Hello, I'm new here..my mum is in a care home. She has late stage alzheimers and vascular. She is on end of life care but no one has really explained what that means. She is bed ridden. Sleeps most of the time and speech has pretty much gone. She can still swallow. I feel I need to have an end of life nurse/specialist to assess her and try to give us some indication of what to expect. I've asked GP to do a referral to our local.hospice but to be honest GP didn't really seem to understand what I was asking for and wasn't hugely helpful.
End of life ??
- Thread starter jzbross
- Start date
Hello @jzbross and welcome to Dementia Support Forum. There is a wealth of shared experience of dementia to be found here so I am glad you have found us.
I am sorry to read of your Mum's situation. and that she is now on end of life care. That normally means that she will be, as far as possible, be kept comfortable and pain free. It is likely that the GP will have prescribed anticipatory end of life medication, in the event that your Mum gets distressed with pain or the like. These meds would only be given by a trained medical person/community nurse or similar.
As far as food and drink goes, your Mum would be offered both, but if refused, that would be accepted.
My Mum had the same experience, and the care home were just great at the time. As for how long, that can vary hugely from person to person. there is no saying how long end of life care can be.
I am so sorry that you are having to go through this with your Mum. All I would say is spend as much time with your Mum as you want to, hold her hand, and tell her you love her (they say hearing is one of the last faculties to go). This is what I did with my Mum. Hope this helps and wishing you strength to get through this horrible time.
The following link may help too.
www.nhs.uk
I am sorry to read of your Mum's situation. and that she is now on end of life care. That normally means that she will be, as far as possible, be kept comfortable and pain free. It is likely that the GP will have prescribed anticipatory end of life medication, in the event that your Mum gets distressed with pain or the like. These meds would only be given by a trained medical person/community nurse or similar.
As far as food and drink goes, your Mum would be offered both, but if refused, that would be accepted.
My Mum had the same experience, and the care home were just great at the time. As for how long, that can vary hugely from person to person. there is no saying how long end of life care can be.
I am so sorry that you are having to go through this with your Mum. All I would say is spend as much time with your Mum as you want to, hold her hand, and tell her you love her (they say hearing is one of the last faculties to go). This is what I did with my Mum. Hope this helps and wishing you strength to get through this horrible time.
The following link may help too.
What end of life care involves
End of life care should help you to live as well as possible until you die, and to die with dignity. The people providing your care should ask you about your wishes and preferences and work with you to plan your care.
www.nhs.uk
Hello @jzbross and welcome to the forum
When someone is put on end of life care is sounds like they are about to die, but actually it just means that they are in the final stage of dementia and not necessarily actively dying. Im afraid that there is no knowing how long this stage will last - it may just be a couple of weeks, or it may be several months.
In UK, hospices are not geared up for people with dementia and are not normally used when they reach end of life. The care home should be well practised in end of life care, should recognise and know how to deal with the actively dying stage. My mum and my MIL both passed away in their care home and the staff were wonderful. The main thing during this stage is to keep them pain free and comfortable. This can be done in several ways - a patch containing slow release painkillers, injections, or a syringe driver. When my MIL died a patch was used and for mum they started with injections, but went on to use a syringe driver. In both cases their passing was painfree and peaceful.
Why not talk to the care home manager about your concerns and ask them how they deal with it?
When someone is put on end of life care is sounds like they are about to die, but actually it just means that they are in the final stage of dementia and not necessarily actively dying. Im afraid that there is no knowing how long this stage will last - it may just be a couple of weeks, or it may be several months.
In UK, hospices are not geared up for people with dementia and are not normally used when they reach end of life. The care home should be well practised in end of life care, should recognise and know how to deal with the actively dying stage. My mum and my MIL both passed away in their care home and the staff were wonderful. The main thing during this stage is to keep them pain free and comfortable. This can be done in several ways - a patch containing slow release painkillers, injections, or a syringe driver. When my MIL died a patch was used and for mum they started with injections, but went on to use a syringe driver. In both cases their passing was painfree and peaceful.
Why not talk to the care home manager about your concerns and ask them how they deal with it?
