Sunday night is the worst night for me. I often lie awake feeling anxiety flood into my body, knowing I won't sleep, trying not give into the urge to cry in case I cannot stop. My boyfriend leaves on Sunday night, late, to drive back to London as he has to work on Monday's. Maybe part of the anxiety is knowing I'm now alone with it all.
Yesterday I started to worry about dad not eating, every time I ask him if he can sip his complan he shakes his head. I don't push it.
My cousin visited for the afternoon giving us a break so we could go out and have a nice walk, try and relax and enjoy being outside. She mentioned a friend, who died of liver cancer, liking to eat custard pots. I immediately sent my boyfriend to the shop in the car to buy pots of creamed rice, custard and ice cream. My father always had a sweet tooth so why not play to it.
I made a roast and crumble for my boyfriend and I. Then I showed dad what I bought him and he nodded, I'll have that with some crumble please. So that's what I gave him, some pureed berry compote and crumble topping with the custard, he cleared the bowl in seconds. Today again he asked me for the same and ate it up no problem.
The hospice nurse said a lot of patients with cancer find milky desserts easy to digest and palatable, complan can get boring. Now I know how to keep him interested in food, even if it's for breakfast, a sweet milky dessert is what's working right now.
He does seem low today though, I spent most of my mornings wondering about tidying and then going to check on him. Eventually he rose at 11.30am. I help dress him, get him comfortable in the living room bed, then he sleeps again, all morning.
I wake him at 3pm as he has friends coming. This always cheers him up, he needs visits and interaction although it's very tiring.
I look for more information about the final stages of liver failure, I don't know what to expect. I want the detail and I found it here.
We're all wondering when we should be with him all the time. My friend Linda says it's a marathon not a sprint, I think we have to remember that.
