Terminal Agitation

[WalterHWhite]

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

Terminal agitation is more a sign the time is very short now. The palliative care team need to try and get the right combination of medications so she is more comfortable. It can sometimes be quite difficult to get the right mix of medications and can be tough to watch and care for someone with this.
Is it only District Nurses involved? Community Palliative Care team would be ideal to have monitor and advise on symptoms at home. You can ask the DN or GP to refer to your local hospice and most these days have a rapid service offering advice for those at home.
it’s also important to rule out other causes of agitation such as infections or constipation or urinary retention.

Thanks for your reply. The hospice is involved and the community team contact the gp when necessary.

It’s so hard to watch. I can only hope my mum is unaware

Has she been given either haloperidol, levomepromazine, midazolam or phenobarbital? After my Mum had midazolam she didn’t regain consciousness.

In my limited experience she is in the final few days now.

I will be thinking of you. X

It’s an awful time OP.
My 96yr old relative became what they called terminally agitated, convinced all sorts of awful things were going on, war, court cases, divorces, it was really hard! As well as hallucinations, talking to people that were long dead, trying to get out of bed and kneading at bed clothes. This went on for about 3-4 weeks, then they rallied for a day or two, then went sleepy for a week or so, then seemed to recover a bit again before becoming unresponsive for 48hrs before they finally died.
It was a real emotional rollercoaster, I think not helped by district nurses reluctance to administer sufficient pain relief. Can’t see why morphine dependence should have been a concern at this stage…I hope it wasn’t as traumatic for them as it was for me watching.

Sorry you're experiencing this.
My Dad passed last summer and he had this but thankfully it was brief and they medicated him quickly. He did however pass the next morning so it was very quick for us.
Sending you lots of love and strength for the time ahead x

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.

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

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

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.

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

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

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?

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

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. 😞

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

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.

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

Although I did want to know about the agitation honest!

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.

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.

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.

How are things?

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.

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.

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!