EOL Care

[Icanflyhigh]

My mum is on end of life care. She's been given 2-3 weeks at best. She has cancer and dementia and thankfully doesn't know what's going on.

I'm broken, I'm being practical, but I feel empty and numb, and I'm frightened. I'm a mum, a wife, I work full time and I have a very supportive husband.

I don't know what to expect at the end. I don't want it to be the end, and I know I need to decide whether I want to be there at the end or not.

I want to protect my dad from what is coming, and I don't know how to best help him; and the overwhelming feeling is to run away and hide.

I want to be a child again and have my mum wrap me in her protective bubble and the truth is I've already lost my mum as I knew her due to the dementia, and I can't bare to lose her all over again.

I'm sorry I'm aware I'm rambling. I'm sat here with tears streaming wishing it would all go away.

Bumping for you, OP

In my own experience it's one of the worst things you can go through, being there at the end, but in a strange way it's also a privilege. If you can be there then I do think it helps you deal with the reality, and I also believe that it settles your mind in the future, because there's no guilt for not being there. But that is purely my own experience and I wouldn't blame anyone for not wanting to be there at the end if it's something they know they can't handle.
As regards what actually happens physically, it's not something particularly dramatic like you see on TV, the person may just appear to be in a very deep sleep, no reaction to anything, and that could be a couple of days, you're literally just waiting for them to stop breathing. The nurses are really good at knowing when the end is close and they will warn you, they might say it will be this morning or evening, and they're very kind and supportive, however they couldn't sit and wait with us as they had others to attend to.

I've been in this position with my dad but not yet with my mum. There was a difference in that dad was quite with it until the Sunday night and he died on Tuesday morning.

He was in hospital, in a side room, and I was able to be with him as much as I wanted. With support from friends and family I was with him from Saturday morning until Monday morning. I did not want to be with him when he died and knowing him I felt he would find it easier to let go if he was alone. He was completely unresponsive and had been for about 12 hours since they put the morphine driver in and I had my kids and my disabled mum at home. I felt that I was needed more at home so I left him with the thought that if the hospital said the end was imminent my husband would go back and sit with him but in the even he passed away before we got back. I have no regrets. Being with him in the last few days, telling him over and over how much I loved him was more important than being there when he took his last breath.

Hi OP, is this your first time having to do anything with death?
The thought is scarier than the reality.
Concentrate on doing what you can for your Mum and Dad now. The memory of being able to help your Mum in some small ways through her last illness will very much be a comfort to you later.

In order to be sure she has all she needs in her final days, you may well end up being with her in her final minutes. In my experience, being with someone who is so ill that there is only limited help you can give is more upsetting than being with someone whose heart has stopped, and who, therefore, is at no risk of further suffering.
Death is a very natural thing and I found that I was able to accept it at a deep seated level when I was at the bedsides of my Mum and my FiL as they passed away.

Remember, other people have done this - your Mum, your Dad, friends and colleagues. You can do this too.

A doctor friend once said, "parents are supposed to die before their children. It's the natural order of things." And I found that bizarrely comforting. It reminded me that we all die, and much better for the young ones to care for the older in their last days, than for the parents to outlive their kids. One or the other will happen...

It is very hard OP - do reach out to older friends and colleagues who have been through this before and can support you now. But you can do this. Just take things a day at a time.

Thank you all so much for responding. I was in such a state last night and I'm not much better today, but your words and your wisdom are very comforting.

Just been through this with my dad. It was the hardest thing I have ever done.

My mum stayed at the hospital with him for 12 days and my 3 sisters and I took it in turns to sit with them.

It was also a huge privilege and I am do hlad that I could be there. In the end, my dad slipped away just after two of us had left and before the other turned up. Him and my mum alone - it was right.

Sending you love and strength for the days to come.

I first posted this in February, the day we were told we had 2-3 weeks at best.

Now four months later and my beautiful mummianstill with us, still fighting to hang on with us for a little bit longer.

She's getting weaker by the day, she's bedridden, barely eats, doesn't drink enough and yet somehow she's holding on. Her quality of life is low, but she isn't unhappy or in any discomfort. She isn't aware of what is going on around her, and for that I'm thankful as I think aged be distraught and frightened if she knew.

Taking a lot of strength now but I'm so grateful for every second of this last four months, we genuinely have no idea how long this will continue.

Part of me wishes for it to be over quickly to relieve my dad of the daily care routine, another part wants her to stay forever, but I want her well.

I'm mostly holding it together, I'm frightened to crumble in case I can't pull it back together. I feel strong and weak at the same time.

How painful this must be for you OP.

Make sure you look after yourself. It sounds trite to say, I but I wish I had taken this advice during the last months of my mum's life. It's ok if you aren't with her at the end. She knows you love her and you've done her proud.

It's ok if you aren't with her at the end. Very often people slip away when the person with them has popped out for a few minutes, almost as if they’re waiting to be alone. My mum did this, Dad had stepped outside to have a word with the nurse.

Another two weeks have passed and she fights on bless her, I don't know where she is finding the strength.

It is hard, very bittersweet, but I have no regrets about the time I'm spending with her - I feel very blessed.

Taking each day at a time.

It is so hard, I feel for you.

My DM was given 2/3 weeks in Dec 21 and here we are tidying up the house and garden after her bday party! She can't walk, has been pretty much bed ridden since Dec but we've had hoists fitted so she can get into a wheelchair for a few hours a day.

