Struggling to cope

Nicci1969 5 years ago

1 reply

My Mum has spinal cord cancer and has been in hospital confined to a bed for the last 10weeks as her legs gave way, and She can no longer walk. She has been moved between 3 hospitals and each time she has been moved each journey had been distressing and made her symptoms worse. I have had to ask for support from McMillan, and they now see her weekly. No-one has given us  a prognosis, although seeing her get weaker and become more disoriented we are coming to our own conclusion. Myself and my dad spend every day by her bed , if we don't go she becomes very distressed, the nurses are too busy to provide emotional support for her. I want to bring her home, but the hospital are taking a long time to arrange it. I feel like we are all in a nightmare we can't wake up from.

Ross 5 years ago

Hello Nicci1969,

We’re are sorry to read about your Mum’s diagnosis and the distress that moving hospitals has had on her and you all as a family.

It’s understandable that you say you want Mum to be back at home. You mention that this is taking a long time. Do you know if there is someone such as a Discharge Liaison Nurse that you can speak to that may be able to give an idea of when they hope to get your Mum discharged? Depending on where the hospital is based there may be an organisation set up to help patients and families communicate with the NHS and resolve any concerns that they may have. If the hospital is based in England it is called the Patient Advice and Liaison Service and are normally based in the hospital. You can find more information and find your local one here: https://www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363 . If you are based in Scotland then it is called the Patient Advice and Support Service and you can read about them here: https://www.cas.org.uk/about-us/partnerships-services/cab-service-partners/patient-advice-and-support-service .   

Supporting a loved one with a terminal illness can evoke many powerful feelings such as you describe and it can be important to look after your own wellbeing at this time. For many people, talking about how they’re feeling is a big part of taking care of themselves and sharing your emotions on this community is a positive step to take. You may also find that reaching out and talking aloud in a confidential space can allow you to start processing how you’re feeling. If you feel that this may be beneficial, our Support Line is here to listen on Freephone 0800 090 2309. Our opening hours can be found here: https://www.mariecurie.org.uk/help/support/marie-curie-support-line .

Take care,

Ross – Support Line Officer