• Posts: 11
    12/02/2015  09:53

    This seems really strange for me to be writing down what is happening to my dear husband,and  maybe I am not really entitled to join this page, as although my husband has CLL ,Three and a half years ago we were was told he had severe heart failure and only had MONTHS to live. It was like our world stood still.  Sadly he is now under Palliative Care,and they are all wonderful people, but it is like being in a bubble waiting for it to burst, and such a lonely place , even though our Daughter is wonderful help. Thank you for listening.

  • Community Manager - Posts: 120
    12/02/2015  16:04

    Hi Jaci I wouldn't worry about if you should be posting or not, the community is here is for people just like you. Happy to listen and hope we can help make things a little less lonely.


  • Posts: 1
    12/02/2015  18:24

    Hi Jaci, I completely understand you feeling as though you are in a bubble, I felt the same way when my mum was in Marie curie.  I didn't know how to feel or what I should do except just be there for when mum needed me - the Marie curie team were amazing, so caring, patient, kind and compassionate, nothing was too much trouble for them.  They are wonderful people 

  • Posts: 11
    16/02/2015  15:17

    Hi Mark and Elsieslass,

    Thank you for taking the time to reply. To Elsieslass I am sorry for your loss,but pleased you got such great support.

    As I said this is all new to me but I am feeling really low at moment,and everybody means well but unless they have been in a similar position it is hard for them to understand. Even though it is hard looking after my dear husband at home, i would not have it other way, but some friends keep saying it is too much for me. I really dont need to hear that,as it is my choice even though it is a strain. Also it is so hard trying to enjoy the time we have left together,knowing any minute it can all be taken away.

  • Edited by: MarkWilkin - 17/02/2015 19:00

    Hi Jaci - 

    I picked up a routine email from Marie Curie and noticed that it was introducing a forum for those involved in some capacity, with terminal illness. I then noticed your post and felt compelled to register as I am just starting to feel brave enough to read of others similar situations x

    As you will note from my username, I am a daughter but very close to my mum. Between us both, we cared for Dad (with the support of palliative staff) at home. He was a heart failure patient who, after two bypasses spanning 25 years, had the HF diagnosis 3 years ago. I now understand that Heart Failure palliative scenarios and all those involved are possibly in a club all of their own? If you need any support or advice on an emotional level, please feel that you can private message me - if mum and I had had an outlet, we may have taken advantage of it xx thinking of you, be gentle with yourself, go with the flow, don't look back or beyond x lots of love 

    Ps I'm 45, my dad was 73, my mums 72 x

    MarkWilkin: edited as we recommend using private messages rather than sharing email addresses. Thanks

  • Posts: 11
    16/02/2015  20:43

    Dear AndreaDaughter,

    Thank you so much for your kind response,and I am so sorry to hear of your sad loss. You obviously have been a tower of strength to your Mum,as our daughter is to me, but you are so right that everything surrounding HF is in a club of its own.,and is very rarely talked about.

    Thank you for your offer of advice and support on an emotional level,I would like that very much.

    I am so pleased you were brave enough to make contact,and maybe we can help one another,as it is many years since I lost my Dad,but I also nursed him. We were really close as my Mum died when I was only 14yrs old.

    I am sure you and your Mum will be a great comfort to one another.

    Thank you again for your words of encouragement,it means a lot.

    Lots of love.