Mil Terminal cancer no treatment - what’s next

[Edel12345]

Hi
sorry to be blunt in the title but I’m very practical. My poor MIL has terminal cancer Primary in bowel and secondary in liver and lungs. She is 80 so oncologist recommended no treatement.

we have had very little info and fall between two stools as she isn’t now under going treatment.

she is home with a walking frame as was very wobbly on her feet. In the last week she has started to sleep a lot and has zero appetite. She said she has some pain but nothing too much. She has no energy.

my poor husband doesn’t know if he is coming or going. Thankfully we have no prior experience of cancer but that means we have no idea Whats to come and if we need to start properly preparing our kids. One has some big exams coming up also.

I know every case is different but any information would be greatly appreciated. Are there stages that she will move through ?

thank you
E

A nurse friend explained that when they give you a rough timescale it's what fits 80% of patients so one on 5 will be shorter or longer. As well as that they become more susceptible to other conditions so the end may not be the cancer directly. FIL was told 12-18 months but died of sepsis 4 months later.

Oh OP so sorry. Echoing what others have said - talk.
Talk about your feelings and hug each other regularly.
If your MIL is up to it talk about funeral preferences. But not if it upsets her talk about it with other family members so you don't have to think about it in the rawness of grief.
Make sure you know where important paperwork is and contact details for her friends and anyone else you will need to contact.
Every decision or task you can take away from those first few painful weeks will be a weight removed. Family and friends aren't always reasonable in the first throes of grief so make allowances for others and remember apologise when it's you.

My MIL had a very similar diagnosis some years ago. We predicted 3 months from diagnosis to death, which it was - almost to the day.
Make sure you know how she wants to be cared for, whether that is in a hospital, hospice or at home. Start putting plans in place accordingly.
Get a DNR order in place - she really doesn't need the pain of broken ribs in a futile attempt at resuscitation.
If she wishes to die at home, make full use of district nursing services, and also any appropriate charities. You can get a hospital bed delivered (I think from Red Cross?), which you will need.
Also if she is at home, make sure a GP pops in at least every 7 days, as it will thus make it a much easier process to obtain a death certificate - so important.

Know how to access her will, and also any funeral wishes she may have.
There is no point in trying to avoid any of this, so much better to be prepared.

I completely agree, it's very very hard at home.

Just popping in to say thinking of you.

For your DH - make sure he tells his employer as he may be able to take some time in his mum's final days to be with her rather than all after she is gone.

Other than that as others have said; if she's up to planning her funeral do that; spend as much time together as you can.

For some reason you came into my mind today, so thought you might appreciate some positive thoughts being sent in your direction. If you are able to get some flowers for you and your mil, they will give you both a little boost.

Just to add to the pragmatic list, friends will ask you what can they do, start making a list of things that they can do... like some shopping or washing sheets, it may sound petty but better they do it so you can sit with your mil, even if you say, "well if you could make me a cuppa whilst I sort mum out," they will be grateful as they will think that they, too are being practical.

Hi
just wanted to update I guess to see if any more experiences

MIL in now in a hospice the last few weeks She is a fall risk so can’t be home It really is a lovely place and she is ‘happy’ there It’s starting to sink in with her that she won’t be going home which is heartbreaking I can’t imagine it We visit every day so she always has visitors. We bring the kids a bit. It’s sinking in for them too :-(. My heart breaks for them it really does as they are just so so close.

her memory is now totally shot .. not sure if it’s the cancer or what. No concept of time, days of week, time of day Something that happened an hour would be 3 days ago to her.

she is starting to sleep more Eyes closing when talking to her She is eating but not a lot. She is being lifted out of the bed less and less as energy not good. Pain seems to be under control with morphine drip. They are moving back to oral morphine today as I think she doesn’t like the drip Sje has a catheter also

doctor had said to me when she was admitted 3 weeks ago that were looking at weeks not months. I just wonder where we are in this terrible journey… I know no one can tell exactly but just trying to figure as we have holidays booked end month (we can cancel at last minute and seen telling kids might not happen) and a work trip abroad a few weeks after.

Thanks for listening It’s a lonely road this

Hospice care is amazing.
I hope she continues to be comfortable and you can all keep talking honestly and openly as a family xx

My dear OP, just seen your latest update, if it does not seem odd, I am glad that you have been able to get your mum into a hospice, the quality of death is usually much kinder there, along with the expertise of pain relief. My sister managed just part of one day in the hospice when she died, but their kindness to our family was amazing.

What I am going to write next may sound odd, give your mil permission to go either by saying to her directly that if she wants to slip away, she can. Often you will see patients hanging on because they think they must, when in truth, much as the family want to hold on to them, they do not want them to be in pain. If you cannot face that, then occasionally leave her alone for five mins, so if she wants to go when you are not there, then she can leave under her own choice.

Finally, make sure you and your family take time to breathe, this part of your life is so intense, cry if you need to, but more importantly sleep and eat. Doubtless she would be the first to offer a cup of tea and slice of cake...

Our hospice will only accept patients if they consider they are in the last 14 days of their life. I suspect this is where they think you are. It may even have happened but I'd expect eating and drinking to cease in week before.

I think death timelines are difficult to predict because something unexpected can come and speed things along (existing weakness or illness exacerbated by poor health). But equally some people have a physical constitution which seems indomitable.

