End of life care nursing home advice

[Totallybannanas]

Today the nurse said they are withdrawing food and fluids as dad can no longer keep it down and doesn't have much appetite. Today is day 2 of not eating. When I arrived, he was fast asleep and snoring and didn't seem in pain. He was pretty much out of it, and then he finally woke up trying to get out of bed. He seemed to suggest he wanted a drink so I swabbed his mouth and gave him some sips of water. They are doing hourly checks on him. I stayed until 10.30 tonight but after a full day at work I'm knackered. It's been pretty hard going for months, as he would dip and come back up. When he woke up he wanted to get out of bed, but he had no power in his legs and finally I got him back in. He was standing and transferring Sunday. How long can this go on for? He is still taking some medication orally and having injectables, but no syringe driver yet. I'm still not sure he is receiving the best care in the home, but I'm completely out of my depth as to what he wants or needs as he can barely talk now. I noticed, his chest sounded bubbling and he was trying to cough but couldn't bring it up. Do I go sick from work, carry on as normal? I have taken a lot of time off already. I can't be be with him 24/7 as I'm already exhausted but don't want him to be alone. Also I want to be advocating for him, but it's hard when I don't know what he needs. The night staff seem pretty clueless when I left 😔 The day nurse was more helpful but he said he can't predict how long, but suggested my dad is strong so could be days or week. What should I do? I'm just worried this will go on longer then expected.

Sorry you’re going through this . It’s tough watching a loved one fade away. I think I’d question why they are withholding food and fluids but still giving your Dad oral medication. Don’t be afraid to ask questions.

Often near the end of life oral fluids have to be withheld when the swallowing reflex becomes so weak that the person can’t safely swallow. There is risk of the fluid trickling into their lungs rather than swallowed down into the stomach. It’s likely to cause pneumonia if it’s inhaled. Likewise with food that’s not safely swallowed.

It’s impossible to predict how long and of course the situation can take a sudden downturn. Especially if your Dad is already showing signs of a chest infection. From what the nurse said to you it doesn’t sound as though they think it’s imminent. If they did they’d say so.

if you feel you are able to go to work maybe you could do so on the understanding the nursing staff phone straight away if your Dad shows any sudden deterioration or cause for concern.

You’re doing your best. Don’t forget to look after yourself as well 💐

Thank you, the reason for with holding is because he can't keep anything down especially food as he was vomiting. To be honest, it's hard to process everything.

It’s difficult to think straight when you’re mentally and physically exhausted. Get yourself off to bed and try to sleep and recharge your batteries to face another day.

Look at your work's Carer leave policy, I believe you are entitled to take 5 days in a rolling year as carers leave since April 2025. It may be unpaid.
Is your dad agitated or just wandering? If he's end of life he should have his pink card drugs for terminal agitation which may help him settle. I am sending you all my best, my dad's been on and off end of life pathways a few times in the last 4 months but he rallies each time. He's got end stage dementia and is no longer mobile so easier to manage. PM me if I can help

I didn't go to work today, purely due to exhaustion. I don't know how long this will go on for.

I have no helpful advice, just reached to send 💐 it sounds so tough x

How supportive is your work?
Is going in and then having to rush away actually more difficult for your workplace than just being absent?
And if you went in could you actually do your job?

It honestly doesn't sound like you can manage work right now so I would check with your manager what kind of leave this is and take it.

I could probably leave, but as my dad's main next of kin it's difficult to work and be there for him. I went sick for 3 months when he was poorly and got diagnosed. I also experienced anticipatory grief. I just want it over with and for it to be quick and peaceful. But no one will give me a time.

Hi Op,

Didn't want to read and run. Went through Similar last month with my Darling mum.
We had been through a couple of 'this is it' moments in the last few months only for her to make a amazing recovery - Which was great, but tbh my nerves were fu*ked to put it plainly. i was terrible at work, couldn't rest at home and close to a breakdown through lack of sleep and overwhelming guilt at just wishing this was all over - So big hugs to you xxx

For us the end came quite quick. Once mum started sleeping all the time she lost interest in food or water, and didn't pee for about 24 hours.
We stopped food and drink maybe 48 hours before as she was in danger of aspirating - although you can still have oramorph as it kind of sinks in the mouth.
About 24 hours before she went into a very deep sleep where as before she was kind of semi conscious to noise etc.

About 6 hours before she passed her breathing changed, and her skin began to cool and go almost waxy if that makes sense, by then she was being given her end of life injectables as she was a bit restless and the morphine can help with breathing with COPD.

I know it is different for everyone, but i felt helpless like all i wanted was a straight answer as to what was going on, and just for someone to say the words ' she is dying - it wont be long' as i truly didn't know what to do for the best and was still trying to balance work and being a mum.

How long are you from the home, and how quick could you get there? I think that would effect me decision, also if you are not there how often are they checking on your Dad?
If it makes you feel any better could you put a notice up on the wall in your dads room with your contact number and for the carer to call you straight away if they notice a decline?

Lastly i just wanted to say don't tie yourself up in knots over this if you are not there, or have stepped out of the room at the wrong moment (i ended up terrified and had to pee with the door open opposite a window as i was scared mum would go the second i left her side) - Not being there for a the last moments where someone is unconscious, does not undo the years and years and years that they knew how much your love surrounded them.

If you do go, take comfy clothes, fluffy socks and things to look after yourself with. It is a impossible task to face so be kind to yourself xxx

Thank you for your reply, I'm taking the rest of the weekend off to see how things lie over the weekend. I can feel myself getting run down, and overwhelmed right now. I totally get what you are saying, no one has said those words or explained what's going on. Palliative care really is shit and this unknown is scary. He seems to go hot and cold. His breathing seems strong, but I can hear the secretions gurgling. He's muttering now and then. He's not really responding to my touch or Voice.