Horrible topic but I need to ask

[hdtaw]

Hello all, We found out about two weeks ago that my nan (86) has stage four cancer, it's also spread to her bones and lymph nodes etc. They are not offering any treatment and she would like to die at home so we took her home from the hospital.

My mum and I have moved in with her because we don't want her to be alone (my grandad passed away two years ago) and in the first week she was up watching films with us, Eating three meals a day and drinking cups of tea etc and now she has gone downhill so fast, She has refused food for the last four days, and the only drink she will have is water when she has to take her meds, She is also choosing to stay in bed and is sleeping through the day and only really wakes up when we wake her to give her her medication, She has been this way for four days now. Its also getting harder to wake her up, as in we will say her name over and over and it takes a while for her to wake up.

Anyone with experience of looking after someone with this stage of cancer? How long is it likely to be now before she passes away? I know no answer is set in stone but if she hasn't eaten for four days I'm thinking she might be near?

I’m so sorry to hear about your Nan OP 💔 you and your mum are doing an amazing thing looking after her at home. Have you had any input from the district nursing team, or hospice/MacMillan nurse? If you haven’t I would phone your GP first thing and get referred, as they are a fantastic source of support not just for your Nan but for your whole family. They can help with things like symptom management so making sure your Nan doesn’t have any pain, but also emotional support too.
It’s often very difficult to say exactly how long someone may live after having a palliative diagnosis. Sometimes people can have an acute deterioration, other times it’s a slower deterioration over a longer period of time. Things like sleeping more, eating and drinking less or not at all, passing less urine etc are often signs of people deteriorating. You may notice your Nan becomes less easy to be roused, and may eventually no longer be rousable. This is where support from medical professionals is fantastic as they can help assess your Nan and can help alleviate any symptoms she may be experiencing. Sometimes as a person is approaching the end of their life, they may need some medication to help settle their breathing for example. The nurses can set up medication pumps called syringe drivers which provide a continuous dose of medications to keep your Nan settled and symptom free. Your Nan will know you are with her, so keep talking to her, hold her hand etc, and know you are doing an amazing thing in looking after her. Feel free to inbox me if you have any questions or want someone to talk to x

You should have help. You didn’t just take her home with no help in place? She needs an IV and she needs a more reliable method of pain relief. She wants to die at home but as peacefully as possible and it won’t be without the right support.

@hdtaw my mum passed from cancer... it's hard and I really feel for you and Ur family. My mum's last days she didn't eat much at all but did drink. At the end the best thing to do is to wet her mouth and lips. As long as she's not in pain and comfortable, that's the one thing that's important.xx

I hope you can get hospice in. This is the start. After my father stopped eating it was about 10 days. He was also sleeping probably 20 hours a day some days he wouldn't wake up at all. I'm very sorry OP.

Nothing else to add but just wanted to say you and your mum sound lovely. I hope when the times comes it is peaceful and as she wanted.

As you say it goes downhill and then you may have either a brief day or alertness and looks like will get better then they pass or you will one day soon not be able to wake and will be a day or so... just give water when awake and don't force food or even worry aviut it if not asking or wanted.
You may also find there's a few accidents towards the end so make sure you have pads towels etc to hand... and can clean up quickly easily with little distress to patient as possible. They don't even know it's happening.
Keep on top of pain meds as this is most important x

Sleeping is good as it means pain isn't waking her. If you have a hospice nearby they might well offer an outreach service. These are often excellent.

Please contact MacMillian who will support you. In the meantime try to ensure she has some water, either in a cup if she can manage it or by sponging her mouth. It won’t be long, but water will make her more comfortable. So sorry that you are doing this.

Can I just ask what medications she is still taking? Because a lot of regular medications such as blood thinners or blood pressure medication are no longer required once somebody is on End of Life Care and she may be at risk of choking if not fully awake. Worth discussing with the doctor.

Sounds like Nan is entering her last days.

It might be worth calling a local hospice or even the hospital and talking to someone. They may be able to offer support or even just an understanding shoulder. If nothing else there is a YouTube channel by a hospice nurse and she tells it like it is. Wish I'd seen her before Dad went.

Sending love and hugs xxx Be guided by your Nan as the body knows what it's doing. ( As long as she isn't in pain.)

Thanks everyone. District nurses are coming out tomorrow, there is a Marie curie nurse there tonight to give me and my mum a night off, she is on morphiene tablets which last 12 hours and also the spray version, its been increased this last week.

I'm sorry for anyone else that has been though or is going through this, It's bloody horrible and I have found myself wishing that she will just let go as seeing her suffer so much is killing us.

Sending hugs @hdtaw Very hard for you. The morphine will make her very sleepy.

Have the hospice team been involved and is your Nan pain free. Pain relief is the main priority because bone cancer is very difficult to manage.
Your Nan is so lucky to have you caring for her . Sending love and best wishes to you and your Nan 💕💕😞💕💕
sorry just seen your update and am glad she is comfortable 😘

You are a superstar. You're doing a wonderful thing for your gran.

