Agitation at the end of life....coping with violent death

#1

Hi all,
I’ve posted before about my father who i am just now visiting as he dies from esophageal cancer. He seems to be taking a turn for the worse…he is really agitated, not sleeping and crying out for help to breathe (his breathing is actually fine but he has anxiety about it…this has been going on since his diagnosis). My mom is caring for him full time and despite her incredibly strong demeanor it is taking a toll on her now.

I know this kind of behaviour is a sign that he is getting close to the end. We have painkillers and medicine for him but they don’t seem to be working anymore.

I’m having a hard time seeing him like this and honestly I’m afraid it will haunt me forever (im 26, oldest of 3)…his delirious state and agitation. I’m doing my best to support mom and be with him when he is in a calmer state.

How have you all dealt with watching a loved one actively dying? Its not like in the movies where they drift off peacefully intp sleep…it is violent and loud and horrific and it so so hard.

Am i going to ever be okay after this ?

#2

I’m so sorry to hear that your dad is dying, and that he is having these distressing symptoms. As you have said, these are symptoms that can happen as someone approaches the end of life, but that doesn’t make it any less upsetting.

Do you have support from a hospice or palliative care team? If his current medications aren’t helping, it is definitely a good idea to let them know, as there may be other treatments they can try to help keep him comfortable.

Marie Curie also have a free helpline number that you can call for information and emotional support when a loved one is dying - it’s 0800 090 2309.

Sue Ryder also have some information pages on our website that might be useful:

-What can I expect when death is near?
-What can I do to help when someone is close to death?

#3

Hi T42197,

Have exchanged a couple of messages with you and see you are now with your Dad. I am so sorry to hear he is so agitated as it is very upsetting and frightening to see. As Priscilla has said, are you getting any help or visits from palliative care staff or district nurses? I remember you saying your Dad was thinking of going to a hospice when the time came. Have you got at home support from them and is someone visiting you?

My Mum was at home with us and we had the help of our local hospice and daily visits from district nurses. Both gave us 24 hour support numbers to ring for help. Do you have this facility and can you tell them how upset and agitated your Dad is, he should not be having to experience such pain. Mum was prescribed morphine which she started by having orally and she used to call out for it as she was in pain. As it tastes disgusting she must have needed it. Later on arrangements were made for her to have stronger amounts through a syringe driver. With this she lapsed into a semi conscious state which though not nice to see was much better than the agitation and what looked like fitting. This meant she did just slip away in her sleep eventually. We were with her and it was very peaceful.

The next few days or weeks are not going to be easy so get your Dad all the help you can. You and your Mum need it. Do what you need to so you get help and don’t be afraid to cry to get it! If your Dad can go with a level of peacefulness it will help you as not all the memories of this time will be so awful. I will be coming up to two years since losing Mum this summer and the memories don’t exactly go but the worst do fade.

You take care of yourself and your Mum as well.
Mel.

#4

Hello T42197, I am so terribly sorry for what you are going through and for what you have facing you. I think it is about time you had outside help. My brother in law died of cancer and he was agitated and crying out so his daughter got the McMillan nurses to visit straight away, they decided that it was time he was in a hospice as they would be able to monitor him better there and get round the clock care from professionals. He did not want to go into a hospice as his wife (my sister) died there, he wanted to be at home. His daughter was at her wit’s end as he fought her all the way and it broke her heart to not grant him his final wish to die at home but with all the will in the world and choose how much you love someone and want them to get what they want, no-one wants to see a loved one in pain.

They took him into the hospice and within minutes of him being treated he was calm and talking to them. He died three years ago this summer and to this day my niece feels guilty about not granting her dad his wish to be at home when he passed away, but I told her she had given him the greatest gift of all, she loved him and did not want him to suffer.

That is all you can do for someone, your mum is going through hell at the moment and you also have her to think about, so ring the people who have been treating your dad and ask them for their advice, tell them what is going on and see what they say.

