Palliative care for mum- rant needed

  • 3 replies
  • 15 subscribers
  • 47 views

62 year olds Mums hypogarangeal cancer was only diagnosed back in august, we went to a specilist hospital 50 miles away 11th September where she was supposed to have surgery in a weeks time but suffered multiple strokes after a tracheostomy was needed as her airway was at risk, this preventing surgery from happening for at least 3 months, she was placed as palliative and transferred back to her local hospital on October 28th  she came home Friday  November 8th and was back in on  Tuesday November 12th with bleeding from the stoma which was put down to granulation tissue. Cauterised and send home a day later,  on Friday 15th again we rushed her in with heavy bleeding from the actual tracheostomy tube, there were concerns that it was a major blood vessel but it was coming from the tumour it’s self, fast forward after 2 blood transfusions and stabilisation mum was discussed at MDT and we went to meet an oncologist for the first time, we presumed they were going to consider maybe palliative radiotherapy, turns out the tumour is heading rapidly towards her spine and is now within a week starting to invade her tracheostomy site and the airway is at risk. We told there was nothing else they could do and she likely has 6-8 weeks. Mum is wanting to go home however she lives on her own as we sadly lost my dad unexpectedly last year. 

she only has myself and my sister in her life, she has no friends and her days consists of heavy drinking with no desire to stop (this has the case for many years). 

she doesn’t want to go to a hospice and as much as we’d like to be there every day we both have our own families with young children and my sister is also a single parent with little support. I work at our local hospital and the lines between daughter and nursing have been heavily blurred, I have been told that the most likely outcome will be mum dying from a catastrophic haemorrhaging bleed or suffocating to death neither of which is going to nice for her or whoever is looking after her (which will mainly be me and a bit of my sister). 

I feel so selfish saying that I don’t think I can cope with working full time at the hospital, being a mum to a daughter with additional needs. A wife and then most likely a carer for my mum who will continue to drink heavily despite the risk of aspiration (I don’t blame her for wanting a few drinks given the circumstance). Mum is notoriously non compliant with medications and tracheostomy care and is probably best described as a challenging patient from nursing staff at the hospital. 

I was signed off for 4 weeks when she initially had the strokes however I don’t feel I can take more time off as my manager worked through her mums cancer and even missed her dying due to not leaving work. 

My sister and I both feel she would be better at a hospice (as does the teams looking after mum) however she wants to die at home and I can understand that. 

sorry for the long winded message, I needed to sound off as I’ve been holding it together for everyone else and I’m burning out xx

  • Hello  

    I don't think your post is unreasonable at all - you are in a "no win" situation and whatever you do you will be "wrong" to someone else. Quite rightly you have been doing your best for mum and family and "The Room" is a great place to vent your feelings without affecting your family.

    The Macmillan Community is part of your extended family and we are all here to support you in this final part of mum's journey so please do come back to us and use this safe space to release your feelings.

    As for yourself - you do need to take time for you and your daughter - as this will also be a very hard time for both of you and please do contact our support line on 0808 808 00 00 (8am to 8pm 7 days) for that extra support you will need at this trying time.

    Please do keep in contact and if there is anything I can do for you please do get back to me.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Thanks Brian, I had a lovely chat and a sob down the phone to macmillian this morning 

  • Hello  

    Thank you for getting back to me - we are all here for you at this time and will do what we can for you - keep in touch.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.