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?

Sending you lots of love OP. My dad was at home for his final days with cancer. I was little but I remember the Marie Curie nurses were there regularly and were a huge support both medically and emotionally. They are true angels.
But nothing can take away from how sad and difficult this is. You are doing the most amazing thing giving your Nan the most comfortable final days possible in a familiar environment. You are already grieving, while also having to find so much strength to care 💐

Hi OP, you are doing a lovely thing for your nan.

I'm a dr and when people reach this stage it's likely to be days rather than weeks, if you see what I mean.

Things that I suggest - agree with contacting GP. Firstly, to look at the medicine that she is taking. She may not need all of those medicines now - for example, medicines for cholesterol or high blood pressure are intended to reduce the risk of heart attacks/strokes over a number of years - at your nan's stage of life, they aren't helpful, and it won't matter if she stops taking them. It's also useful to see if she needs any other medicines prescribing, including the injectable ones that are used at the end of life, so they are ready in the house. Finally, if a dr has seen mum within a short period before she dies it will make writing the death certificate more straightforward.

So sorry you are going through this. I've been through it twice and it's not easy.

Hopefully the nurses will be around to keep her comfortable. x

We managed to borrow a bed that moved to relieve bed sores etc from a local hospice

yes she sounds near- the body doesn't need food in the actively dying process and food could cause pain. I'm sorry you're dealing with this. hugs

My mum, uncle and aunt all died from cancer.

I was with them all to the end.
My mum, after she got to the same stage as your Nan lived for 8 days. She was still talking and sitting up for 3 of those.
My aunt lasted 10 days she was a big lady so maybe that’s why she lasted longer, but she was nonverbal and mainly asleep for the whole time
My uncle lasted 8 days sleeping mainly for most of this like your Nan now.

Whether it depends on size, ie reserves that could sustain you I don’t really know. But the McMillan nurses told us life expectancy once they are only really on water varies a lot but rarely more than 10days.

I have been through this 4 times with close relatives. So many factors influence how long someone will live including their underlying health, for example if they have heart failure and the level of medication etc. Do ask the GP, and nurses for help and advice on pain relief, skin care including preventing pressure sores (special bed / mattress), bed bathing, changing sheets, dealing with possible incontinence (under sheets, enough linen, incontinence pads), mouth care (watch out for thrush), nausea / vomiting etc. Do look after yourself and your mum, don’t damage your back through lifting and turning and try to get out of the house for a walk and let someone else sit with your grandmother. She may like to listen to music, we made mixed playlists with their favourites. It may be that you get to a stage that she needs more care / help managing her symptoms. I would try and find out about your local hospice just in case. One relative ended up admitted into an acute hospital ward - something to be avoided if you can as although they will (hopefully) do their best, they are not geared up to this and have conflicting priorities, such as post operative care of other patients.

Sorry you are going through this. From experience in my field of work, yes , usually stopping eating and sleeping more will be a stage nearing the end. Definitely agree with others that if not already done so to get some professional out.

My dad had pancreatic cancer and he got really tired about 2 months before he passed. He was really out of it the last week or so - his body only trying to move when he needed the bathroom. It sounds like your nan is close. My husband took great comfort seeing his mum pass at home. If your nan is suffering then call your gp for syringe pump.

My Nan passed at home from bone cancer. She refused to go into the local hospice so Macmillan came out to her and were there for the whole last week. Absolutely amazing angels. They were such a comfort and helped after she had passed too.

My mum took seven days sleeping, she was on a morphine pump for pain with medazalam for anxiety and we had some stuff to keep her mouth moist.

I'm really sorry that you are facing this.

There is a topic on MN, https://www.mumsnet.com/talk/life_limiting_illness, where you may get more targeted support than you would in Chat.

Hello, I've created an account just to respond to this post. I looked after my grandpa in his last weeks earlier this year, he passed from pancreatic cancer. He was at my parents' house and my father is a doctor. What I can tell you is that no one knows exactly when people die. In the last couple of weeks with my grandpa, every day we thought: that's it, it's the last. He surprised us until the end!

Also wanted to reassure you that people aren't necessarily in pain. We tend to interpret people not eating or drinking as being in pain, but towards the end of someone's life, it is normal, and eating would be more uncomfortable. My grandpa was given a bit of morphine, as he was a bit agitated now and then, but we don't think he was in pain.

And finally - I think it's great you're looking after her, and allowing her to die at home. Obviously it will be different experiences for everyone, but from my experience it was quite peaceful, and brought the family together. We gathered in my grandpa's room every evening to sing songs he liked around him, read him poems, etc. Those are nice memories despite the situation.

Good luck, and don't forget to also take care of yourself. Go on a walk, watch a show you like, etc.

Good advice on here. Glad you have some support coming tomorrow.

If you can, try to find an end of life doula: https://eol-doula.uk/what-is-an-end-of-life-doula/ who will help you with this.

I'm so sorry OP. 💐

There is a hospice nurse with a youtube channel which might have some useful information for you.

https://youtube.com/@hospicenursejulie?si=UcryPW7GtHUcWdMf

Another nurse here....

Just make sure she has a morphine pump. She doesn't have long to go and her ability to swallow will decrease dramatically. It's essential she's not in pain.

My hat off to you for moving in with her at the end of her life.

