Please have an upfront conversation with me about FIL lung cancer- final days fo life?

[allthegearnoidea]

Hi,
just got back from seeing FIL, has lung cancer, spread all over, no more treatment to be offered except pain relief...Big blaaah message trying to make sense of it all, lots of gory details really would appreciate people's experience of seeing people with end satge cancer

So angry, he is at home with 3 children, his wife is unable to care for him but will not admit to this, it's an awful situation she wants him to be at home and thinks that he will perk up, he has MacMillan nurses going back in tomorrow who have already discussed now is the time to go in to a hsopice though I don;t believe she will agree...

I can't imagine how she feels but the situation is seriously grave, he is in a terrible condition and the kids are watching their dad die in fromt of them..what do I do, he's a vulnerable adult, it wouldn't be ok for a child to suffer in this way- would be child protection.

Just trying to make sense of it all, first person I have seen with cancer this advanced and just trying to prepare for the end as best I can, is this the end? Please be honest with your experiences of the final days.

I'm pretty sure that he is dying- sleeps most of time, laboured breathing, has momnets of being awake but not able to 'keep up' with what's being said, I think auditry hallucinations, shakes, not at all interested in food, sick if swallows anything, hugely swollen feet/ ankles, pale white skin, he looks dead but is alive, no strength at all.

thank you, I'm sorry of this has been upsetting for anyone, such a harrowing experience really need some support x

How old are the children? Is there a hospice in your area, if there is contact them they will be able to help. I worked in one for some time and they offered palliative care for the final two weeks of someone's life.
It may be causing you upset, but, if it is his wish and that of his families that he dies at home, you must respect that.
The hallucinations are quite likely coming from the drugs he is being given. If they are disturbing him, you could always advise him and family to speak to palliative care doctor.
Good luck.

Sorry, I've just seen that a hospice is involved in his care. Use them, that is what they are there for. The one I worked in had a multi disciplinary team, so included social workers and psychiatrists.

I can only offer my memories of my Dad dying at home many years ago from the same godawful disease.

Towards the end he too slept most of the time, he stopped eating or taking fluids the last day or so too.

In a strange way his death was quite peaceful after being in so much pain and discomfort the week before he had a little "perk up" and was able to speak to his family and interact with them in the few days before he died.

In one conversation I recall my mum asked how he was feeling and he replied "pet I'm buggered, but I've had a good day"

When the end came his family were with him, sitting on or around his bed, I held his hand and my gran, his mum, stroked his face.

He took longer and longer to breathe in til finally the last breath never happened.

I was 19 and I treasure my last days with him that I would never have had if he'd been in a hospital or hospice.

Think it all depends on how old the children are really. But agree if it is his wish to be at home, then he should be.

Both my parents died of cancer. It does sound very similar to the end stage. I found the nurses/doctors will not say how long, just in case they're wrong. I remember the laboured breathing very well, and very rattley breathing too. Slipping in and out of consciousness but mostly unconscious. It can go on for days. My mum suddenly woke up before she died, she appeared very well, ate and drank things for an hour or so.

It's a difficult one, it was very distressing at the age of 20 for me. But at the same time, I was glad I was there and would have hated to be kept away. Of course, young children are a different matter I think.

Hi, thanks for getting back to me,
I don't think that he ever 'chose' to die at home, I don't think that he has received adequate support at home, it has all just rapidly declined, he is not washed, no toiletting provisions at all arranged etc. His children are 5, 10, 15, 18. The youngest 2 I don't think fully understand the extent of his illness or what it means,the oldest 2 do. FIL is propped up on the sofa, in filthy bedding, slumps forward as can't maintain that position, his wife is doing her best, but really isn't coping and she is terrified that peopple will 'take him away'. This isn't me being judgemental about their choices, it's my concerns about all of their welfare. They live 5 hours away and DH's family are today sorting out care etc, all be it from the other end of the country. I was just so shicked and angry to see a person in that condition, I was prepared for the cancer, just not the poor welfare/ loss of dignity etc. It's so hard for all involved

My mum died at home from lung cancer when I was 17. My siblings were 15, 13 and 11. It was an horrific situation and I have suffered from PTSD as a result.
It was a slow and painful death, my mum spent three months bed bound and shrunk to a skeleton before our eyes.
It was before hospice care tbh so had a daily visit from district nurses in the last couple of weeks.
In the last couple of days mum was unconscious and that was a relief tbh.
I would offer care for the children tbh if MIL is determined to keep FIL at home so as to take off the pressure somewhat and to protect the children.