I know what you are going through because we have all been there one way or another, losing our parents, our wives, husbands and children. We are no strangers to grief on this site and we are always here for you.

Please take care, we are all thinking of you.

Sheila xxx

#5

Hi all, thank you for your comments and well wishes. Weare doing hospice at home and we have nurses that come to visit…We have sedatives and anti anxiety meds for dad and a nurse visited today where we discussed increasing his dosages. The agitation has really only been the last few days and dad isnt really sleeping so neither is mom. Luckily we just found out that we may be able to get a night nurse to come in so mom can get some rest. This is really really hard

#6

Hello, it is a terrible time that you are going through. My niece is a palliative care nurse who looks after patients in their own homes through the night, and she always tells me how loved ones still want to be with their husband, wife, children even though they have someone there through the night ensuring their loved one is looked after, because they have a deep fear of their loved one passing away whilst they are not there. The nurse will of course, let you know straight away if things change so that you can be with him when the time comes.

I have also been through this when my husband was rushed into hospital, he had people looking after him through the night but I needed to be there, holding his hand just to let him know there was someone he loved sitting by his bed. Your mum needs to keep her strength up because she and yourselves will have a lot of grief facing you in the coming months so I doubt if she will be able to sleep at all. If your dad wants one of you with him as well as the nurse you can take it in turns to sit with him so he is not with someone he doesn’t know.

I would not wish what you are going through at the moment on anyone, it is a nightmare.

Sheilax

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#7

My mum was the same but palliative care nurses will help with the agitation and pain. They put pumps in place and assured us that she was unaware of the noise and agitation but increased the medication anyway…They are worth their weight in gold.

#8

Hi I’m so sorry for the pain you are going through.
It is awful to see someone you love struggle so much.
My dad was receiving hospital at home and palliative care right up until the day before he passed.
He too was very agitated and in pain. The McMillan nurses and careers were fantastic and we also had a sitter at nights occasionally when we were too exhausted to cope.
The time came for him to go into Thorpe Hall it was the hardest decision we had to make as we wanted him at home.
It turns out it was the best decision for everyone
My dad was cared for by the fantastic nurses and made comfortable for the last hours of his life. He wasn’t distressed anymore, until the last few minutes which was horrendous but, that unfortunately is how end of life can be.
You and your family and the care team will know when and if the time is right for a hospice.
Thinking of you lovely xx

#9

Hi there,

I am so sorry for what you are going through.

I watched my Dad dying. The agitation stage I found so, so distressing. He kept trying to get up out of bed because he needed the toilet but he couldn’t stand. He kept trying to pull out his syringe drivers too. It is absolutely harrowing and my heart goes out to you. In fact I feel tight in the chest as I write this. I had to leave the room at times because I couldn’t bear to see him like it.

Thankfully my brother-in-law stayed overnight and kept calming him down and restraining him. My Mom couldn’t have managed and the nurses obviously hadn’t got the dose right, hence him trying to get up so much. My Mom had to call out a doctor (who was also so that useless that my Mom wanted knock her on the head!). I found it so distressing as no one had prepared us for this. I thought we would have a nurse with us 24/7 but at times we had to wait for up to three hours.

The second day he was mostly unconscious. We put on some nice calming music through YouTube, we dabbed his brow, spoke to him, changed his position. Told him how much we loved him. We held a vigil for him, taking it in turns to sit with him (there were about 10 of us altogether) I felt it necessary to have the breaks. I would go for a walk in the nearby park which I found soothing.

It was hugely difficult for my Mom and she didn’t get any sleep. On the second night of his dying we made use of a volunteer night watcher from the hospice, which my Mom really valued. The lady watched my Dad and called my Mom when his breathing changed, so Mom was able to be with him as he took his last breaths.

Be kind to yourself. Despite the trauma I am glad I was there for my Dad.
Sending you huge hugs xxxx