Is this EoL

[Soupey]

Hi everyone,

Mum has had dementia for over ten years now, the last six in full time care. A few months ago she had a problem with excessive secretions and choking and her blood sats fell. She then recovered but a few weeks later it happened again and is getting more frequent. Last week the doctor prescribed Hyoscine(?) to try and help. Now last night she vomited and it had coffee grounds blood in it. The rest of the time she is unresponsive other than to swallow fluids and esure, doubly incontinent, can’t speak but cries out in pain sometimes, rarely opens her eyes. The home won’t give any opinion as to how she is doing. Is this likely to be that she is approaching EoL. Her advance care plan calls for her to be kept out of hospital if at all possible as I don’t think that would be in her best interests. Many Thanks.

 

[Grannie G]

Your mum does sound poorly @Soupey but the doctors may not want to state whether or not she is at the end of life stage because so many people have hung on for ages, even though it looks as if there is no hope.

I`m no medic but at this stage, I wouldn't want my mother to be in hospital either. Far better she is in a care home where they know her and you and will be looked after by people who know her.

 

[Gosling]

Hello @Soupey . Just to say I am hoping that your Mum is at least pain free and comfortable in her care home, and that things are not too traumatic for you. When the time comes, I hope is will be peaceful . But as @Grannie G has said, people can 'hang on' for quite some time, but at least she is being cared for by care staff who know her. Wishing you strength.

 

[Soupey]

Thanks, she has rallied a bit and hasn’t choked or been sick for a few days so it’s just wait and see.

 

[hammang]

Hello Soupey, I just wanted to recommend Hospice Nurse Julie on tiktok or instagram. She has really sound advice about recognising EOL. Her videos are straightforward; not always an easy watch but strangely comforting. The end stages of chronic diseases follow the same pattern; excessive sleepiness lapsing into unconsciousness, reduced eating then difficulty swallowing and no solids; then fluids are refused or the swallowing reflex disappears. IV fluids cause more complications than benefit ; by that stage people are generally in a coma. A syringe driver can be used to give hyoscine for secretions, morphine, anti sickness meds and meds for agitation, whatever is needed. I hope that's not too much information in one go but I always think knowledge is power!. We had a really good palliative care team backing us up, it might be worth asking for them? All the best with what's ahead. x

 

[Soupey]

Thanks, I use tik tok or instagram but I’m sure my daughter does so will ask her. Mum is rarely awake now, they manage to rouse her to take food and drink, if you put a spoon or cup to her mouth she will open it but other than that she just sleeps. Her advance care plan is for palliative care only, she just had a bad chest infection and we got a call that we should expect the worse but with antibiotics, oxygen and steroids she has got over it for the moment!

 

[canary]

Hello @Soupey

Im so sorry to hear about your mum. It definitely sounds like she is in the final stage, but how long this will last is impossible to say - it may only be a week or two, or it may be several months.

This stage can often be a roller coaster and people with dementia are judged to be at EoL, only for them to rally, more often than you would think
((((((((((((((((((hugs))))))))))))))))))))

 

[cazzerb]

Thanks, I use tik tok or instagram but I’m sure my daughter does so will ask her. Mum is rarely awake now, they manage to rouse her to take food and drink, if you put a spoon or cup to her mouth she will open it but other than that she just sleeps. Her advance care plan is for palliative care only, she just had a bad chest infection and we got a call that we should expect the worse but with antibiotics, oxygen and steroids she has got over it for the moment!

We seem to be in a similar position with my dad. I find it hard to judge what the care home mean by "sleepy but settled". We had a call last week saying he was unresponsive, and went up to visit (he is 150miles from us) but he then perked up over the next three days.
I find myself second guessing everything they say and trying to work out what they are not telling us, just so that I can prepare myself. But it's pointless as things change so much.
I feel for you, Soupey, Ireally do.

 

[Soupey]

Thanks everyone, it is not practical to rush up to the care home every time they call but I wouldn’t want to miss the end if possible. It doesn’t help that you still have to make appointments to visit (unless they phone you to come) and they only allow so many visitors at a time so you need to know what you are doing days in advance and phone during the permitted times to arrange a visit.