End of Life care at home high grade Glioma - what to expect

My dad has recently been diagnosed with a high grade glioma. Inoperable. He spent 3 weeks in hospital following a massive seizure requiring intubation - which is how the tumour introduced itself to us. 

His wish is to be cared for at home until the end. We want to be able to facilitate this but I would like to know what to expect, if others have done this. Currently his right side is weak and odematous, and he muddles the odd word, but otherwise seems with it and ironically healthy. He is tired though - has a few little naps.throughout the day. 

  • Hi sorry too read your post, my Dad passed away Gioblastoma in September it was really Sad only 62, fit and healthy until a Seizure led to Diagnosis.

    My Sisters and Mum Cared for Dad at home with no help, we did contact the local hospice at home towards the end but actually managed ok without them. We managed his pain and made the most of the time we had.

    Dad actually did really well up until two days before he passed away. He did lose his short term memory which was hard around 6 weeks before he passed away, he was mobile on a frame until 3 days before he died. We managed his symptoms and leant to deal with them. We took each day at a time and didn't look too far ahead.

    It would be a good idea to tell you Gp your plans, we had a just in case bag of Medicine put together which stayed in the house, this was used when we called the doctors and nurses out at the end. Dad slept more and more, he was put on a syringe driver at the end as he went too sleep and didn't wake back up, it was peaceful and pain free. 
    I'm sorry your going through this 

    lots of love Sarah 

  • So sorry to hear such sad news. I have not been in a similar situation but rather 'on the other side' with a background in community nursing so my thoughts on the practical side of caring. It is very possible to be cared for at home if there is plenty of family support to supplement various services.  It can take time to get services in place so think one step ahead and ask for help early.  Make contact with your local community nursing team to see what support they can offer, hospice if dad has not been referred already as they give great support both emotionally and with symptom control, and if Dad needs help with day to day activities such as washing and dressing ask for a social services assessment if this is not already in place. You may also be entitled to a 'carers assessment' if you are practically supporting Dad. Social care is means tested so depending on Dads circumstances he may need to contribute towards care costs. Health services from the NHS are free. Do some research on NHS Continuing Healthcare as this may be appropriate at some stage and although the services are similar the social aspects of care are funded if someone is found eligible. The path ahead, dads future care and health needs cannot be fully predicted. So even with family 100% commitment sometimes the amount of 24 hour care needed is beyond what can be provided at home in the community so have a discussion with 'we' I assume you and family, find out who can realistically commit, how long you can keep up the level of support, and think about what you might do in various circumstances. In my experience it is better to do this early as if things suddenly change you already have some sort of agreed plan rather than trying to work things out at the time. I hope this practical information helps, wishing you, dad and your family all the best.