She sleeps a lot or dozes off. The tumor in her brain stem paralyzes all her muscles. She can no longer hold her head and if I or an armrest does not support her, she tips over on the sofa or out of the wheelchair.
Her legs can no longer hold her body. Every time I lift her from the bed to the toilet chair, into the shower, onto the sofa, into the wheelchair and back, her full weight is on me. I always make sure to lift her from my knees,
luckily my lumbago is gone.
Her left arm is more or less functionless and dangles at her side. She can still hold her mobile phone in it and type with her right hand. She continues to write blogposts and instructions and wishes for me.
The mobile phone is still a communication channel that we have. She can’t really talk anymore. I can guess from her sounds what she wants (water, tea, to the toilet, the pillow differently, …) Much can be deduced from the context and much follows established routines.
Titien must be fed in the meantime. I bought her several bibs so that the part of the solid and liquid food that is not swallowed is collected before it lands on clothes and floor.
She can only eat soft food. Porridge works, ripe fruits in very small pieces work. Passed soups work. Bread without crust with thick cream cheese on it works. Spicy food is no longer possible. She chews very slowly.
She chokes while eating and drinking and can only with difficulty cough her windpipe free again. I feel helpless when I hold her bent over and pat her on the back.
Titien’s breathing goes rattling. The day before yesterday a doctor was here because we suspected that Titien had water in her lungs. Fortunately the all-clear was given. But pneumonia caused by aspirated food or drink is a real danger that we have to deal with.
Titien has a feeding tube through the abdominal wall. She has stated both in her living will and several times orally that she wants her feeding tube to be used for water but not food.