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.

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.

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!"

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.

Loose connections

Today has been a blur of phone calls in between feeding Dad. I got a few calls from work, since i'm working from home, but we also had calls from the Macmillan nurse, as well as a regional nurse, that the Macmillan nurse has mobilised. Then a continuing care nurse called who will organise daily visits from even more nurses... I told Dad earlier that he ought to move over and make room for me as i'm getting confused too. A hospital bed is being provided for Dad which will make it possible for us to raise him to a sitting position at the touch of a button. On seeing the house the nurse has suggested setting Dad up down in the sitting room so that he can feel involved in things, rather than shut away Mrs Rochester-style. I think he has felt a bit left out today as the neighbour popped around with some more cakes and my brother came for the night. Both the neighbour and my brother have spent time with Dad, but it's not the same. Hearing talk and laughter downstairs and not being able to join in must be miserable. This afternoon Mum was having a drink and i was wrangling some work emails when we heard a floorboard creak above us. We both froze wondering if Dad was on the move and there was suddenly an almighty thud. We both hurtled up the stairs and found Dad on the floor by the bed. He had fallen over trying to get to the bathroom. He doesn't seem to have hurt himself at all and i helped him to the bathroom, then back to bed, with strict instructions Not to try to get up on his own. Recently we have noticed him sitting strangely positioned in bed occasionally, so suspect he has tried to do this before. Mum is now barricading him and her into their bedroom with a chair before she goes to bed at night to ensure he cannot end up falling down the stairs in the middle of the night.
Keeping us on our toes, Dad has a new code for us to crack. He kept saying to us each today that he wants to connect something. He has mentioned the television, the radio and making tea. He obviously wants something as he has said almost the same thing to each of us at different times during the day. I find this really upsetting as i want to help him but just can't understand or even guess what he wants.
This evening, my brother and i managed to groom Mum's elderly, vicious and alzheimers-esque cat. She has trouble grooming herself now that she's 21 and a half, so develops big mats in her fur. Anyway between us we managed to cut and brush most of the mats out and remarkably without blood-loss on either side!

Screwdriver anyone?

A few days ago Dad asked Mum to go and get the screwdriver from his dressing gown pocket. She was fairly sure there wouldn't be one but went to check and there was no screwdriver or anything else in fact. It didn't seem to matter. Earlier today Dad surprised Mum when he was lying in bed and asked her again for a screwdriver. She asked what he wanted it for and he pointed at the television. My first thought when she told me was that it was alarming if Dad suddenly wanted to take a screwdriver to the television in an effort to repair it. Fortunately Mum was a bit quicker thinking and after a quick scramble about found and  gave Dad the television remote control which he seemed happy with. Of all the possible words, isn't it strange that 'screwdriver' is the first to pop into his head?
Dad's friends came to visit today as planned and he enjoyed seeing them. They had to come to his bedside though as he didn't get up today. Mum says he seems slightly less coherent each day but then shows moments of his old self. Apparently yesterday when the doctor asked if he knew where he was, Dad quickly replied "Ightham" with a look on his face that said 'if you don't know where you have come to see me, then what use are you?'

Another Doctor

Dad has declined notably over the past week, even with an increased dose of steroids and now morphine. The days when he does not get out of bed are slowly starting to outnumber the days that he does. His appetite has vanished too and Mum has resorted to buying Dad's favourite biscuits, cakes and treats in order to tempt him to eat anything at all. This change in him provoked the Macmillan nurse to bring a doctor with her when she visited today. (Dad's specialist is on holiday this week and she wanted a doctor's opinion.) In evaluating Dad, the doctor asked Dad a few questions, most of which Dad gave complicated non-sensical answers to. Mum had been worried it might have been the effect of the morphine, but unfortunately the doctor confirmed this was due to the progress of the disease. I hate him being so muddled. It seems impossible that it is really him. I wait for him to tell me he is pulling my leg, an assurance that never comes. The doctor recommended we increase the dose of morphine to eliminate Dad's headaches. He also suggested the radiotherapy scheduled to start tomorrow may bring Dad discomfort outweighing the possible (but not guaranteed) benefits. So Mum is going to call the specialist tomorrow to see what he advises. Dad has some old friends coming to visit tomorrow, who he is looking forward to seeing. Will he or won't he get out of bed for them i wonder?

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!