Mum passed last Tuesday aged 85, very peacefully and without pain in her bed at home. Her death certificate shows cause of death as cortico basal syndrome.
She had been living with us since April 2023, symptoms of CBD having begun in 2019, with a left hand that would not behave, and a confirmed diagnosis of CBD in 2020.
Her speech had become only understandable 5% of the time before Christmas and she was becoming unable to support herself at all walking. We usually supported her as she moved from room to room and chair to bed. We think she was holding out until Christmas as after this she seemed to go down rapidly.
We thought that she was coming down with the flu bug that was going round the week before and had the GP out to see her who prescribed antibiotics for a chest infection. After a week those still had not worked and we had the district nurse out and another GP. Mum was struggling to eat mushed up food or complan drinks - she had been on a soft normal diet before Christmas - but over the week we had really struggled getting food and water into her, some days 3 meals others half a weetabix! Her consciousness levels had become lower and lower since the beginning of January. The GP sat on the fence and said that more antibiotics were not advisable and that sending for a chest X-ray would put her through more distress. We thought at this point she was end of life, but GP was not saying so. He suggested the anticipatory meds if she could not swallow her painkillers.
We called hospice for advice. They were marvellous and came out to see us, 30 mins after I had dissolved in tears on the phone. The nurse sat down with us, gave us unlimited time and talked to us about mum. She then went in to check her, came back out to us and confirmed she was dying. We were told to stop all food and drink and just moisten her mouth as she needed it. She gave her an injection to reduce secretions which worked for a while, then left us with contact details and an invitation to call at any point.
We called again at 11pm as mum seemed agitated and appeared to be in a bit of pain. They gave her a Morphine injection at this point.
At 9am or so the next morning , her breathing changed to more shallow in her sleep and then at just before 10 she stopped breathing. We were all there for her as she left and feel very proud that we were able to care for mum at home until she died, what she wanted.
As she had agreed to donate her brain to the Cambridge Brain Bank for research, this was also successfully coordinated and retrieval happened two days after her death.
Thank you for the support this forum has given over the last few years. It has been a tremendous source of information and support. Please if you have not already, get your loved ones on the local hospice list. This happened so quickly in the end for us and the hospice support was amazing, they provided exactly the support we needed at the time.
Take care everyone.
Some help at last....
CBD and Seizure?
Free at last 
