My mum was told she had myeloma after a fall which resulted in a broken tail bone. She is a few weeks away from her 90th birthday and says she just wants to die she has refused chemo and steroids and now the pain meds arnt really helping. She refuses to go into hospital and wants to die at home. We are all ok with this but everyday she is on the phone to me crying about her pain but refuses to take all of her pain meds as they make her a bit dizzy and she is scared she falls and breaks a bone and ends up in hospital. I don't know how to deal with any of this she has a carer who goes in every morning to help her have a shower and I go down in the afternoon. There are no nurses or doctors seeing her at home but she goes to the hospital once a month I don't know what her prognosis is as they dont seem keen to give us one so I don't know if she is nearing end of life or if she has a year or so left. I'm not coping at all well with any of this I am an only one so it's all on me. She doesn't seem to understand that seeing her in tears all the time and wishing she was dead really upsets me. Sorry for going on so much but apart from my husband there really isn't anyone else to moan to
Dear hazel, I am so sorry to read of the situation you find yourself in. Given that your mum is adamant that she won’t except treatment I would have expected that she would be referred to palliative care services ? I’m not surprised she is in pain and this will have to be addressed one way or another. Myeloma is a very individual disease and prognosis is difficult but untreated it will inevitably progress and symptoms will increase. Do you think she would be prepared to allow a community Macmillan nurse to visit her at home to discuss her pain control. myeloma uk have a information line that is manned by experts which I would urge you to call.
I'm trying to organise a paliative care nurse through my gp they have contacted the district nurse who I assume will come out to see her and assess the situation I just feel I need information so that I can work to some kind of plan. I've never been in this situation before as my dad dropped dead in the street so there was no illness pain and uncertainty. I just thought that her up and the district nurse would have been monitoring the situation. I will look into the myeloma information line thank you
Dear hazel, it’s good to hear that contact with palliative care is in the pipeline, things should improve after that visit. If you read my profile you will see that I have benefitted from these services and you are free to private message me if you want to ask me any questions about palliative care.
I absolutely can understand how you feel about having no one else to turn to. I’m also an only child and my dad has completely and unexpectedly been diagnosed in the last month.
All I can say is that your not alone when you feel like your not coping. My dad starts his chemo on Friday and whilst I can cope with the cancer, he seems like he’s aged so much in the last month. He’s so down & I’m struggling so much seeing him like this.
I hope you’ll be ok and never apologise for going on. X
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