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Elderly parents
Original poster

End of life advice desperately needed

53 replies

Nodancingshoes · 30/07/2024 15:05

My grandmother is receiving end of life care in a nursing home following 3 weeks in hospital. She is 99 and my sister and I are NOK. Up until 18 months ago, she was fully independent. She has been in the home for 8 days now, no food in all this time and almost no water - she is just on mouth care now. She is almost completely unresponsive now although does seem to know briefly when we are there. If she does wake, she is very distressed. She has had a syringe driver for about 2 weeks. I know that it is impossible to predict but, in your own experiences, how long will it be until she passes? She is suffering and we are all in bits watching it happen. I keep my phone by my bed every night waiting for the call - I have even prayed for God to come and get her even though I am not in the least bit religious 😥I know no one has the answer but if you can share your own experiences I think it might help

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PrincessofWells · 30/07/2024 17:24

Have you said to her that's it's OK for her to go?
You can ask them to increase the morphine, but it does sound imminent, i.e. within 24 hours or so from what you've said.

BananaSpanner · 30/07/2024 17:29

Once my mum had the syringe driver in, it was about 4 days and about 2 with changed breathing. It’s horrific to go through, for you and them.

protectthesmallones · 30/07/2024 18:25

@Nodancingshoes

Tell her you are proud of her, tell her she's done a brilliant job and that you and your sister are happy and are there for each other.

Maybe she needs to hear this to be able to let go and move on.

She can hear you even if you think she can't.

Growsomeballswoman · 30/07/2024 18:31

Animals have a much more dignified end. It's so unfair

IthinkIsawahairbrushbackthere · 30/07/2024 18:41

My mum went downhill slowly over a week after a seizure on the Saturday. She became less and less responsive through the week and on the Friday the staff arranged for the end of life pack.

On the Saturday we felt, and the staff agreed, that she was nearing the end but she was peaceful and so they hadn't used the EOL pack. The next day we realised that her breathing had changed - so loud and her whole body was moving with each breath but still peaceful. I'm not sure of timing but she suddenly opened her eyes and made a strange noise then closed them and as far as we could tell her breathing stopped. The nurse came and said that she still had a pulse but it wouldn't be long. She asked if we wanted her to stay but we were ok so she came in and out every ten minutes or so and eventually she confirmed that she had gone. From us arriving in the home to confirming death was just over two hours.

2Old2Tango · 30/07/2024 18:51

Sorry for your situation OP. My DH died last week and he was only in the hospice two days on a syringe driver. He was sedated as he had "terminal agitation" which made him extremely restless and distressed. DH however had another EOL sign in his breathing. He would take a breath and then seem to stop for a minute and then gasp another breath. This went on for some time.

With no fluids I wouldn't think it would be too long now.

LizzieBennett73 · 30/07/2024 19:09

They're giving her pain relief and anti nausea medication so I'd ask for a sedative/relaxant to be added to the syringe (Midazolam or Haloperidol). It's very common for terminal agitation but horrible to witness.

Original poster
Nodancingshoes · 30/07/2024 19:46

We have asked if she can have anything to calm her but they are saying she is having all she can. Apparently when we are not there, she is peaceful and only gets agitated when she knows we are there, probably because she can sense how upset we are. She was trying to open her eyes and say something earlier and was getting in a state. So now we don't know what to do for the best - I don't want to make her distressed but I can't stay away and leave her by herself 😥Praying it will be tonight

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Original poster
Nodancingshoes · 30/07/2024 19:47

@2Old2Tango so sorry about the loss of your DH 😢

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LizzieBennett73 · 31/07/2024 20:37

How is she today, @Nodancingshoes.

Original poster
Nodancingshoes · 31/07/2024 20:49
Dog Hug GIF

@LizzieBennett73 much the same. Thank you for asking. Eyes are closed but not fully asleep and was getting a bit agitated. Breathing is still steady. They came in and gave her some extra pain relief whilst I was there and mouth care. I asked again how long they thought it would be but they were vague. I can take the truth - i'd rather hear it!

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Original poster
Nodancingshoes · 31/07/2024 20:51

I do not know where the dog picture came from!! Bit of light relief!

