Dad's Funeral

Dad's funeral will be held at 11am on Monday 6th December at St Peter's church. Everybody is welcome, so if you want to come, please do. Dad loved nothing better than a gethering, except possibly one well-furnished with rum, so we will then adjourn to a nearby pub, as per his instructions.

Dad has left the building

The undertakers, having neatly avoided the ditch and made an impressive five point turn on the drive in their long vehicle, have now taken Dad. We are going to collect his death certificate and register his death. When the funeral details are confirmed I will post them here. We welcome anyone interested in coming.

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.

Driving on

After finding Dad the way he was this morning, while Mum was stocking up at the shops ahead of tomorrow's forecast snow, I called the surgery and asked Dad's doctor to call when he had the opportunity. I talked him through everything and he decided to come and visit Dad. He said Dad is tachychardic and has the beginning of bronchial pneumonia. He went back to the surgery and sent the community nurses to us to rig-up a driver to give Dad medicine, now that he can no longer swallow oral medicines. They came and set to. It is a tiny needle that is inserted just beneath the skin on his upper arm. It was the calmest he and i have ever been in the face of a needle (i inherited Dad's needle phobia) The driver has been set up to give Dad Midazolam, to prevent further seizures, and Glycopyrronium Bromide, to ease the infection in his lungs. The Midazolam sedates Dad too and his pain is managed entirely by the Fentanyl patch now which the nurses seemed confident was enough. He has been hooked up to the driver for about four hours now and is lying very still. We can hear his breathing which is quite fast and shallow still. We can also hear a little mechanised 'whirr' noise every 15 minutes or so which is the driver administering another dose. The purple tinge to Dad's knees is common in people whose bodies are starting to shut down and his hands and feet are much cooler now. Dad has been almost entirely unresponsive today. We are desperate to interpret an eyebrow twitch as an effort to communicate, but we are painfully aware that it is most likely a random twitch. Dad's eyes look cloudy now as he stares past us. My brother has come down from London tonight, so we are all here together.

Pale and Purple

This morning Dad is breathing very rapidly and his breaths are shallow. He is very warm and clammy and  had some blood in his mouth when i came downstairs; I think he must have had another seizure in the night and bitten his tongue. I've also noticed that although warm, his hands are a ghostly white and his knees look purple, while his shins and feet are a bit pale. The nurse who came this morning washed him and remarked that he did look different from yesterday. Early on the nurses declared what a 'lovely bottom' Dad had, but this morning the nurse found a pressure sore on his bum. So we have put some cream on it, in the hopes it doesn't burst and become even more painful for Dad. He is lying quietly now with the radio on and i am going to light a fire as it is freezing.

Seized

Just as i posted that last entry Dad had another small seizure. We haven't seen him have any seizures since he had three in 24 hours about ten days ago, despite watching him like hawks since. During the seizure his head stayed firmly to the left this time, but his jaw twitched, opening and closing his mouth, as he stared straight ahead. He fell asleep straight away and i have let him rest and waited a little while before trying to rouse him from sleep just enough to give him another dose of morphine, but he is so deeply asleep that i cannot wake him even pinching his earlobe, so i will head to bed.

A day of visitors but few words

Mum's cantankerous old cat excelled herself this morning by vomiting all over the lounge moments ahead of visitors arriving. She has been in disgrace all day since. Dad has been almost mute today. These visitors were a work friend of Dad's and his wife and although Dad communicated with hand-grabs, looks and eyebrows he didn't actually say a word. As soon as they left i said to Dad "It was nice to see them again wasn't it Dad?" Of course, it was at that point that Dad spoke and said "Yes". The Macmillan nurse came during the afternoon and couldn't really evaluate the effectiveness of the patch we put on Dad yesterday. She said it was better to reconsider the dose when we replace the patch (which will be Thursday) so we have seen it at its most effective. We are continuing with the oramorph too. I asked her if Dad is in the sort of condition that she would expect at this stage from her experience of melanoma (and other cancer) patients and she said he is. Dad's head is still fixed looking to the left. He doesn't seem in pain when he is still but when the nurses move him to wash him and change his pyjamas he makes such a face it looks like he is in agony. I find it really hard to see him like that, but the Macmillan nurse said not to worry that he is in a lot of pain as it is quite likely also an expression of displeasure at being moved around and messed with. He has never been a very touchy-feely person, so although that makes sense, it still worries us. He only does it when his head and neck are moved and the only other thing he said today was "Ouch!" when moved by the nurses in the evening, so i hope the full strength of the patch comes into effect soon. Partly because of the position of Dad's head and partly because he cannot understand verbal directions anymore we are now feeding Dad liquids only and through a plastic syringe. We have been told we can continue like this as long as he can reliably swallow, which he still can. Once he can no longer swallow a line can be hooked up to give him medicine and fluids.

