Things will change
As you care for your loved one they will change in various ways.
- They will stop eating and drinking
- They won’t wee or poo
- They will speak less and become more and more withdrawn, sleeping most of the time and slipping in and out of consciousness
- Their skin will look different and their hands and feet become colder
These are all indications that they are nearing death and their body is shutting down; this means their blood flow is dropping. This changes the colour of their skin and their body temperature. They may well feel cold and clammy, in which case put on a blanket or turn up the heating to keep them warm.
Your loved one may also become bloated and swollen because they are not getting rid of the liquid in their body by normal processes of pooing, weeing or sweating
Their saliva may pool in their throat, changing their breathing and making it sound noisy, because it is harder for them to swallow or cough it away. Their breath will change between fast and shallow, and slow and deep. The noise this makes can feel distressing for you as the family caregiver but it isn’t distressing to your loved one because they are not struggling to clear their throat and won’t be aware of it.
Will there be further changes?
Some act in ways that are out of character, and appear agitated or restless. They may need some medication to help settle this symptom down, although their behaviour may not be a true reflection of how they feel. If their liver is failing, the skin will become yellow with jaundice.
So yes, your loved one may continue to change and, towards the very end, their breathing may stop for a while, start again, and then, very gently, slow down and stop.
Is there more I can be doing to care for them?
At Cottage Hospice, your loved one may receive pain-managing drugs by drip; or by other means including skin patches. You can check that the drip’s in place and the syringe drivers are still working – the volunteers at Cottage Hospice will be able to show you how to do this. The aim is to provide comfort during this closing down process, and to make your loved one’s death as good as it can be, for them and for all of you.
The key message is, ‘Your way’. You know what was normal in their home – quiet or noisy – so carry on as you would if you were caring for them at home.
Hearing is one of the last senses to go; even though your loved one may be unconscious and appear to be in deep sleep, it is likely that they will be able to hear, so, if it eases you and them, you can talk about anything; about memories; how much they mean to you; how much you love them … or anything that feels right to you and may bring them comfort.
You are best placed to know the kind of things that bring your loved one comfort – playing music, being sung to, sharing poetry, holding hands or spiritual matters. It boils down to doing and saying whatever, looking back after their death, you’ll be pleased that you did and said.
“I want to be there when they die”
That is completely understandable and is a key part of the way many of us look at end of life care – that when someone is dying of a terminal disease, they have the company and care of family and friends. But it happens that sometimes the loved one will die when everyone is out of the room. In that situation, family caregivers can feel hurt or that, by missing the moment, feel they have let their loved one down
It’s impossible to know why people die at the precise moment they do and it is likely that they have little control over those final moments. Sometimes, it may seem as though, somehow your loved one chooses a special anniversary or hangs on until a relative arrives at the bedside. We don’t know how this works – perhaps it is a case of ‘mind over matter’.
There’s no need to feel guilty if you miss your loved one’s death. You can leave the room to give your loved one space and yourself a break. It may bring you comfort to say goodbye each time you leave the room, but this like many other aspects; is a matter of personal preference.
And if they die while I’m with them…I don’t know what I’ll do
It’s very personal and our advice is to do what feels right for you. That might mean giving your loved one a hug, holding their hand, speaking to them, or saying a prayer. Formalities can come later and we don’t think it’s necessary to rush. Many family caregivers choose to be alone and still with each other and their loved one during this very precious time
You may prefer to go outside or to another room – to occupy your own space for a while. The choices you make should be about what feels right to you in the moment.