Hi new here. Mum got her diagnosis last Wednesday. We're all reeling from the shock. She has been offered chemo to.proling life a bit longer. She's having a major wobble about having it done as she is already so fatigued with AML she's not sure she's strong enough. Also feeling very isolated as she has sensory disabilities (deaf/blind) . Dad is profoundly deaf and is struggling to comprehend the seriousness of it all. I'm trying to care for both of them (Mum does everything for Dad and he is unable to do for himself when she gets worse).
I have a basic care plan in place for them starting next week from Adult Social Care (morning amd evening) but I don't think its enough and if she decides to have the) chemo, what happens through the day when she's back at home? My dad can't cope with her feeling sick and ill.
I haven't found the nurse on her cancer team particularly helpful and they just want to know whether she wants chemo or not as they need to know! Can a nurse come out to her at home post chemo? How.does this work? Who sorts this? Hospital or GP.
We don't know prognosis of how long she has left without chemo and how long with the chemo. 70% of her bone marrow is affected already.
I'm floundering! Help! Mum is 79. Dad is 81.
Thanks for listening and any advice would be most welcome.
Hi JoM and a warm welcome to this corner of the Online Community although I am so sorry to hear about your mum and indeed the challenges you are facing. I am Mike and I help out around our blood cancer groups.
Care plans like this are at times complicated and will often be different across health boards.... I have no experience in this.
The challenges you are facing are very specific and at the moment there are not many people in this group dealing with these specific issues but could I suggest you join our main Carers only group as you will connect with others supporting family and friends and can talk with others who are dealing with the same challenges - regardless the type of cancer.
Could I also highlight the Macmillan Support Line that is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too.
This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
