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If you wouldn't mind sharing, what are your experiences of end-of-life care?

(14 Posts)
Hexenbeast Wed 04-Nov-15 20:10:06

We are in this situation with my DDad after nearly a year from a diagnosis of advanced cancer.

I've done some reading (Macmillan etc) and have some idea of what might be in store, but reading other people's experiences would be helpful I think, even though I know every person is different.

Thanks to anyone who is kind enough to contribute. I've found similar threads very helpful on this board along the way.

MerylJane Wed 04-Nov-15 20:59:13

My mum died 7 years ago, she died in hospital, the nurses were amazing, my mums friend who was with me at the time died last year of lung cancer in a hospice. When people have cancer it changes their appearance and become very poorly, which can be hard to see past but try so hard whilst you can to make loads of memories and get lots of special photos. Don't give yourself a hard time if a day when you can't visit or visit for long. Your Dad wouldn't want you to spread yourself to thin, as long as you try your best to spend as much quality time with him as you can. Ask questions you don't know the answers too, about him, his childhood, his life, his parents, things he loved as a child, all the things only he could tell you about. Try, as hard as it may be, to celebrate his life when the time comes and ask about anything specific he would want to be apart of that goodbye. I wish I could tell you it was as simple as it reads. I don't know much but when these things happen, you seem to just go with the flow, sometimes it may even seem like it's not even happening, a dream you'll wake up from. I Wish you all the best, take care xxxx

catsrus Sun 08-Nov-15 07:35:49

If you have a local hospice, and it's possible to get referred to them, then I would really recommend that. My friend has just been referred to his local one as his cancer is now stage 4. They do respite, day care, hospice at home visits, alternative therapies like head massage, are helping him with end of live directives, finding a solicitor to revise his will, planning his funeral (which he's keen to do - I think we are in for sone interesting choice of music!). They have a 24/7 helpline for him, his family and friends for help and support, they have bereavement counselling that we will encourage his DC to access. And then they have the actual end of life care bit - he can go into the hospice rather than the hospital to die. He doesn't want to die at home because it's his kids home and he doesn't want them to have that association.

I always regret the way my dad died, in hospital on a ward he hated, waiting to go into a nursing home sad. My DM died in a nursing home where she was happy and it seemed peaceful. But I have to say the hospice is amazing, and such a wonderful cheerful place. I do wish I'd got my DM into there.

sarahbanshee Sun 08-Nov-15 08:11:27

My brother died of lung cancer km the Marsden in Surrey - we had hoped when the time came he would be able to be at home but he collapsed, went into hospital and was then too ill to be moved home. But the Marsden were wonderful. He didn't look that ill because the cancer had progressed so fast, and I found that hard because it was difficult to reconcile the fact that he was evidently dying soon with his fairly healthy appearance. The medical staff were very clear with us and with him what was happening without being brutal (but also not coy or euphemistic which he would have hated).

Morphine is a big feature of the final days and that can mean the dying person is a bit disoriented or confused - my brother a few times got concerned that he had the wrong morphine pump in and tried to get up or take it out. He couldn't really eat or drink much but he wanted to and kept falling asleep momentarily while being fed and then waking up complaining he was waiting for the next mouthful. All that can feel quite anxious as you want to do the right thing and you are not sure what that is.

Part of the body starting to shut down is that all the processes start to stop including digestion - my brother was concerned about being constipated and the nurses said they would deal with it if he got uncomfortable but not to worry if it just wasn't happening, it was normal.

Ask lots and lots of questions and don't be shy about asking again if you asked something and you can't remember the answer or you are wanting to check. Palliative care medics know their stuff but they also know you are going through this for the first time and they really want to make sure the patient and his or her family are supported.

My brother dying was the worst week of my life and I will not sugar coat it, bits were truly harrowing, but I also have some lovely memories from those few days - sitting holding his hand and talking about happy times, how much we loved him and how brilliantly he had lived his life. Reading him messages from Facebook from friends all over the world sending him love. Telling him we were proud of how he had fought his illness but that it was ok to let go now.

VocationalGoat Sun 08-Nov-15 08:27:45

Your GP can refer dad to palliative care which I've been through with dad and uncle in the States, not here in the UK. But my hubby is a GP and of course refers to this service frequently.

