End of life care doesn’t occur in the months/weeks/days leading to someone’s death, it is a process that starts when someone’s illness shows no signs of improvement. Dementia care is effectively end of life care because they will not get better. Their illness will only get progressively worse until they die.
Currently we have a lady who doesn’t have very long left. She is on end of life care, the doctors say she isn’t getting any better and the only thing we can do is make her as comfortable as possible and allow nature to take its course. The worse thing is that by making her comfortable we actually cause her pain because she finds it painful to be moved.
It definitely puts things in perspective looking after someone on end of life. It has definitely made me wonder in terms of treatment what I would like for myself if I was to ever get ill and be unable to express my wants/needs. I don’t actually think any of us actually know do we? We just kind of hope we never have to be in a situation to find out.
I am a big believer in doing advance directives, wills, signing DNACPR forms if you do not wish to be resuscitated. We must be prepared for those times where we could get seriously ill and lose our capacity to make our own choices.
Let your family know what you want.
Do you want to be resuscitated? Do you want a PEG if you needed too? Do you want to be treated in hospital? Do you want to go into a care home? Do you want treatment?
Its important to let your family know now before any family member is left with the impossible question of “is this what my family member would’ve wanted?”
Whilst it may seem morbid and depressing, its important to discuss what will happen when you get ill/pass away. Nobody wants to think their mum/dad/partner is going to die any time soon but the reality is people die every day. And maybe knowing what they want might be the difference between grieving fully or answering an impossible question that you’ll never receive the answer too and thus, beating yourself up in the process.