The carers come at breakfast, lunch, and dinner, and then the night carer comes 10pm till 7am. They are bright and cheerful, and tell us to freeze diluted pineapple juice for Mum’s dry, sore mouth.
I try to spend an hour “on” and an hour “off”, meaning I spend 1 hour doing things Mum related which varies depending on how conscious she is, or if one of us or a carer is in there with her (Tesco order, making ice pops, tidying Mum’s room, sitting with Mum). By 8pm at night I am exhausted both physically, and emotionally.
It’s harder to be in the room when the carers are there. I feel very conflicted. They are lovely, and kind, but I know in my heart that if Mum were herself (e.g. not on so much morphine) she would hate them calling her by her first name and needing someone to help her do things. She also says things like “Why can’t I…do this. I could… yesterday”. She has no idea that this is the end. She had gotten her affairs in order (there’s a folder full of bits of paper in the kitchen) some months ago, but, paradoxically, she never accepted that she had a terminal illness. Ever. Not even when the cancer came back and the oncologist said “six months”.
I think of her as a sleep walker. It’s easier that way.
I talk to Mum. She’s able to respond to yes and no questions. Sometimes she has enough energy to say words, or short sentences. She mainly says “Thank you” and “I love you too”. When I leave the room, I make sure she has a syringe full of cold ice water in her hand, ready in case she wakes up and feels thirsty while I’m not there. I often pop back in and she has it in her mouth, sipping slowly. I refill it with fresh cold water for her.
“Move the ice water bowl closer, so I can refill it next time” she says. “Ok Mum” I say. She has trouble getting the syringe into her mouth by herself, because of the morphine distorting her depth perception, and she struggles to push down the plunger. (Filling it has taken some practice for me. It requires a steady hand, which I don’t have reliably at the moment.) I move the bowl closer to her anyway.
Sometimes I feel overwhelmed, and I go out for a walk. I go down the country lanes, and I focus on how green the fields are. I wear sunglasses so no one can see my puffy eyes, and the pain trapped in my head.
Other times I sit at the computer, listening to my sisters and brother-in-law chatting and doing crosswords, my ears straining to hear a change in Mum’s breathing. When I hear the change I go into the room, and she says to me “Good morning” and I say “Morning Mum”. She turns her head, ready for a kiss.
“Can I get you anything?” I say and she usually says “Iced water please”. So I empty the liquid from the syringe in her hand (which is at room temperature) and I draw fresh cold water from the bowl of ice by the bed. “Hand” I say, as I place it in her soft thin hand. “Hand to mouth now” as I guide the syringe in her hand to her mouth.
“That’s lovely that” she says. “Is that just water?”
“Yes” I say. “Just iced water. I’m glad I can do something for you”
Sometimes she’s too tired. She says “Iced water”, so I fill the syringe, and I squirt about 3 ml of water in her mouth. She could handle 5ml yesterday, swallowing it slowly, but in one go. That amount makes her cough now because swallowing is becoming more and more difficult.
I say “Ready?” and she opens her mouth. I squirt the 3 ml in, and say “Now close”. Then I say “Now swallow”. I make sure she swallows while I’m there as I don’t want her to cough, splutter, too tired to sit up or turn to tip the water out. I learned today that the medical term for that is “aspirate”.