How to recognise end stage chronic lymphocytic leukaemia?

My 85yr old grandma was diagnosed last summer, her symptoms are worsening and I'm terrified we're getting close to the end. My mum died just after Christmas and I cannot bear the thought of another devastating loss just yet. I'm pretty much caring for her so I see her several times a week and she seems to have got a little frailer every time I go round. She falls asleep at the drop of a hat, I think she spends the vast majority of her day sleeping and she's even fallen asleep on a stool while lighting her gas fire and then slipping off the stool when she woke disoriented (sure done this a few times and I've had to go pick her up off the floor!). She's barely eating, she has regular diarrhea (usually lasts a day every couple of weeks maybe? But currently she is on day 3 of this bout), possibly the most worrying is she has started bleeding. It was at first just vaginally (she had a hysterectomy many years ago) but a few days later she's now bleeding on/off from everywhere except hey eyes and ears (so nose, mouth, vagina and anus). She says it's not a lot but it's still concerning. 


She's also mostly still as sharp as ever but starting to get confused over simple things such as days of the week and forgetting items she's asked me to buy at the shop for her. She gets a lot of mystery aches and pains for no apparent reason and she struggles to walk because her legs hurt. She gets extremely breathless just walking (or shuffling, really) from one room to the next, (although not sure if that's to do with her heart condition, she has a pace maker for atrial fibrillation). When she told me about all the bleeding I tried to make her call 111 for advice but she refused saying she 'couldn't be bothered to wait on the phone, and she's been referred to be seen anyway.' (She went to the GP last week about the diarrhea and she mentioned the vaginal bleeding so he urgently referred her to gynae for suspected cancer)

She is due to see a haematologist but she couldn't go to her blood test last week because of the diarrhea so we're waiting on a new appointment for bloods. 

i feel so lost and out of my depth, dealing with this. I don't know what to look out for, what to expect or what I should do (if anything) to try and get her seen asap!

  • Hello Amusedoctopus and thanks for getting in touch

    I am very sorry to hear about the loss of your mum last year, this must be such a difficult time for you. It sounds like your grandma is very poorly at the moment and it is understandable to be worried about her.

    If you have concerns about her safety, being on her own and there is no family or friends who can stay with her, this needs to be raised with her care team. It sounds like your grandma needs to be properly assessed and referred to other services to give her and you the support you need.

    Whilst you may not want to go behind your grandma's back it is important that your grandma is aware of how concerned you are about her and her safety. Ask her if it is okay for you to contact her GP to talk through the changes in her health and deterioration to see what can be done.

    It does sound like your grandma is having some worrying symptoms that could have some serious causes. Whilst she has been referred to some specialist services I can't say how quickly she will be seen or have some answers to these.

    Unfortunately, no one here can say what may happen in the short or longer term but it sounds like you need help sooner rather than later. If you are unable to speak with the GP then do call NHS 111 on your grandma's behalf to get their advice.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Best wishes,

    Naomi