Hi everyone,
I've been reading these threads on and off for a while now but this is my first post because we are really at a loss with what to do for my dad who is currently in hospital with end stage Lewy Body Dementia.
We believe he had a stroke last Sunday because he went from eating very milky Weetabix at 10am to choking on his tablets at 1130am. He has a chest infection and has been on IV antibiotics for a week. He has also been fed via drip and NG tube for the last 5 days as he has no real swallow. He coughed and went red in the face from just a drop of water from the mouth-eze brush yesterday.
The hospital want to know how we'd like to proceed with regard to feeding, and my dad wants to go home. It seems that the choices are risk feeding (which feels like doing something that would actively upset him if he can choke even on a drop of water) and not feeding/hydrating (which feels like starving him).
If my dad was minimally/unresponsive I would find this decision easier to make but he's still communicating socially. He can't speak well, but can point to an alphabet board and whisper words in very slurred speech. He's even been smiling or gently laughing at things that would have amused him when he was well. On the other hand, he has most of the signs of end of life.
My dad has never had insight into his condition and when we completed the respect form after an unresponsive episode last month, my dad was genuinely baffled as to why the GP was asking if he wanted to be resuscitated. His view was 'Of course I would want that because there's nothing wrong with me!'. He could articulate that very clearly to the GP at that time. This makes it seem really cruel to discuss his EOL care wishes with him. I don't want him to feel fear in his last days/weeks if I can avoid it.
I would really welcome hearing about anyone else's experiences here because this feels like an impossible situation.
I've been reading these threads on and off for a while now but this is my first post because we are really at a loss with what to do for my dad who is currently in hospital with end stage Lewy Body Dementia.
We believe he had a stroke last Sunday because he went from eating very milky Weetabix at 10am to choking on his tablets at 1130am. He has a chest infection and has been on IV antibiotics for a week. He has also been fed via drip and NG tube for the last 5 days as he has no real swallow. He coughed and went red in the face from just a drop of water from the mouth-eze brush yesterday.
The hospital want to know how we'd like to proceed with regard to feeding, and my dad wants to go home. It seems that the choices are risk feeding (which feels like doing something that would actively upset him if he can choke even on a drop of water) and not feeding/hydrating (which feels like starving him).
If my dad was minimally/unresponsive I would find this decision easier to make but he's still communicating socially. He can't speak well, but can point to an alphabet board and whisper words in very slurred speech. He's even been smiling or gently laughing at things that would have amused him when he was well. On the other hand, he has most of the signs of end of life.
My dad has never had insight into his condition and when we completed the respect form after an unresponsive episode last month, my dad was genuinely baffled as to why the GP was asking if he wanted to be resuscitated. His view was 'Of course I would want that because there's nothing wrong with me!'. He could articulate that very clearly to the GP at that time. This makes it seem really cruel to discuss his EOL care wishes with him. I don't want him to feel fear in his last days/weeks if I can avoid it.
I would really welcome hearing about anyone else's experiences here because this feels like an impossible situation.
