Can anyone offer advise please-knowing a loved one will die soon

[Neroli1970]

My lovely mum has stage 4 breast cancer. It's aggressive. We don't know her exact life expectancy bit given the speed it's spread over the last few months, I don't think it will be long.

If you've been through this can you offer any advice please? Anything that helped or you look back on and wished you'd done differently. I just feel completely lost with it all.

Many thanks.

Im so sorry you are going through this.

My mum passed away from terminal lung cancer, she had 1 year from being diagnosed.
When the cancer spread to her brain they said she would have about 6 months, unfortunately she only got 3 weeks, so please don't take any timeline literally.

I was with my mum constantly i cared for her all the way through till the end and yet i still have regrets, i couldn't of done anymore, but i still always think i could of done better.

If you have children be honest with them, my mum bought them all some jewlery for them to keep, i took loads of pictures, videos everything i could.

You will always look back and wish you could do more, just enjoy every last bit of your mum, remember her smell her touch everything, i hold on to all of this x

Is your mum Not being offered treatment?

Thank-you for your reply. Yes, we've told the DC, in a gentle way, we'll build up the information as we get further along.

It all feels so surreal. How life can change so quickly.

Yes, she's having chemo.

My Dad lived for 5 months from diagnosis to death (cancer). It's a horrid conversation but make sure that you know exactly what your Mum wants in terms of a funeral/after death arrangements. My Dad wouldn't discuss it and it was horrendous. Make sure you know all of her bank accounts/savings/debts, what she wants to happen to her belongings.

And treasure every moment - I've got lovely memories of sitting watching films/horse racing in the hospice with Dad, talking about the snow outside and just simply being around him. Take lots of photos and share/write down some of their memories. Even though it was the worst time, it had good moments within it.

And look after you - this is going to brutal. Try and eat/drink well, get rest when you can and drop everything out of your life that you can

We've just lost dad (Wednesday last week), we'd had all the important conversations regarding funeral, will, belongings etc which has made things much easier than when we lost mum 18 months ago, we just made things up and hoped for the best for her! Make the most of the time you have x look after yourself (a lesson I am having to work on!!)

My Dad died in November, we knew from July, I agree with the pp about practical issues, my dad was clear and very organised, we were lucky, as much as you can sort is good.

I’m not sure if I can offer much constructive as its still quite raw for me, it still felt like a horrible shock, I don’t think you can prepare emotionally.

If she is still well enough we took a holiday home in her town for a week and the family came to stay. This meant my Mum could join us for a holiday and go home to her own bed at night. The photo from this week she asked to see on her ipad the afternoon of the day she died.

If your Mum wants to be at home, get palliative care in place and a just in time box, so whoever is with her can access medical care and pain relief etc.

If there's a suitable place in her home to rest in her final days set it up. My parents dining room has a lovely view, we put an orthopaedic bed in there and that's where she spent her final days, and where she died. We had a easy chair by her bed that we used to sit for hours..her final night I stayed with her. The night before my Dad did.

Try and ask her to advise you of her passwords and investments etc and provide paperwork so you can contact them.more easily. Mum was fab and went mad at me 24 hours before she died because I forgot her phone passcide was her DOB backwards not forwards.

If there's no bathroom downstairs ask for a commode and get the liners all ready. And protective bedsheets. And silk sheet that allows you to turn her. In teh last 24 hours Mum was a dead weight and couldn't help us at all but I knew she wanted to stay home so we did manage to get her on the commode for a wee (she had a stoma for defecation).

If you know what funeral director you want gt the details and call them to warn them on death. There are doctors etc that have to be sorted to sign death off before bodies can be removed to funeral homes, but ours once they knew waited to hear and came at 10 on a Sunday night.

Love to you at this difficult time. Its awful but I felt seriously privileged to be with her as she left the world, just as she was with me when I came into it.

Oh yes, if she has any fixings, like stomas or catheters ask for advice on how to change so you know. Twice I've had to resort to YouTube! Stoma for Mum when she was suddenly unable to do it, and the catheter for my Dad when he got COVID and couldn't fathom how anything worked.

You tube is OK you can do it that way but its easier if someone has shown you and probably a bit less stressful

My MIL died last year, she had nearly 7 months from diagnosis. We wasted so much time on stuff that seems trivial now, but felt essential at the time like advocating with hospital, sorting finances, housing POA etc. Nobody ever actually told us she dying so we naively thought we had much longer and would not have wasted time on those things now.

DP went off work sick and spent 3 months focussing on caring for his mum, whereas SIL continued to work and juggle everything, neither is right or wrong people cope in their own way. She deteriorated quicker than anticipated and he never got to ask her about funeral wishes or really properly say goodbye, so don't leave anything unsaid. I didn't go to visit in her final week (I had no idea it was so close) and I hugely regret it.

I'm so sorry you are going through this, nobody prepares you for it.

I'm so sorry. I would if I had the time and she felt up to it record her voice. Reading a book (a very short one) or a little letter so you have it forever.

@op

Not sure of your mums age or if she uses sites like Mumsnet but there are two very supportive threads here which may help and support you and your mum.

I don't how to link but I think you can find them on the health board and then cancer board.

I have breast cancer and I'm having chemo if I can help in any way.

I lost my mum just at Christmas time to stage 4 lung cancer. She was diagnosed in the summer and given 4-6 months, she was unable to have any treatment. She ultimately became housebound immediately on permanent oxygen and passed away 4 months from diagnosis. I'm still in the midst of my grief so the only advice I can think to offer is spend as much time together as you can. If she's able to go out try to go to her favorite places together. Watch your favorite movies together. Talk about your life together. Laugh together. Make memory books. Just be together. And, if she lets you, take many pictures together. My mum hated having the picture taken because she looked so frail but I treasure those pictures of us now.
On a practical note, you need to discuss Will and funeral arrangements while she's able to.

