23 December 2020

I woke at 05:30 and found you on the floor. I tried to get you back into bed. I thought I was stronger than this. I had to call paramedics. They lifted you back in bed. I felt awful and angry. I’ve been asking for a district nurse to see you. They were supposed to assess you on Sunday or Monday and I was promised a daily visit. Because you can’t speak, I don’t know if you’ve hurt yourself but the medics assured me, I’d know if you were in pain. When they tried to take your blood pressure on the right arm, the one with your dialysis fistula in it, you said “I-yi-yi-yi-yi” trying to tell him to use your left arm. It buoyed me up to know your mind is still here, but I don’t know if you’re suffering.

It rained and rained. The daily carol playing outside your window was a sodden affair. That night your conservatory was awash with multiple leaks from the roof we’ve been urging you to pull down completely. You changed nothing about the house after Mum died. Yourself yes. You reinvented yourself with new friendships, learning to cook and how you looked ahead, patient, kind and quietly optimistic. You made the best of each day.

The district nurse advised me to put your bed against the wall but she didn’t want to put rails on the bed in case you get trapped under them. You’re still sleeping a lot but I play music for you, I’ve got a vapouriser with essential oils in it steaming the room and a diffuser. I stroke your arm and your hair. I hold your hand, sometimes you grip me back. You refuse to take any liquids, turning your face away. It breaks my heart, even makes me cross, but I respect your wishes. I read to you. I video call people from your phone. The oil is delivered and the house is warm again. You are communicating No by a quick head shake to the left. When you recognise someone or something they say penetrates the fog, you look towards them, open your eyes and raise your eyebrows. This evening I call A from your phone. A’s love for you is beautiful and moving. I’m grateful you have known this person in your life. You look at the phone and reach out towards it.