital' documents signed by my brother and I (joint medical POAs). We did not want her life prolonged in any way as she had been 'gone from us' for a long time.

Mum had been diagnosed with Covid and had started physically going 'downhill'. She then started refusing food and liquids. Since she was in a care home setting, the question of IVs never arose. The lovely staff told us she was being given pain meds so was in no pain and that 'her heart knows what she wants' and her refusing food and liquids was her heart's way of helping her 'go home'. They kept her comfortable and her lips and mouth moist with sponges. She died peacefully about 48 hours later.

Is there any specific staff at the hospital you can speak to about the 'legalities' and practicalities of end of life care? It may be that in a hospital setting they are required to give IV fluids, but it would be good to know for sure. The hospital nearest us (US) has a specific hospice nurse-practitioner that works with families, helping them to navigate end of life matters, both by explaining the processes of dying and navigating care decisions. If where your mum is has something like this, it may help you feel more at peace about the care your mum is getting, or to help you change the course of it.

It does vary from patient to patient. As a pp said, it might have been appropriate in this case. We don’t know. I do know that the blanket refusal of ANY fluids, including swabs, is incredibly distressing to both patient and relatives, and was part of the Liverpool pathway 20 years ago. It was downright cruel.
All patients are unique individuals and must be treated as such. Dignity doesn’t always go hand in hand with dying, but we have the knowledge and medical abilities to remove pain and distress for those dying.

My OH did not drink for the whole time he was dying - about 10 days. But a dear little carer at the Nursing home used to kneel down by him and clean his mouth and squeeze tiny drops in to make his mouth less dry and uncomfortable.

Hi OP, so sorry you are going through this. I am in a similar place with a relative with end stage cancer, in is much pain and distress and just wants to die and we are just watching them suffer. It is hideous. He had also signed a DNR and has been so clear about his intentions and has been taken off a drip in the last few days, and any treatment is being seen as an intervention so they are not doing it. He just currently has huge amounts of pain relief. We are at peace because we know this is his wish even though watching him go through this is heartbreaking. I wish you all the best.

Absolute nightmare had a phone call from the home mum is in to say that mum is being discharged today or tomorrow from hospital.
Contacted the hospital to say the doctor this morning thinks mum is medically fit to leave as she is walking around the ward on a frame with only someone beside her.
DB has just been and mum hasn't been out of bed since last week and that was because the therapist lifted her into a chair.
Has only eaten 2 small bites of toast and 15ml of juice today.
Nothing to eat yesterday only a few sips of juice.
For the 40 minutes he was there she didn't wake up.
The home are going out tomorrow to do their own assessment.
Yesterday it took 3 nurses to change her pad.
Couldn't even lift herself up for a pillow.
Someone somewhere is telling lies.
All the other ladies in the bay are saying mum is hardly awake never mind walk.

Grrrrrrrrrrr I'm so frustrated.

Ask, there's obviously been a mistake. It's probably an overworked FY doc who's got confused, or they've been given wrong info.

Soupset Insist on a meeting with the Doctor that decide she was fit to leave, insist the meeting takes place at your mothers beside. Refuse to have her moved until this has taken place. This will have come about because a know nothing bed manager is demanding the near dead are shunted to care homes. They tried doing this with my seriously ill friends Mum, she had delirium amongst other issues, hadn't opened her eyes in days, was vomiting blood but seemingly she was going to the loo on her own and had even had a shower ! the nurses were told to "get her out of here to the Biggart ( local overspill) she can die there" Thank goodness the lady in the bed beside her was lucid and knew what was going on. Hospitals are not the lovely caring places we like to think they are. Fight on your Mums behalf, mind you it would probably be better if she did go to a care home, she would have a better death and you wouldn't have to sit in a ward as your mum as she spends her last minutes on earth.

You just have to be that relative I'm afraid. No one wants to do it but it's the only way. Say you will ring the ward every half hour until you can speak to the doctor who is in charge. Get their name, keep ringing until you can speak to them.

When do they go in? Try to be there, lurk and pounce. Ask 'what's next, who will be doing that, how do we make this happen?'

it's horrible but we had two years of this and it's the only way you will get the answers you want. You will all just be left hanging otherwise and so will your mum.