My Mum has spinal cord cancer, she had been in hospital for 8weeks, I go and sit with her every day. They tell us that there is nothing more they can do other than palliative care. My mum can’t walk, and is in bed, which is heart breaking to see as her mind is very alert. I want to bring her home to care for her, but worry how I will manage, and what support we will have. Has anyone any experience or advice for us , thanks
I’m very sorry to hear that your mum has spinal cord cancer. This must be such a difficult time for you and it sounds as though you have a number of worries about how you will care for your mum and what support you will have.
Have you come across our information pages? We have a number of articles about palliative care and caring for loved ones, including an article about support for carers. You can browse through these articles here: https://www.sueryder.org/how-we-can-help/someone-close-to-me-has-died/advice-and-support
Do you have much contact with your mum’s medical team? They may be able to answer any questions you have or might know of local support services that can help you.
Keep talking to us here as long as it helps and if you have any questions or if we can do anything to support you, please let me know.
My wife was in hospital last year for nearly seven weeks and became what is called a bed blocker, she was ready to come home but they couldn’t put a care plan in place due to shortage of carers. My wife had a brain tumour and she had lost the use of her legs and one arm. When the Palliative Care Team became more involved she was “rescued” by the Sue Ryder Hospice and spent two weeks there before coming home and dying 20 days later. The care at home was put in place through the efforts of Sue Ryder and the Palliative Care Team.
Important considerations were who could provide care in addition to me, and could our home accommodate the aids and equipment she needed. Occupational Therapists and Physiotherapists had a big input.
Every day while my wife was in hospital I asked for an update. The longer she stayed the more immobile she became and she developed a Pulmonary Embolism. My advice would be to keep asking whether she can come home, and if not, why not. Finding the right people is usually difficult but you do need to keep trying, however frustrating a process it is.
I thought the individual staff at the hospital were caring and tried hard, but the overall organisation was a shambles.
Thanks for your reply Yorkshirelad 1950, my mum sounds in a similar situation to your late wife. Today we were finally told that she is coming home with continuing health care and hospice support. I’m not sure she will last while this is sorted. My poor mum says she is in a living hell, and my self and my dad feel helpless. I feel we are all in a living hell. I don’t know how much more we can all take.