Then it all turns dark. Phil wakes up, tries to walk and would have fallen if i want there to catch him. He is shocked at his weakness, in a panic asks questions to which the only answers are brutal.
Why am I like this
Why aren’t you like this
How can I live like this
Why can’t I just die
He is so weak he can’t stand but is raging to walk again, what could be more natural, raging against the dark night. I take him for a walk in the wheelchair round the estate because, having decided that we are killing him, he wants to see people, anyone. Should he be regularly visiting day centres to keep him socialised? Are we enough, are we being arrogant in thinking we are enough?
It’s enough to break the heart of a statue. Leaves you feeling bruised inside, the house feels like a tomb. How you can start the day in comfortable shallows and end up in the deepest blackest waters.
Getting Phil to eat is very hard indeed, he seems to be semi-consciously deciding that he hates everything. We try to feed him little and often, but that means we spend a lot of time cajoling. When he is this low, it gets even harder.
Esther arrived and that always gives Dad a lift, they have a strong connection and while his mood doesn’t improve he is calmer with her holding his hand.
Finally he asks to go to bed