End of life

Arl3n3 9 months ago

1 reply

My dad has dementia… I got a phone call saying he’s been in bed for a few days .. lying in a wet bed and he’s refusing to get out of bed to get a shower. He only gets one carer in the morning but I now think he’s on end of life: he hasn’t been eating right for a few weeks.. then suddenly on Monday hasn’t got out of bed sleeping most of the time and he sounds chesty and he is hallucinating. I don’t think the carers are realising there is a transition here of his health. What do I do?

David 9 months ago

Edited by David 9 months ago

Hi Arl3n3,

Welcome to the Marie Curie Online Community and we’re sorry to hear about your dad’s situation and how difficult things are for him. It’s understandable if you are also worried about him getting the care he needs or what you can do to help. If you are concerned then it’s okay to ask questions to healthcare professionals and enquire about extra support if needed.

You’ve noticed changes recently, including symptoms like hallucinating, sounding chesty and eating much less, and so it could be a good idea to reach out and speak with his GP. They can also give advice around palliative care and what is available to help your dad if he is approaching end of life as you suspect. If you have any concerns out of hours, there are services like NHS 111 available 24 hours a day.

You also mentioned that the carers don’t seem to have realised what’s changed recently and it’s also fine to contact your local adult social services and speak with your dad’s social worker, if he has one. They can assess his current day-to-day care needs and discuss further options for support that could be useful.

We have information on the Marie Curie website about caring for someone who is terminally ill: www.mariecurie.org.uk/help/support/being-there

Dementia UK also has information specifically about caring for someone who is end of life with dementia: www.dementiauk.org/information-and-support/looking-after-yourself-as-a-carer/end-of-life-care/

You’re welcome to share more here on the community and if you would find it helpful to talk with us, our Support Line team are here for information and emotional support on Freephone 0800 090 2309 or online through webchat at www.mariecurie.org.uk.

Take care,

David – Support Line Officer