8 years ago
You are certainly not going on in any way - I remember having one friend of a friend who'd been in exactly the same boat as me 8 years previously and she was my lifeline of understanding (& courage, reassurance & sanity at times!) although I felt selfish that I was thankful she understood completely, I was also very very grateful that she had come into my life in the most random of ways. Just knowing that someone had trodden this path before me and had somehow survived, helped me & therefore my mum too, enormously.
Have you been given a wheelchair by PC Team? To help easy dads anxiety, I did used to wheel him a circuit of mum & dads downstairs, many times over, often with his favoured music on or having an old-fashioned singsong with him. Oh the 'laps' we did of the lounge, hallway & dining room! Seems crazy now but it gave him some respite from the anxieties that he had and it actually gave me a sense of helping and also gave me some beautiful bittersweet memories. You can probably tell that he & I were very, very close but even at this late stage in our father-daughter relationship, we bonded even more through those wheelchair laps. Maybe it's something to consider? I would imagine night times are becoming the dreaded times in any 24hrs as there is an innate pressure that night time is for sleeping, stillness & quiet. This can go out of the window when you're living in the palliative stage bubble, I promise you! If you want to listen to music, listen to listening books from the library maybe (or there's an 'App' called 'Audible' - I think that's what it's called - I'll go check for you) or wheel him around, do a crossword (I used to do crosswords 'on behalf' of dad so he could simply listen to my awful answers x) then it's allowed - you've earnt the right to x
Wishing you a peaceful evening & night x
(Maybe Night Carers is also something that may be suggested soon? We ruled it out initially but then did agree to it on the condition that we would be woken if there was ANY change, other than the norm x )
Ps don't doubt that you are doing great x