Advice for caring at home when my mum is clearly very unwell

Hi all

Just looking for some help. As per my previous posts, my mum was in hospital, diagnosed with lung cance. She wasdischarged on Friday, with carers coming in four times a day, becuase she's got mobility issues because of the location they have given her 5 sessions of radiotherapy on (spine). 

The NHS have discharged her, with a LOT of medication to issue each day, but the  carers were told they weren't able to administer this, so my mum became very anxious and called the paramedics as she felt she couldnt cope without having the nurses around (understandably so, she was in hospital with 24 hour care, and is now left with my family, who were told absolutely nothing on her discharge). They went through what medication to issue to her, and when so I am now taking this on myself to try and make her feel as comfortable as possible. The carers (as kind as they are) I cannot see what they are actually doing. I'm basically sleeping next to my mum on the floor, waking up with her at night, giving her pain relief, and just generally being near her all the time, and although its only day two, is taking a huge emotional toll on me to see her in this much pain. Is this normal for the NHS to do? I just cannot see how they can discharge someone when they haven't even given the full prognosis, that is struggling to do day to day tasks with very minimal help. 

Although it pains me to say this beyond words, I genuinely think she doesn't have much longer left and I can't bare to see her like this. I'm trying my best, but i am not a carer, I don't have experience in this and her appointment with the consultant is still over a week away. Any advice would be really appreciated at this time.

 

 

  • Hi londongirl151,

    I am so sorry to hear about your mum. Please know you are doing a great job. I am also looking after my mum who has stage 4 cancer and it can be very hard to be suddenly thrust into doing things that we have never had to do before.

    Have you spoken to your mum's GP?  Also does your mum have a lung cancer nurse specialist you could reach out to? Another resource I personally found helpful for me as well as for questions about mums diagnosis  was speaking to Macmillan Cancer Support https://www.macmillan.org.uk/ it is 7 days a week 8am -8pm

     

    Jess

     

    Jess

  • Hi londongirl151 

    Your experience sounds very familiar. We went through something almost identical a month ago with my mother who has since passed. Your mother may not be close to the end of her life in this world, but you both need practical help and support. The best care we received was from Marie Curie Nurses. Get in touch with them. You can contact them direct and they will tell you how to get an urgent referral. Your GP and district nurse team should also be on board. You can get referrals from them. Tell them that your mother needs continuous pain relief. Thinking of you.

  • I am looking after my mum too.  Up until two weeks ago we were doing okay, then it all changed suddenly and her mobility deteriorated.  I tried my best to keep caring for her but I needed to get help.  I spoke to MacMillan, her GP and her cancer nurse.  We got a palliative care nurse out (palliative care is support with symptoms and does not have to mean the end is near).  At first I was scared because it felt like I was letting go of her, but the nurse got her the help she needed, and things are a bit better.  I would just try and get help from everyone and you will work out what you need.  Sometimes you don't know what you need until you have it.  Finding it is trial and error.