Talking Point members share their advice for someone who is at the point of understanding and accepting that a relative or friend with dementia is at the end of life.
We asked members of Talking Point for their advice to a person facing the fact that someone is now at the end of their life.
Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.
Pork Pie lady says,
‘If they are able to understand and you can do it without causing upset, make sure you are clear on what they want – where do they want to die (if it is possible to give a choice), who they would want with them, what arrangements for the funeral.
‘Don’t try to be strong or stop the tears. Times of not coping, not being able to be strong for others and getting very upset are all part of the natural process of grief which starts at the point of knowing someone is dying not when they are gone.
‘Please be kind to yourself and make sure you make time and space to process all the negative things you are experiencing. It will be very painful but much better overall for your mental health.’
‘The unpredictable nature of the end of life is very hard to cope with. I think I did go a bit mad. It’s torture. It’s also very difficult to accept the end after a long illness.
‘Everything you’re feeling is normal.’
‘This waiting is unbelievably hard. When Mum was at this stage, I took her favourite childhood books (Alice in Wonderland and Winnie the Pooh) and also a book of poetry that I knew she liked and read to her. Sometimes she would join in a few words.
‘I would also take my knitting in with me and when she slept, play her favourite music while I knitted.’
‘I had dreaded such an experience, the thought of watching someone die frightened me but it was such a calm time, just us, carers quietly popping in to make sure we were OK.
‘They must have known it was going to be quick as they waited outside the room, so we were not alone but had privacy and their support.’
‘I have no real advice but offer my complete understanding of the strain this last stage causes – never quite knowing when the end will come. In our case, I was told my husband had two hours but it turned out to be five days.
‘It was important for me to be with him until the very end, but it was way too much strain for my daughter to cope with after she had said her initial goodbyes on day one. She stayed away but supported me and honoured her father in other ways.
‘There was absolutely nothing wrong in that – her dad wouldn't have wanted her sitting tense by his bedside day after day, agonising over when the end might come. A goodbye on day five from her would have been no more heartfelt than the goodbye she made on day one.’