Sounds to me as if he needs a lot of support. Why would his wife think he was being taken away? In the hospice I worked at, there was no visiting times and families were encouraged to take part in the care of their relative/friend if both parties felt comfortable with it.
If the Macmillan nurses can't help, the 'ordinary' distric nurses can. They can provide support with bathing along with medication etc.
He is very lucky to have a DIL like you.

thank you again, everyone. Can you explain role of MacMillan nurses vs district? Ie are MacM 'invited' in up to family/ carers or a usual part of home care? Are Distrcit nurses bound to come in?

thanks asdx2. unfortunately I live 5 hrs away from FIL family so not able to look after his children :( Kids are all looking after eachother, their Mum is spread so thinly. Kreecher- I don't exactly understand his wife's fears, she I think would think that she has failed him if anyone else looked after him, she is very proud and they are also a very co-dependant couple, don't the prospect of not having him there is terrifying for her.

That's what we did whilst Dad cared for mum but if I'm honest we needed caring for too. We were frightened by what we saw and heard and also what was going to happen and when. Dad was very good at caring for mum but he was overwhelmed by it all and was trying to cope with what was happening and what was going to happen when she had gone. He worked away a lot and had never done the child rearing you see.
Try and get MIL to get support for the children if she can't be there for them herself.

When my Dad was dying at home we were able to access " Hospice at Home " They were truly wonderful.They arranged hospital bed with air mattress and gave me 2 overnight nurses so I was able to sleep twice a week. Please contact the local hospice and see if they are able to offer any support at home.
Together with the district nurses we felt cocooned and cared for.

I wish your family peace.

Macmillan or the oncology social workers can sort out a care package within the home which may help.
As for the children being around, my three children were around when my DH was dying altho they were at school when he died, they saw him getting weaker but he was in a coma for the last week so they just thought he was asleep and it didn't worry them too much.
You will know when it's near the end as the breathing changes and also as the body starts to stop working they stop urinating and stuff.
I think you have to respect their wishes about him being at home, my DH wanted to be at home and although it was difficult in some ways it meant that the kids could see there dad whenever they wanted to for as long as they wanted to.
We got full time carer in for the last few weeks which helped a lot.

Its so hard isn't it. I would encourage your MIL to speak to both district and Macmillan nurses.

District nurses can be accessed via your FILs GP and will have a 24 hour contact line. Usually they will have a palliative care lead in each District nurse team. Macmillan can be contacted directly and are usually linked to a hospice. They are invaluable for advice, and very practical support.

Can you or your DH take your MIL aside and explain that she doesn't have to cope all on her own?

I have seen it time and again when families feel they have to cope and won't ask for help as they see it as some kind of failure (I'm a GP by the way) If it is your FIL wish he dies at home then there is so much that can be done to help, practically with basic personal hygiene ie bathing,mouth care and also with medications to relieve pain and any distress he may be in.

All palliative care teams will have a care of the dying pathway,which can be implemented for the final stages. I think also Marie Curie nurses can offer help with night sitting so your MIL can get some sleep.

There is also a form DS1500 which can be completed by the GP which allows speedy access to any attendance allowance or disability benefit they may be entitled to, I suspect this may have already been done though.

Sometimes situations reach crisis point and people end up being admitted as an emergency into hospital which I'm sure is the last thing your FILs family want, so contacting the relevant professionals before this stage is reached is a really good idea.

The idea of going into a hospice can be very frightening for relatives of the terminally ill but they are friendly, welcoming, very supportive places.

I hope that this is of some help to you.

Hi, this is desperately sad, especially when the children are so young.

My father died of lung cancer, in a Marie Curie hspice as my mother had dementia. The hospice staff were just wonderful and made the whole end of life much easier for me to cope with. They were matter of fact but understood what I and my brothers were going through. They explained very well the balancing of the morphine and the state of awareness - or otherwise - my father could be in.

If his wife is not coping I'd really recommend hospice care from my experience.

I am pretty sure my dad was glad to be in this setting too, as there was no alternative. The last week was very much the in and out of consciousness, laboured breatheing at times, very very weak, but despite all this it was caring and dignified and I will always be very grateful to the Marie Curie home and staff.

Sending all good wishes to you during this difficult time.

could you and hubby try to be there to talk with MIL and the MacMillan nurse,they are really good and would advise what is best but also respect any decision the family takes but remember it is also your FILs decision and maybe he would rather be in a hospice.We would all like to die at home but it is'nt always possible.The care my husband and I got from them was terrific and after hubby died they still kept in touch with me and offered grief counciling etc.

