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Mum is terminal - struggling to hold it together

Leanne1984
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Hi, first time posting and just looking for some support and advice. 

My mum was first diagnosed with SCLC about 2 years ago, chemo worked wonders and pretty much iradicated the tumor in her lung. She refused the offer of radiotherapy after her chemo finished as was told it was just a precautionary measure, as much as i wanted her to have the treatment i understood why she chose not to. 

Unfortunately she developed secondary brain metastasis, she has had radiotherapy but unfortunately it didnt work, and has spread to her bones also. She suffered a seizure and developed sepsis so the decision was made to withdraw treatment which we know was a possibility. 

She now has weeks maybe months left. I live about 100 miles away and travel down every weekend to be with her but i feel so guilty that the day to day burden falls to my dad and brother, i have young school age children and a demanding job and struggling to copemwith everything and stay strong for everyone. I feel useless. 

My dad is not coping very well as mum doesnt sleep too well amd is now too weak to get up the stairs so sleeps in her chair, we have ordered her a sofabed in the hopes she can get at least some sleep. I have got her a panic button in case she falls or has a seizure when my dad is at work but i just feel i should be doing more. 

I feel like i have to be the strong one all the time because they need me to be strong, if i fall apart then there is nobody to look after them, i cant get upset arounf the children as i dont want to scare or upset them. 

What makes it wrose is that my older brother hasnt spoken to us in years, even though he only lives 5 mins from my parents. My mum talks about him all the time and its heartbreaking that he wont c9me see her to kake his peace with her, she hasnt got long left. I think i should go see him but my hisband is worried that i am too emotional and will make things wrose but i cant not do something, i cant bear to see mum upset, she already has so much to deal with. 

Sorry for the rant, i just felt like i needed to write it all down. 

Thanks for listening x

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    Hi my love.

    Firstly my heart goes out to you all at this news of your poor mom's illness. I totally understand as my Dad has terminal cancer too but we only found out 7 weeks ago & he's already very close to the end. 

    If it was me, I would write a letter to your brother, explaining that your Mom is talking about him, and he might live to regret not making up with her. I always find writing it down, like you have done on here sometimes is better as you can put how you feel without anyone interrupting or having a go. My dad's illness has brought me & my 3 sisters closer again, which is a shame it's taken this to happen. 

    You say about your Mom sleeping in chair or sofa bed? Can you not get help for a proper bed for your Mom to have downstairs? I would speak to Macmillan as they can help with SO much, finances, Support plus a lot more that people don't realise .

    Sending you love, prayers & hugs. You need to look after you too & your family. There is only one you & if you are ill trying to be there for everyone who will be there for your children? Don't spread yourself too thinly or you will end up suffering hun 

    Message me if you want chats, rants or just to offload things xx

     

    Love 

    Josie xx 

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    Hi Leanne,

    I am a new user but I am sure you will get much support from this site. I am very sorry to hear about what your mum is going through but you are doing so much and especially living so far away, I dont know how you do it, your mum has an amazing daughter. You mentioned about a sofabed to help, you may have these details already but if you google NHS Household equipment, might help?

    I hope you are able to reconcile matters with your older brother, its easy for people outside your situation to offer advice, we're not going though what you are, but I hope it works out.

    Take care x

  • Offline in reply to Linda63

    Leanne,  don't feel useless, my two daughters live hundreds of miles away, school age children,  jobs and daily living.  I have never expected my daughter to drop everything and come to our aid.  We're the parents so we don't want to burden you.  You're doing all that you can and she is being cared for, so stop feeling guilty, love your Mum and she knows why you can't be with her all the time.  Don't fall apart  as others need you as well.  Take care of yourself as well.   Lots of others are going through this so you're not alone on this forum.  Best wishes, Carol 

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    Hi if you live in uk try ringing local haspic .they have pallativ care teams that come out and assess your mums needs you may have to be referd by mcmillan they can help get stuff to make your mum comfortable also pain releife etc you may be getting it but thaught i would mention it its a post code lottery realy we were lucky if you could call it that . My love contracted sepsis and lasted two days but try theres lots of help out there and on here unfortunatly you have to go out and find it . Best wishs paul ps you need a ds 1500 form the dwp will come out and fastrack for benifits your entitled two hospital should have given you one 

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