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Original poster

I so hope this is the end (dying)

346 replies

Soupsetscared · 10/06/2023 18:14

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.

OP posts:
doitwithlove · 12/06/2023 19:34

Sorry to read the update @Soupsetscared , the hospital are possibly looking at your mum being discharged, sent back to the home as there is little else they can do. 😔

Original poster
Soupsetscared · 12/06/2023 20:16

Unless mum is either walking with a frame and only needs 1 carer the home will not let her go back.
Waiting for the home assessment tomorrow.

OP posts:
Mischance · 12/06/2023 23:06

Oh God I remember all this with my late OH - "He can transfer with one" - could he hell!

Interested in this thread?

Then you might like threads about this subject:

Dementia & alzheimer's
Original poster
Soupsetscared · 13/06/2023 18:01

Residential home went to assess mum.
The 2 physios got mum out of bed with lots of equipment.
Tried to get her to stand with a frame which they couldn't.
Then they tried to get her to just stand beside the physios which last 2 seconds.
One of the discharge team apologiesed for giving wrong information.
The hospital are now interested in getting a dietician involved as mum only
weights 41kg. Today she has eaten 1 small piece of toast.
Struggling to get her to drink.
Physios are going to give intense exercises and contacting the home on Friday
to give an update, home will then phone me.
Mum was either asleep or confused while I was there.

OP posts:
vipersnest1 · 13/06/2023 20:20

It might sound flippant, @Soupsetscared, but really try not to worry about discharge if you can.
Every time they contact you, keep singing the same song 'she can't get out of bed or even stand, so there's no way she can be discharged yet' - put the onus back on them so you don't feel stressed.
Do you want the dietitian to be involved? Do you think your Mum would? (If it was the real 'her' speaking? Serious question, although it's a bit brutal, but it might help you to consider whether or not intervention is appropriate or not (and you will of course need to get the appropriate HCP's opinion on this). I know what my DM would have said, but it might not be the same answer for you.
Try to make sure you take some time to look after yourself, as trite as that may sound. Flowers

Original poster
Soupsetscared · 13/06/2023 20:43

@vipersnest1 thank you for your message.
Mum is very fussy about her food.
I've shown the nurses how to make her a cup of tea very strong no sugar and it must only look at the milk.
She wouldn't touch it.
Still fiesty even when asleep

OP posts:
vipersnest1 · 13/06/2023 21:07

@Soupsetscared, that's made me smile, my mum was very fussy too! Smile
and can I add that I think you've got a bit of that fiestyness too!

SammyScrounge · 14/06/2023 01:24

Soupsetscared · 10/06/2023 18:14

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.

She doesn't think you are evil or a bitch - that's the dementia talking, really. So don't let yourself be upset by seemingly vicious attacks on you.An hour later she will have forgotten what she said. Prompt her to remember the good times of the past

Original poster
Soupsetscared · 16/06/2023 17:48

Don't know if anyone is still interested.

Mum is just lying on the bed. We have about 10 minutes of lucidness during our visit.
Today the residential home that she has been in have refused to let her go back.
Hospital are going to find a nursing home with EMI.
All she has eaten today is 3 spoons of porridge. 1 spoon of beans and 2 small pots of ice cream. Only taking tiny sips of fluids.
The nurse was going to put her on a drip which is attached in her back as otherwise she pulls out the canulla.
Someone came from the discharge team to ask mum some questions.
She doesn't know she is in hospital.
Doesn't know she has had an operation.
Doesn't know where she has or how she injured herself.
Did know my full maiden name but told me I was too young to marry.
Couldn't say who my brother was.
Mum can't turn over in bed. I gave her a wet flannel to wash her face and she couldn't do it. Nor comb her own hair.

OP posts:
SnapPop · 16/06/2023 17:50

Oh OP Sad this is devastating to read. I'm so sorry Flowers

thisisasurvivor · 16/06/2023 17:58

So so sorry OP

There are no words xxxxxx

HRTQueen · 16/06/2023 18:17

This is so so sad for you all

I hope her suffering ends soon, it’s cruel for you all

Iammetoday · 16/06/2023 18:31

So sorry to read this, just starting on a similar path as yours, all my sympathy to you x

bonfirebash · 16/06/2023 18:33

I'm so sorry. Have you got power of attorney? My dad didn't manage to get it in time for my mum but thankfully the hospital were sensible and we said no life extending interventions
It makes me so mad and so upset (I'm worried as strong history of dementia in family) that we can't just say enough, you wouldn't let an animal be like this