I'm glad you have other support too.

You and your mum need to remember to take care of yourselves too. 💐

Just wanted to send you a hug. Hope you have got some outside support, either district nurses/Macmillan. Agree with the wetting the lips with a sponge or flannle. You and your Mum are doing a truly lovely thing. Are there any other family members around/close friends who can help to get your anything practical that you might need or to help you sit it out so you can get a bit of rest. Only saying this cause as others have said, you're never sure how long this stage is going to go on for. When my Dad was at end of life, it was only 24 hours, but some people go on for weeks or even months. Take care x

Also agree about the syringe driver. My friend's Mum had bone cancer and I know that helped a lot during her final days.

So sorry you are going through this but its a blessing she is at home. Reaching end of life in your own bed, with privacy with your family rather than on a busy hospital ward with no privacy is a great blessing.

As others have said, prolonged sleeping is part of the progress towards death. Sleep gets longer and longer until they are virtually unconscious all the time but can still hear you - so keep talking and hold her hand if she likes that.

People can, generally, live without food for a long time. Shorter without fluid. Like @momonpurpose says I know of people who have lived 10 days end of life from when they stopped having any fluid intake so be prepared for the end stage to be longer than you think.

she is on morphiene tablets which last 12 hours and also the spray version, its been increased this last week.

When the nurses come, discuss with them options for a morphine pump/syringe driver (injection that dispenses automatically) to keep her pain free when she gets to the stage where she can't take morphine tablets.

https://www.nhs.uk/conditions/end-of-life-care/your-wellbeing/controlling-pain-and-other-symptoms/

I don't think she's far from going, I was there for my mum, slow slip away & the last breath, the last 2 days it could have been any time.

Glad I was there but it was very very hard & she didn't die alone.

I'm glad you started the morphine. Better a day early then a day late. I have always regretted not starting sooner. This will be hard but I truly believe this is the ladt beautiful you can do for her. Sending uou and your mom a hug I don't cate how old you are you want your mum.

Also on the subject of she can hear you constantly reassure her that everything is calm and settled , everyone is being looked after .
I know with my Dad we had to keep telling him that Mum was being looked after (he was her carer) and it really was okay when he was ready to "go" .
This was Covid time and he was on EoL (but not cancer pathway)

I'm sorry you're going through this OP. My Grandad's decline took several weeks and at times it was hellish.

I'm so glad you've got appropriate support.

I'd recommend that you get a communal jigsaw and put it out on the dining room table for anyone to have a go at. Sometimes you can't imagine how you'll get through the next 5 minutes but you find you have the concentration to look for that last corner piece. Make sure you have lots of good biscuits, tea and coffee in. Chocolate. Creature comforts.

My dad died of cancer. His appetite reduced steadily till he didn't eat for several days, then he stopped drinking. We dampened his lips to keep him comfortable but busy now he was on morphine and spent most of the time asleep though he did have short conversations. Once he stopped drinking he died 3 days later.

@hdtaw retired nurse here. also mother of a deceased cancer sufferer who wanted to die at home but decided that they did not want their young children to see how much they were suffering and thought they should go to hospice instead. they lasted 4 days. I was talking to my child 3 hours before they passed away. your gran sounds as if she is not long for this world. you need to have district nurses involved so she can at least have a morphine pump commenced. they will come in and do it. she needs it to stop any pain because the pain is not good. i am choosing my words carefully here but please contact nhs 24 or your doc asap. i mean tonight or tomorrow am. it is imperative/ so sorry you are going through this. x

OP if she is deteriorating as it sounds then she will soon struggle to safely swallow tablets. Make sure you talk to the nurses about the possibility of a syringe driver so pain relief continues. Wishing you well xx

Hi @hdtaw sorry to hear about ur gran, mine passed from cancer just before Christmas and it’s a horrible disease to watch a loved one go through.

When she stopped eating my mum was told as long as she was getting fluids as she wasn’t using any energy so the food wasn’t as important.

In the last 4-6 weeks of her life she begins to eat less and sleep more. We had been at the point of thinking she couldn’t possibly lose any more weight but it kept falling off her. One day I’d visit and she would make a joke, the next day I would think she wouldn’t make the night.

Around a week before she passed she was taken to the hospice to get her meds under control. They said 7-10 days and back home. She never came out, slept 100% of the time. It wasn’t really like sleep and she knew we were there. When the priest gave her her last rights she tried to join hands. She would raise her eyebrows when told something interesting.

Im sorry I don’t have the answer, it was a horrible time not knowing if or when it would happen. I felt as u do and then would feel guilty for thinking it. I was on Google a lot looking for answers. It really takes its toll living there and looking after someone you love, my mum found it really difficult. I hope she is peaceful and not in too much pain.

All I can suggest is talk to the nurses, they won’t have an answer either, but have been there for many families and are a fantastic support. Support your mum, keep talking to your gran and be good to yourself. 💐