My mum is in a hospice - I'm struggling

Thank you Jackie your kindness is much appreciated. x

Hi CoCo15, thank you for posting, and I’m so sorry to hear about your dad. That must have been incredibly difficult for you, especially with such a short amount of time between diagnosis and passing away. Not enough time at all to even start to get your head around it. I have been reading a lot online about how ‘living with death’, i.e. knowing you have a terminal illness, is starting to overtake sudden death, which used to be the most common way death would happen, either an accident or due to an undiagnosed illness. With modern medicine, people are able to be diagnosed way ahead of final days and treated to extend life as long as possible, which means more and more people are having to live with death for at least a certain amount of time. I can’t imagine how I would cope/get my head around this, and so I can’t imagine how my mum did, and it continues to upset me, knowing she had to deal with it daily, albeit for 4 and a half years. I also can’t bear the fact that she will miss out on so much - i.e. she wanted grandchildren so badly, but I wasn’t able to give them to her, and if I do have children some day, I will feel guilty knowing she so badly would have wanted to be there for that. Sadness, guilt, and anger are my 3 strongest emotions at the moment. The funeral was a few days ago - I know you’ll understand just how hard that was - I wrote and read a tribute and got through it just about ok, but I’m sure I was pretty much howling at points xxx

Hello everyone. It’s been a couple of weeks since the last post in this conversation, so I just wanted to check in and see how you were all coping?

We have a new member on the site called Lisa, who lost her dad in December and is feeling really sad and angry. If any of you would be interested in talking to her, you can see her post here: https://support.sueryder.org/community/life-after-bereavement/dad

Hi Louise I am so sorry not to have responded sooner but some days are better than others. Thank you for your kind condolences. I, too, have been haunted by the fact that my Dad knew that he was terminal and have worried about his state of mine. As you say, you can’t imagine how you would feel or cope and I know that my Dad put on a brave face for my Mum, Brother and myself. He would only see us and would not see any friends or even other family members or the Grandchildren, but I can now see why as my boys (aged 9 and 13) have only happy memories of him and of fun times spent together and that was his goal. I so feel for you that your Mum had four and a half years of worry and stress over her illness and you too. I also suffered the three emotions you are feeling and still do but time has slightly started to ease the pain, although I know I will miss him forever. I know how difficult the funeral can be but how proud your Mum would have been that you were brave enough to read a fabulous tribute to her - well done you. Give yourself time and remember all the fantastic times spent together. Talk about her and share those memories so that she still lives on in your life and those of others. When I hear my boys talk with fondness of their Grandad I can’t help but smile and remember the good times. Take good care of yourself and remember I am always here for a chat and support if it helps xx

Hi Louise I am new to this forum so I am still bit confused by it I’m not very computer literate. I noticed your post is from dec last year so I am not sure what situation you are in now . I could really relate to what you wrote I too spend well live at the hospice with my mum so I am there for her but I am really struggling it is so heartbreaking we are so very very close with such a special bond peas in a pod she says I’m finding it difficult to cope and like you said you don’t get proper or much sleep so are tired physically and emotionally. It’s heartbreaking . I don’t have close family so I am pretty much on my own . Although I wouldn’t wish this on anyone when I rad your post I could relate to a lot of what you wrote so it was nice( not the right word but sure you know what I mean ) to read so don’t feel so alone as I do. My mum is only 60 and we have been through so much bad stuff together and we were planning on doing some nice things together but the she got I’ll and diagonoised with cancer which had spread so I feel so very angry and hurt life is so very cruel and to the kindest of people . I feel writing this I am in some weird nightmare it’s just gutting beyond words. Thank you for your post it made me feel a little less alone but so sad for you. I hope you are doing ok as much as you can be at such a difficult time. With love Tray x

Hi Tray,

Thanks for writing, and I’m so glad my post helped you not to feel so alone in what is such a lonely time. I know what you are going through and how horrendous it is, and how hard it is to stay strong whilst having so many different emotions to contend with. I’m really sorry you are in this situation, and my thoughts are with your mum. I found that this forum helped me a little through that time back in December, just knowing others could relate to my situation helped. Maybe you’ll find that the case too - I will be here to ‘listen to’(read) what you want to say or even answer any questions you have as honestly as I can. The unknown is scary, and people don’t talk about this stage enough. I’ve been pretty selfish over the past few months, just dealing with my own stuff rather than checking in on others on this forum. I’m getting to a place where I hope I can be of use to others who are going through similar. So, I am here. How are you doing today? xx

Hi CoCo15,

Tray’s post brought me back to this forum thread, and I have just seen I didn’t reply to your last post - I really appreciated you writing and sharing your experience and feelings, as well as your kind words to me. I’m so sorry for not replying. How are you doing? xx

