Hi, I can’t believe im now actually using this forum but hoping to gain some strength from it. Mum was given two years in Jan 2016 with kidney failure and here we are a few weeks away from Jan 2018 and she’s fading fast. My heart is broken already and I just do not know what to do to cope. She’s the most amazing person I know but recently said she felt she was letting me down by not having dialysis. Dialysis wasn’t an option due to other health issues so she’s made the most brave desicion ever and one I fully respect having heard the options as if she’d have tried it then she wouldn’t have been here now. To see her today at the hospital has been the most difficult day of my life as I realised that I ‘lost my mum’ today mentally. She’s fought for so long but the detirioration in the last 48hrs has been immense. She’s gone from walking to being bed bound and is drifting in & out of sleep but twitching violently.when she couldn’t stand up she broke down and it was terrible. Sorry to ramble on but how do I cope? I really don’t know what to do other than be with her. I’ve been sitting with her and at one point she woke up and saw me and gave me the most lovely smile ever. Will treasure that for ever. I can’t see life beyond this I really can’t. She’s getting a syringe drive with painkillers and anti sickness but will also sedate her which will be better for her to be less aware of what’s happening. I feel so terrible writing this but she does not deserve this at all. If anyone has any advice or is going through the same let me know. Thank you
Hi Lucy,
Sorry to hear that your mum is deteriorating so fast, it sounds as though that is incredibly hard for you to see. You are doing do much for her just by being there with her and I’m sure it means a lot to her. The staff at our hospices say that often someone can still hear you even after they can no longer communicate, so keep talking to her. You may also find it useful to read our information page What can I do to help when someone is close to death?
This site is a safe space for you to write about what you are feeling, and I hope it helps a little to get things off your chest here.
If you need any information or a supportive person to talk to one-on-one, Marie Curie also have a helpline on 0800 090 2309.
Thinking of you.
Priscilla
Community Manager
When I sat with my dad when he was dying I just talked to him about what time of day it was what the weather was like and played him our favourite songs. That gave me some peace. Talk to the hospice staff, the staff at my dads hospice in Leicester were good at listening to how I was feeling. I told him I loved him and although it was heartbreaking I told him if he’s ready to go don’t suffer any longer and let go. I lost my dad two months ago and I am so glad I had that time with him. The hardest thing is watching them die you feel like you won’t be able to cope within them. I certainly didn’t. I have had grief counselling through work and through Cruse which has really helped.
Dear Lucy,
My heart breaks for you but try to be brave and stay strong. Your mum needs you now more than ever.
My mum passed away in August from kidney failure - she was 96 and had a good long life. The final weeks were tough. Mum could not have dialysis either so maybe a similar situation.
Spend as much time with her as you can. Talk to her and tell her all about your day. Tell her how much you love her. I look back now and although I am still in pieces I do draw some comfort from having made the effort to just sit with her.
Ask family to help you and take a turn if they can. Try to keep busy.
I am sorry that I cannot take your pain away but you will get through it. Look after yourself too as Mum will need you more and more.
Take care - sending much love,
Caroline
Hi Lucy
So sorry and sad for you reading your post. I agree with others, just sitting with your Mum and chatting. Even if she cannot make out exactly what you are saying she may well be aware of a familiar voice. Physical contact, even if you are not a very tactile person, is also good. I sat and stroked Mum’s hair sometimes, Always kissed her goodnight and told her how much I loved her. I don’t know what I talked to her about, just nonsense probably.
My Mum passed away last year and I had the same, the drifting in and out of consciousness and the twitching. Mum had a syringe driver for the last bit which I hope gave her relief from the pain she was in. I found the last few days passed like a dream, just sitting with her knowing what was to come. It is very hard so take all the help that is offered to you.
Try and rest and sleep when you can, you will need all your strength in the next few weeks.
Mel
Xx
Hello Lucy
I felt moved by your sadness about your mum. It’s12 years since my own mum died after an illness lasting 2 years. The feeling of devastation will diminish as you take strength from your mum’s abiding love for you. I remember my mum telling me that I was a strong person to help me cope although I did not feel it at the time. I think of my mum every day and still draw strength from her wisdom and love. You will always feel your mum’s presence throughout your life. God bless.
