End of Life care and unresponsive

[CyprusLiving]

My husbands Grandma was taken to hospital on Monday. She was found unresponsive at home and has not regained consciousness. She is able to hear and squeeze peoples hands, but that is all.

On Tuesday we were told she is now on end of life care and it would be likely to be the next 2 days.

She is still fighting, everyone is wanting her to find peace now and it's already very draining.

Just wondering if anyone has been in this situation before and could share their story?

I can't find anything online about a person being completely unresponsive apart from hand squeeze and hearing.

My DM passed away 2 weeks ago after a spell in hospital and then went in to end of life care. She was very occasionally lucid and we kept thinking she was passing and she would then start breathing again. We were all very drained from the lack of knowing when it would happen and when she finally did it was peaceful and we were not there we were on our way back to the home. I felt terrible that we had missed being there after being by her bedside the whole of the day before but also a relief that she had passed to a better place
afyer this I carried on working and only now with the funeral this week am I feeling completely drained and emotionally exhausted by it all and I feel sad because I miss her, she was a good age but it doesn’t make it any easier
I hope it’s a peaceful passing for your grandma

My gran hung on 5 days and died on my daughters birthday. It was very draining just waiting on the inevitable. It was as if she was waiting on someone, but everyone was there at the hospital. The date in which she died is common for births/deaths down the generations and we all said she would go with the intention of never being forgotten (which she never would be....)

Dmil was on end of life care for almost a week. It was very draining, you're right. It's a horrible half way state. We wanted her to go but didn't want to lose her, said goodbye every time expecting it to be the last, it was hard.
But she seemed mostly calm and not in pain which made it easier.
Sending peace to all your family.

My mum was on end of life care for almost 3 weeks. It was heartbreaking.

I’m currently sitting next to my wonderful dad who is on day four of end of life care. It follows thirteen weeks of ambulance rides to hospital and discharges (premature) that led to more admissions. He’s had MRSA, C-diff, Covid, bronchitis and never ending sepsis. If he can’t get better I just want it to end for him. I feel heartbroken and exhausted.

My darling mum is currently on end of life care with dementia. It's so hard just waiting for her to go but I'm desperate for her to be at peace.

My grandma was exactly the same during the first lockdown, it turned out she had stage 4 ovarian cancer, and by the time she was poorly enough to be in hospital she sadly was so so poorly that she went to EOLC very quickly.
That august was when there was a week of heatwave, during which my DGM had no fluids, only morphine. She was, as you've described, completely unresponsive (sometimes loud noises, such as a door banging on the ward if it was otherwise silent, might make her jump slightly, but the doctor explained this was a reflex).
She was admitted on Tuesday, and didn't pass till Saturday - with no fluids!
We still have no idea how.
I hope that you are able to come together with happy memories of her

My dear father was in a nursing home and had yet another stroke. He was unresponsive for a week. We took turns to sit with him and we knew he could hear us. Fortunately the staff called the doctor and not an ambulance. They did give him fluids and even tried to feed him which he refused. He died on his own. He was always so strong for all of us that I don’t think he could die while we were there. He wasn’t in any pain and went peacefully. After his death he just looked as if he was asleep and was going to suddenly sit up and say ‘ what are you all doing here?’

I used to be a hospice nursing assistant, and this is very normal.
Hearing is the last sense we lose at the end of life.
Often our loved ones will appear to respond to our voices or touch until the very end, take comfort that she knows you're all there and she loves you

My dad died on Friday after nine days of end of life care. The last week was truly awful and haunts me. But I’m so glad it’s over for him.

Like mdh2020 my father “sent me away” at the end. I think he preferred being on his own to deal with things. He told me he felt ok and to bugger off and get some rest. Then died while I was at home. He also seemed to find people talking exhausting. He liked to hold my hand and be quiet.

I'm sorry @Honeyroar

So sorry for all of you who are, or have experienced this . Until you have been in this situation it's hard to comprehend how emotionally and physically draining it is. Xx

I've been there and its rough and heartbreaking. Advice I was given some of which you hopefully have been told already

• Look after yourself. I was told this and didn't understand what it meant. what it means is the end of life process can take days or weeks and it is very distressing for relatives sitting by the bedside. When it starts if you have not experienced it you think it will be 24 hours or so - so y ou don't move from the bedside. Scared to leave. As others have said, you don't know how physically and emotionally draining it is.Eventually you will need to sleep and eat and shower. Know this and do it otherwise you won't be able to be there for your loved one and in a compos mentis state to support them at the moment they die.

• Its very common for a person in end of life care to die when the relatives are away from the bedside even if they've sat there for 48 hours and popped to the loo. Be aware of this. I was told they think it can be because the person is choosing to die alone to spare their relatives. If it happens dont beat yourself up.

• Talk to your loved one. The doctors believe that hearing is one of the last senses to go and they can still here you.

