My Dad has Dementia and is nearing the end of his life. He finds difficulty swallowing and is prone to choking on his food. One time this happened the nursing home told me he started to go blue but then recovered. He has puréed food now following assessment with a SALT. After this occasion the GP put him on antibiotics in case he had some food in his lungs which would cause a chest infection. When I last talked to the nurse I suggested he is not given antibiotics again as his quality of life is so poor now it will only prolong the inevitable. There’s a reason why they call pneumonia the Old Man’s Friend. The nurses have been trained to use an aspirator when people are choking but I feel that is invasive so I said I did not want this to be used.
I know Dad is dying and, like most people I suppose, I want him to go peacefully in his sleep. My question is this, is it possible for people with advanced Dementia to die in their sleep or do they normally choke or die of starvation? What is the kindest thing to do? Should I allow them to use an aspirator, which seems similar to doing CPR, something we have agreed they will not do? Should I allow them to give him antibiotics? At the moment he can still take them if they are given as thickened liquids. I know that no-one can tell me how my Dad will die but I would like to know what the possibilities are so I can be prepared. Dementia is the cruellest illness. I have to add that, unlike some of the people who have written on these forums when their relative has cancer, I can say, thankfully, that Dad is not in pain. He does not moan and groan and complain of anything. I suspect that I am the one who is suffering the most.
My father had Alzheimers, and he gave up eating and drinking, and he died in his sleep.
My mother had mild dementia and cancer of the oesophagus. She didn’t die in her sleep and I wasn’t with her so I don’t know exactly how she died.
My mother in law had dementia, and was deaf and blind, died in her sleep.
The only person I was with at the point of death was my wife. She had a brain tumour and many of the symptoms were similar in her final weeks to someone with dementia. She had major problems with eating, and had two separate Salt assessments. She had to avoid many foods which led to choking risk. She also pouched her food. She would get part way through eating and then not know what to do. That was a problem in hospital as she often fell asleep with food in her mouth.
Eventually she came home and I could care for her. It’s very frustrating trying to get someone to swallow food or spit it out when they don’t understand and it could take up to an hour sometimes. It’s absolutely crucial that the problem is resolved.
Hi I’m sorry to hear about your dad. I lost my mum to this cruel disease in Jan 2017 . My mum’s decline in health was quite rapid, but I understand this can vary from person to person, depending on the type of dementia. My mum’s was vascular. With my mum she lost her mobility initially, her swallowing and loss of appetite followed quickly - thankfully we didn’t have too many issues with choking until mum was admitted into hospital. I have to add that our experience with the hospital was not a good one - however, they didn’t really seem concerned with her swallowing initially, it was myself and other family members that pushed concerns about it, then we had the SALT assessments etc. The last 5 weeks of my mum’s life she could not swallow either food/ liquids, so was on IV on and off - however she would repeatedly pull these out. About a fortnight before mum passed the hospital decided it was best to just keep mum as comfortable as possible and withdraw other evasive treatment, this was difficult to accept. However, I remember reading online that everytime a Dimentia sufferer gets an infection it progresses the Dimentia three fold. Sadly, whilst in hospital my mum had infection after infection, so this disease creates a viscous circle. Unlike your dad, my mum did appear to be in pain/ uncomfortable towards the end, she used to writhe and fidget quite a bit, up until the last 72 hours, where she was incoherent. I and other family members were present at her passing and sadly, she just slipped away, difficult to say whether she was asleep or for want of putting it a nicer way - just out of it. Take care x
Thank you for your reply to my post and I am sorry to hear you have had such losses. I always feel when I am visiting Dad that it is much harder for spouses than sons or daughters to watch their partner dying in this way. You were blessed to be able to have your wife at home with you and I am sure that must have made her end a lot more peaceful. It is good to know that people can go peacefully at the end, but hard to know what the kindest thing is for them.
Thank you for your reply to my post. I am sorry that your Mum had to suffer in hospital. I have asked that Dad is allowed to stay in the nursing home and not be hospitalised. There are qualified nurses there and they are very good. Four years ago when Dad was in hospital there was a man on his ward who was being tube fed and he got infections as well. I don’t know how such decisions are made, but it could have been that his wife insisted on him being tube fed whereas I have said no to invasive procedures. You said it was hard for you to accept that the hospital decided to withdraw invasive procedures but I suppose everyone has a different view on this and you hope that they will be given good advice by the medical experts. Sadly, sometimes, it seems to be down to chance who you speak to.
It is good that you are able to contribute to this forum to help those of us who are at an earlier stage of this Dementia journey. Thank you.