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Life-limiting illness

DFIL is dying

15 replies

Keepittoyourself · 15/03/2016 18:41

My father in law is dying Sad he has lung cancer that hasn't responded to chemo or radiotherapy and has spread to the bones in his back. He has been given only a few weeks (he hasn't been told this because he said he didn't want to know but he knows he isn't going to get better) and has came to live with us because he cannot cope on his own anymore.
I am his main carer and also have two children to look after while Dp works away.
I feel like I am coping with having him here but I am scared of what is going to happen in his final days, what happens if he dies and I am here on my own with him and the children? How do I make the arrangements without them being scared? Who do I ring? He has a DNR but do I still ring the ambulance?
I want to have him here so I can look after him and make his final days/weeks as comfortable as possible but I can't say I am comfortable with the thought of someone dying in my house (I hope that doesn't make me sound like a horrible person)

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pilates · 15/03/2016 18:52

Sorry no advice, but just wanted to say what a lovely person you are.

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Nowwhatisit · 15/03/2016 18:58

Wow, I really admire you.
You should be getting support at home, palliative care team, marie curie, macmillan nurses to help control his symptoms and suport you through the process. Do you go to appointments with him? I would ask his consultant or GP.
If he dies at home you call the GP to certify his death.
You are not horrible to have anxieties about it. I would try and chat to someone on your own, frankly to see what it all entails, he might be better in a hospice at the end?

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juneau · 15/03/2016 19:13

It sounds like you need hospice at home services OP. Ask his GP to refer you to Macmillan or the local hospice who can send someone out to visit you both and discuss how this is all going to go. They will be able to provide support in person and by way of pain relief, home adaptations, etc to make his final weeks as comfortable as possible. You can't do this alone OP. Its a lovely, kind thing you're doing, but please reach out. There are services out there for exactly this situation. Many people choose to die at home, but you need to be prepared for what will happen and you both need to be properly helped and supported.

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Keepittoyourself · 15/03/2016 19:16

The Gp comes to the house every 7-10 days and he has carers twice a day to help him get changed and have a shower/wash depending on how he is feeling.
I have spoken to the palliative care nurses on the phone a few times and they have been to the house twice and said that they will come regularly when he needs more care.
The McMillan nurse was really helpful in the hospital and said someone would come to see us but they haven't been yet.
What if the Gp is closed? Do I ring out of hours/ the district nurses? Will it be obvious when the time is near or could it just happen?

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Keepittoyourself · 15/03/2016 19:26

We have been to the hospice but he said he really wants to be at home. Obviously we don't know what will happen and the hospice was such a lovely calm place I think if he really needs to go in he would be happy to but would like to be here if he can.

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peppatax · 15/03/2016 19:27

No advice I am afraid but you sound lovely and this is a wonderful thing for you to do to care for someone this way Flowers

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Goingtobeawesome · 15/03/2016 19:30

I'm sorry you are going through all the worry of what to do while accepting you will lose your FIL. Can you ask any of the people involved in his care the answers to the questions and have you any friends who you could have on stand by should you need the children taken away immediately?

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originalmavis · 15/03/2016 19:36

I think most people don't die at home these days. Dad was wheeled back into hospital and I think they just kept him hanging in there until we managed to all get home. Chances are he will have a turn for the worse and have to go to the hospital and just slip away.

Do the children know and understand Make sure his doctor knows the situation - they are usually brilliant at end of days care.

Macmillans are wonderful, and we found the staff in the hospital ward where the terminal cases were (wont say what dad called it) were amazing people and helped us out so much.

You are an absolute star - it is an honour to care for someone at the end if their days. Hard but an honour.

Is there a priest or someone? Dad was an aethiest but loved debating with the (poor poor man) vicar. He even took communion.

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kansasmum · 15/03/2016 19:38

Ask GP to get hospice at home involved. They came to my dad when he was terminally ill and were fab. They really took the strain of me as I'm a nurse and found it hard not be his carer and just his daughter. The nurses certified my dads death at home when he died and GP provided death certificate a couple of days later.
Hospice nurses are amazing. Or call Macmillan direct ( sorry don't have the number) and they will advise.
I'm sorry you're going through this and think you're wonderful to care for your FiL. Thanks

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kansasmum · 15/03/2016 19:40


Need to talk?
Call us free*

0808 808 00 00
Monday - Friday 9am - 8pm

Not sure if link works but trying!
If link doesn't work number is 0808 808 0000

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Follyfoot · 15/03/2016 22:06

What a lovely lovely thing you are doing Flowers for all of you.

Second the Hospice at Home comments, you can ask to be referred. Also, Marie Curie Nurses/Helpers can be brilliant. They come and sit with the family member, especially overnight. As it turned out, the first night they came was the night my lovely Dad died. The nurse took care of everything, all the arrangments that you mention, and looked after all of us. Perhaps you could speak to them to see what support they might be able to offer.

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Procrastinatingpeacock · 16/03/2016 09:16

You are doing a very selfless thing but I would sound a note of caution about his final days. My mum died of advanced cancer last year and I would have found it extremely difficult to cope with the very end of her life whilst also caring singlehandedly for small children (I was lucky to have friends and family who were able to step in and provide some childcare). Do you have any support network around who could help you with the children when needed?

We were helped by hospice at home and they were great - both from a caring point of view but also because they were able to provide someone to stay overnight which was a great reassurance.

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Keepittoyourself · 16/03/2016 13:23

Thank you for all your lovely words. I can't imagine not having him here, he can't stay at his house and his care in the hospital left a lot to be desired.
I will look into the hospice at home thank you.
My parents live just down the road so I can call on them to come any time or the children can stay there if needed.

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Keepittoyourself · 14/04/2016 12:33

a little update:
FIL took a turn for the worse and was put onto a syringe driver as he couldn't take his medication. He was asleep all the time, his breathing was very slow and was crackling and bubbling. Everyone thought it was the end.
Somehow After a few days he started to improve a bit and was awake more each day but was complaining of a stomach ache and his stomach was very swollen. I requested that they put in a catheter because he had started drinking a little but wasn't passing and urine. The nurses did this and drained a huge amount.
turns out he had a UTI so he was prescribed antibiotics.
He was then taken off the syringe driver after making a drastic improvement. Over the last ten days he has been on three different types of antibiotics. He is in bed all the time has lost use of his arms and legs so we need to feed him (very small amounts) and give him drinks throughout the day (and night) he is unable to use the toilet so has a catheter and carers coming in three times a day to change him. He is such a proud man and it hurts to see his face every time the carers come and wash/change him.
It just feels like he is getting infection after infection and one day soon the antibiotics aren't going to work Sad it feels as if we/the Drs are just prolonging the inevitable and taking away every last bit of his dignity. What sort of a life is he having just lying in the bed hour after hour waiting to die? He has asked me a few times to just give him 'the final injection/medicine' Angry

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Keepittoyourself · 14/04/2016 12:34

I meant Sad not Angry although I am angry with this stupid illness and cruel suffering it makes people go through

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