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Elderly parents
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Terminal Agitation

30 replies

WalterHWhite · 03/02/2024 15:37

I wonder if someone can help please. My DM is having end of life care at home. They increased her medication last night and I was told that she would be much more peaceful today.

She has stopping being sick but is still very distressed and agitated. I’m not with her at the moment as I’ve popped home for a bit. District nurses are involved and trying to get her medication right.

Does anyone know if terminal agitation is a symptom of her not being ready to go yet? It’s heartbreaking to see her so distressed and isn’t really what she or I thought end of life would be like.

Any information would be great. Thanks

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haribosarebest · 07/02/2024 19:37

My mum died a week ago in hospital. She was quite agitated on the day she died, she had some sedation late afternoon. Her breathing changed in the evening and she passed away very peacefully a couple of hours later. It's so tough, thinking of you

Paw2024 · 05/02/2024 16:40

WalterHWhite · 05/02/2024 15:27

Thank you so much for your support. All of you. It really means a lot and of course has cleared up some doubts and questions that I had.

Carers asked this morning for a different type of nightdress - because she was so stiff. I didn’t need to know that!

Her breathing is getting quieter. Still no agitation though. I feel quite traumatised by this and I haven’t led a sheltered life or anything. I can only hope that she’s at peace very soon.

I get it totally, I sat with my mum as she was dying because my dad refused to and I was "but I'm just a kid and I need an adult"

I said to one of the nurses "she's dying, she won't get better but yet we have to wait and watch for her to die? How is that fair when you couldn't do that to a pet?"

Original poster
WalterHWhite · 05/02/2024 15:27

Thank you so much for your support. All of you. It really means a lot and of course has cleared up some doubts and questions that I had.

Carers asked this morning for a different type of nightdress - because she was so stiff. I didn’t need to know that!

Her breathing is getting quieter. Still no agitation though. I feel quite traumatised by this and I haven’t led a sheltered life or anything. I can only hope that she’s at peace very soon.

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Projectme · 05/02/2024 11:09

Thinking of you OP.

Growlybear83 · 05/02/2024 08:05

I agree with the previous posters that it's not a horrible thing to say at all. Watching a loved one go through the agitation is beyond awful and I was very relieved when my Mum became calm before the end after two horrible days of this. I'm so sorry for what you've been going through.

elliesmummy19 · 05/02/2024 07:50

It’s absolutely not a horrible thing to write! Far from it. You want her to be at peace. That’s a kind and caring thing to want.

Thinking of you!

SeriouslyAgain · 04/02/2024 15:09

What you're saying isn't horrible at all. You are doing everything you can to make her final days as peaceful as they can be and that's a very good and caring thing to be doing.

Original poster
WalterHWhite · 04/02/2024 13:53

Thanks for asking ellie. No agitation since about 10 last night. She’s very peaceful at the moment. Hopefully it won’t be too long now although that seems a horrible thing to write.

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elliesmummy19 · 04/02/2024 11:52

How are things?

Original poster
WalterHWhite · 03/02/2024 22:49

Thank you for saying that FictionalCharacter. I really needed to hear that I haven’t helped send her on a path she wasn’t ready to go down. It’s ridiculous of me really - as if a doctor would end someone’s life on my say so. I’m sure you know what I mean though.

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FictionalCharacter · 03/02/2024 22:41

WalterHWhite · 03/02/2024 16:16

Yes she does have those meds Snowdrops. Except the one begin with P. I just can’t help feeling she’s not ready to go. Which is daft I’m sure.

It honestly doesn’t mean that she isn’t ready to go, it’s the opposite. Her body and brain are failing, and that’s why this is happening.
I’m so sorry, this is such an awful time for you.

Snowdropsarecoming · 03/02/2024 20:32

That’s OK. It’s such a surreal time to sit with someone in their final days, it’s the longest time but also the shortest time. In the moment it felt eternal and as if the person is never going to let go even if you understand the person is dying on an emotional level it can be difficult to comprehend.

