Mum is dying at home - I am devastated

Hello. I have never posted to a forum before but really need to hear from others who might understand. 

Mum's breast cancer which was treated last year and at the start of this year seemed to be under control and then in August we found out by a really cold and quite heartless letter (due to covid) that it had likely spread to liver and bones. We had to wait a month, until a week and a half ago for her to see the oncologist, by this point she had been in hospital for three days as an inpatient as she was very confused and seemed ill. She was only allowed one person in with her during the oncologist appointment, due to covid restrictions and we even had to fight for that as they expected her to go in alone - totally cruel. Mum was terrified and very poorly with an infection on top of what we know now, the cancer having spread.

She was told they could treat her and extend quality of life with treatment and we were sad but relieved that we would get more time with her.

As she was an in patient last week, due to covid visiting bann in hospital, we werent able to visit and had to put up with calls when she answered the phone. Some of these calls were lucid, others, she was finding it hard to communicate coherently. It was very stressful and she really wanted to come home - it felt very cruel that they kept her in, not allowing any visitors and not updating us on her condition without us having to chase it daily on the phone.

Last Monday my sister got a call when she was out at a restaurant to tell her that a further scan showed that cancer had aggressively spread to the brain and liver and bones and treatment was no longer an option. We were all devastated and again, had to spend the next day chasing various hospital departments trying to get answers and updates via phone. It was all very impersonal and cold, they didn't break the news sensitively and we had to work really hard to get full answers, their excuse being that covid meant they couldnt do it in person. Finally, someone rang us back and said she had deteriorated so much and was staring blankly into space and we should go in and see what we would be dealing with if she came home. They said she had only weeks to live - totally devastating news. We went in on Wednesday and having apparently been very aggitated before we came, she was calm with us and said she loved us and although was talking some nonsense and having a lot of physical ticks, she knew we were there and we were finally able to hug her and tell each other we loved each other. We took her home that evening and arranged palliative carers at home (via a hospice) twice a day and she would be in a hospital bed in the lounge. She was able to say some coherent things on Wednesday evening before sleeping and on Thursday morning. Ever since then, however, she has been mainly asleep and sedated, unable to swallow now, on a medicine driver which keeps needing to be increased throughout the day and night and is she is expected to die imminently. I just can't believe this is happening. I don't know how to process this and to accept that I will no longer have my lovely mum in my life anymore and we didn't have any time to process the news or spend any final nice moments with her. I am extremely angry at how the hospital handled breaking the news to us and that we and mum weren't given the dignity of being told in person. I am also really angry that they kept her in hospital for a week and a half and didnt allow any visitors, only to then allow four of us in there  at once, when they wanted us to calm her and take her home. We could easily have visited prior to this as they had so many staff on and barely any patients so it felt so evil to deny mum any company.  I feel so incredibly sad and guilty that my mum was robbed of that time with us. I don't know what I will do without her. I moved back in with her last year as I was going through a hard time and wanted the company and shortly after moving in with her, her initial cancer was diagnosed. I'm so glad that I had that time with her especially with the lockdown as I think she would have struggled alone. However, it also makes me think of what we missed out on as we weren't able to do much in lockdown.

My dad died of a long, drawn out range of illnesses less than two years ago and I can't believe that we are dealing with it all over again, especially as mum also had open heart surgery a few years ago and has been so incredibly brave and strong. I'm so angry that I am 37 and will soon be an orphan. We won't even be able to have a proper funeral for her due to covid limits and she was always so active in her local church so it feels like she is being robbed of everything. I just don't know how to cope and feel like my life is now not worth living. I'm single and don't know who I will have to turn to now, where I will end up living now or what the point is in my future. My mum was such an energised, social, community oriented person and I feel inadequate comparison and I feel that it would be better me dying than her as she has so much still to live for. Is there anyone else that has been through similar and got through it? Just don't know how to handle it. I'm trying to spend as much time by her side as I can handle but also feeling so drained from the stress.