My mother lasted months stuck in bed with no food and sips of water (7 months after a 'very close now'). I'd reached the point of thinking she'd live forever and without obvious signs she went. My sister died within weeks of cancer diagnosis. The end seemed to take forever...I anticipated the last day for a fortnight.

I remember important dates, holidays etc and the worry about what to do. I'd ask yourself how you'd feel if you were away and she died (your answer is OK whatever it is). If she died would you still go? Personally I'd expect to go but plan to need to cancel.

Look after each other. This is exhausting physically and emotionally.

I just wanted to come back and thank
everyone. MIL has been with us all
this time thankfully. The hospice staff are amazing. However she has entered the final
phase. She isn’t awake, not eating or drinking last few days. Breathing slowing down. She does open her eyes and odd time but they are rolling and not focusing.

it’s tough on my husband as he is on his own and can’t be there 24/7. The staff have said it’s not imminent yet as she is very strong but will be days if not less.

our kids have said good bye. Our eldest is 16 and wants to be with granny all the time. I think she wants to be there when granny passes if possible. I’m not so sure as it’s such a traumatic thing. What do others think? I know it might happen when she is there anyway but should I discourage it or just leave to her. I guess my worry is it’s not something you can unsee and worry it will impact her too …

@Edel12345 its not always traumatic at the end, this can depend on a number of factors. Talk to the hospice about what might happen.

For my parent they were in their bed and gave a gasp, we rushed in from the next room and over a few minutes they faded away. I was glad I was there, but it’s a very personal choice.

I am sorry you are going through this.

Being all together as my mother passed was a really powerful experience and one I will always remember with gratitude. I think you have a younger child as well? What would happen with them?

I was there when my grandfather died he too had cancer. It was very peaceful. I held his hand, kept talking to him. He gave a soft gasp, a rattle and then he was gone.
I'm aware it's not always that peaceful, but I think if your dd wants to be there she should be if at all possible. It meant the world to me.

If you have a local hospice, or a Maggies cancer centre, do please contact them for help and advice.

You'll also need a relative to contact her GP to discuss pain relief when needed.

You will probably see her less mobile, eating even less, sleeping more and just gently withdraw from you.

Our eldest is 16 and wants to be with granny all the time. I think she wants to be there when granny passes if possible. I’m not so sure as it’s such a traumatic thing.

To be present at a loved person's gentle, peaceful death can be a deeply calm and comforting experience to those left behind.. Not at all traumatic.

Although neither of mine wanted to be there right at the end (16 + 17), they both said their goodbyes just before she entered the final few days. The trouble is that nobody really knows how traumatic the end will be, although thankfully my mother had an extremely calm and peaceful passing, i'm not sure that i would have wanted either of mine to have been there if it had been any different to that. It's a tough call.

Thinking of you all x

One of the practical things I did was open a window when my sister was on her way, and I told her it was open so she could leave through it, if she wanted... As to your DD wanting to be there, that is her decision and frankly your MiL has her pain controlled so will probably slip away of her own accord, but warn her about one of the post death practicalities that once she has breathed her last breath about 30 - 60 secs later there will be a big breath as the air in the lungs exhales and sometimes it can seem as though they are not really dead, which can be a little shocking if you have not experienced it before.

My thoughts are with you and your family during this very challenging time but I wanted to tell you that you are being a great DiL supporting her and your husband.

If your DD’s way of coping is to want to be with her granny as often as her own life allows, I wouldn’t stop or discourage her from doing so. I think it will help her with her grief.

As others have said, it may not be traumatic.

DH's passing wasn't traumatic, he'd been unsettled in the hours beforehand but once the hospices nurses came out (he wanted to die at home), gave him some meds and changed the doses in his syringe driver he was really peaceful. Early the next morning he opened his eyes and reached out a hand to me then just slipped away. My dad's passing in the hospice was equally as peaceful, he waited until my mum stepped out for a few minutes then just took one last breath and went. Speak to the hospice staff, they will be able to advise you.

Thanks so much
I will leave it to her and if she asks will just discuss with her It breaking my heart knowing the grief that will follow for all of us

my husband is gone to visit with her now I’m here at home with my younger child who does not want to be there.

thanks again everyone … I just wish for to have a peaceful passing with my Dh there as a minimum so she isn’t alone

I think if your 16yo wants to be there then let her but just warn her it could be upsetting. My dad was really gasping for breath at the end and it looked like he’d stopped breathing /died several times over the space of a few hours before he actually did so was very emotional.

I wouldn’t want my child there at the end of life. It can be fucking horrifying at the end. Especially with cancer in lungs. The small. The gasping for breath. It’s hard to watch. Also. Palliative care nurses have often said that people wait until they’re alone to go. If your child is waiting to be there and “just misses it” it could be very traumatic. The children in my family were kept away at the end of life for my dad and gran plus aunts etc. we said that their mind had gone but they had such a strong heart it’s just didn’t know when to stop going so their body was still acting alive. Good luck OP. and from a boring pov get at least half a dozen copies of the death certificate when you register. You’ll need quite a lot.

I'm so sorry.

It sounds like she has good care and is well loved and looked after. She will have known that. Obviously who knows what she is aware of currently.

I found this podcast really helpful when my mum was dying. She was fortunate enough to have a peaceful death from pancreatic cancer.

podcasts.apple.com/lu/podcast/what-to-expect-when-someone-dies-with-dr-kathryn-mannix/id1567190358?i=1000524036065

I wish your mil a peaceful passing. And I hope you all find much comfort from each other.