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Care givers advice 101

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almsalms Total Reaction Points: 0
edited February 2017 in General advice
Hi everyone,
Hope you are all well.

My mother has been diagnosed few weeks back with CLL and I was a bit blown away with the news.
I got to know 3 days ago and since I've been trying to find ways to help and cope.

What are the three most important things that you would advice for me to take action on?
How do you advise I discuss with my mum about it without being too overwhelming for her?

Many thanks for all your support.
Kind wishes,


  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 281
    Hi Alma,

    Welcome to the forum, and in terms of help and support you will find lots of it here for a start. I'm one of the community forum champions and have gone through a transplant myself four years ago for ALL so I can give you a patients perspective on help and support.

    There is some good advice on the Anthony Nolan website for family and friends that you may have already found. https://www.anthonynolan.org/patients-and-families/support-parents-family-and-friends/my-family-member-or-partner-having. That's a good starting point I guess, but it would be worth speaking to your mum and see what help she needs.

    From my perspective it was useful to have someone who could help with practical things outside the hospital so that I could concentrate on my treatment. Before I went into hospital I showed my boys how to cut the grass so that my wife didn't have to worry, and arranged for my dad to come and sort out any odd jobs that I wasn't there to deal with. So, whilst your mum is in hospital she might need things doing around the home, and will certainly need some assistance when she comes home so I think the first thing is to see what practical help you can give her to make sure she's not worried about things that others can deal with.

    Secondly of course you will need to give her emotional support and help her get through this. It will be a shock to you both and probably bewildering at the moment, but by staying positive (no matter how hard that seems) and reassuring your mum that she can beat this illness it will help in the long term. Personally I didn't want sympathy and much preferred people helping keep my spirits up.

    The final thing I'd suggest is to act as a conduit for communications to the outside world. Your mum might not want lots of different visitors and there will be times that she wont be able to see to many people due to her immune system being low, so being able to communicate how she's doing to others rather than her being inundated with calls and messages will allow her time to concentrate on her treatment. She may want the contact though to take her mind off things but there will be times that she is tired and having someone that can field the questions will help her.

    One thing I would say is that we are all different and the support your mum needs is probably different to that which me and other might have found useful. Be guided by her as to what she needs.

    An important thing is to remember yourself in all of this and whilst it is your mum going through the treatment you also need support, so make sure those around you are helping you and don't be afraid to ask for support at the hospital for both your mum and for you and your family.

    We are also here to support you and your mum and there is a wealth of experience here.

    Best wishes to your mum and you.

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 78
    Hi Alma,

    Thank you for posting on the forum, I am the nurse specialist in the patient services team. I am sorry that your mum has had a diagnosis of CLL, this must be a shock for you all.

    Steve along with the other community champions and members are great at sharing their experiences and providing support for each other and I am sure that you will find this really helpful. It can be overwhelming when a family receive a diagnosis such as this, take it one step at a time and give yourself some time to understand what the diagnosis means and what the next steps will be. It is different for everyone when they receive news like this and really you will be the best judge of how well your mum is coping. If she is happy for you to do so maybe ask to attend an appointment with her and you can speak with the doctors, it might answer some of your questions and help you gauge how your mum feels. I always think its about balance, talk about the diagnosis and what this means for her and you as a family but also remember she is still your mum and wants to do the same things as before and have the same interest etc. so its important to try and keep some normality.

    Your mum should have met or been given the name of a clinical nurse specialist and they will be a good contact and source of information. A CNS's role is to ensure the patient and family understand the diagnosis and guide you along the pathway explaining the treatments and options. They offer support and might be a good place to start for you all.

    Anthony Nolan provide information about blood cancers but Bloodwise and Leukaemia care are also blood cancer charity's that you might have also heard of, they offer on line support and written information and I would recommend having a look at their website https://bloodwise.org.uk/ and http://www.leukaemiacare.org.uk/

    I hope everything goes well for your mum, please feel free to contact us anytime and keep us updated on the forum

    Best wishes
  • almsalms Total Reaction Points: 0
    Thank you so much to you both.
    A lot seems to have happened in the past days since I found out the news...

    I started making a lot of to do lists, a food diary and symptom diary for my mum, reached out to a support network of family friends that I am trying to get organized to be close to her.
    We don't live in the same country unfortunately. I am based in London and she is based in another country so the reality is a bit different there. I managed to get an agreement from my company to work remote 1 week a month or so ... and that feels a bit better.

    I read that Antony Nolan connects 50 registers worldwide to find matches for people in the UK and provide stem cells for people in need abroad... I will call the team to ask more information about it...

    I was trying to figure it out - maybe I'm too confused with all that is happening but thought I'd ask here:
    Are there any meetings planned with support groups that maybe you can advise joining?

    Thank you for your thoughts!

    I also registered to follow 2 support groups:
    - The truth about cancer, Ty Bollinger
    - Square One , Chris Wark
    They provide interesting information.
    Do you know more of them? Any thoughts on that?

    Many thanks everyone
    Kind wishes,

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 78
    Hi Alma

    It must be hard with your mum being in another country but your steps to help are positive. Stem cell transplant is not a routine treatment for CLL and many factors have to be considered first, have they told your mum she might need a transplant? If she were to need one, the transplant registry of the country she is living in requests a worldwide search of donors then the Anthony Nolan register would be included. I agree that when you are able to see your mum and maybe meet the doctors, talking to them might help explain what the treatment plan is for her.

    Unfortunately I have not heard of the support groups you have joined so cannot comment. If you are looking for local support groups I would recommend looking on the Macmillan Website http://www.macmillan.org.uk/information-and-support/index.html

    I hope everything goes well for your mum

    Best wishes

  • almsalms Total Reaction Points: 0
    Thank you Hayley this is very helpful
  • SuePSueP Total Reaction Points: 57
    Hi Alma,

    I have spoken to my husband about this as he was my main care giver. He said:

    Always be positive. Never let there be a shadow of doubt that the patient will come through this.

    Make sure you or someone else attends the clinic appointments with your mum, perhaps armed with pen and paper, as there is so much to take in. I know from experience that the patient often mishears what is being said.

    Give practical support - get someone to do shopping, cooking etc if necessary.

    It will be tough - for both the patient and the carer, who has to watch the impact of any treatments on a loved one. Look after yourself as well!

    Wishing you and your Mum all the very best,
  • almsalms Total Reaction Points: 0
    Thank you so much Sue this is great advice and I really appreciate it. It's so heartwarming to read replies to my post. Thank you
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