Grumpy Grumps

Dad was quiet today. He was awake most of the day but got a bit grumpy towards the evening. After a lot of fussing from the nurses, Mum asked if he was comfortable and he shot her a look so i asked if he needed anything or would rather we all piss off. I got told in a weak-voice "Piss off." Fair enough. He ended up dozing-off watching the television while we were eating dinner, rather noisily, across the room. My brother came today after work, so is here for the weekend. This helps us tell one day from another. We will have a full house tomorrow as my boyfriend will be here too. He has been away completing a course, so perhaps tomorrow we ought to celebrate the end of his exams with that party Dad mentioned. My brother will be in charge of drinks!

Goodnight is the hardest word

Night-time is hard. I spend all day every day with Dad at the moment and i find it really hard to say Goodnight to him. Even though he squeezes my fingers in his hand and tells me goodnight too. I don't like leaving him downstairs in the dark all alone, especially now he is so weak, skinny and confused. Worse still are the mornings. I know it is very possible sometime soon that i will go to wake him in the morning and not be able to.

We need to drink more

A conversation with the nurses today worried us. It turns out that Dad isn't drinking nearly enough fluids. We do insist he has drinks throughout the day but obviously not enough. We are now to try to get him to drink at least half a glass of fluids every hour on the hour. 
The Macmillan nurse came again today and has confirmed the planned reduction of Dad's steroid dose. So from tomorrow he will be on 8mg of dexamethasone a day (down from 12mg a day last week) He was still ok on 8mg a day last time he was on that dose. It was only when it decreased beyond that dose that he declined so visibly. We will see what happens this time. We are expecting that with the reduction of steroids the swelling in his brain will increase and with it, his need for the morphine.
We got Dad out of bed today so that we could change his bedding. He was much weaker as we stood him up to transfer him to a chair. We were not really surprised as Dad has now been in bed for 13 days, but it was still shocking to be faced with it.

Piccadilly Circus comes to Ightham

Today has been extremely busy. The head continuing care nurse came early this morning to assess what sort of care Dad needed from her team. While she was here the bed arrived and was erected. Mum and i played with it to test which button did what so we wouldn't end up folding Dad in half once he was in it... The Macmillan cancer nurse came at lunchtime and helped us walk Dad downstairs. He needed a lot of support as he is very weak and wobbly on his feet but we made it. He opted to get into the bed straight away and reports it to be very comfortable. He is clearly happy to be reunited with Sky television; he watched a combination of BBC and Sky news for 4 hours this afternoon. He even waved Mum to one side when she stood in his view at one point. Then we had a pair of continuing care nurses turn up earlier this evening to give Dad a wash and help him brush his teeth. Mum also managed to pop out to the surgery to ask the doctor to prescribe Dad's medication in liquid form, as he is now struggling to take pills. In between all of this i have dived in and out of my work email. We are all wiped out now, even the cat, not that she did much. Mum did lock her in the garage for a few hours earlier though, who knows what she got up to in there.
Tomorrow we expect Dad's brother, sister-in-law and Dad's mother aka Grandma. It is much better he is downstairs now as he can be involved in everything with everyone. Mum and i have taken a few of our lunches upstairs this weekend to eat with Dad in the bedroom, but we can't do that with three visitors.

Busted

There was a bit of night-time activity last night. Mum told me that Dad sat upright in the middle of the night waking her; he explained he was checking the carpet was ok. She later got up to go to the loo but hurried back as Dad started shouting and he said quite seriously "Be careful the ground doesn't swallow you up" Dad is clearly much less well than he was a fortnight ago. He seems happy enough during the day reading the paper or listening to the radio in bed, but is alert enough to be a bit bored upstairs and mentions coming downstairs. Currently though we are worried that if we do manage to get him dressed and downstairs safely we may not manage to get him back upstairs. Dad has been quite chatty today. When he wants to talk i make sure i let him finish saying whatever he has to say. His voice is weak so you must listen carefully and he doesn't often make sense. Sometimes i tell him i don't understand and at other times i worry he will catch me out if i try to make a sensible response to something crazy he has said. This evening he gave me a funny look at just such an occasion and when i asked him why he was giving me that look he replied with a raised eyebrow "i think you are talking in riddles" Hmmm... that's me busted!