I'm so sorry I also cared for my mum un the end at home.It sounds like she is every close im sorry to say but my mum had something called the death rattle in her last 24 hours of life.Im so sorry 😞 this is happening my muk also had it in her brain xx

Hey, I’m a palliative care nurse. I would say each death is very different, but that once a person starts to refuse food and drink and slip into a sleepy stage most of the day, then the odds are that it will not be long. I am assuming you have all the palliative care medications in place at home and a nurses coming in regularly? Some people don’t need any of these medications and can slip away peacefully without, but some need medications for agitation, to control secretions, for pain and for hallucinations. These are all in place in your medication package for at home palliative care. Your nurses will start with the minimum dose that is required and they can be a huge help if your nan is experiencing discomfort. It is normal for a dying person to experience lots of different symptoms and it is important to control them if you can. Remember she can still hear you all, and she will sense you being near her. From my experience, people with loving families tend to hold on until they sense that their loved ones are at peace. With my Nan, we whispered in her ear how thankful we were for everything she had done, for who she is, we told her that everything is okay and she can let go whenever she is ready. She also died of cancer. In the end, she passed with all her five children around her. I hope and pray your Nan will pass away peacefully and as comfortably as possibly. So sorry that you have to go through this but sounds like you have an amazing family and can hold each other up through it all. X

I'm so sorry you're going through this.
I can tell you my experience I had with my mum. She didn't have cancer but she did have a heart condition that we knew she was dying from. She didn't want to stay in hospital as she wanted to pass away in her own home. She went downhill fairly rapidly over 2 months and ended up bedbound. We had hospice nurses coming in 2 or 3 times a day.
The day before she died she seemed to have a 'burst of energy ' almost. Apparently this is quite common. She was drinking tea, eating biscuits and some scrambled egg. Even tried eating some pizza in the evening. Saying she was bored, so we watched something on her tablet. (She had been eating nothing in the days leading up to this and only sipping water.) She passed away in her sleep at 5am the next morning.
Maybe talk to your Nan's GP and see what's available for end of life care/meds and if you can have a hospice nurse help you. You should be able to get help. I hope this all goes peacefully for you 💕

One more thing...

As she stops drinking, wet her lips and face. Keep talking to her in a soft voice remembering good times. Stop, as much as possible, loud noises or crying near her. The morphine takes the pain away and makes her drowsy but she'll still have full cogitative function on the few moments she opens her eyes and talks to you.

There are few things that can be done in palliative care except making passing as comfortable and loving as possible.

It was similar with my mum. The hospice at home nurse sent us home at midnight saying she’d let us know if there was any change. I’d been in bed an hour when I got the phone call saying her breathing had changed. We said that she was waiting for us to all be safely in bed before she felt she could sleep like she had when we were teenagers.

OP, ask the MacMillan nurse for advise she will know.

Hi there, first of all I’m sorry to hear about your nan. I lost my dad to stage 4 cancer recently and we had help from Macmillian nurses, but he didn’t want to be at my house (it was impractical at his home as one bedroom and miles from my sister and I). Macmillian helped us find a hospice and he had a lot of pain relief. They were excellent at knowing and preparing us as the time approached. We were able to sleep over and hold his hand so dad wasn’t alone. I wonder if you could get help from them or a local district nurse through her doctors? Sending you much love x

Sorry I haven't read the full thread as I am rushing to answer. I'm glad you have Marie Curie and Macmillan involved.

It sounds as though your Nan is close to the end now. She doesn't need food, but when she stops drinking do try to keep her mouth moistened with water, eg on a soft clean cloth. When she wakes up, you could see if she wants some sips of tea or water, but don't try giving her fluids while she's unconscious.

Are you getting professional carers in to help with her intimate care?

When I was looking after a relative in similar circumstances, I was astonished to discover I could not lift her, once she had become unable to lift herself, even though I was quite fit and she was much smaller than me. Even with another relative helping, we could barely move her, and our efforts were hurting her as she had become very fragile. We needed to wash her, change her pads and (as the disease progressed and she was mainly unconscious) turn her from one side to the other to try and stop her getting bed sores.

I contacted the local hospice and they sent in two carers at a time, three times a day. They were trained professionals who could do it all without disturbing her. This, and all the other help the hospice gave, was free of charge. If that's not available where you are, you can hire carers privately through care companies.

I wasted time at the beginning by trying to find out how to get help. Surprisingly, her GP didn't give much information. I found the district nurses and the hospice were the most helpful, in providing both services and information.

I learnt to write everything down that I was told, because it's very easy to ferget things and get muddled when you're under such stress.

When my relative wasn't waking enough to take medication, near the end, the district nurses came and gave her injections.

Also, make sure you and your Mum are looking after yourselves too, eating healthily, drinking enough and taking turns to go out for some fresh air every day. I've done a lot of manual work during my life, but I've never been so exhausted as when looking after someone who was basically not moving and not making any demands. The emotional strain and the responsibility can be overwhelming.

I felt wiped out for weeks after she died. It was like recovering from flu. But I was so glad I had done it.

You're doing something wonderful and repaying your Nan for all she's done for you, helping her die peacefully in her own home. I hope everything continues to go well xx

I've just remembered, I had to go to a pharmacy to get a "Just in case" kit, containing various items and medicines that might be needed near the end. I forget who prescribed it, but your GP or the district nurses will be able to tell you.

Also, early on, the district nurses told me to contact them when my relative died. I did, and they arrived at once. They were immensely helpful all the way through. Do check, though, because I've read that you're supposed to ring the GP when it happens -- there may have been a different system in that part of the country. It's good to be prepared so you aren't worrying about what to do when it happens.