Struggling with caring for mum.

Just need to tell someone, mum has lung cancer and its in her lymph nodes aswell.she was diagnosed beginning of March she has refused treatment,she is in bed all day and night only waking up to go to the toilet,with my help she can't even stand up on her own.the last days have got worse oh she calls out at least 10 times I. The night I struggle but manage up until last couple of nights, my bathroom is downstairs so I get he  out the bed which is downstairs into a eh wheelchair then into the bathroom she can't even do her own underwear on an off .but now her legs are just not holding her weight I be got her to a standing position but then her legs just fold I'm telling her to stand but she can't she doesn't seem to understand why I can't lift her. I don't know what at the next step is, like if she can no.longer get out of bed what happens about her going to.the toilet?  Also quite often we get in th e toilet and she don't actually go.

  • Hello Sath,

    That sounds so difficult  having to take her to the toilet so many times - your mum must be so grateful to have you by her side and it must be so hard for her too. I hope some of our members who have been in a similar situation will be along soon to share their experience with you, what the next step was for them.

    I just wanted you to know we have asked our nurses to comment on your post and they will respond in the next few days - though they are not in the office over the weekend.

    If you wanted to talk to them on the phone,  you can ring them on this free number 0808 800 4040, Monday to Friday, 9am to 5pm.

    How have the last few days been for you? I hope you are ok and not feeling too tired as a result of the disrupted sleep.

    Best wishes,

    Lucie, Cancer Chat Moderator

     

  • Hello Sath,

    I am very sorry to learn about the struggles you are having in looking after your mum. This must be very difficult for you.

    I think that you may have reached the stage where you probably need some help in looking after your mum. Many people are reluctant to ask for help, but very few people are able to care for someone with advanced cancer entirely on their own  Not only is it physically and mentally exhausting there are often practical issues as well.

    I do not know if there is a specialist palliative care team involved in your mum’s care, if there is do tell them how things are and ask what help is available and how you access it. If your mum does not have any input from a specialist nurse or palliative team, you could ask her GP to make a referral.  But this might take a little while to arrange. So do ask how long things might take.

    If it is going to take time or things have deteriorated to the point that you are not coping or you think that this might happen soon, contact the adult social department at your local council. Stress that the situation is urgent as your mum’s needs have changed to an extent where you cannot easily look after her on your own. They can make an assessment of her needs and you should be able to get some help with your mum’s care.

    Quite how much help you get will depend on the needs assessment, But you may get help with washing and dressing your mum. The social services department may be able to provide a commode by the bed. This would still mean getting out of bed but this will require less effort than getting into a wheelchair and then getting out of it to go to the toilet.  If your mum was totally unable to get out of bed she might be able to manage a bed pan. There is some very good information about helping with toileting on the Marie Curie website which covers this here.

    When people are very near the end of their life support may be available from Marie Curie Nurses or Marie Curie support workers. They come into the home often at night for a few nights a week.. This allows the main carer to get some much needed sleep. You can read more about this here.

    Also if family and friends are offering to help, do take them up on the offers as you do need some respite if you can get it. Taking time out will make you stronger and better able to look after your mum.

    If you think that it might be useful you are welcome to telephone  the nurse team as it can be difficult to give a lot of detail in a forum post. Our freephone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am to 5pm.

    Kind regards,

    Jean

     

     

  • Hi Sath, 

    Sorry to hear about our problem. We got a commode so my mam can go to the toilet. 

    Would that help?

    Sorry just an idea.