New here and looking for advice!!

  • 2 replies
  • 35 subscribers
  • 198 views

Hi all 

I am new to the forum and new to looking after someone who has a terminal diagnosis and in all honesty I feel out of my depth on what I can do.

in short my mom has been given a terminal diagnosis, she is currently at home and is bed bound, over the past couple of days I feel like things have deteriorated quite significantly- mom is sleeping loads and even in mid conversation she falls into a sleep she is also having bad bouts of confusion and not making any sense. I’m not sure what I can do should I call our community MacMillan nurse out for an assessment/advice or is that not something they can do? 
I feel completely lost and don’t know what to do, I’m not 100% sure what the MacMillan nurse are there to do I don’t want to call them and ask them to come out if it’s not something they do!

sorry I sound totally useless as I should know

thank you in advance for any advice/guidance you can provide

  • Hi  and welcome to the Macmillan Community but so sorry to hear about your mom's diagnosis.

    A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot.

    This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your mom and indeed yourself you may benefit from joining and posting in our 

         Carers only 

         Supporting someone with incurable cancer

    ……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

    Please do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Shaz30, I am truly saddened to hear about your mum and the difficulties you are experiencing, a situation which I have been through o understand what you are going through. Shaz call your GP and ask for a referral for the district nurse, the hospice and their palliative care team, they will be able to support both your mum and you, making sure your mum is as comfortable as can be, controlling any pain and arranging any specialist nurses, equipment and supplies your mum may need so she can make the most of what time she has, and they will show you, how best to care for your mum, Shaz the hospice and palliative team are there for people with a terminal diagnosis and not just for those at end of life, I am terminal, and have had the support of hospice + team for a year, best wishes to you and your mum.

    Eddie xx