  • Hi

     I am so sorry you are going through this. I am also in the same boat, ie my mum is very sick and at the moment things look very bleak. I've just turned 37. My heart is breaking and I am also in denial. Anger may be what you need right now..to carry you through. Unfortunately, no matter how sensitive anyone would have been, it's still so so painful. I am sorry they broke the news in that manner, and the only thing I can think of is to try and live through these emotions as much as you can. Your mum is still here, she loves you very much and that love is eternal. I can't even see my mum at the moment as she is in a different country and I am still fighting tooth and nail for a private treatment.. try to draw comfort that you are with her in those moments and this pain shall too pass. She will always be your mum and you are never going to be alone. You have a sister too which is great, hope you can support each other in this difficult time loads of love xxx

  • hi. 

    so sorry to read your post. I can totally sympathise with you. My younger sister is 44 with breast cancer. she has been in decline since May 2020, and she has been in hospital for 5 weeks. it has been totally unbearable. like you I had to call the hospital daily in order to get updates. her husband and Daughter are the only people who can visit her. she is end of life and today we finally got the news that she was going back to the hospice. This is what my sister would want. I am hoping to see her tomorrow but I am bracing myself because the nurse has warned that my sister has deteriorated so much. it has been a long road but I am glad that I will be with her shortly. stay strong xx

  • Thank you both so much for responding. It means a lot that you both have taken the the time to read and respond to my message, at a time when you are going through your own pain. We lost mum yesterday - we were eating lunch and the nurse came to change her medication driver and said that she could see a change in mum and it would be soon, so we went in and sat with her, talking to her and had music in the background to try and make it as peaceful as possible. I felt initial relief that mum was no longer suffering, followed by complete sense of devastation and loss. What will my family and her friends do without her? She deserves so much better than a minimal funeral and as a singing teacher and someone who ran numerous choirs and music groups throughout her life, it's so sad that singing will be banned from the service. We are talking about putting on a memorial concert for her when the covid restrictions have settled again. What an awful illness and a horrible time to be ill and die. The shock of how quickly this all progressed is something that we will always have with us I think - you always imagine if someone is terminal that you will have time for serious talks, reminiscing etc. In a way at least mum was spared some of the fear but I just feel robbed of my mum in such a cruel way.

    I wish you both so much love and I hope that your mum and sister find comfort and peace and your familes too. Thanks again xxx

  • hi. 

    I am so so sorry to hear your awful news that your mum has passed away. How beautiful that you were with her at the very end. I know there are no words to make you feel better. This is such an awful time for you and your family. I personally think the idea of a memorial concert sounds very fitting for your mum. Take comfort in that your mum is finally at peace.

     

    My sister is today being transferred to the hospice. As I said previously I haven't seen her in 5 weeks. I am debating with myself whether to go today once I know she has arrived at the hospice, or to leave seeing her until tomorrow when the nurses have got her comfortable and settled. However I am conscious that we may not have time left. 

     

    I know I will be feeling your pain very shortly, and I hope that you will be able to get through this devastating time with the help of your family and friends. Please feel free to message me anytime. Much love to you xx

  • Dear Gem,

     

    im so sorry for what you are having to go through.

    Im in the same position.

    Im 36 and in January 2019 i found my husband dead in the morning out of the blue. We had no idea he is ill and no warning. Mark is my absolute world and I am completelly devastated without him.

    i also suffer with Chronic fatigue syndrome(ME) a very debilitating ilness  and for about a year i could hardly walk to the toilet and had no help( im not British so i have no family around).

    a week ago my mum of 57 years old has been told that she her camcer came back and she has  cirosys of the liver due to her life long inflamatory condition and that she has two weeks to live.

    three weeks ago she was cooking , now she cant stand anynore, speak or do anything. I will have to return to the IL soon because im just too ill to take care of her and it breaks my heart to see her how she suffers and that there is nothing i cn do to help her.

     

    sometimes i feel i just cant take it anymore. I want my husband , i want to be healthy too and i want to see my mum happy. 

     

    It is just the most painful thing to witness your loved onessuffer and then to loose them.

     

    like you i feel i am not interested in life since my husband left and i keep praying God that he gives me  a short life,  but until its our time to go we need to carry on somehow. Find some sort of meaning, maybe meet someone and get married, maybe adopt/foster and help children, something of some sorts

     

     in what part of the UK are you located?

     

    hang on in there. Your mum departed in another dimension, she didnt die, Now she is free, loved, happy . Our life here is a journey, the other side is our home and one day we will be togethwr again, dont forget that. The separation is not forever.

     

    love nd hugs.