Patchwork

I held the fort this morning while Mum played tennis with some friends. I like to give her opportunity to do something other than look after Dad. She has been looking after him for longer than i have afterall. After thrashing her opponents on the court, Mum went to the pharmacy to collect the patch prescribed by the doctor last night. We decided to put the patch on Dad as soon as we could. The packet was really fiddly to open and after struggling to get into it we pulled out a tiny postage-stamp-sized little sticker which we applied to the top of Dad's arm. Each patch lasts 72 hours but we have been warned that it will take about 24 hours for the patch to have any effect, so in the meantime we are continuing to give him the liquid morphine (six spoons a day) He is still holding his head firmly to the left and proving difficult to feed in this position; which must be uncomfortable. He hasn't said much again today except when this morning's nurse asked how he felt today Dad's response was "downhill"

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.

Talk and Cakes

Mum and Dad's neighbour has been very generously baking cakes and treats for Mum and Dad over the past few months. Quite independently this morning Dad cheekily said we were overdue a visit from the neighbour. As if by magic, she later appeared with a plate of chocolate brownies and scones. Yum. Dad has since been asleep. He has been very quiet today and only eaten the yoghurt we gave him for breakfast. He has complained more definitely of pain in his head today, so has had four spoons of morphine so far. This morning Dad was talking about 'going away' and being 'almost there' which alarmed Mum as she remembers Grandpa doing the same shortly before he died. Grandpa was lucid to the end though, whereas Dad's mental capacity is obviously impaired, so maybe he means nothing by it.

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!

Old Brain's Party Plan

Dad was quite chatty this morning. While i was feeding him breakfast he quietly said "Old Brain" I'm not sure what exactly that meant but he nodded and raised an eyebrow very seriously, as if it was something wise i should take note of. During the morning, when Mum was out collecting another prescription and i was sitting here dealing with work emails, Dad suddenly said "We'll have to make sure someone is responsible for drinks" I thought 'eh?' and asked which drinks. Dad told me we were having a party on Saturday and my brother should be in charge of the drinks. This was news to me (and Mum!) He hasn't said anything since that, but has just been sitting back in bed staring into nothingness. That 'party' conversation is the nearest any of us has got to having a conversation with Dad in weeks, so although it was meaningless really, it was nice. He has had a few moments of absence today where he has stared straight through me while i spoke to him and waved in front of him. I've also noticed that his right hand has jerked around on two separate occasions, like a local seizure of the hand alone and only lasting 10 seconds. It was especially obvious as his hand was flapping against today's newspaper. He is snoozing now. Drug-wise, yesterday we increased Dad's dose of morphine from three 5ml teaspoons a day to four teaspoons. He seems to be in more pain today again, so i'm not sure at what rate we should increase it, but the community nurse who is coming tomorrow will advise us. Dad is still on 8mg of dexamethasone daily.

Do Not Attempt Resuscitation

The community nurse came to see us yesterday and while here gave us a DNAR form; "as agreed" she said as she handed it to Mum. DNAR stands for 'Do Not Attempt Resuscitation'. It only refers to Cardio Pulmonary Resuscitation (hereafter CPR), not any other continuing treatments which remain in place. Basically it removes the obligation of any visiting healthcare official to perform CPR on Dad if his heart or breathing stop as a result of the progress of the melanoma. It is written and signed by Dad's doctor. Mum and i both believe that when faced with this situation, it would in fact be kinder to let Dad go, rather than to prolong him, probably only briefly, in hospital, having suffered great physical trauma and most likely in great discomfort. So we are not opposed to the form. We were both surprised however, to be presented with this form, without anybody having mentioned it or discussed it with us previously. At the time, since the nurse referred to the form as having been 'agreed' I assumed they had previously discussed it with Mum, but she was as surprised to see it as i was. i thought she was quiet. Advance directives and DNAR forms provide a means for patients to communicate what sort of medical treatment they would prefer to receive if they reach a stage in their illness where they are lacking the mental capacity to make decisions. When Mum and i both hold power of attorney for Dad it surprised me that the doctor didn't even mention this form when he was here a few days ago. He is their GP and as such has had a relationship with them for several years prior to the past few months. We were both quite shocked to find ourselves, without warning, holding a piece of paper instructing people Not to attempt to resuscitate Dad. However, although advance directives are often completed by ill people, DNAR forms can also be completed by a doctor, independent of any input regarding the patient's wishes, on the basis that in the final stages of incurable illness, CPR is unlikely to be clinically successful. Clearly that is the situation we are in and as i said, we do not contest the decision, as on balance we think it kinder to Dad. We are still a bit shocked though; wouldn't you try to warn the patient's family and discuss it, or at least explain the decision, rather than just hand it over?