Original poster
WalterHWhite · 03/02/2024 20:23

Although I did want to know about the agitation honest!

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Original poster
WalterHWhite · 03/02/2024 20:22

I have googled and read the Marie curie information. I think I just needed to chat about it. I’ve been so busy with my mum that I haven’t really seen anyone. So thank you

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Snowdropsarecoming · 03/02/2024 18:53

It all sounds very stressful and exhausting for everyone involved. If you google ‘what happens when someone dies’ there are lots of articles by various charities which I found useful. You may find some of them helpful too.

Silvers11 · 03/02/2024 18:22

So sorry to read this @WalterHWhite.

I agree with others, that it likely won't last for too much longer. Awful to watch for you and her family. Thinking of you

Growlybear83 · 03/02/2024 18:20

My Mum was like this for the best part of two days before she died and it was really horrible to see. She was switching between doing very clear knitting movements with her hands and then trying to strip off and pull her oxygen mask off. I assume one of the nurses gave her some extra morphine after we left on the second day she was like that because when we got the call to go into the hospital as quickly as we could, she was very calm and peaceful. I'll never forget the two days that she was agitated - I think it's probably the most distressing thing I've ever seen. 😞

Original poster
WalterHWhite · 03/02/2024 18:08

Yes she fell and banged her head in December, went to bed and said she was ready to go. She talked to her gp who gave her 7 days. Although she hasn’t recovered as such she thought she might get better at one point. Asking why she couldn’t get up. She was very weak though and hasn’t eaten since 28th dec.

She’s gone downhill from there really, so yes she does know she’s dying (or did). Earlier today she was shouting out her name and moaning which doesn’t seem peaceful to me but maybe she’s totally unaware. The dn’s have been so she’s peaceful now. I can only hope she isn’t aware tbh

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Snowdropsarecoming · 03/02/2024 17:51

WalterHWhite · 03/02/2024 16:18

Gawd user, I don’t think I could handle that at all. What a horrendous experience.

My Mum died in September. She wasn’t ready to go but her body was it was her time.

Does your Mum understand what is happening? I mean has someone told her she is dying?

cooldarkroom · 03/02/2024 16:42

My MIL recently died after a couple of weeks of horrific distress, calling for her Mum (was gone for 25 yrs) desperate to get up, ( had a broken hip) it was horrific to see her so lost. Completely deranged.
You wouldn't allow it for a dog
Her final downhill demise lasted about 2 weeks

Jmaho · 03/02/2024 16:33

Yes horrendous. We're coming up to the 6m mark soon and I'm nowhere near over it. Don't think I ever will be. We were never warned about how traumatic the end could be. His actual death was peaceful but the two days leading up to it were very difficult to experience but glad I was there with him xx

ThePure · 03/02/2024 16:28

My mum had this in the last few hours that she was conscious before she died. It was horrible, so distressing. She thought she was pregnant and having a baby. I think she that was how she tried to make sense of being in pain. She was sobbing and crying. The hospice nurse asked her if she wants to go to sleep now and she managed to do a thumbs up sign, they whacked the morphine syringe driver up and she was calm and peaceful and never regained consciousness. She passed within 24h. She wanted to go by then. She was really suffering and I have no regrets at all that they sedated her heavily at that point.

Honestly don't feel guilty I think it's more likely she does want to go and needs more meds. I would absolutely push for that.

Original poster
WalterHWhite · 03/02/2024 16:20

It’s an awful experience isn’t it jmhao? I feel so selfish complaining but I feel ill equipped (?) to deal with this tbh. Thanks for the kind words

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Original poster
WalterHWhite · 03/02/2024 16:18

Gawd user, I don’t think I could handle that at all. What a horrendous experience.

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Original poster
WalterHWhite · 03/02/2024 16:16

Yes she does have those meds Snowdrops. Except the one begin with P. I just can’t help feeling she’s not ready to go. Which is daft I’m sure.

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