the long wait for something

Jane3

Registered User
Aug 29, 2023
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that seems a very odd phrase for a hospital, it's wonderful that she recognising you. The move to the NH might help to stabilise her . Its good that she is pain free.
thoughts are with you
 

Jane3

Registered User
Aug 29, 2023
89
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Thank you, canary yes I am beginning to come to terms with the fact that this might be much longer than I thought and that no one really knows the time scale.
meanwhile yes I am burning myself I think that is because I cannot see a way of carrying on my normal life which is some distance away.
I would struggle being so far away and struggle to apply my self at work. I live on my own and fear I would spiral into depression if I went home now.
So I am lost
 

Saralara

Registered User
Mar 10, 2024
42
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Hi mum is chatting away when she is awake, eating tiny spoons of food fed to her by the staff and myself and taking tiny sips of liquid.
I have been in every day for the month that she has been there I massage her feet and head and brush her hair play music and talk to her I give her different things to hold. The staff just provide basic care
she cannot sit up unaided but is propped up by the bed and pillows.
She is sleeping at lot more now, but when she is awake she is constantly moving her duvet or reaching up and saying things about people past present and imaginary.
She will suddenly become worried and i constantly tell her everything is ok.
She has twinges of pain,.
Hi mum is chatting away when she is awake, eating tiny spoons of food fed to her by the staff and myself and taking tiny sips of liquid.
I have been in every day for the month that she has been there I massage her feet and head and brush her hair play music and talk to her I give her different things to hold. The staff just provide basic care
she cannot sit up unaided but is propped up by the bed and pillows.
She is sleeping at lot more now, but when she is awake she is constantly moving her duvet or reaching up and saying things about people past present and imaginary.
She will suddenly become worried and i constantly tell her everything is ok.
She has twinges of pain,.
She sounds so much like she's doing the things my mum did in the first home. She couldn't sit up initially either but got stronger. The staff didn't have the confidence to sit her in a chair. She also moved the duvet, reached out, worried about things spoke to people who weren't there. She had Delirium and that will continue to affect her cognitive ability..but the change and improvement for however long it lasts... was amazing.
 

Jane3

Registered User
Aug 29, 2023
89
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I hope it lasts for you both, I think that they decided i the hospital that the delirium was over, Its all a blurr but she went into hospital following a fall, she had no injuries fall and three separate docs said she was medically fir and just needed to get back on her feet, after they cured th infection that made her fall.
Then the ward was shut with COVTD which she tested positive for and then she was discharged on EOL..
such a shock
 

Saralara

Registered User
Mar 10, 2024
42
0
I hope it lasts for you both, I think that they decided i the hospital that the delirium was over, Its all a blurr but she went into hospital following a fall, she had no injuries fall and three separate docs said she was medically fir and just needed to get back on her feet, after they cured th infection that made her fall.
Then the ward was shut with COVTD which she tested positive for and then she was discharged on EOL..
such a shock
I'm no expert but have read up on Delirium spoken to a few medics. It can go maybe but also become chronic when it kind of comes and goes. My mum's hospital stay was awful and they seemed to have no idea how to care for her. Medication, pain, strange surroundings etc just add to the confusion and I'm sure she felt she was going mad.
The first home also had no idea, treated her like she knew nothing and the sedation just stopped her being able to function.
She walked in to hospital, having been independent, fully continent and able to talk. She came out being able to do none of those things.
I would say keep visiting, reassuring, if you are happy with the NH then she will slowly get used to seeing the staff. Ask about some physio or an assessment to see if she can sit in a wheelchair. At least she won't be stuck in a room.
It's not easy but like you and many others I have had sleepless nights , racked with worry.
I just read , questioned and kept on doing what felt right for her.
 

Jane3

Registered User
Aug 29, 2023
89
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mum has now started with a cough, I asked the doc to check on Friday and she said there was no sign of aspiration and all residents and most of the staff have had a cough over the past two weeks.
I am not sure she will cope with a bad cough, but also am terrified of her suffering with aspiration pneumonia, as I don't want her to be in such pain and panic.
Does anyone know what steps would be taken if that were to happen? would they treat would they take her into hospital?
Hopefully I can ask her GP tomorrow as future treatment has not been mentioned. The doc did say that she would leave her on thin liquids to keep her drinking even though there was a risk of aspiration, then she prescribed a thickener after her Friday visit. ?
Doc not considering any more pain meds atm , she said upping the patch would make her sleep more, therefore she would not be eating or drinking at all, so they are putting a pain gel on he neck.
 

Sterlingtimes

Registered User
Aug 5, 2022
135
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Does anyone know what steps would be taken if that were to happen? would they treat would they take her into hospital?

Sadly, your mother has found herself in an environment where infection prevails. I am sorry that this adds further to your present challenges.

I presume that they would treat and take her to the hospital if required. I understood from my mother's consultant that they follow the patient's or attorney's wishes.

In my mother's case, she indicated a low level of intervention on her Respect Form and signed an Advance Directive. I also indicated my agreement that her wishes must be followed.
 

Jane3

Registered User
Aug 29, 2023
89
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thank you I will have to talk to GP tomorrow....this nightmare continues , wishing all all that are going through it strength and love. i for one am not doing very well .
 