Both had my parents had longer than expected df had 3 yrs
DM was told she wouldn't make old age and she is 81 next week despite being stage 4 rare cancer she has had 16 unexpected yrs.
My point is the journey can be long and immediately we are plunged into the unknown and grieving prior to their passing.
You may have to go with what your mum wants mine didn't want any change from normality.
Take each day and treatment as it comes and look after yourself.

I am so sorry you are having to go through this.

My advice would be to go with the flow and take it day by day and be kind yourself. Also be as nice as you can to everyone else involved. People will behave out of character because they are upset and everything is unknown.

You can only do what you can do. It will be hard but you will get through it.

If you Mum can tell you what she wants then that might make things easier. When my Dad was dying he said that he didn't want visitors so even though some people might have wanted to say goodbye to him we obviously respected his wishes. He wanted things to be as low key as possible. His death was peaceful. He wouldn't have wanted me to record his voice or anything like that.

My Dad left me all his passwords carefully written down in a book. It made everything very easy to deal with.

Just be there as much as possible. As others have said soak it all in because through the bad there are some truly treasured moments.
I try to think of it as a blessing having the chance to say goodbye when lots of people don’t get this. It’s truly devastating but the memories you make in this time will keep you going in the hard times

My dear friend died from this. She had an amazing 2 years before she died. She put all her affairs in order and spent time with the people she loved. She only did things she wanted to - nothing peripheral or irritating. The drug treatments she received enabled her to live as she wanted - she did art classes, spent time in the country, ran up mountains. She rested and was quiet too. They had been warned that the drugs would enable to sustain a good quality of life for quite a period until suddenly nothing worked any more. Her last 3 months was a rapid decline till she died in the hospice she had chosen and visited regularly in the intervening period.

I know this is not everyone's experience of course. But I and her husband and children are so glad she had a good death.

I'm so sorry you're going through this. We recently lost our mum after only a 4 week battle with a very aggressive form of cancer. Unfortunately she was too ill for treatment and so didn't have time to do anything she wanted, including write birthday cards and letters for all of us, or have final conversations with her oldest and dearest friends. I hope she has time to do this if she wishes.
Go through old photographs, talk about her childhood/parents/anything at all that will make you all smile and answer questions you'll have about your family history when she's gone.
We had a rough idea of her funeral wishes but didn't have the opportunity to ask her any detailed questions so if you can, do try to discuss this with your mum.
If she's not at home, or wants to die at home, talk to the hospital palliative care team asap - they can move mountains and very quickly, use the support they offer and push for it.
Just spend as much time with her as possible, wherever she is. And treasure every moment.

Sorry to hear your news. My husband died 5 months after diagnosis. Please if you haven't already contact McMillan - I don't know how me and the children would have got through without them. Make sure you are claiming any benefits your mum is entitled to - McMillan can help with this. Make sure you know her wishes re funeral and her will- I know it sounds harsh but it's one less thing to do afterwards. I'm so sorry x

OP I'm so sorry you are going through this. My mum had stage 4 breast cancer that metastisised to her brain. It was 7 months from diagnosis to her passing away. I think it is important to try and get someone to say what it is. Doctors never told us she's dying, but the deterioration was almost like clock word. Every end of a month she'd be worse. The treatment also was brutal. Looking back, knowing what we know now, we know the chemo had no benefits. She would have not wanted treatment, it msde her feel even worse. Also ask her what she wants. Does she want intervention? I think we always pretended in a way that my mum was not dying and it feels like it was a disservice to her. My DB made her anti- cancer veg 2 weeks before her death for instance. It's horrible OP, and Im so sorry. But like PP said, it's a blessing to have time to say goodbye and how much you love her. On a practical level, my mum had a little notebook where she wrote all her passwords and logins down and also where all the important documents were kept. I am sorry OP.

This might sound too maudlin at this point, but try to get some recordings of her voice, if you can. I have done treasured videos and voice recordings of my dad but I don't have my mum's voice and I'd give anything to hear her again.

I agree with recordings. I have an hours recording of her with her oncologist of all people. Recorded so she'd remember what was said. It's lovely to have her voice.

I'm so sorry you are going through this x

If you are going to be looking after your mother at home then the GP should put you in touch with both district nurses and the palliative care team (our’s was based in the local hospice). We were given an ‘end of life’ bag of drugs on prescription, ordered by the GP, but we could not administer them ourselves. Hence the need to be able to phone the district nurses. The palliative care team sat with mum every night so we could get some sleep. Mum had carers in place for years but once she became end of life the caring team were free. If your mum is at home you need an occupational therapist to come to the house - we had a hospital bed and a hoist. We were only able to prevent mum being taken to hospital near the end because she had registered as DNR with the GP (I didn’t have PoA). Nurses know when the end is near and all the family and some old friends were able to come and say goodbye on the day before she died. My one regret is that she never heard the eulogy I wrote for the funeral. It was prepared well in advance and I wish I had read it to her. DD and I shared the nursing and were with her when she died which we considered an honour. It wasn’t frightening. Her breathing changed, she gave a few gulps and then she was gone.

Big hugs.
Best advice I had was life expectancy is hard to guage but the rate of change you see is a good indicator of the rate it will progress.
I was able to have my Mum live with me for the last couple of months. It ensured she was well fed and appropriately medicated and had her family around her. We actually had a lovely time (most of the time) but it was also incredibly sad and draining.
I was able to talk to her about how she wanted to have her funeral and we did some lovely activities with DD. I don't have any regrets.
It was a time I could give back some of the care she gave me over the years..