I think the wonderful thing about modern medicine is that the physical discomfort of the body shutting down is so incredibly well managed from a medical point of view. Kidney failure is supposed to be one of the most painful deaths. But my dad was managed beautifully. And as sarah mentioned, morphine is a big feature. I'm all for morphine. It's not really about having a big lovey dovey connection at the end. I had a whole lifetime to tell dad I loved him. At the end, it wasn't about my reconciliations but his comfort, his sense of calm, and peace in his dying days. And morphine sort of puts the patient out to pasture mentally, but as a family member standing on the sidelines, I'd much rather my loved one wasn't suffering. Anything like nausea, constipation, swelling, any symptoms of discomfort associated with illness are managed by staff. At home it is harder to have medication administered. Community care is slim on the ground and the home help is not as readily available as your dad might need. So my advice would be to have him taken to a hospice (when he needs morphine, he'll get morphine- at home this can be trickier and a lot of the management falls on family. This is too hard, too draining, in my humble opinion. It is more stressful).

I consider palliative care nurses midwives to the dying. They are an amazing bunch.
Talk to dad's GP. They're more than happy to talk with family members. And ask the hard questions re: hospice care vs. home care. Have GP tell you clearly how medication and pain relief is realistically managed at home vs. hospice. My DH practices out of West London- a high demand area where home care is not ideal. But if you're in a queiter part of the country with access to good resources, then home care may be suitable for your dad. But your GP can help guide you. flowers

Hexenbeast Sun 08-Nov-15 12:47:37

I have my own experience to add to the thread now.

Dad went into hospital with malignant bowel obstruction, caused by his bladder cancer having grown and spread into his bones and liver. He had increasing problems with his bowel and finally it was completely blocked. He was also experiencing confusion and pain so he was blue-lighted into the local hospital.

They treated him for a few days with IVs and antibiotics, hoping the blockage could resume even temporarily (a very distressing time as Dad was nil by mouth and not allowed anything for a few days, which is the treatment advised, but meant he was confused and couldn't understand why noone would give him a drink) but it wouldn't resolve.

A scan showed that there was no chance of an improvement and a fabulous consultant gave us lots of his time to speak with us and answer any questions.

They told us there was no further active treatment that could be given. Fluids and medications were stopped, but they also relaxed the nil by mouth and Dad finally got the water (and tea!) that he wanted to drink. That and having a syringe driver fitted meant he was more comfortable.

He was confused and found it hard to speak, although he could acknowledge things that were said to him. We put a cd player in the private room they'd put him in and he was smiling and mouthing the words of the song. smile They gave the option of going to the hospice, where he'd been having respite care weekly, but the fuss and trauma of moving him around just didn't seem worth it. His stomach was huge from the tumour and the blockage by now and he wasn't comfortable being moved. Plus, the treatment on the ward was fabulous. They suspended the visiting time rules for us and he could have as many visitors as wanted to come in, at any time and for however long they wanted. I visited three times a day, spending a couple of hours or more there at a time.

We were given the timescale of 'hours to days' but we were told that they didn't know exactly how things would progress.

There were a couple of days where Dad seemed to be less responsive and more confused each time we visited. Then, on Friday, when we arrived expecting him to be worse, he seemed a touch better. He was more alert and could respond more. We had a few short conversations and he smiled, agreed, gave thumbs up etc to things that were said. It was lovely, but very confusing as we knew there were no miracles to be had, yet he seemed marginally better in himself. He had a few visitors and it was a 'good day'.

On Saturday, however, he'd dipped back down and was struggling to try and speak, but not being able to. He seemed a bit aggitated, and had a little pain, which they gave him something for. On normal visits, after having the extra pain relief he'd sleep and we'd leave him, but he didn't seem to settle. We stayed an extra hour, then thought that maybe us being there was stopping him being able to settle. So we said goodnight, told him to got some rest and gave him a kiss goodbye.

2 hours later, the hospital called and told us he was deteriorating and that we should go in. By the time we arrived, he'd already passed away.
We were able to go and see him if we wanted and the staff were respectful and kind.

We had definitely got to the point that we didn't want to see him suffering. It was the longest week of my life, but I view it as a priviledge to be able to have sat with Dad and given him love and support in his difficult time. He's not in pain now.