Saralara

Registered User
Mar 10, 2024
42
0
thank you I will have to talk to GP tomorrow....this nightmare continues , wishing all all that are going through it strength and love. i for one am not doing very well .
Jane 3. You need to take a deep breath.!
You are doing as much as you can for your mum. I completely understand the overwhelming anxiety you have about the situation but you must also look after yourself, or you will just burn out.
Talk to your GP. If you trust the home carers, talk to them. My mum's current nursing home has the most human and genuinely caring staff and I'm so very grateful that I can start to get a bit of normal life back. I have days off visiting now but prior to the move (to current NH), I visited daily for 8 months. That was hell.
I have seen her diagnosed as only having days to live and it was shocking, not eating and mourned the loss.
Now I visit, take snacks and put on her make up, do her hair which amuses her and makes me feel better.
She isn't the same as she was 10 months ago but she knows me, able to converse with the staff and gets out of her room daily if she's not having a full on sleep day. She does now have some quality of life albeit a very different one. I absolutely wish you the courage to continue this rocky journey and to develop a thick skin to keep asking questions about her care.
 

Muggers

Registered User
Mar 18, 2024
62
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thank you I will have to talk to GP tomorrow....this nightmare continues , wishing all all that are going through it strength and love. i for one am not doing very well .
Hiya, do you have power of attorney over your mum, if you do and you don’t want her to go to hospital then they would need to abide by your wishes along with her being treated with meds or not.
 

Jane3

Registered User
Aug 29, 2023
89
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Hi I have spoken to the GP and intervention will be minimal she would not be taken to hospital, just made comfortable. I cant bear thinking she might suffer any more.
still we wait so much more sleep now and little response to anything. but the tiny heart keeps on beating.
thoughts to you all in the same position and thank you for the contact
 

MowgliGirl02

Registered User
Feb 20, 2022
48
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hey @Jane3 I lost my mother on Mother’s Day (here in the uk) 10th March. Three month’s before she died she stopped eating. Three weeks before she died she stopped drinking and had to be given IV fluids before we all came to the same conclusion that mum was entering the actively dying phase.
The doctors told my father and I that they were only going to make her comfortable on the Monday, the following Sunday she passed peacefully away.
The last week of her life was spent mostly unconscious, and all the changes like Canary said happened, although she didn’t rally, she didn’t wake up.
The team where she is will know everything, and they will also inform you when they believe she is actively dying. I don’t believe taking her into hospital will help her, it might do more harm than good.
Jane you have to look after yourself too. What happens next you just can’t control. But you can control yourself and keeping yourself well.
Your mum wouldn’t want you to fall ill.
Remember you are not alone. ❤️
 

Jane3

Registered User
Aug 29, 2023
89
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I checked that all was in place with her GP so that she would not be taken and all was already here to make her comfortable. that's what i meant .
the NH staff are ok but they have not gone through what will happen or kept me informed in fact I have had to do all the asking and chasing up.
thank you
 

MowgliGirl02

Registered User
Feb 20, 2022
48
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That’s a failure on their part (the NH), and I’m sorry that they aren’t being as open and forthright as they should be. I was like you and kept badgering the nurses for info, or just to check she was comfortable.
My mother was in a hospital when she died. It’s a shame that they all just can’t work together.
being on this forum is a great source of info, help, advice, or just a place to vent too.
I don’t think I would have coped as well as I did in the lead up to mum’s death without being on here.
It truly is an awful time, Limbo is the appropriate word. I’m sorry you are going through this. ❤️
 

MowgliGirl02

Registered User
Feb 20, 2022
48
0
I don’t know the ins and outs of what’s happened with your mum before now, but I know that I keep thinking I could have done more, said more, changed things, done things, and in truth, yes maybe there were some issues which could have been dealt with sooner. Or maybe I could have done more? (Although people have told me I did everything I could have done.)
However a PWD diagnosis will unfortunately always lead to the same outcome.
You need to try and be kinder to yourself. Because in order for you to deal with what’s coming, you need to be as strong as you can be. I understand that however it is easier said than done.
I wish people would understand that dementia is so much more than just an old people’s disease, or just someone forgetting something or someone.
Dementia is cruel to the person with it, and to the people they loved and left behind. ❤️
 

Muggers

Registered User
Mar 18, 2024
62
0
Hi I have spoken to the GP and intervention will be minimal she would not be taken to hospital, just made comfortable. I cant bear thinking she might suffer any more.
still we wait so much more sleep now and little response to anything. but the tiny heart keeps on beating.
thoughts to you all in the same position and thank you for the contact
I’m in exactly the same position as you, my mum opened her eyes today and said ‘Thank you’, she hadn’t spoken for two days, then as I was leaving the room I said ‘Be back in a minute for a hug, just you and me’, she then whispered ‘Against the world’, it broke me , I’m still a mess now, I wonder if this is yet another sign that the end is getting closer, these moments we have left with our loved ones are now priceless, hold them close and if you can just be there for them. Xx Another sleepless night for me. X
 

GlennBurch

Registered User
Apr 10, 2024
22
0
Much depends on the specific circumstances and condition of your mother. Sleep can be a reaction to stress and emotional exhaustion, which is quite natural in such a situation. It is important to take care of yourself to maintain your strength and emotional well-being during this difficult time.
 

Jane3

Registered User
Aug 29, 2023
89
0
mum is completely unresponsive mouth open and breathing fluctuating as if snoring. as of yesterday afternoon, she is very warm
i have just been back for three hour sleep