Hi Louise so nice to hear from you it means a lot . Forgive me my mind is all over and still getting the grips with how to use this site I don’t know if you have read the post I put on today my mum passed away last night and I’m beyond heartbroken I just don’t know how to deal with this we were so close so very lose peas in pod I just don’t know how to carry on my reason for living was to be there for mum to love support her with anything and everything but seeing her suffer in the last week days esp was gutting and the final end . I feel so strange and scared my life days are empty now I me and mum had our lovely dog who we both adorderd but we lost her in February and that broke my heart and this is just killing me me and mum lived together and I’m now here alone I haven’t been here in 3 weeks or more so that feels so strange and there’s so many sad reminders I’m sorry if I’m going on its just I feel so scared and lost and overwhelmed . So sorry if I’ve gone on too much just overwhelmed.thank you again it does really mean a lot . Love sent to you also xx tray x

Tray I am so, so sorry to hear about your mum, I didn’t see your other post - I have just looked it up now. I am devastated for you. Even though I have been through the very experience you are going through right now, I still have no words to express just how sorry I am and how unreal and horrendous and overwhelming this all is for you. It cannot be put into words. You will feel strange and scared, of course - your world has shifted on its axis for now. I will just say that whatever you are feeling, don’t fight it, don’t question it, just acknowledge what you are feeling, and let yourself feel it - it is all completely normal. Keep anything close that gives you even the smallest bit of comfort - a cup of tea, a hot water bottle, blanket, TV, this forum, anything at all that can keep you warm and calm, even if just briefly. It sounds trivial, but these little things really helped me through the initial stages when my mum passed away. I will also say try and keep up your daily routines - e.g. I found making sure I showered and washed my hair, brushed my teeth, put my make up on every day, as I have done every day for the last many years, kept that tiny bit of normality where everything else came crashing down, and it truly helped me. I am now 5 months on, so quite a way ahead of where you are at right now, so I hope that in sharing my experience it might help you even the slightest bit. Ask whatever you want - any questions you have, I hope I can help, and don’t fear upsetting me - it helps to talk. Do you have anyone around you right now who is helping you through?? Love Louise xxx

Hi Louise. Thank you so much for your reply and your words of advice I am trying to do what you suggested and keeping asking mum out loud help me mum I don’t know how to get through this . How did you feel on the very first days after ? Hope that ok to ask as you put in your post I would hate to put something that took you back to somewhere you don’t want to go. I have just dealt today with getting hospice medical then going to registry then to funeral place I hate to write certain words like that makes me feel I’ll . I can’t believe mum not here or that I won’t see or be able to speak to her again or advice as we were peas in pod and I nursed loved cared support her all the way through from November when she started to become ill and she was diagonoised in feb 2nd with cancer of the osphegous and it had spread . Now it’s just me myself and I I ost my well our dog in feb she was mine and my mums world our dog got us through death of my sister and dad and very close friend and all of this was in such short spaces of time one after another and me and my mum supported each other through this and our lovely dog who was constant comfort and now I have lost them both. I do have a good neighbour friend but then it’s when you turn the key and just silence and loneliness no mum and no lovely greeting from our dog. Everything seems so overwhelming confusing painfully so very painfully did you feel that ? I’m so sorry if I have gone on I just feel so overwhelmed and scared . Thank you again your words and thoughts are a comfort . I also send out my love and a hug to you . With love from tray xx

Hi Tray,

Everything you are feeling is completely normal - and yes I felt all those feelings too, and still do - it comes and goes in waves, and the waves get further apart as time goes on. It is an unbelievably painful thing to go through - my mum was also 60 when she died, and we were also incredibly close, so I felt cheated, and felt she had been cheated too out of more years - I’m sure that is how you feel to some extent too.

Ok, so the very first day after my mum died, I felt pretty numb. My mum had been in the hospice for a few weeks, and 2 days before she died, she fell unconscious - which I know is often part of the dying process. It was actually then that the enormity of it hit me, and I had an absolute meltdown, as it was then that I realised I had lost her. So, when she finally passed away, that evening was a late night, moving her stuff out of the hospice room, and went back home and stayed up quite late, not really sure what to think or feel. Disbelief I guess is the best way of putting it. I just couldn’t get my head around the fact that I would never see her or speak to her again. And it hurt so much knowing that my mum had had her future taken from her. My mind for the next few days was really just full of thoughts - I’d think and think and think, cry, think some more, cry some more, interspersed with the admin that unfortunately goes with bereavement, like you are having to do. I felt utterly lost - a huge part of me had gone, just like that. So everything you are feeling is normal and natural. And really, there is nothing you can do about it other than acknowledge what you are feeling and ride the painful waves - each one will pass eventually. Remember to eat and look after yourself, keep any comforts close, and don’t think too far ahead - taking things just one day at a time is so important.

