We don't have a firm diagnosis of what is wrong with my dad.
Initially, we were told it was a brain tumour, but then a CT scan with contrast revealed nodules on Dad's lungs so more likely to be lung cancer with brain mets.
He is now receiving palliative care at home and my husband and myself have moved in to support him.
Initially when he came home he started to thrive - eating the best he's ever eaten, enjoying TV, going out to the park, going to church, but now he is bedbound and having vision problems.
For the past month or so Dad is only awake when eating so he is having small meals and snacks several times a day (which he enjoys). However as soon as he has finished eating he is only able to maintain a short conversation before he starts nodding off again.
A couple of days ago he finished breakfast and fell asleep and after about an hour he started to make the death rattle sound. It was quite shocking hearing the gurgling and bubbling in his throat. However, after sitting with him in floods of tears thinking this was it, he suddenly sat up and asked for some crisps! He didn't make the sound again all day.
Yesterday when sleeping he was groaning all the time. When I asked him if he was OK he said he was fine but looked restless, head moving from side to side and hands lifting and falling. However, when lunch time came he was up, eating well, looking at the garden, smiling and then went back to sleep and started it all over again.
Until last night he's been sleeping relatively peacefully through the night, but last night he started groaning loudly. We checked on him and he seemed to be OK - said he was OK - and so left him. He then started groaning louder and louder and even shouting out, but each time said he was fine. This went on all night so I've hardly slept a wink but this morning as soon as the curtains opened he stopped groaning and was ready for breakfast.
It seems crazy to me that he can be eating and watching olympics with me one minute and then asleep, delirious and restless the next. Anyone have any ideas how we can keep him calm at night? I can comfort him during the day with reassuring words (and snacks!) but we can't do that all through he night. I really don't want him to be put on sedation medication until he really needs it. Currently, I'm pleased to say he's not in pain and completely enjoying the moments he is awake and eating.
Just wondering if anyone has any experience of caring for someone with brain mets or has any suggestions of what might help???
Thank you!!
