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Sorry to post this, but I don't have a clear picture of the nurses role. We have met a Macmillan nurse, but that was a while ago. I don't know at what point to contact her or what to ask, or even what I need. I'm caring for my husband and it's quite wearing, but what would the nurse do. I can't conceive of her doing anything I can't do. I realise I must sound confused. I feel I need support, but I don't know what. I dislike the lack of control in this situation. I want someone to look at him and tell me what to do.
Like you, we to didn't know what a Mac nurse did in the begging and why do we need her.
My understanding/our Mac Nurse was there to give you emotional support and can help with pain control and medication and are a source of contact between medical staff and the local hospice.
My advice is that you need to be in close contact with your GP and district nurses aswell.
They all need to know that you are struggling and they can help with what care is available to you.
My husband's diagnosis was terminal and towards the end, we had a full continuing care package for 12 weeks fast tracked by our Oncologist - fast track took 4 weeks to put into place so not that fast.
Prescious time wasted as my husband ended up in hospital for 12 weeks when he could have been at home waiting for it all to be put into place.
I only managed to get him back home for 3 weeks before he passed away.
Our DN had offered me a carer before my husband collasped (not knowing this was going to happen to him) and I couldn't see what a carer could do for us.
Perhaps if i had off had the carers when I felt that I didn't need them then my husband wouldn't have been in hospital for so long.
Anyway, hope this helps a bit
When Dad was ill mum was put in contact with a Mac Nurse she paid just one visit and put everything needed in place, inc bebefits claims. Dad was cared for by the district nurses for 4 days before he closed his eyes. His diagnosis was just 2 weeks and 4 days till the day he passed away. So quick we were shocked, mum, myself and my 2 daughters cared for him and the district nurses came 3 times a day. we didnt have a sitter as we had all of us.
Mt partner died 9/9 our distict nurses were of more help than any macmillan but maybe this is the case nowadays. At least I have the comfort of knowing that I cared for him and looked after him at home until the end but alittle bit of help would af helped
Our Mac nurse did all the pain management for my husband. She also did the care pathway for his final days. She set the pathway up, gave me all the contact details for day & night. She liaised with the oncologist & GP when Chris decided to stop treatment. She helped us with Chris's disabiliy living allowance claim and getting his blue badge for the van. She goT the bed for the house when he couldn't go upstairs anymore. I think what they do can vary a lot but you can expect a good one to help with almost anything. I hope that helps xxx
You may find this interview with our Treatment and Workforce Program Manager Jacqui Graves useful, it explains what Macmillan nurses do (and don't do!)
If you have any questions about your treatment or care, you should speak to your GP, or call the Macmillan Support Line on 0808 808 0000.
Thankyou for that peice of info. My husbands cancer was diagnosed as terminal in Dec2010. My first contact with a Mac nurse was approx. march this year and we met her for the very first time last week.She has asked me on several occasions 'what would you like me to do for you'? Well I am stumped, because I do not know what she can do for me, my hubbie or my family. I am not very good at asking for help and my son and I have coped for so long on our own now that I cant see that anything anyone does now, will make a difference.
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