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MitskiMoo · 31/07/2024 20:58

DM got agitated at the very end, only hours before she died. It was distressing for my siblings to see. I was in a different hospital, half relieved if I'm honest. Her breathing 'rattled' too. Thinking of you and your grandmother.

embolass · 31/07/2024 21:33

Hospital Nurse here, looked after many patients at end of life. It is the hardest thing, watching a loved one coming to the end. You are both doing amazing being there and it can often seem to go on forever. Levopromazine is similar to midazolam as a sedative for agitation but also for nausea/vommiting. The dose may need adjusting if she’s not settled. The noisy breathing is distressing to hear but not usually for the patient. Suctioning can help, staff may be able to do this. I used to feel my patients feet as a rough guide and if becoming progressively colder each time and moving up their limbs knew body starting to shut down and wouldn’t be long. It’s still v hard to predict. Take care and be easy on yourselves. Sending strength for this last stage x

Mum2jenny · 31/07/2024 21:40

When my dm was very ill and close to death, I just got on the bed next her, cuddled her, and told her that she was free to pass and that her dh and dps were waiting to take her to the other side.
She was religious, not sure if that makes a difference. But she passed before I could visit her again. So that was within 10 hours.
i have heard that giving very ill ppl the permission to pass can help them, not too sure how much I believe it, but it may help you to do this.

HalfasleepChrisintheMorning · 01/08/2024 06:21

I’m sorry you are going through this. We just went through it with my Dad in hospice.
I don’t know if you are all staying with her 24/7, we did, and I read sometimes they need privacy to let go. My mum and I both left the room and although he was still breathing when we returned he died very soon after.

Original poster
Nodancingshoes · 01/08/2024 14:16

I'm not here all the time as I need to work but we are doing 3 or 4 visits between us a day plus her old carers are going in once a day too. I'm here now, she's peaceful today - just sleeping. Noisy breathing but it's steady,not fast or slow

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Original poster
Nodancingshoes · 01/08/2024 17:38

Spoke to the nurse - she's increased her sedative which is why she is much more sleepy and peaceful today. I asked how long she thinks it will be and she said she couldn't tell but that it would be sooner rather than later. I'm come home but they are going to call me if anything changes - I'm only 2 minutes up the road so I can get there quickly. I told Nan before I left that it's ok to go, we will be ok and it's time to look for Grandad now 😢

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LizzieBennett73 · 01/08/2024 18:13

@Nodancingshoes It does sound like it's nearly time, and I'm so glad she's now peaceful. It makes it much easier to say goodbye when you're not panicking that they're in pain. Thinking of you Flowers

Balletdreamer · 01/08/2024 18:18

Three weeks for my nan. I agree with other posters, tell her it’s ok to go and you’ll be alright. I really believe that helps.

Original poster
Nodancingshoes · 01/08/2024 21:21

My lovely nan passed away at about 530pm - 5 minutes after I left 😢 I told her it was time to look for my Grandad and go with him before I left and I think she did this. I'm so grateful that her last day was so peaceful - I'm glad her suffering is over. Thank you for all your support - it has really helped me through this xx

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FadedRed · 01/08/2024 21:32

Sorry for your loss, @Nodancingshoes 💐
Please take some comfort knowing that you cared for your Nan until the end and that she knew you were there for her and that she was so loved.

Wallywobbles · 01/08/2024 21:37

Peace to you all.

WitchDancer · 01/08/2024 21:38

My condolences for your loss. May she rest in peace and rise in the glory of our Lord.

My Dad did the same - passed almost as soon as we left him for the night. Sometimes I feel horribly guilty for going but other times I am convinced he waited until we left so to not upset us.

LizzieBennett73 · 01/08/2024 22:38

My Dad passed away 15 minutes after I'd left him. I spoke to the palliative care consultant after and he assured me that many people seem to wait until their relatives have left the room. I don't know why, but that time I left, I told him it was OK to leave now, he was too exhausted to stay and that I would miss him every moment of the rest of my life.

Take care of yourself, don't underestimate what this can do physically and mentally to you - so sorry for your loss Flowers

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