• I was told that sometimes they will hang on if they think you don't want them to go - which is unnecessarily prolonging their life and suffering. If you can manage it, it's not a bad thing to be able to say to them and let them know that if they are ready to go,they should feel able to go and say goodbye. Let them know you will be alright with out them.

• If it's someone you know well and you've been with them, and they are not on a morphine pump, keep a close watch on them for signs of pain and if they appear distressed or in pain, speak to the medical team about getting them pain relief. Don't be afraid to push this if you are sure someone is in pain. I had this and was told 'its just how dying people sound'. I made a fuss and after pain relief was given, it was very clear that it wasn't just how dying people sound.

• TRIGGER WARNING DISTRESSING COMMENT HERE.... Personally I found one of the most difficult and distressing parts to deal with was the mouth care where the nurses moisten the mouth and lips to keep the person comfortable - as they are often breathing through their mouth which is dry. A dying person will try to suck onto the wet mouth care stick. It still give me nightmares and I feel like it was watching someone dehydrate to death as fluids had been stopped. I discussed it with the doctors who reassure me that they are basically unaware of this and in a virtual state of unconciousness/semi-conciousness. I remain unconvinced and it was one of the most distressing parts of the whole thing.

• PRACTICAL TIP 1: if you are the immediate next of kin or the person who will be responsible for taking the persons belongings home, it's no bad thing to take a few things with you every time you leave to get some rest. This will avoid the horrible leaving of the hospital after the person has died and having to pack up all their stuff and check if you've left anything. Doing it bit at a time over a few days lessens that awful task when you are just bereaved. If they are wearing jewellery, wedding rings they didn't want to be buried or cremated with or have anything like that on, consider whether/when you want to remove it and when.

• PRACTICAL TIP 2: Many hospitals have free parking for those sitting by the bed of patients in end of life care. It's worth asking about because it soon racks up if you are there for days for nearly 24 hours a day and no one thinks to tell you about it until you are 5 days in - by which time the process of getting a refund is beyond you & who cares? on the other hand, if you sort it in advance, its just dealt with.

• PRACTICAL TIP 3: If you are one of several relatives there, don't forget to bear in mind that it is not just about you. Be sensitive to whether others there may want a bit of time alone - even 10 minutes or so - to be alone with this person to speak to them alone for a bit. Maybe worth checking and actively asking if there is a group there. Especially for children and spouse. Equally if you would like some time alone, don't be afraid to ask - better to do it now than have regrets later.

• If you are there when the person dies, try to be in the moment and appreciate it for the huge privilege and spiritual (in the non-religious sense of that word) significance that it has to be with someone at the moment the die. Take a moment for yourself and just see how you feel -whether you sense a person still or their spirit. Whatever you believe whether religious or even if atheist, I think this helps you mark a massive moment in your own life - to be with someone you love when they die.

• If you are there when the person dies, have a think in advance about whether you are likely to want to sit with them for a bit and for how long. People have different attitudes to this. Some want to stay for a while but some don't. You may regret rushing off too quickly. Advice I was given was be careful about staying too long because some people then find it difficult to leave.

Hope that is of some help to you and anyone else in this awful awful situation. You are in my thoughts. Death is just awful and there's nothing else to say. It's shit.

Darling mum still here five days later. Not sure how much more I or she can take, I find it utterly inhumane.

I'm sorry @lollipoprainbow

Dmil was much the same, it's so hard.

Sending love to you and your mum x

@User287264 thanks so much I just feel
So helpless watching her xx

I’m so sorry. I found it absolutely painful too. I actually found a hospice and we were all set to transfer my dad, but he died that night. It might be worth a look, the place seemed so much calmer and more dignified than the hospital.
Thinking of you.x

Darling mum died at 3.40am. So glad she is at peace finally.

@lollipoprainbow - at least she is at peace now, but that doesn't stop your pain. Hopefully you get some rest now and space to grieve. So sorry.

Sounds daft but someone told me to tell the person it was ok to go. My DM was like this so I held her hand and talked to her, telling her it was ok if wanted to go and we'd look after my dad. She died that night. It's almost as if they need 'permission' to go.

DF has been in and out of hospital for the last 5 weeks. The last 2 weeks they've moved to end of life "care". It's thoroughly draining. I'm still working & looking after kids & DM.
I'm distraught by the lack of good care in a hospital that is on it's knees. I am angry at this government and everyone who voted for them. How can we treat people this way. It's utterly heartbreaking.

@HerbalTeaAndCake I’m so sorry. I completely agree with you. It’s the most horrible thing I ever went through (Sept) and I seem to be speaking to more and more people that have been through it with their parents too.

is there any way you can take time off work? It’s an exhausting time for you, even without everything else you have to cope with.

Not really possible just now.
I'm so sorry for your loss too @Honeyroar

I feel unable to plan anything nice, in case the end happens & completely anxious and heartbroken all the time.

Walking in nature is the only thing that seems to help calm me.

Try and walk as much as possible then. The fresh air and exercise will only help. Be as kind to yourself as you can. I hope it happens as calmly as it can. Is he in hospital?