Goodbye Dad

Mum, my brother and i were all sitting with Dad tonight when he quietly took his last breath and left us forever. He was calm and peaceful in life and he was in his death. He did not seem to suffer, but simply slipped away from us and out of reach. I saw a tiny flash of Dad yesterday when he seemed to respond to me speaking about his childhood dog, but i saw none today. It is better for him that his illness is over. If he was in any distress or any pain that we could not recognise then he is not now. I wish i could have done more; I would have given anything to save him, but although i loved him dearly i could not make him stay.

Looking awkward

Today has been a day of activity. My brother and my boyfriend were here so we put them to work fixing the fridge this morning. The panel-cover was coming away from the door and there was an almighty midnight-snack-exposing creak which needed fixing too. After the fridge came the firewood which needed chopping smaller. Dad has been quiet all day again. He fell asleep yesterday evening with his head facing sharply to the left and looked uncomfortable. Today he stayed in that position all day and seemed in pain when we tried to help him move to face anything other than the wall. We called the NHS out of hours service again and a doctor came to see Dad. She told us there could be several reasons for the neck pain and concluded there is no danger in moving Dad but that it is simply a question of comfort. We now have a prescription for a morphine patch which we can get from the pharmacy tomorrow. It will release 12mg an hour into his system, through his skin, for 72 hours so is a much more constant dose than we are currently able to give him. The doctor said that if it is only pain-related this may enable Dad to sit holding his head straight again. It is also possible however that it is caused somehow by the metastases in his brain and will not be remedied. At least we can relieve his pain, even if he sits a bit wonky.

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!

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.

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!