Lala's Journal

By Lala

Rose

In the courtyard

Last night I fell asleep around 10:30. At 11:30 the syringe driver started bleeping and B was very restless. I found the out of hours pager number and tried it at least a dozen times. Beep beep beep off! In desperation I called the hospice advice line who said she would page the nurse. She arrived at 1am. Absolutely lovely lady who fixed it, and added some meds to settle him too. There is so much paperwork with all these controlled drugs that it was 2pm before she left. We had chatted a bit, I had cried a bit and It was obvious she was quite shocked at how we had almost been left high and dry! As she left, without any sort of prompting, she said you are doing ana amazing job! 

B settled almost immediately, but it was after 3:30 that I fell asleep. He disturbed at 4:30, 5:30 and then 6:15 when I gave in and got up! 

He is unable to move himself in the bed, although he can talk and his voice is so gone now that I rarely understand apart from ‘drink’, ‘help’ ‘pain’  etc. and my name! The minute he disturbs he gets that out nice and loudly, almost in a panic. 
When the carer arrived, Emma today, she was visibly shocked and immediately asked how I was coping. It needs two people to do the necessary with someone restricted to the bed, so she showed me what to do as we went along. Then she called the office, and I was offered two more calls today. I grabbed them, so have seen Emma three times. She has cried with me, and told me how much it had upset her, seeing him like this so quickly, they had bantered on Tuesday. On the second visit she brought with her a bottle of lemonade, which she said might be better tasting for him than flavoured water. She was right, he has had sips and not spat them out! 

On her last visit, she stroked his face and told him to hang on to see his boys tomorrow. They are all coming for Father’s Day. 

I cannot express how grateful I am to these people. The carers, the district nurses, the hospice doctor and ladies on the helpline. Never have I been subject to such kindness, caring, compassion and empathy from virtual strangers. 

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