Thank you all so much, Mum passed away on Tuesday and I can really relate to what you’ve all written. This time last week even though she’d had a mini stroke too she still kissed me goodbye and I’ll treasure that forever. So pleased to hear how many of you feel more peaceful about having spent you last hours with your mums. I managed to spend the last week pretty much with her 10-8 daily and then I got to spend her final 24hrs with her hand in hand talking to her apart from when I slept on a deck chair to be the same height as her so I could sleep by her side. Only got 4 hrs sleep and then the final moments came and they were traumatic as things happened to her that I didn’t know about so I became quite hysterical. I’ve never seen a dead body before so for me that too was quite disturbing but I did it and I’m proud I could be there for her in that way. I’ve not had quite the reaction I thought I would but I honestly feel I’ve done so much grieving in the run up to this that I’m cried out. I’m getting upset each day about things but keeping it together pretty well considering. Thank you all for your messages and support Xx
Thanks and yes does sound similar situation I felt a lot of doctors didn’t respect my mums choice (even though it was a no option choice) but her main specialists have been great. I can’t bekuebe I’ve now gone through my Mum dying but I really do have comfort knowing I was with her and that was so special to be just me & her (my dad stayed in another room as they were divorced) and it was important to be just me & mum. I got my wish and the promise I made her. So busy with funeral plans that I think it will really hit me in the new year when I return to work and ‘normal routine’. I couldn’t have done anymore for her. Just so sad xx
Hi Lucy,
Sorry to hear that your Mum has passed away - my thoughts are with you. She is now at peace.
I feel the same as you - I felt that I had lost my Mum back in March when she was very poorly - and when she passed away I coped ok.
I get emotional at times as I wish I could talk to her and see her one more time. It is hard but our mums are not suffering now so that is a comfort.
Take care of yourself and I hope that you find peace for yourself too.
Caroline
xxx
There’s one symptom I now have that is causing me quite a lot of discomfort and I see it’s caised by grief and shock but mouth is so dry and my lips are cracking it’s so painful but no amount of lip balm or saliva sweets is making any difference x
Yes, it does hit you hardest when you go back to the routine and have to accept a lie without your Mum. You will find yourself going to phone her or thinking ‘I must tell Mum that …’ - it is hard and an incredibly personal thing too. We are all different in the way we cope.
I cannot believe I will not have Mum here for Christmas as we always spent 10 days together here. I left live a distance from where Mum lived so only saw her a few times a year. This Christmas will be hard to face.
I hope you manage to get through the funeral ok - I chose Ed Sheran’s Supermarket Flowers as the song I wanted at the end of the service. If you have not listened to it I would recommend it - I find huge comfort in listening to it now.
Take care and come back here to chat if you want to - I find that it is comforting. Mum died 4 months ag but I still feel I need support.
Caroline
I would ask your doctor for help and see if there is an easy solution. The fatigue will be a big part of it too I guess. You are rundown and drained as we all are at the end of the process.
I find I cannot sleep well at the moment (hence typing how!) but I don’t want tablets.
So sorry to hear about your mum Lucy. No more suffering for her now though. Your doctor should be able to help with your symptoms. My partner of 24 years died 2 months ago and I’m experiencing several stress related symptoms myself. Things will get better with time as long as you try and put yourself first at least for a while. Best wishes
Hi Lucy
So sorry to see your Mum has passed away now but you were with her which is great. I know it feels awful now the memories of those last few hours but you did it and a few months on you will be so glad you did. It honestly will have meant so much to your Mum knowing she had someone she loved and who loved her with her.
The best piece of advice I was given was to just say ‘No, I don’t want to’ to anything you don’t want to do. No reasons to be given just No. It is very liberating as we are conditioned to say yes and try and please others but they can just clear off, you are number one at this time.
I know the last thing on your mind is eating but try to, even just a little bit. Comfort foods are good, soup, baked beans or scrambled eggs on toast, that sort of thing. Easy to make and eat too! Fresh air too, a little walk even to the end of the road and back or longer if you have somewhere good like a park or countryside.
You take good care of yourself.