When someone isn't going to improve we should be able to decide the end to be with dignity and love and grace
We had to keep saying unsafe discharge

Kiwano · 16/06/2023 18:42

Soupsetscared · 13/06/2023 18:01

Residential home went to assess mum.
The 2 physios got mum out of bed with lots of equipment.
Tried to get her to stand with a frame which they couldn't.
Then they tried to get her to just stand beside the physios which last 2 seconds.
One of the discharge team apologiesed for giving wrong information.
The hospital are now interested in getting a dietician involved as mum only
weights 41kg. Today she has eaten 1 small piece of toast.
Struggling to get her to drink.
Physios are going to give intense exercises and contacting the home on Friday
to give an update, home will then phone me.
Mum was either asleep or confused while I was there.

What on earth was the point of that charade? I would seriously enter an official complaint about subjecting your mother to that ridiculous process. If they wanted to know if she could stand, I'm perfectly sure they could have found out by asking the nurses.

Zonder · 16/06/2023 18:52

I'm so sorry it's come to this.

Mischance · 16/06/2023 19:27

I am sorry she is so unwell. I am sure you wish they would just leave her in peace.

Mammillaria · 16/06/2023 19:35

I am so sorry to read this, your lovely Mum deserves so much better

Piscesmumma1978 · 16/06/2023 19:38

Not evil at all lovely 🎉

That's not your mum as you knew her. I'm sorry you're going through this xx

7eleven · 16/06/2023 19:48

Dear OP, there’s lots of us on here who have trodden this sad path. Our hearts are with you and our arms are holding you up.

vipersnest1 · 16/06/2023 19:54

I'm still listening, @Soupsetscared.
Maybe it's time to ask for a phone call or meeting with her consultant to ask what their aim is, and see if it aligns with yours.
(For instance, if the drip is intended to be life-extending, is that what you would want, or what your Mum would want?
Sorry if that's too harsh (I really am, but do think you should ponder on this as it might be helpful in what you say and do) - I deeply remember when DC1 was in hospital with a life-threatening illness, and she had overheard a conversation late at night with the patient next to her, as to whether that patient wanted to continue with treatment which would extend life, but not improve the quality. I won't tell you what the patient decided as that isn't relative to this post, but will tell you that the patient had her wishes carried out. I know you will be your mum's advocate in this, and would add that, judging from your posts, you really want the very best for her.

vipersnest1 · 16/06/2023 19:58

Posted too soon, @Soupsetscared.
And to say, again. Look after yourself. I can only imagine that you are run ragged by this. So do what you can reasonably do. It doesn't sound like your Mum is going anywhere imminently, so take some time to wind down and look after yourself however that may be. You can't pour from an empty bottle, as they say. Flowers

Original poster
Soupsetscared · 16/06/2023 22:05

Thank you each and everyone for your messages of support.

Anyone else who is going through this terrible time I send my love.
When is the law going to change so that no one else has to live with
dementia and has no quality of life.
Our love ones will not get better, there is no cure at this stage.

OP posts:
Kiwano · 16/06/2023 22:20

Hear, hear, OP. My mother was utterly miserable for the last two years of her life and desperate to leave it all behind. Though my preferred solution is a cure for dementia, no matter how much of a pipe dream that might be.

amicissimma · 16/06/2023 22:35

I'm sorry to read this. I've just been through similar with a much-loved relative, although her condition was all physical, which meant, of course, that she knew what was going on.

When she was in hospital we had to fight really hard to get them to give up the idea of sending her home. Neither her house nor her frail husband could meet her needs. I had to park myself on the ward and politely refuse to move until we had spoken to a doctor. Eventually we found the palliative care consultant who arranged for my relative to be transferred to a Nursing Home, via a spell in a hospice to be stabilised. It had to be a Nursing Home which had a Registered Nurse on duty 24 hours a day, to allow Controlled drugs to be administered. Not every Care Home is suitable.

If you can find out which is the relevant hospice I recommend contacting them for advice. If you can't get to speak to a doctor, and they should make sure they do speak to you, try phoning the hospital and asking for a Palliative Care doctor to call you.

I so agree with this: "Our love ones will not get better, there is no cure at this stage." I truly believe that a peaceful, pain-free end, among familiar staff, is better than a few more hours or days of suffering.