How long to go?

[bigTillyMint]

My mum has been in her lovely Nursing Home for 5 1/2 years, since her GP and SS said she needed 24hr care for dementia. She wanted to just be able to pass at that point, but that’s not how it works, obviously.

She has been so well looked after, but has recently really deteriorated. She apparently has an infection (not UTI) which may be the cause - GP to give meds as appropriate, but over a couple of days there was a sudden massive change and she isn’t really eating or drinking and is in bed and barely aware. It was really pitiful to see

Does anyone have any idea of how long this stage may continue for?

Congratulations for finding a nursing home where she's survived more than five years - two years is about the average for someone needing 24-hour care due to dementia, and even that's lucky.

If the infection is cured with mega antibiotics she might come round but obviously we don't know. Someone not eating or drinking can fade very quickly, I have to say. In my experience, it would not be totally surprising it if were less than a fortnight - which is not the same as saying I know, of course. You don't make it clear what that you think the optimum outcome would be though I suppose we can guess.

My suggestion is to root out all the meds that might work - you are doing this, I know - and if they don't someone might take about palliative care which in my experience with my late mother was always to be avoided but it's different for the folk, she was a different case, they were always pushing it before her time. In this case palliative care can mean making someone comfortable on end of life care - personally I never got any sense out it - my mother was touted for end of life palliative care in Feb 2016 - we said no and she died in October - get this - the following year but as she had Parkinson's I got the vague sense they were trying to finish her off (she did have a Peg feed for the last six months tbf).

Check on your mother's sodium levels - that's not an infection but if they are low that really can present someone as being on the way out when an overnight drip can turn it around. That could coincide with an infection and may mislead.

I am sorry for the situation you find yourself in yet you can take it from me, you have done very well.

'Different for other folk' I meant - for some, talk of palliative care sits well, for other care home residents they may have more juice left in the tank.

We’ve gone through similar with my mil recently, although different illness from the uti. She too had been in her care home for almost six years after needing constant care for dementia. The home has been lovely for/with her. Something (won’t go into it all) caused her to go downhill recently and when she was at the stage where she wasn’t eating or drinking or responding much the nurse told us it was end stages of life and could last anything from a day to a fortnight. She lasted 48 hours.

Thank you. And sorry for your losses

I feel like I’m now just waiting for that call

MiL lived in a nursing home with dementia for 4 years. She was pretty good but then deteriorated quite quickly, as you describe. She lived in that state for about 3 weeks.

My mum lived 6 weeks after she stopped eating. She was in hospital and had wonderful care. She was on a hydration drip, but I eventually asked for it to be stopped and she died 48 hours after. She was 94.

The doctor explained the process to me very thoroughly and said that each patient is different. ‘The important thing’ she said ‘is that stopping eating does not cause the death. Patients stop eating because they are dying’

During this process the patient is not suffering, feeling pain or feelings of hunger. Over the first 2 weeks, I was getting limited response, but gradually she slipped away. I was also told that the last sense to go is the hearing, so I held her hand and spoke to her. It was very hard, but harder for us than for her.

I hope this helps.

Thank you - that’s helpful to know. Sorry for your losses too

I would just add that I have since learned, that the process is longer in hospital as Homes don’t usually hydrate patients. This does not cause them any suffering.

My DGM survived about a week in that stage. She was being cared for at home by my dad who moved her in with him plus additional help of carers. She went into hospital in that final week due to an infection. I think the process was speeded up because my dad did not push for lots of intervention as really the time had come where it was better for her to pass.
Have you discussed with the home what you would like? They may be doing all they can to prolong the end when it sounds like that might not be what you want.

If it's any comfort my DGM passed peacefully shortly before her 95th birthday.

Sorry you're going through this

Thinking of you and Sending you strength. I think the waiting and the shock of it happening was the worst bit. We’re a week on now, and it’s still sad, but we’re remembering who she was in the past now, rather than the frail dementia patient she was worried n her last couple of years.

Thank you.

I was quite shocked to see her in such a state, despite knowing it would likely happen at some point. I’m now dreading the call - not knowing how long it might be is hard as she may improve a bit again.

We had the warning call this time last year when she caught Covid, but she shocked us all by fighting it and was back to where she had been previously. It’s so hard to know what will happen next.

Should just add that for anyone in this position, do make sure to keep your mobile phone on all night if that is the main contact the care home has for you. But don't have it right by your bed charging up as it can add some kind of overnight stress imo.
Make sure the care home has your contact details.

Make sure you have your car keys and front door keys in a known, tidy place every night before you go to bed, the last thing you want is to be caught in a faff and panic trying to find them if you get a phone call.

Op sorry you are going through this.
Care homes / nursing homes do hydrate people if it has been recommended by doctors and nursing staff.
We had this recently and the elderly resident in question lasted approx 3 weeks. I am not part of the care staff, but I know there was a point when hydratation was stopped upon medical advice and she went quite soon after.

Thank you.

The GP has seen her and spoken to me about end of life care. He thought days rather than weeks, but obviously it’s hard to say.