I'm a palliative care nurse

[alwaysgotyou]

I'm a specialist palliative care nurse with over 15 years experience in hospice inpatient units and in the community, working for charities and within the NHS.
Ask me anything.
NC for this, but been on MN since 2011.

I'm so glad to hear this, it is a privilege and a joy to do my job every day.
Sending so much love to you and your family ❤️

NC for this, relatives might be reading... no one to talk to IRL.

I am the main caregiver for my spouse, who is home from the hospital, with stage 4 lung cancer. She has only a few months to live, and is very accepting of "letting nature take its course".

She claims no pain, no nausea, but unfortunately has developed a really bad temper. With me, anyway, and I feel totally unappreciated, and even bullied most of the time.

Is ill temper a common feature of terminally ill patients?

I've had two personal experiences of this. My question above stemmed from it. If someone has lived with bitterness & regret I guess it multiplies as they face death. It's really hard on the caregiver who they are closest to and take it out on. I feel for you. You want to make & have good memories but it's almost impossible.

Not necessarily, but I think generally if you've not been a nice person in your life that doesn't magically change when you're dying.

Firstly, thank you for the work you do.,

One thing that I'd ask if a palliative team is to let relatives know that the rapid, noisy breathing that happens when starting to die can last a few days, it's not just the final "death rattle" right at the end. It can be distressing. It was distressing.

It's only ten months since mum died in hospital from a necrotising tumour that should have been picked up over a year ago. Still very raw. My big sis and I were with her at the end, although mum chose the fifteen minute window that we were asleep to finally go. I miss her so much.

My mum died last year at home under the care of the hospice palliative care team. The team did a fantastic job managing her death, making it painless for her. Thank you for all that you do.

Alwaysgotyou my mum was exactly the same, it was really hurtful and took me by surprise. She actually had a miraculous recovery and is three years on from a terminal diagnosis of weeks to live... but her behaviour in her 'last weeks' was a horrible realisation that's she's not very nice. When I feel kind I put what she said down to fear and impact on her brain but I largely now keep my distance as thankfully she moved out of my house.

When a person is dying, do you often get asked why they have to go through the ‘process’ however long that might take? And are relatives surprised that it can take a while to actually die?

When someone dies, do you have to open the window to let their souls out?

Firstly, can I say how valuable what you do is. Not just at the dying stage, but helping people to live whilst they still can. And treating us like actual people rather than just a collection of symptoms to be managed.

I have a terminal cancer diagnosis and probably only a few months to live. My children are 15 and 18. I am conscious of the need to "put my affairs in order". But aside from the obvious admin type stuff I am wondering if you have come across any "nice" things your patients have planned for those they leave behind?

What do you want for your own death. Are you afraid of it?

My dad died of cancer. He was in hospital about 3 or 4 days. I visited him each day but not for hours on end. He didn't want any visitors, he just wanted to be left alone to day. Because we knew he was going to die we had all chatted about it beforehand. He was calm. He made it clear to the staff to give him as many drugs as possible and he seemed to die quietly and peacefully.

Apart from me and my sibling coming to see him no one else did including my Mum.

I genuinely believe this low key way of him dying was right for him and for our family but it seems so different to other families where everyone gathers together around the person dying.
Was our way really unusual? We don't regret it at all.

The palliative care nurses were lovely. One cried when she was telling me that he might not have long to die. I thought that was very sweet of her but I felt bad because she was crying and I wasn't.

I always say the noise can be distressing for relatives sat at bedside, I always give medicine to try and get rid of it, but very often an not successful but your mum/dad/loved one is not aware of it... we can also gentle suction in the mouth to clear anything that builds up in cheeks and repositioning can also help.
I can totally understand why it's raw still.
Please reach out to the bereavement service where your mum was cared for if you feel you need some support 😘

Yes, very often. People are surprised that death is not linear and there are peaks and troughs. Also, generally speaking, people find it quite difficult that when the human body is dying it does not require food or fluid, so that often requires multiple times of explaining and we are asked about artificial fluids via IV lines etc and have to explain why these aren't appropriate during the end of life stage.

We generally do whatever the person wants us to do after death. Fortunately, we are able to have very frank conversations with most of our patients on how they want their after death care to be.

There is a very famous quote by Cecily Saunders who is the founder of the hospice movement and it is something that I have in my mind every single day.

"You matter because you are you. You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die."

I will also treat every single patient as I would want a member of my family to be treated, my job is a privilege and a joy.

I would say memory boxes, voice recordings, letters, videos and photographs. We also do thumbprints and castings at our hospice which are popular - hope this helps x

I want it to be pain free and of my own choosing, and if it's soon I want to have had time to prepare my husband and my small children as best I can, but no I'm not afraid. I accept that it's part of life and I'm not scared. I wouldn't want to die in a hospital or at home, I would pick a hospice every single time.

Not at all unusual.
We see a wide range of family dynamics and patient wishes in the hospice and we are not their to judge. We do our best to ensure people are never alone when they die, but unfortunately it does sometimes happen and I am always honest with the relatives when I have found their loved one deceased.
We are not here to judge, you followed your dads wishes and that should be commended.
Sending you lots of love ❤️

Is it common for people to die when their relatives leave? My dad was called to see my granny and he sat with her all day and night. It looked like another false alarm so he went home to have a shower and she died as soon as he left. He feels terribly guilty about that but I like to think she was holding on whilst he was there with her.

How do you cope with the emotional strain of the job? What do you do to take care of yourself and relax?

I'm a retired nurse and some deaths have never left me. I found deaths very hard. We always spoke to the patient as though they were still alive as we washed and prepared them for the mortuary. I hated covering their face. It seemed so final. We always placed a flower on their wrapped bodies and I'd privately say a Hail Mary for them.

Very very common.
People sit for days and days and days then they'll pop for a wee or out for some air and their loved one will die.
Also, not uncommon for patient to "wait for" their relative to come from a long way away or a baby to be born or another big family occasion and then die a few hours after.

I have very very set boundaries.
I put my uniform on and go into "nurse mode" and when I take off I go back into "me mode" and take off and shake off all the grief and everyone else's agony that goes with the job, other wise I would drown in it. I very very rarely go to funerals, I stand in the rain sometimes I just scream about the unfairness of life for people I've cared for, but i try to let the good in the world fill me up, and I go on every day knowing I have this calling to make a difference, it's more than just a job to me, it's... everything. Every month I light a candle of those at home that I've cared for who have died in that month.
I count the blessings of my world each and every day and I live my life, spend my money, squeeze my children and laugh with them every day and cherish what I have, knowing it could all be taken in a second.

Thank you answering my question 😌

I have another more general question. I wanted to know if you find that people from different cultural backgrounds deal with their loved ones being in the hospice and dying very differently.

Op what do you say to people who are terminally ill, do you talk about the inevitable do you talk about the weather and dodge the subject like the elephant in the room?