She has off days and on those days, I'm tearful and depressed, terrified she's going to die. I see her 3/4 x per week, talk every day on the phone but somehow I don't think it's enough and constantly try to find ways to pop in and see them. I'm becoming all consumed with her dying and constantly thinking 'when is it going to happen?' My DH is becoming a little exasperated I think; his view is to just enjoy the time we have with her, we have no control so not to worry...but it's easier said than done.

It's the emotional rollercoaster that's killing me...how can you have a diagnosis of 2/3 weeks but still be here 6 months later? I feel as though I'm stuck in never ending grief.

I'm sorry for derailing OP but I do understand how hard this is. Someone suggested speaking to older people who have experienced it which is a good idea but I'm worried I'd upset them! Argh!! 💐

how can you have a diagnosis of 2/3 weeks but still be here 6 months later? Because prognosis is a very inexact science. Better that way round than a prognosis of 6months then death in 2 weeks, so you haven’t said all the things you need to, made sure all the people who needed one last visit have had the opportunity.

My father had two “false alarms” in January when I was summoned to his death bed - he is still with us - and my DH is receiving palliative care for prostate cancer.

Your DH is right. Don’t spoil these unexpected days by grieving for tomorrow. Greet every day as the blessing it is, a day you didn’t think you’d have

Its the most difficult time. My mum was sent home from hospital before Christmas. There was no timescale on when she would die, but she wasn't eating, had advanced dementia and had had a number of strokes. She got thinner and thinner and when she did talk it was to speak to dead relatives mainly. A week before she died I was called in by the district nurses who dressed her legs every day and told to start forcing her to eat more. This was most upsetting as there was no way we could get much down her and she was losing the ability to swallow anyway.

A week later the district nurse noticed that her colour had changed. She was visibly grey and her nails were grey. We called the GP that day and he said she was near the end. She died a couple of hours later. At no point had she needed pain meds. She just slipped away.

Thank you @MereDintofPandiculation I'm sorry you have this for both your DH and DF. That must be so tough on you all. 💐

I'm so very sorry to everyone experiencing this, mum is still with us, still fighting.

I had been doing ok so I thought, but Emmerdale last night broke me and I cried myself to sleep, realising that I've been deliberately strong this past few weeks, when essentially I'm grieving already.

We saw palliative care nurse yesterday, she noted there was a marked change in mum, she is very thin and weak.

Her swallowing mechanism is beginning to fail and getting her to eat at all is hard work.

I still feel so very blessed to have this time to say the things I need to and make some lovely memories.

Please use the thread as you need to, it's not a derailment at all x

No derailment - just lots of thoughts and good wishes. In many ways it is similar to childbirth for those who are waiting and caring. It is such a personal journey and all we can do is show our love and do all we can to make the person comfortable.

Thank you.

I'm sat with my mum now, we're very fortunate, she has a lovely bedroom with patio doors which are open for the sunshine and fresh air. I’ve done a manicure and pedicure this morning, and she's quite cheerful and just asked me what I will do if I get a crack at being prime minister!!

God I love her to bits!!

That's wonderful to hear OP. Palliative teams work very hard to ensure everything is in place. Sounds like your Mum is a fighter and that she's hung around until you are ready. You'll never truly be ready to say goodbye to your mum, but this time with her is a gift to say everything you wanted to and show her how much she means to you. The pedicures and manicures are love wrapped up in practical ways- she'll feel it in her heart and all over.

Can I just say something that happens at the end- sometimes loved ones go when you are there but sometimes they seem to wait until you've left that evening. And that's ok. Your mum knows you love her.

Over 6 months later, I'm pleased to say mum is still here, still hanging in there. I don't know how, but my god she's a strong woman. She's barely eaten the last few weeks, not even enough to sustain a sparrow, yet she's still with us.
I genuinely don't know how she is doing it.
She insults me daily, has no filter whatsoever, but still has a cheeky sense of humour.
I keep kidding myself she will get better, but I know she won't.
She cries sometimes because she is so fed up being in bed, but we can't get her out of bed, she has zero mobility. I cry with her, I laugh too and on the hottest day of the year she said she wanted a roast beef dinner with homemade Yorkshire puds, so I made it for her.
To anyone dealing with EOL care or dementia, you're amazing xx

Yesterday I lost my beautiful mum, same day as our Queen xx
It was calm and peaceful and me and dad were with us as she took her last breath.

I am so sorry for your loss, and what a difficult day to pass away really.

Your mum sounded like an amazing character, I loved the story about the roast beef dinner; imagined you slaving over a hot stove on the hottest day anyone can remember and your delighted mum tucking in like it was a mid-winter feast. Sounds like she wrung every last moment of pleasure in life out of some very difficult final months. May she rest in peace, bless her.

Eventually I hope you and your dad will also be at peace knowing you did your very best for her. I’m glad you were able to be there when she passed away, seems like you have been a wonderful daughter.

Please take care of yourself OP and rest plenty, it is exhausting when you are on EOL watch for such an extended period of time. The grief hits hard, even when you know someone will pass away, that moment of loss is no less painful and still shocking, perhaps all the more so when some on has clung on for so long.

Sorry for your loss. Take time to be kind to yourself.

We lost mum on 8th September shortly before we lost HM Queen Elizabeth II.

I hope they both rest in peace.

Mum's passing was very peaceful and calm and I was blessed to be by her side as she took her last breath, with my dad.

She fought long and hard - considering the prognosis of 2-3 weeks we were initially given in January this year.

So sorry for your loss. Even though it was expected, it's still so very hard. How lovely that you got extra time to spend with her over the last few months.