• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Progression .....

BrianSausage

Registered User
Nov 2, 2018
29
Hi all

Things have moved on with mum.
She had a horrendous night on Sunday. Agitated, pulled the syringe driver out, kept throwing the bed clothes on the floor and managed to undress herself!

Yesterday I turned up at the NH at 8.10am. Mum has just had a new driver fitted (and was so obviously exhausted from her antics on Sunday night) and I walked into her room to find a carer trying to get porridge into her! He had propped her up in bed and her head was lolling she was so tired!! I lost it a little!!! I am sick of telling them not to force her to eat. You could see she didn’t want it.

So I stayed all day and took no nonsense!! She was very unsettled all day.

It now transpires that she was in pain, which was why she was so agitated! She finally settled (after an 2 injections of morphine) at 3pm yesterday afternoon!!

Today when her driver was changed they put 15mg of midazolam and 5mg of morphine in (she only had 10mg of midazolam before today). She has been settled and asleep all day.

So my question is .....
How long are we looking at before my mum sleeps forever? Does anyone have experience they can share with me.

Thank you x
 

canary

Registered User
Feb 25, 2014
11,372
South coast
No-one knows how long it is going to be, Im sorry.

One thing I can mention is that mum did the same thing - kicking off her bedding and trying to get all her clothes off. The manageress at mums care home said that when people get to a certain stage before passing away they feel to themselves very hot and that is why they cannot bear anything on them.

Well done for stopping the carer from forcing your mum to eat. Offering food is one thing, forcing them when they are refusing is another.

Im glad your mum is not agitated any more. You will know when she is getting to the very end as her breathing will change. Chayne Stokes breathing happens right at the end. It sounds very loud and "rough" and every few breaths there are gaps which get longer as time goes on. Near the end with mum I would frequently wonder whether she had passed and then she would take another gasp and it would continue. Once they get to that stage it is usually a matter of mere hours, although it went on for over 2 days with mum.
 

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
I have noticed on a couple of threads to day about how to tell if someone is near to the end, both post have said that the breathing changes and becomes loud and rough and there are long gaps between breaths (Cheyne Stokes), I feel I have to say that with my mum this was not the case at all, he breathing was pretty quiet and 'normal' right up to her last breath so I just wanted to point out that it is not always the same in everyone and this cannot be set as an indicator of the last few days or hours for every person.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
I have noticed on a couple of threads to day about how to tell if someone is near to the end, both post have said that the breathing changes and becomes loud and rough and there are long gaps between breaths (Cheyne Stokes), I feel I have to say that with my mum this was not the case at all, he breathing was pretty quiet and 'normal' right up to her last breath so I just wanted to point out that it is not always the same in everyone and this cannot be set as an indicator of the last few days or hours for every person.

Yes, it's not set in stone. My dad was breathing like that last Tuesday and I was sure he would die. He didn't, he's up and in rehabilitation today looking much better. Frightened me at the time though.
 

Linbrusco

Registered User
Mar 4, 2013
1,603
Auckland...... New Zealand
@BrianSausage
My Mum is pretty much at the stage of your Mum, but no syringe driver.
I find Mums whole eating/drinking, not eating/drinking the hardest to understand.
Beg of Dec Mum started refusing everything. Turning her head, saying No, waving your hand away when you try feeding her. She would drink small amounts so carers continuosly offered drinks & Fortasip.
Mum has removed her false teeth as shes lost weight, but shes done this before and managed quite well on most foods.
After 3 weeks, and thinking at Christmas this is it, she seemed to rally and started eating some porridge in the morning, a few spoonfuls of pureed food lunch & tea.
Then with drinks, they switched to a cup with a spout and handles and Mum started drinking small amounts on her own.
Then back to refusing food, only drinks & Fortasip.
Mum has been moved from Dementia Care to Hospital Care as she has lost all mobility.
Majority of the day sleeping or awake with eyes closed.
Nursing staff told me that when feeding her, and if she goes to wave your hand away, they hold her hand down and she will eat.
She still has a good swallow, she just takes more time to chew.
Im not sure of the holding her hand down :confused: so seeing Manager tomorrow.
 

BrianSausage

Registered User
Nov 2, 2018
29
I have noticed on a couple of threads to day about how to tell if someone is near to the end, both post have said that the breathing changes and becomes loud and rough and there are long gaps between breaths (Cheyne Stokes), I feel I have to say that with my mum this was not the case at all, he breathing was pretty quiet and 'normal' right up to her last breath so I just wanted to point out that it is not always the same in everyone and this cannot be set as an indicator of the last few days or hours for every person.
Yes you are right. I think we all need to remember that everyone’s experience is different. Not everyone will display the same symptoms.
 

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
Absolutely agree. From extensive experience of my mum's dementia I found this forum a great place to read everyone's posts to equip myself with as much information on how to cope with each change as it came about. But I also saw that my mum followed her own path that didn't exactly match anyone else's or the expected stages of the disease. Her death didn't follow the expected pattern either. We all have to just 'go with the flow' and what will be will be.
 