The cancer, especially where it was sited, gave him discomfort, indignity and pain for nearly a year from the initial diagnosis. He couldn't really come to terms with his situation despite having respite care at the hospice weekly and seeing their councillors. He'd been told he had 'months' back in June. That was revised quickly by the consultant to 'months to a year' when Dad was so shocked by the news. I wish he'd never known as he was so depressed by it all, but he did manage to get some things accomplished that he otherwise wouldn't. He didn't wait to be 'well' to go and see his friends and we had some lovely family meals and occasions during the year.

sarahbanshee Sun 08-Nov-15 22:59:32

I'm sorry for your loss Hexenbeast.

HappenstanceMarmite Sun 08-Nov-15 23:09:22

I'm sorry for your loss Hexenbeast

I consider palliative care nurses midwives to the dying.

What a lovely way of describing them. Very appropriate too.

blossom95 Sun 08-Nov-15 23:40:21

My thoughts are with you. Thank you for sharing the story of your final days with your father, hexenbeast. I found that reading accounts of end of life experiences were a great help to me when my mother was dying. Thinking of all who have been through this, or who are going through it now. It's so hard, but I agree with you that it is an enormous privilege to be able to support your loved one at the end of their life.

Themodernuriahheep Sun 08-Nov-15 23:54:27

DM died at home, as she wished. We were there. The nurses were amazing. They didn't quite get there in time at the end so she was in a little more pain than she might have been, my fault.

The choices for her were home, hospice, nursing home or hospital.

Derbyshire nhs or possibly ashgate hospice has an excellent leaflet on what happens.

Ludoole Mon 09-Nov-15 00:23:07

So sorry for your loss Hexenbeast
My husband is currently on hospice at home and wants to die at home.
Thank you for starting this thread.

Procrastinatingpeacock Mon 09-Nov-15 14:07:34

Hexenbeast I am sorry for your loss. I agree about the privilege of being able to support a loved one at the end of their life and I hope you can take comfort from the fact that your dad would have known he was so loved.
Thought I would add my experience to the thread in case it helps others who may read it. My mum died earlier this year after a long decline from advanced cancer. She wanted to die at home and was able to do so peacefully with the help of our amazing GP, district nurses and, in the last few days, hospice at home nurses. About ten days before she died she started sleeping most of the time. A couple of days beforehand she seemed somewhat confused and distressed when she woke, and her breathing became very laboured. At this stage the GP, with our consent, upped her painkillers and sedated her. She died about 36 hours later.

The hospice at home nurses carried out her personal care in her last few days and, as they arrived just after she died, they arranged her body and cleaned her. This was nice as some family who hadn't been present at her death came to see her before the undertakers arrived.

Midwives to the dying is a lovely phrase. I will always be grateful to the nurses who looked after my mum in her final days.

whatisforteamum Tue 10-Nov-15 10:00:53

Reading with interest as Dad has had a few bad infections,lost 2 stone had a fainting spell and been unable to stand/walk due to advanced cancer in his pelvic area and spine.Sometimes i think this must be it then i heard for the first time in weeks he went to the shop (drove as he cant walk far).He plans on dying at home and has hospice nurses.Sorry again for all your losses.flowers

candykane25 Fri 13-Nov-15 00:19:37

My dad died 14mths ago, he had bowel cancer. It was one year after diagnosis.
He had Hospice at Home which was arranged by MacMillan. My dad was clear he wanted to die at home. A couple of weeks before he died he had a crisis and dr who visited him at home wanted to call an ambulance but my dad refused because he knew at that point, if he was admitted, he wouldn't be let out again.
In the last two weeks he became bed bound and needed 24hr care. Macmillan arranged for 2 carers to come four times a day to carry out personal care tasks but of course, although they were fantastic, the rest fell to me, my mum and my sister. My sis and I took turns to stay overnight and we did everything. That included feeding him and toileting him. I wouldn't change it for the world but of course it was traumatic.
Macmillan requested a hospital bed for him but it came too late so he did suffer from pressure point pain.
He was on OraMorph until he couldn't swallow and then on a morphine drip. This drip was delayed due to availability of on call nurses. So staying at home does have some drawbacks but it was right for us.
I think it helped my dad and us that we were honestly informed along the way what was happening to his body and what to expect next. It took the fear away.
God bless you and anyone else going through this. It's the hardest thing. I am proud of how we handled it together, as a family.

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