Mum just seems to be so tired all the time

Hello all - this is the first time I've posted on here although I regularly read the information and have called the helpline for advice. My mum was diagnosed with stage 4 nslc in May 2013 - she's 80 now and to be honest I think we're all quite surprised at how resilient she's been. She went downhill very quickly initially and has lost over 5 stone in weight since May as the tumour makes it hard for her to swallow and she eats very little/very poor appetite in addition to the problems of swallowing. She had two rounds of chemo and one course of radiotherapy in the summer but all treatment has now been stopped as they say there is nothing further they can do. She was told by the consultant last week that there's no point in her coming to the clinic any more and that she is now to rely upon the hospice nurse (who visits every fortnight) and her GP. My mum is of the generation who don't like to 'bother' the medical professionals and usually just says "she's not too bad" in answer to their questions. She knows there is nothing else they can do but it's just so sad to see her resigned to her fate. She is increasingly tired - often not getting out of bed until lunchtime, she has severe stomach pains particularly at night (not sure if this is due to lack of food or perhaps the cancer has spread), she's so quiet. We struggle to find things she can eat and keep down - the high-cal drinks prescribed by the doctors usually come straight back. I'm not sure what I'm asking really - is this it, the beginning of the end? We just don't know what to expect next. My poor Dad is also 80 and is her main carer - he's finding it very hard to cope 24/7. I live 40 miles away and am unable to visit every day, but I usually go over twice a week. I speak to her several times a day on the phone and try to keep her spirits up but it's so hard. Has anyone got any advice? Sorry to ramble on it's my first time posting on here.

  • Hi kah,

    This situation can't be allowed to continue without some more outside help. A nurse visiting once a fortnight just isn't enough for either of your parents, and you sound worried sick yourself. Your mother is entitled to personal care (washing, etc.) and even a hospital-type bed and a commode from Social Services, which could be arranged either by going direct to them, or via the GP or Hospice. It also sounds as if she needs some extra pain relief at night, and your father certainly needs to know he can have a decent night's sleep without worrying, so a Macmillan or Marie Curie nurse ought to be next on the list. I'd recommend a call to the Mac helpline tomorrow to discuss all this.

    I can't tell you if your mother is nearing the end, but as she's barely eating, is very tired & is in pain, it seems more likely than not. She's done remarkably well to come this far after having a stage 4 diagnosis at her age, so her determination & resilience may well keep her going for a while yet. Maybe that's something else you could talk to Macmillan about?

    Sorry I can't give you specific help, but I wanted you to know that someone had seen your post and was here for you. I think the next thing to do is join the Carers Only group here, where you'll be able to ask questions & get advice & support from people in similar situations.

    Take care of yourself,

    Love & hugs, Twirly xxx

  • Hello Kah,

    Not much to add to Twirly's excellent advice as usual.  Just wanted to give you moral support. 

    Having recently lost my Mum (not to cancer - she was 90), what many people don't realise is that it somehow doesn't matter what their age - we care for them and  love and miss them just as much and it sounds as if you are your doing your very best to ensure that your Mum and Dad have the care they both need at the moment.

    My own Mum was confined to bed and had a carer visit three times a day until he needed to be in a care home for a short while before she died.  Daily visits by carers sounds like the minimum needed to help your Dad cope in such very difficullt circumstances.  

    For people not suffering from cancer, Social Services will arrange a visit to assess a persons needs.  Not sure how the system differs for cancer patients but no doubt the Macmillan staff will point you in the right direction.

    Wishing the best for you and for your Mum and Dad. 

    Scottie xxx