I wonder if anyone can help. My mum is in the advanced stages of Alzheimer's. She is still at home, has CHC and I help look after her with my dad. Every few months she has really bad jerking and she goes very weak; this happened last week and she collapsed yesterday morning when dad and my brother lifted her off the comode. Dad rang an ambulance and they admitted her thinking she'd had a stroke. The scan did not show a bleed but they made the decision not to do any bloods or other invasive treatment and we supported this. Mum had what they referred to as a hypo delirium where she was snoring loudly but awake although unresponsive; it was very distressing as she has sleep apnea. They placed her on an end of life ward and have administered morphine and a tranquiliser type drug to settle her which it has. They are not feeding her or rehydrating her and I believe this is the pathway to end of life. The hard thing is dad and I have been given permission to stay but we cannot leave the room at all. We slept on camp beds last night next to mum. In one sense I feel extremely grateful for this but it is also making the situation very intense and emotionally and mentally very tough. Today mum is comfortable and breathing better but this is where I need advice: do we continue on this path in this room. How bad is this going to get? Has anyone been through something similar? Or do we ask the consultant to take her off the meds and rehydrate her to see if she comes round. I feel so confused. One part of me feels like I'm killing my mum and the other part is telling me to be brave and continue with this pathway as mum wouldn't want to live the way she is. My dad is exhausted and just wants mum to die peacefully. This is so so hard. If we rehydrate her are we just prolonging her death? Any support would be welcome as if feels very lonely in thus room.
Advice please
- Thread starter Summers
- Start date
This is a very difficult time @Summers .
I think the best plan is to arrange a time to talk to the consultant and be very open and honest.
It can take a long time for someone with dementia to pass away when they reach this stage as their bodies are slowly shutting down. My mum went 17 days with no food or fluid, although it is not usually that long. It was a terrible twilight time and yes, I too just wanted mum to pass away and end it all.
Having said that, sometimes the person with dementia rallies. In mums final months I was told 3 times that mum had reached end of life, only for her to start eating and drinking again. My MIL was placed on this pathway, but after four days it became obvious that she had rallied and she was taken off the pathway as she was eating and drinking again. She passed away about 3 months later.
This is the reason why it is important for you to talk to the consultant. Rehydrating someone with IV fluid is not a good idea because, as you say, it just prolongs their death, but if she would accept food and fluid by mouth then that is a different matter.
I think the best plan is to arrange a time to talk to the consultant and be very open and honest.
It can take a long time for someone with dementia to pass away when they reach this stage as their bodies are slowly shutting down. My mum went 17 days with no food or fluid, although it is not usually that long. It was a terrible twilight time and yes, I too just wanted mum to pass away and end it all.
Having said that, sometimes the person with dementia rallies. In mums final months I was told 3 times that mum had reached end of life, only for her to start eating and drinking again. My MIL was placed on this pathway, but after four days it became obvious that she had rallied and she was taken off the pathway as she was eating and drinking again. She passed away about 3 months later.
This is the reason why it is important for you to talk to the consultant. Rehydrating someone with IV fluid is not a good idea because, as you say, it just prolongs their death, but if she would accept food and fluid by mouth then that is a different matter.
Thanks so much for this. We have spoken to the consultant and I feel a little better but they aren't feeding her. They are keeping her sedated and letting her body shut down but she's comfortable and the jerking has subsided. I think we are both more at peace with the fact she's dying but it's very hard. What is good is that they are going to allow me to leave and come back if I self isolate at home. I think that this will make it much easier for us both. It's so hard. Mum has had this for over 10 years.
It is indeed very hard and can go on for a while.
If you would like, you can continue posting throughout this period and we can hold your virtual hand.
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If you would like, you can continue posting throughout this period and we can hold your virtual hand.
((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))
Just wanted to say am thinking of you and sending hugs ? We went through very similar with my nan and she was on the pathway for 13 days , it was a very emotional time . Please take care of yourself too.
They changed her pad this afternoon and when we came back in the room mum was awake for the first time. She recognised dad immediately and smiled at him. Dad was overjoyed. The nurses were clearly surprised as she was wide awake but she's still snoring (which is very odd) and she has a large swelling under her chin now. The nurses came in and we tried to get the consultant back but he's been called to A &E. They've put her on a drip via her leg and she's still getting the tranquiliser but she's awake and understands what's going on. They want to reassess her tomorrow and get the speech and swallow team up to have a look at her. I feel better but I'm worried all the time about the decisions we're making as it's so hard. The consultant told us that she wouldn't come round and I was at peace with that eventually but this has changed it all again. Gosh it's so hard.
Today she is not good and I'm not really sure what's happening. I don't even know the right questions to ask. She is asleep with her eyes half shut and she's snoring heavily. They haven't replaced the sodium chloride hydration bag and I think they have given her more sedative. Her tongue is rolled back but the speech and swallow team haven't been up to see her. They seem to have returned us to the original pathway. Last night they said they didn't want to give her a drink because it would go straight onto her lungs. Today she sounds terrible and is grimacing so I've asked for some help as she keeps coughing. They've given her some morphine and more medazipan(??) This is awful; she was so good yesterday afternoon but the nurses have said this often happens before it gets worse.
It’s very cruel , they seem to go up and then go down again , the medical team will have seen it so many times , that’s why they like a bit of time to assess , maybe why the SALT team aren’t coming just yet to see how things go . I’m so sorry for you both , it’s torture having hope then it’s dashed then hope again , all I can do is to say I am thinking of you and sending massive hugs and support . ? It sounds as if they are keeping mum peaceful and pain free and letting nature take its course .There probably isn’t much they can say , they will be observing I guess. Take care , remember to eat and drink yourself . X
They're moving her to another hospital which specialises in end of life care. They've explained that with the influx of stroke victims last night they don't have the resources to look after mum. They clearly need the bed too. The problem is that both of us cannot be in the room with mum so we have to take turns which will be hard as dad is very deaf and needs my support. He is allowed to sleep there but I'm worried that we won't see mum pass together.
I’m glad you have been updated and know what’s happening now . All I could suggest is you let the new hospital know of dad’s hearing issues. Wishing you strength and peace . X
The End of Life Stage can be a roller coaster, with rallies and setbacks and many people do go through a brief period of lucidity before returning to continued decline. Sometimes it can be difficult to know whether its just a brief period, or an actual rally.
It can be quite harrowing
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It can be quite harrowing
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Thanks so much for your kind words. This is harrowing. She's breathing horribly and fluid is collecting at the back of her throat and rattling which then makes her choke. It's terrible to watch her decline like this. Her hands and feet are changing colour and her skin is starting to alter. My dad is suffering too watching her slip away.
The things you have noticed are changes that happen as the body shuts down. There is medication (injections) that can be given to dry up the secretions. You will find that her limbs will go cold too and eventually her breathing will change so that there are gaps between breaths. All this is normal. Please dont be frightened by it.
xxx
xxx
