The end is near ...how much longer

[winchywendy]

We are now on day 15 of mum going on end of life, I have barely seen her the past year. I finally saw her 2 weeks ago as we are able to visit the care home as end of life is soon, the deterioration is astonishing she has lost a significant amount of weight . We decided not for her to go into hospital after the experience last year, so her end will be in the care home'
She has not eaten for many weeks i am told, she is having small amounts of liquid. Mum has been bed ridden for a year, she is hallucinating, seeing relatives that have past, reaching out in a very agitated way, doubly incontinent and her breathing is awful its like she is struggling to breath but then her breathing seems to stop for 15/20 seconds and starts again. Her arms feel so cold and her skin is just flaking.
I have no idea if she is in pain but this whole situation is emotionally draining, i am now on sick from work as now i can spend as much time with mum as i want, and considering since April 5th last year i have hardly seen her due to lockdowns etc.
How long could this torture for my dear mum go on for it is just heartbreaking to see this, you just wouldnt put an animal through this !

 

[margherita]

It is so unpredictable @winchywendy , and heartbreaking.
I am so sorry for you.

 

[canary]

Hello @winchywendy
Im so sorry to hear about your mum. When someone with dementia dies from Alzheimers their body shuts down slowly and it can be traumatic to watch.
I made the same decision about my mum, saying I didnt want her to go to hospital and she passed away in her care home, in surroundings she knew and tended by people who knew her and cared for her.

The physical changes can be shocking. My mum went with no food or fluid for 17 days and by the end I really didnt know how she was still alive. The things you describe - huge weight loss, cold limbs, dry skin and changes in breathing (Cheyne Stokes breathing) are all changes that happen at the end. She will not be in pain as pain relief is standard at this stage. She will be given injections, patches or a syringe driver for the pain. If she seems agitated then go and find someone as she might need more.

I do not think that it will be very long now before the end. I think you are looking at mere hours - a couple of days max, I would say. Mum was like that for 3 days, but I gather that the staff did not expect her to last that long. In the meantime, remember that although she may not respond, she will still be able to hear, so talk to her, read to her and play her favourite music


(((((((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))

 

[annielou]

It might be worth checking if CH are giving your mum anything for the agitation. When my mum was end of life the nurse told me they could give her pain relief and also something else to help if she was agitated and unsettled or distressed. When mum started getting really agitated I asked the nurse if mum had had anything to help settle her agitation which she hadnt so they started her on that as well as the pain relief she was already on and it really helped my mum to settle more. I was there a lot so I used to ask what mum had when I arrived and when staff came in every so often to check on mum I would say if looked like it was wearing off and if time mum could have more I’d ask them if mum could have next dose as mum couldn’t tell them snd I didn’t want mum in pain or distressed and agitated if it could be helped at all.
When mum was reaching out and flapping about scratching herself and banging side of bed I would try take her hands, tell her to squeeze them if she was hurting, tell her i was there and i loved her and not to be scared, which sometimes seemed to help and I’d stroke her hair a lot and sit holding her hand or just resting my hand on her if she’d been turned and was facing other way. Feeling my hand on her even if she couldn’t see me seemed to help a little at times if she was agitated. I don’t know if that would/or does help your mum at all .
Sending you love and hugs at what I know is a difficult emotionally exhausting and heartbreaking time. ??

 

[winchywendy]

Hello @winchywendy
Im so sorry to hear about your mum. When someone with dementia dies from Alzheimers their body shuts down slowly and it can be traumatic to watch.
I made the same decision about my mum, saying I didnt want her to go to hospital and she passed away in her care home, in surroundings she knew and tended by people who knew her and cared for her.

The physical changes can be shocking. My mum went with no food or fluid for 17 days and by the end I really didnt know how she was still alive. The things you describe - huge weight loss, cold limbs, dry skin and changes in breathing (Cheyne Stokes breathing) are all changes that happen at the end. She will not be in pain as pain relief is standard at this stage. She will be given injections, patches or a syringe driver for the pain. If she seems agitated then go and find someone as she might need more.

I do not think that it will be very long now before the end. I think you are looking at mere hours - a couple of days max, I would say. Mum was like that for 3 days, but I gather that the staff did not expect her to last that long. In the meantime, remember that although she may not respond, she will still be able to hear, so talk to her, read to her and play her favourite music


(((((((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))