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!

What's the time Mister Wolf?

Dad's steroids have been increased again and that along with his absence of headaches, on account of the morphine, made him pretty chirpy today. I managed to get him sitting upright, take his medicine and eat a bit of dinner as well as some pudding. Mum made a bit of a breakthrough yesterday. She has been taking Dad meals in bed for the past few days and found he hadn't eaten much or sometimes anything. But yesterday she spoon-fed Dad and found he ate far more. She suspected he was feeling too weak to bother and was desperately worried that the end was very very near. But we now think that the cognitive process of knowing you must lift the food and put it into your mouth was perhaps disrupted. Either way, tonight he fed himself the pudding (yoghurt). Realistically, this could just be down to his increased steroid dose (they increase perkiness and give you a false appetite) but we are very relieved he is eating again (and Mum is glad she didn't manage to starve Dad simply by not helping him to eat the meals!)
Dad is still very muddled. He still refers to the remote control as the 'screwdriver' and is keen to know where it is at all times, even when the television is turned off (and he doesn't want it turned on.) I tease him gently when he says things that make no sense and he laughs at me. When he laughs though he screws his face up as if in pain because his face is less fleshy than it used to be. That has taken some getting used to. The doctor has decided not to proceed with Dad's radiotherapy for the metastasis on his left side. The effects take a while to become apparent and it could bring Dad more discomfort while not guaranteeing any benefit. We have been advised that Dad probably has 'weeks' ahead now rather than 'months' so bringing him extra discomfort at this stage seems unfair.
I chatted with Dad a bit tonight. Knowing his interest in Barbados since we lived there, I told him about hurricane Tomas which has just wreaked havoc in Barbados and which is currently battering St Lucia and on it's way to Haiti. I showed him the coverage of Qantas' A380's engine explosion in today's paper too and he asked if my boyfriend's sister was worried about 'her planes falling out of the sky' She is Australian (like my boyfriend funnily enough) and met Dad when she was here in September (so recently flew to Australia) Maybe that's why he said that? Dad also made an extra effort i noticed, to sound normal when speaking to Grandma on the phone earlier. Dad has these glimpses of himself and of alertness which peep out from behind the fog of confusion from time to time. Which reminds me, he can no longer tell the time. I spotted him looking at his watch earlier and asked him what the time was. His response was to look at his watch again, fold his arms across his chest, announce "I couldn't tell you" and then laugh.

Lazy Bones

When i arrived last night Mum told me Dad had been in bed all day and the whole of the day before. I jokingly refer to him as 'lazy bones' when i see him in bed and on arriving last night, popped my head around the bedroom door to ask if he'd be joining us for dinner and eventually he did. With the return of his other symptoms (headaches and confusion) i think Dad's staying in bed is a result of his increasing passivity, rather than stubbornness. He seems to find it difficult to judge the passing of time. He can sit in one spot, with nothing to read, or without conversation, for a lot longer than he ever would have done before. Mum initially mistook Dad's reluctance to get up for stubbornness. She has the bedside manner of an angry elephant at the best of times, so there have been a few tense moments. We have learnt to give Dad oodles of extra time to get ready to go anywhere, especially appointments.
Dad had a measuring-session with the radiotherapy department today, in preparation for his next radiotherapy for the metastasis on his left side. He couldn't remember his birth date when asked (and laughed naughtily!) but was quick to recite the first line of his address. They have tattooed a tiny dot under his skin which they will align with other markers to ensure the radiotherapy is precisely targeting the metastasis. The radiotherapy will take place over 3 days next week.
Dad is mostly cheerful at the moment. He gets more pain in his head, but the oramorph seems to take care of that, for several hours at a time fortunately, so he is not taking much. He is sporting a bit of a silver-fox beard at the moment, which is strange to us as well as him as he has been clean-shaven his whole life. He is increasingly confused. Mum said she returned home from shopping yesterday to find him speaking on the phone. He said he was talking to the health insurance company and passed the phone to her. Mum found herself explaining the situation to a very confused insurance company employee as apparently Dad had called her, but behaved as if she had called him. He called his mother in the middle of the night a few months ago when he first had these symptoms too. In fact, Dad is sitting with me looking through the paper as i type this and he has just reached out, grabbed the phone and pressed a few buttons before putting it down again, so clearly it is something that attracts his interest. If you receive any strange late night calls from us we apologise in advance!

Morphine Time

Mum told me today that Dad has been extremely reluctant to get out of bed for the past few days and increasingly confused. Paracetamol is no longer touching his headaches either. The Macmillan nurse visited and has sought to up Dad's steroid dose, as well as provide him some morphine (as a nurse she cannot change medication but can tell doctors what she observes and recommend more appropriate medication if the situation has changed since you last saw the doctor) This has since been approved, so Dad is now on 8mg of dexamethasone daily and is taking morphine for his headaches. He says it is more effective than the paracetamol was, so that is something. I phoned Dad's Macmillan nurse to ask her about the change in Dad's situation and to ask her what to expect with Dad taking the morphine. She was very helpful with my questions about the drugs, but less keen to discuss how Dad may progress from here onwards. I had spoken to her briefly once before but it was the first time i've spoken to her at any length. She insisted i call her anytime i want to. I can't imagine doing her job. I think she and her colleagues must be very strong individuals.

Bookworms and coffee

Having all now recovered from last weeks gastro incident, we all felt up to a challenge. Mum and Dad’s combined lifelong book collection has been sitting stacked against a wall at the top of the stairs for most of this year, since the bookshelves collapsed. So we went out, bought a bunch of bookcases and spent the day assembling. Or rather, I spent the day assembling under Dad’s direction, whilst my boyfriend steered us clear of Mum having a meltdown over the internet suddenly going belly up. When it came to putting the books onto the shelves Dad took a more active role by insisting on dusting some of the books and was keen to prioritise shelf space to his travel books over Mum’s French Asterix comic books. Dad seemed happy to look through some old favourites again, clearly remembering which books he enjoyed the most. He is getting confused every so often again though, as demonstrated on Saturday morning when he asked why I had changed out of the brown dress I’d been wearing earlier. This confused me as firstly I don’t own any brown dresses and secondly the only other outfit I had worn on Saturday was my pyjamas. It also immediately made me think of an incident two months ago in a pub when Dad put some sugar wrappers into his cup of coffee, stirred them in and then drank it. Thankfully Dad doesn’t remember much from that period. I will forever remember it as the moment I saw with my own eyes how seriously ill Dad was. As with most people, it’s true that he didn’t always pay attention to everything, but the lunacy of stirring rubbish into a drink before drinking it was not my Father. His brain metastases were still undiagnosed at this point, but all his symptoms pointed to them.