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 work full time and have had to take time off work. It isn't sustainable!
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
So sorry to hear about your mum and totally get the idea of shock - indeed anyone in this circumstance would be very exceptional to be anything else.
There is quite a lot of information about AML and it's treatment here . I would guess the hospital may be struggling some with the idea of getting informed consent from your mother. One thing I am sure of is they would not offer chemo if they did not feel it would probably be helpful but of course it does not come without risks.
From what you say I wonder what would happen to your dad if your mum say had to go in to hospital, it may well be he might find resources he never knew to had - after all who does not like having mum look after them!
For us when we needed a nurse to visit at home is was arranged by our GP but this was post surgery as my wife recovered at home and even then they tried to get us to go to the surgery. It is very unusual for adult social care to offer more than 4 visits a day as at that point the usual suggestion would be a care home.
It does sound like the bulk of the care may fall on you and in that case you would be entitled to a carers assessment from Adult Social care. It can be very difficult to get the balance just right.
<<hugs>>
Steve