Sending you strength for the next few days, and remember I’m here - I’ll be thinking of you
xxx

Hi Louise, I’m new on here too. I could have cried when I read your post, how very sad and your mum being so young.
But I can tell you that I lost my mum and dad in a road accident in February, they were 80 and 85. A good old age people keep saying to me, but the truth is that we never want to let go at any age.
Some days I wish I could have gone as well, just to stop the pain. Then I look at my family and I know my mum and dad would have thought that very selfish.
I’m sure your mum loves you very much, and the fact you are so supportive must mean an awful lot to her.
We all hope for miracles don’t we? To wake up and it all be a bad dream, but then reality hits you and it’s like your back at stage one.
We can’t do anything to stop these things happening, except to love and cherish our loved ones while they are with us, no matter how ill they are. XXX

Hi candy , I’m quite new to this forum too and struggle with if I’m replying to right part if that makes sense I have a few old posts on here if you have read them I don’t know but I lost my mum Monday night and in pain beyond belief my mum and our dog was my world and we were so so very close peas in a pod mum said we had the same necklace . I nursed her intensely since November time she was told she had cancer that had spread in feb 2nd my world turned that day. We lived together and seeing the person your mum the one I love the most in the whole world determinate has killed me its gutting she was only 60 and she wanted to go on little holidays with me after we lost our dog as we have supported each other through so many losses. The world is so cruel and unfair and the pain seems too unbearable I have no reason to carry on. Just emptiness and pain . I lived with her at the hospice for over 3 weeks and she always thanked me and told me don’t ever leave me tray. I never did and never would. We were each others world and so alike. The light has gone out of my life I just feel overwhelmed and anger at the injustice of it. I’m so sorry about the loss of your parents any time at any age will always be too soon and so painfully. It was only feb so things are still very raw grief is a very strange horrible thing and so very very painful beyond words. I hope you have good support and people around you ? As that means a lot. I’m so exhausted with everything but this pain is unreal unbearable and I feel I must still be in shock and not fully hit me about mum I still feel like can go in her bedroom next door and she will be there saying hi tray and all the lovely things we said. It kills me. Love sent to you . With love . Tray x

Oh Honey, Im so sorry to hear that. Nobody understands how this feels unless they go through it do they?
I thought I would be feeling better by now, but in fact it feels worse.
I go into their house and just lay on the bed sobbing, it’s the place I feel closest to them. They had the same bedstead since they got together in the fifties. We all used to jump on them Sunday morning as kids, and would laugh our heads off.
I miss them terribly; as I’m sure you do your lovely mum.
Completely irreplaceable, that’s what I always say. Sending lots of love x

Tray, I am sorry to hear of your loss. It sounds like you are in shock and you have been nursing your mum for sometime so there is an emptiness of her no longer being there and the love that you had for her. Have you got support from friends and family? I can understand that you are angry at the injustice of it all and feel the light has gone out of your world. Take care

Hi Louise,

So sorry to hear about this and reading your post really rings true as I am in the same position at the moment - my mum also had primary breast cancer, from which she recovered, only to be diagnosed with secondaries in the bone 5 years ago. After a long cycle of (successful treatment), the drugs stopped working as we inevitably knew they would, and the decline since that point has been very quick. She was moved into Sue Ryder almost two weeks ago, which is absolutely the best place for her to be - staff and care here absolutely unparalleled and fantastic, but it has been difficult to see such a sharp decline. We had been told we would have her until around Christmas, but on Sunday got a call that we should all come in and be with her as she wasn’t expected to live - we were told final hours or days.

Since then, we have also been living and sleeping in the hospice, thinking each day would be the last and to be honest, praying it would be as she is no longer conscious and has suffered through so much already.

At the moment, I am desperate for this experience to be over, but also afraid of how I will feel once it is. Feel like my mum has already gone from me, the person she was and wanted to be taken away from her and from us.

I know she feared this end, hated the thought of us being at her bedside, waiting for her to die. And here we are, day in day out, all powerless to do anything to help her.

You talk about the things your mum will miss and that’s the most difficult for me too - the injustice of it all is very painful; I want my mum to be at my wedding, see grandchildren, enjoy the retirement she worked for all of her life, travel, enjoy her family…63 is too young.

No one deserves this horrible, slow, undignified end.

My heart goes out to you, hope you find some comfort in knowing that you’re understood.

x

Hi T,

Thank you so much for your message - you show such strength writing that at what I know is an unbearably hard time for you. What you describe, I remember my own experience of this as if it were yesterday, despite it being almost a year ago. I am so sorry you are going through this with your mum. Right back at you, you are understood, and my heart goes out to you and your mum. How are you doing today? I hope you are managing to eat and get some sleep. I’m here if you want to chat some more. Thinking of you and your mum.

Love,
Louise x

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