Mel
Xx
Dear Lucy,
I just wanted to reach out to you and send a hug. What you did for your mum was so brave and incredible and what a lovely way to pass, right next to her wonderful daughter. My parents were divorced, so I was my mum’s “main person” in what were to be her final months (we didn’t know she was going to die, we knew she was poorly though). Let us know how you are feeling, and please come and talk to us again if you want to? xx
Hi Lucy, so sorry to hear this, I stayed up the hoslital 24/7 in Oct when my mum passed away at 66 from a severe brain bleed. It was awful but at the same time dignified as the syringe driver kept mum pain free and she was never left alone so even right at the end we were there with her. It is very hard but we just didn’t want mum left alone at all and you will know what is right for you and your mum. It is the last gift you can give as they say hearing is the last to go so at least when the time comes if she knows you are there and can hear you, you will have done the best you can and it will help you feel more at peace take care xxxx
Thanks and sounds so similar especially with the respect from doctors like with yours the main team were great. The last couple of days have been hard, how have they been for you? I don’t think I’ve had a chance to think about it too much as she passed so close to Christmas. I’ve had exactly what you said happen already- with my neighbour’s last week and thought ‘I must tell Mum that’ and then felt awful. Picked up death certificate too and then they said there was a bag of her items and we thought we’d cleared everything. Only turned out to be the blanket (which was mine that I’d used the night I’d stayed over but they’d also wrapped it over Mum after she passed. Talk about feel sick. It’s the funeral Friday and am dreading it. The real dread kicked in Monday. Hence I’m probably still up now and everyone’s said I’m going to crash after funeral. Hope you’re first Christmas has been copeable, did you have company?
It’s the
Thank you. It was similar for me with parents divorced but Dad has still been around at the end and now but in the past two years it’s just been me. I know I did the right thing even though it was a nightmare to watch and wait for every breath. After 22hrs I really didn’t think I’d cope much longer but then it happened two hours later. I’m so missing the calls, texts and just seeing her. Funeral is Friday and I’m absolutely dreading it. Any advice on how to get through the funeral? I can’t believe I’m now on this forum using it, it almost doesn’t feel real. X
Hi Lucy,
We have got through Christmas by keeping it quiet and small. I have had my husband and son with me - my brother is coming to stay with his kids tomorrow and it is the first time I have seen him since the funeral.
With your Mum passing so recently you will still be in the initial shock and horror phase. I found that this lasted beyond the funeral as it takes time to adjust to not having that person physically with you.
The most helpful thing for me so far has been to talk about my mum and how I feel to anyone who will listen ! My husband has been really good about listening to me ramble on - I do feel more able to move forward now that Christmas has gone.
I hope you are able to rest soon - I found it hard to sleep leading up to the funeral and I am only just starting to get that sorted, four months on. Don’t rush yourself - let the grieving process take a natural course and that will be individual to you as we are all different.
Take care,
Caroline
Hi Lucy,
The funeral is a tough day. However, I did find it comforting in so many ways - dignified like my mum was and full of celebration of her life. We chose music that meant a lot to us and I found that helped. (If you get a chance listen to Supermarket Flowers by Ed Sheeran - so poignant; I listened to it a lot when Mum was poorly and it helped me and then we had it at her funeral too.)
You will be exhausted by Friday as the lead up is very stressful. Try to look after yourself - eat well and try to get some rest. To be honest I was in a daze on the actual day and it flew by - I don’t remember much about it so I suppose I blocked it out.
On the day try to remember that your mum would not want you to be upset - she would want you to celebrate your love for her. The most precious thing we have left are our memories and sharing them with others who knew her will be of great comfort.
I did not cry at mum’s funeral - that is just my way of coping - but I have cried every day since she died. At four and a half months on though I can tell you that it is starting to get a bit easier. I know my mum would be upset if her passing made me continually sad as she was such a positive person so now I am trying to see the New Year as a turning point in my grief.
I hope that Friday goes as well as possible and that you do find some comfort in the process. It is the last thing we have to do to ensure that our Mums are safe. It is the ultimate sacrifice in saying ‘goodbye’ and knowing that she is no longer here on earth but she will stay with you for ever, by your side.
I don’t know what else to say other than I will think of you on Friday.
Take care and sending love,
Caroline
xxx