BrianSausage

Registered User
Nov 2, 2018
29
@BrianSausage
My Mum is pretty much at the stage of your Mum, but no syringe driver.
I find Mums whole eating/drinking, not eating/drinking the hardest to understand.
Beg of Dec Mum started refusing everything. Turning her head, saying No, waving your hand away when you try feeding her. She would drink small amounts so carers continuosly offered drinks & Fortasip.
Mum has removed her false teeth as shes lost weight, but shes done this before and managed quite well on most foods.
After 3 weeks, and thinking at Christmas this is it, she seemed to rally and started eating some porridge in the morning, a few spoonfuls of pureed food lunch & tea.
Then with drinks, they switched to a cup with a spout and handles and Mum started drinking small amounts on her own.
Then back to refusing food, only drinks & Fortasip.
Mum has been moved from Dementia Care to Hospital Care as she has lost all mobility.
Majority of the day sleeping or awake with eyes closed.
Nursing staff told me that when feeding her, and if she goes to wave your hand away, they hold her hand down and she will eat.
She still has a good swallow, she just takes more time to chew.
Im not sure of the holding her hand down :confused: so seeing Manager tomorrow.
I completely understand what you mean about eating. My mum would not eat for 3 or 4 days, and then eat breakfast lunch and dinner!!

It’s the same with drinking. Some days she will have over 100ml’s then only 200ml’s the following day! It’s so bizarre.
You must speak with her care team about them holding her hand down. I would think that’s forcing food.
I have had the same discussions with mums NH. I always have to lose my temper a bit before they listen to me.

Mum has now started coughing a bit when she drinks, and all her meds have been stopped, other then the syringe driver.

She’s asleep most of the time now and is anorexic looking. I’ve made it clear that I do not want her suffer, and I hope for her sake that this nightmare is over soon.

Good luck with your mum x
 

garfield3

Registered User
Jun 30, 2018
183
Hi Brian,
So sorry to read your post about your mum. She sounds a tough little lady. Not always sure if that is a good thing though, at this stage .
Anyway, when hubby was going through this with his dad last month it took about 2 weeks in the end. He was on morphine for pain and sleeping a lot. We got a false alarm about a week before thinking we would lose him. The day before he died he saw him and he was so frail , restless his palor was really pale waxy and had blue lines round his mouth and hands were very cold. He lasted 24th rs after that. Hubby did not notice breathing issues at that stage.

Hope it isn't too much longer for you all and your mum is at peace soon. Sending strength. Suexx
 

Moose1966

Registered User
Feb 10, 2017
140
Staffordshire
@BrianSausage
My Mum is pretty much at the stage of your Mum, but no syringe driver.
I find Mums whole eating/drinking, not eating/drinking the hardest to understand.
Beg of Dec Mum started refusing everything. Turning her head, saying No, waving your hand away when you try feeding her. She would drink small amounts so carers continuosly offered drinks & Fortasip.
Mum has removed her false teeth as shes lost weight, but shes done this before and managed quite well on most foods.
After 3 weeks, and thinking at Christmas this is it, she seemed to rally and started eating some porridge in the morning, a few spoonfuls of pureed food lunch & tea.
Then with drinks, they switched to a cup with a spout and handles and Mum started drinking small amounts on her own.
Then back to refusing food, only drinks & Fortasip.
Mum has been moved from Dementia Care to Hospital Care as she has lost all mobility.
Majority of the day sleeping or awake with eyes closed.
Nursing staff told me that when feeding her, and if she goes to wave your hand away, they hold her hand down and she will eat.
She still has a good swallow, she just takes more time to chew.
Im not sure of the holding her hand down :confused: so seeing Manager tomorrow.
Hi messaged you last week , mums exactly like your mum. Went to see her yesterday and was greeted by palliative care nurse to discuss next stage. She has a chest infection and is on antibiotics, I didn’t know this , the are deciding whether to admit to hospital and want to know my thoughts , mum does not want to go on I have said as little intervention as possible but pain relief yes . They’re now talking requiring nursing home after this . I feel the same as you have it’s very tough making these choices . Thinking of you and others who are at this stage of this disease .
 

Moose1966

Registered User
Feb 10, 2017
140
Staffordshire
I completely understand what you mean about eating. My mum would not eat for 3 or 4 days, and then eat breakfast lunch and dinner!!

It’s the same with drinking. Some days she will have over 100ml’s then only 200ml’s the following day! It’s so bizarre.
You must speak with her care team about them holding her hand down. I would think that’s forcing food.
I have had the same discussions with mums NH. I always have to lose my temper a bit before they listen to me.

Mum has now started coughing a bit when she drinks, and all her meds have been stopped, other then the syringe driver.

She’s asleep most of the time now and is anorexic looking. I’ve made it clear that I do not want her suffer, and I hope for her sake that this nightmare is over soon.

Good luck with your mum x
I’m reading your post and relate to it my mums so similar , it’s awful you brace yourself for the call and nothing next visit they’ve had porridge etc . This has to be the hardest stage so far .