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.

Another Fit

Dad slept almost all day and it was only around 5pm that he was more awake and we managed to get him to eat anything (some strawberries) So much for getting more fluids and fibre into him.  He was more alert with the afternoon visit from the nurses and when they said "We'll be off now then" Dad said "Oh good" He didn't mean to be rude, we've noticed in fact that he makes an extra effort to behave with visitors, so it brought a smile to our faces (and the nurses took it well). After dinner Mum, my brother and i settled with Dad to watch the television and Dad had another small seizure. It was over a bit quicker than last night and we put him in the recovery position to sleep it off.

Fits but no giggles

Dad had a seizure last night. It wasn't a full body seizure; it only seemed to affect his head, neck and shoulder, but it was still alarming. My brother and i were sitting with him watching television and we suddenly realised Dad was making a lip-smacking noise and shuddering. It lasted about a minute. We waited for the seizure to end and i looked inside his mouth to check he hadn't bitten his tongue, then lay him down to sleep. Mum called the NHS out of hours service and a doctor called us back about 15 minutes later. We spoke through everything and he reassured us that we were doing the right thing to let him sleep and that there wasn't anything more we could do. Having taught first aid for years i am familiar with treatment for epileptic seizures, but knowing Dad doesn't have epilepsy, wanted to double check the same treatment was correct for Dad's situation. Mum decided to sleep downstairs and i rigged up the two-way radio by my bed. I fell asleep listening to Dad's breathing. In the middle of the night i suddenly woke with a quick noise and the same lip-smacking sound Dad had made earlier coming from the radio. I raced downstairs and looked at Dad whose back i could just make out in the darkness was moving with his breathing, but who was otherwise still. Mum seemed unaware but had been asleep herself. This morning there were a few saliva-spots on Dad's pillow which i think is further evidence that he had at least one more seizure in the night. Of course none of us saw him fit after that first one, so we're just not certain.
He has been very quiet and very passive so far today. The nurses commented that shaving him had been far easier. I only managed to get one spoon of breakfast into him this morning. He retched a bit and we were worried he would be sick, so gave him some anti-nausea medicine and have put him in the recovery position so he cannot choke. He is sleeping now, snoring gently.

Best laid plans

With so many people around but for a limited time, i asked my Aunt to take Mum out for lunch today while they went to the shops, to give Mum a break. I assured them both that i could hold the fort here and put Grandma to work as necessary. Sadly this brilliant plan wasn't quite to be. Dad's GP called and suggested he would pop round as well as a community nurse. Mum felt she'd rather be present to see what each had to say, so only went to the shops much later in the end, well beyond lunchtime.
The doctor reassured us that the advice of the Macmillan system was correct. For a period early last week when Dad seemed to dip, there was a debate where the Macmillan advice had been to reduce Dad's steroids further but the specialist had advised increasing them. Mum wasn't sure who to believe. The doctor today confirmed our belief that the specialist did that in the hopes Dad would be restored significantly again with a higher dose. Sadly this hasn't happened so the next step will be the reduction again of Dad's steroids. The nurse seemed only to have came to introduce herself and enjoyed a cup of tea.
Dad slept in the afternoon while i kept on top of work email, my Uncle read the paper and Grandma leafed through some books. Mum and my Aunt returned home with a two-way baby radio which was promptly assembled and played with. Mum is worried that she won't hear if something happens in the night, now that Dad sleeps downstairs. So now, instead of complaining about Dad's snoring, she plans to go to bed eagerly listening for it.
We are getting used to nursing teams coming and going throughout the day. The morning session seems to be around 9am and the evening visit around 7pm. We have requested the evening visit happens earlier though as 7pm has proved to be the time we all get hungry. The nurses are all very friendly but Dad is still getting used to all these relative strangers messing with him. Some of them cope better with Dad's friendly resistance than others.

Waiting for a flight

After a stubborn struggle the nurses managed to shave Dad this morning. He hadn't shaved in about 10 days so it was difficult, but we got there. His face looks a bit grey and Mum and i can't decide if that has come on today or was obscured by the beard. The rather traumatic shave is probably what prompted him to sleep until 3pm.
As he dozed off i was on the telephone to the travel agent rearranging someone's trip to Frankfurt and booking a new one to Zurich for someone else. I wrangled various other things and Mum got on with a few jobs while Dad slept.
Dad's brother, sister-in-law and Grandma are visiting and turned up mid-afternoon. It has been nice for Dad to see them all again and nice for them that although he doesn't make much sense when he speaks, he recognises everyone. It is especially nice to have Dad downstairs now as we could involve him in the evening together. He still makes the odd quick comment when he thinks Mum isn't listening. Dad has a plastic bottle on the bed next to him in case he needs the loo more urgently than expected. This evening we were all sitting around having tea and coffee after dinner and he started waving it around. When we asked why he said he was waiting for his flight. We were a bit surprised but played along and asked where he was going. He responded "Frankfurt!"