Coping

My mum is receiving end of life care and gets weaker by the day, but not in pain, but it's like she's given up. She won't let me read to her or play music or watch anything, she just wants me to sit there. I cannot seem to lift her at all and I have no idea what to do any more; I do everything I can but I'm really struggling.

This post sounds like I'm complaining but I'm not, I just want to know if anyone has any ideas of what I could do or advice. Sorry and thank you.

  • You know, as a carer, it's ok to vent or complain. I think most of us have done venting at some point. The best advice i ever got from someone was "just listen". You can't fix anything, she obviously doesn't even want you to try and fix something you can't.  Just be there if she happens to talk, and just listen.

  • Hi, 

    My nan became abit distant towards the end, then delirium set in and she couldn't stop talking and as sad as I was because I knew the infection was taking hold, I was overjoyed to hear her speak so vibrantly, 

    I'm so sorry to hear your going through this, maybe try to talk about things you know she loved. 

    In my nans final days I just held her, I told her I loved her and I was sorry this was happening to her, 

    Can I ask is your mum Bedbound or can she still move around? My nan was Bedbound, I was a carer on my own so couldn't move her to take her out, we had carers come in who helped me turn and move her when needed and help me wash her. 

    But about 4months before she died I had an opportunity to get her out the house so I did, I took her to the zoo with myself and my children, and I'm so glad I did, health professionals weren't so pleased but we had an oxygen tank, a mobility car, and my nan wanted to so I didn't care what they think. And I'm so glad I did. So if you could get her out even a trip to a cafe or out to lunch a change of scenery could be good. 

    Kind regards 

    Cassandra 

  • My mum is also terminally ill with breast cancer and has been living with me for the last 3 months and I am her main carer and even though i have help from the hospice team who are wonderful and visit daily to provide painrelief and care, I still am struggling. I promised her that I wouldnt let her go into a hospital or hospice as with these covid restrictions we wouldnt beable to be by her side and I will keep my promise but i know Im excausted which doesnt help

    Mum wont eat and drinks water via a sponge only and has done for the last two weeks, how long can someone suffer for so long. She becomes very distressed a night so I now sleep next to her in a chair every night so I can hold her hand and be there. My issue is when mum tries to communicate with me, my response is to break down in tears,im meant to be strong for her but im a quivering wreak. I tell her I love her and Im there but she needs me to be strong but Im crumbling all the time and I dont know how I can get stronger for her on her final days. Ive always felt I was a strong person but I see now im emotionally very weak,how do others manage to keep strong for their loved ones

  • My mum is bedbound now and it now takes two of us - my partner and I - to get her to the commode, so sadly we won't be able to get her out of the house. I so would love to have done that for her but she went downhill so quickly, and we are now at the stage where we wonder if it will be her last day. Much as I don't want to lose my darling mum, I cannot bear to see her as she is especially when she gets so distressed.

    your Nan was lucky to have you and will have known how much you loved her.

  • I share your pain; it is so distressing to see my mum so upset. I'm lucky that I have my partner with me who lets me leave the room so I can just have a few minutes to compose myself. Don't be so hard on yourself, it is hell to see your mum suffer but equally she is as upset as you because she doesn't want you to be hurting, my mum has told me that. You are stronger than you think because you are there, and are doing amazingly. Nothing prepares you for this, but when she is sleeping, take yourself out of the room and just have 5 minutes for you, if you can.

    Like you, I wonder how long they must suffer and live as they do. Do you have crisis medications? If you can get something like midazolam given to your mum at night, it really helps with the agitation and calms them and helps them sleep. And when she does, you must too. I try but yes, exhaustion is like never before, even with 2 children. 
    If no one else is telling you, you are doing an amazing job, even if it doesn't feel like it. I feel so emotionally weak but am still carrying on, so I guess we are stronger than we realise. Take care.