Stressed?

Dad has slept all day today. He has only been awake briefly for some breakfast, a lunchtime yoghurt and while the nurses have been here. Mum went to the supermarket again today, to get the things she forgot to buy (but which were on her list) yesterday. Once there she called me to ask me to read the new shopping list to her, which she'd left by the front door...

Absent without leave - passive seizures

Dad has been very quiet for a few days. He thumbs a few pages of the newspaper but doesn't really read it, despite having read one every day of the 29 years that i have known him. He often stares at the television for long periods but we can't say how much he is actually interested and how much he is drawn to look in its direction simply because of the sound and motion. He is not interested in food, but mostly puts up with us spoon-feeding him and seems annoyed almost at our insitence that he tries to drink more too. He told me the other day "Stop trying to pump me full of water"
After Dad's recent seizures i realised that he has, i think, been having seizures for a while, but seizures of absence rather than active physical seizures. There are periods where he stares at nothing and it is impossible to get his attention through talking and waving at him. They tend to only last 10 - 20 seconds each time, but it has happened several times most days. He often says a few words of a sentence and then suddenly stops without finishing it. We had noticed that he 'zoned-out' every so often, but it was only after seeing him have an active seizure that i really thought about it. I'm sure he was only confused last night though, when he hiccupped loudly while the nurses were here and i said "Been on the sauce again Dad?" and he replied "No you've been on it for me!" Serves me right for being cheeky.

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.

A chat with Grandma

Dad seemed more ready to wake up this morning than yesterday. He was stirring as i opened the curtains. He also had a small glass of juice, some papaya and most of a yoghurt for breakfast, when yesterday he didn't want anything. Grandma phoned this morning and Dad wanted to speak to her. He only really said "yes" a few times (i'm not sure how appropriately) but Grandma knows to keep conversation simple and not expect too much conversation from Dad now. He then looked keen to have a look at the newspaper, but has fallen asleep on page 2, with his arm across it. Mum's annoyed. Having gone out to the shop in the rain to buy it, she was hoping to have a look at it!

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.

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.

Thanks

I just wanted to say thank you to everyone for the kind words of support that you have sent recently or put on the blog. i'm sorry we haven't managed to respond to everyone but please believe we appreciate every kindness.

Howling wind and the killer ditch

Today has been a quiet day, apart from the wind howling down the chimney. The nurses have come and gone. Dad's shave this morning was far simpler than the other day, partly because his beard wasn't nearly so established, but also i think, because the nurse shaving him was a 'no nonsense' type. Different nurses visit each time and some we are starting to recognise. The ones who have visited before have started to park down in the village square and walk up the lane rather than attempt to navigate the perilous drive and the killer ditch.
Mum was invited to a friend's for coffee and i convinced her to go. I kept on top of work from the armchair near Dad's bed while he listened to the radio and watched some television. The pharmacy finally got hold of Dad's medicines in liquid form today, so Mum collected them. These will be easier for Dad to take than the pills. We now have to work out and write down the equivalent amounts to make sure we get the dose of each correct.

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!"

The Vomiting Cavalier

While Mum was at the shops this morning and Dad was snoozing, her ancient cat sicked up all her breakfast all over the house (five crime scenes so far.) Fortunately none of it was near Dad. She is often a bit sick if she has eaten quickly and i remember Dad telling me at some point last year how amused he was at the speed of her recovery. It is often only a few minutes later that she turns up at her dish ready for another feed! Yuk.

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!

More bangs and crashes

We've had more bangs and crashes today from both neighborhood fireworks and Dad falling over. Again, thankfully, he has escaped hurting himself. We've told him several times with varying degrees of severity. How do we convince him not to try to get up on his own?

Under siege

I forgot to mention earlier, but with it being Bonfire night, all of Mum and Dads neighbours seemed to have parties tonight, involving many many fireworks. Loud fireworks. There were so many bangs, rockets and explosions that sitting with Dad quietly earlier it really felt like we were under siege! I should point out that Dad recognised the sounds and wasn't upset at all. It brought back to mind all our family fireworks nights of the past, including one of Dads rockets failing to launch and whizzing sideways across some long grass instead before exploding, away from all of us thankfully!

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!

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.

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?