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End of life care - Carers UK Forum

End of life care

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My Nan is on palative care. Iv always been close to her. The nurses came out 7 days ago and fitted a syringe driver, and the GP came 3 days ago and said she will have a few more days, maby a week
We have stayed with nan 24/7, and never left her alone. She isn’t drinking, however is slurping drinks from a tooth brush as ‘mouthcare’, nan is also eating the odd yogurt and ice cream once or twice a day.
She is talking when awake, however making little sense, she is distressed at times ‘wants to go home’ - my nan is at home.
Nan is still passing urine in her catheter - which is crazy as she’s passing 500/600ml a day, and only input is little bits from the brush. I’m getting so many mixed messages from others and from nan, I am trying so hard to understand end of life, because if k can understand the ‘Process’ - I can accept it. Is she really dying? Should we no be pushing fluids? How can you no a time frame? What should I be looking out for? ** SO CONFUSED! :S *** the Health proffessionals have been amazing; but it’s so hard as they don’t realise how little I understand what’s happening to nan and her body, and for my own sanity, I need to understand
Hi Sweetie,

I am so sorry you are having such a hard time.

It does sound as if your nan is at the end of her life.

I had this with my Mum 15 years ago.

My only advice is to sit with her and talk to her, even if she seems to be sleeping. Say all the things you want to say, how much you love her and so on. Hearing is the last sense to go so she will hear you.

I whispered to my Mum that Dad and I would be fine and she shouldn't worry if she needed to leave us. She had died within 30 minutes.

Be strong xxxxx
Hi Samantha,
I've lost both parents and parents in law. It was only when my mum, the last parent was dying, that I found out what I had needed long before. I know it's difficult, but Google "Signs of Dying". There are so very good explanations of how the body gradually shuts down, and why you shouldn't force food or drink on the patient.

Now the even more difficult stuff. Will you be in charge of funeral arrangements. Has someone sorted out which Funeral Director to use? Is anyone going to be around to help with this at all? If not, feel free to ask us anything you'd like to know. Lots of us here have been through it.

Finally, and most importantly of all, your Nan is very, very lucky to have such a kind and loving grad daughter. Feel proud of what you are doing.
I am glad she is on a syringe driver - I expect whatever else she may be on (eg, painkiller?), she is on something like medazalam, which is a relaxant and 'tranquilliser' (for want of a better word) that will help ease her passing when the time comes.

Precisely when that will be is hard to say - the doctors can prognose, but not always accurately, as each person's strength is different. Some 'fight' it, some go far more willingly - I suspect from what your nan is saying that she 'wants to go home' that she will be the former. 'Home' is perhaps the peace beyond the turmoil of this life, and at some level of her consciousness she knows that.....

She may well, now, at this very ending of her long life, be remembering the beginning of it - to her, now, 'home' may be her childhood home, her parents waiting to take her back to them....it would be good to think so, wouldn't it? Wouldn't that be something we would all like to feel and yearn for, when our time comes to leave this life? That we are 'going home' to the parents who are there before us?

In practical terms, it's good she is still able to eat even if only a little. I would not urge her to eat more than she seems to want to do now. Do remember something I have learnt on this forum, and it is wise and true - it is this: 'They are not dying because they are not eating. They are not eating because they are dying'.....their bodies no longer need 'fuel'......

At some point, maybe around 24 hours or so before death, we lose our swallowing reflex. It's a natural part of the journey, and when it happens, we can no longer swallow, and from that point onwards we must not eat or drink anything, as there is a real risk of choking - without our swallowing reflex (an automatic response we cannot control by will) food or liquid can go down into the lungs, not the stomach, and so choking would occur. So the medics say at that point it must be 'nil by mouth'.

That said, as you are currently doing, ie, wetting the inside of her mouth, can continue, to make her comfortable. The nurses may give you 'soft tabs' to dunk in water and sweep around her mouth and lips, but not enough to create 'drops' that need to be swallowed (and therefore the risk of choking).

Please do not think that your nan is thirsty - she won't be thirsty any more than she is hungry, as her body is now 'closing down'. Also, what very little water she needs will be supplied by the liquid content of the syringe driver, which is going straight into her body, and so there is no risk of choking. In addition, respiration that takes place in the cells itself, using the oxygen breathed in through the lungs, is a chemical process, again entirely natural, that produces water as a byproduct of breaking down the sugars in her blood. This 'water of respiration' will be sufficient for her needs now.

As others are saying, it's wonderful that she can be at home, with her family, to end her long life, with all who love her around her. Yes, do keep talking to her, hold her hand, tell her your thoughts and how much you love her. It is said that hearing is the last of our senses to fade, so even if she appears unresponsive to you, it could well be that she is still hearing you, even if she gives no sign.

This is a very special time, and one you will remember all your own life. I hope her passing is as peaceful as it promises to be, and leaves you with precious memories for the future.

With kindest thoughts to you at such a time - Jenny