It does sound as though he is in the final couple of weeks if not days.

There are stages of dying: Pre-active and active, if you want to google there are some lists of things that often happen when these are going on.

The hallucinating, seeing things or people in the room which are not present, saying things that make no sense, not wanting to eat (don't force it), cold extremities, being swollen and laboured breathing all sound very much end stage.

I doubt he will be with you for very much longer fwiw. Sorry

Also I don't know if it's been suggested but Hospice often have an outreach team so they will come to him rather than him having to go to the Hospice, iyswim. This can be really helpful and he can still pass away at home.

Having worked in nursing homes as a care assistant, every time I've helped nurse people until the end, I've found the following happens:
In the last days their bowels release right up until they pass away.
I've noticed in the last hours too, is a purple-bluish, cold, mottled effect creeping up the person's legs until it gets to the trunk of the body.

The timing between each intake of breath becomes longer, more laboured and more shallow.

The most dignified thing IMO is to just keep them clean, mouth clean and moistened and be there at their bedside as much as possible. Your FIL's GP surgery should arrange for a community nurse to administer pain relief and a community care worker could carry out the personal hygiene, if your FIL wants to be at home.

Please look at this thread in bereavement.

here

A hospice cares for the whole family and all the stress of nursing is taken care of leaving you to spend the time with your loved one.
My father died recently in a hospice and I cannot speak highly enough of it. It is nothing like a hospital.

This may end up a bit garbled as it's all still very raw but we lost my nan last month to lung cancer. WE didn't know until late stage (believe she knew though before), she went into hospital on the Sunday and never came home, she died a week later in the early hours of the Monday morning. The care she received in the hospital was brilliant, she had her family with her around the clock (all 5 of her children were at her bedside when she died and all 18 grandchildren said their goodbyes a day or so before). She had good days (where she seemed just like the nan we all knew and loved) and bad days where she appeared vacant/already gone. She started to turn a mottled/purple colour around her ankles/wrists and had a jaundice look about her. Her breathing was very shallow/laboured (she was on permanent oxygen) and she barely ate a thing, although about an hour before she passed away she sat up and asked for her pudding!. although she was in hospital her end was just like her life, very calm and dignified.

I hope your FIL passes peacefully when his time comes.

Very sad for you all.

So sorry you're experiencing this - it's a horrible horrible disease. I would, if you possibly can, try to convince your MIL that he would be better off in a hospice, or push for Mac/Marie Curie nurse overnight care to help her oiut at home. It sounds from your description as though he doesn't have long, tbh.

My dad died of lung cancer, with secondaries on his brain a few years ago. He was very resistant to the idea of going into a hospice, but my mother just wasn't able to cope with the care he needed at home (there had been a bit of a cock-up with the marie curie nurses, this might also be a solution). In the end he was in a hospice for the final two weeks, and it was the best decision for everyone, him in particular, I think. It was a lovely peaceful place and the staff were so amazing. I just can't praise the care enough. They were able to adjust his meds daily to make him as comfortable as possible, they had good beds that he could sit up in and you could visit any time. They also had overnight rooms so my mum could stay if she wanted to. In the end, his death was peacful and dignified, which is all one can hope for, really, at that stage.

wrt to the last days, my father had a stage of hallucinations and confusion, but these seemed to pass, and for the last couple of weeks he couldn't speak, or swallow solid food, but was able to understand what was going on very well, so we could read to him, and talk to him and just be with him, holding his hand.

Best wishes to all your family at such a difficult time.

My dad was in a hospice for 2 weeks then came home and died 2weeks later. Macmillan and Marie curie nursed helped my mum.... They are all angels those nurses. Hospices are lovely, warn places where people care. Why isn't there a cure for cancer!

thank you everyone for all the information and support.

I spoke to MacM nurses who were unaware how bad things had got at FILs.

By monday MacM had got him clean, changed, catheter in, arranged for a bed downstairs etc

Tues night syringe driver in with increased morphine.

Sadly FIL died early wed morning, I beleive the morphine enabled his body to calm and slow and he had a very peaceful end.

As awful as it sounds I am pleased he has died and it wasn't prolonged any further.

His funeral is on Thursday.

Thanks again everyone. Best wishes to you all

So Sorry to hear of your loss but totally understand the relief you feel too.

Hope your FIL has a good send off, thinking of you all.

sorry to hear about FIL but glad you at least got him a few days of comfort.You did your utmost and Iam sure he would have appreciated it.