Lorraine and I decided to call the District Nurses out at about 6am, as Dad was coughing and his throat was rattling a lot. There's a drug called Glycopyrronium that is given to relieve this (it dries up the secretions) and I thought he might need an extra dose. The nurses took about an hour to arrive, apparently they'd had an emergency somewhere, and the main nurse agreed with me that she'd give him some more of the Glycopyrronium. She also added some more sedative as it would help relax the coughing reflex.
Lorraine had tried popping some towels under Dad's pillow to prop him up better, but he looked like he was going to cry (you know that scrunched up face that babies do just before they let rip?) so she stopped.
From the early hours this morning, we sat listening to the rest of the world waking up and reflecting on how incredible a journey we've been on. It seems so unreal now to think back and remember all the things that have happened.... it seems so long ago that we were taking Dad in and out of the bathroom and getting his room all set up (and rearranged several times). Various incidents keep coming back to me like flashbacks.
At some point we thought we heard Dad say "had enough" when he was coughing, but not entirely sure.
Today was supposed to be a big day for mum. She has a rodent ulcer on her nose and it needs removing. She had her appointment at St Helens Hospital and had decided that she was going to go ahead with it. I agreed with this as the system here means that if she cancelled she could wait ages for a new appointment and this needs doing. It has been troubling her for years and was only recently properly diagnosed (by Dr Rathbone). I took her along to the hospital, checked her in and said I'd come back when they called to say she was ready. I cried all the way home... crying in the car is a habit of mine, although probably not entirely safe!!
At Mums, I sat with Lorraine and Dad again. I told him that we'd sorted out for him to be buried at Yewtree Cemetery with my Nana and Grandad.... I forgot to mention this yesterday in the blog but Lol and I had been to the Funeral Directors (Dooleys in Widnes) to make some enquiries. I know he wanted to be laid to rest with Tom and Lil (who are actually my mum's parents) so I thought it would be one more thing to put his mind at peace. I then told him that I when I am working again, I'll buy him a bench. Somewhere nice, where people can sit and watch the world go by, as Dad used to love to do. At this point, Lorraine and I were sobbing again. Then I said "But only when I'm working Dad, I'm skint for the moment" and we both started laughing again. Lorraine asked which benches Dad used to like to sit on most... and I remembered (and told him) that he actually used to sit in the car and watch people go by, but I didn't think they did memorial cars.... by this time we were howling laughing. I do hope he heard us, he'd have found it all very funny, too.
So, at around 10 we got a call from the hospital to say that mum's procedure had been cancelled... apparently her heart rate was up too high and they use something containing adrenaline, so they didn't want to make her ill. They sent her for various tests and an ECG and told her she could go home. Lorraine's husband Paul had taken the day off work so he he said he'd go to pick her up. Mum was ages getting back... apparently they'd made her wait for a long time to see the Doctor before she could come home. In the end she got so anxious that something was wrong at home, she just got up and walked out. Because we sent Paul to pick her up, she suspected that something had happened to Dad.
She got home just before lunchtime. I was headed out to the shops, for some more prescriptions for Dad, and as I was leaving mum asked me did we have anything in for lunch.
Well, there's salmon, cheese, eggs, soup.... I rattled off a list of items. Mum pulled a face at all of them. I laughingly said "Mum, in the months I have stayed here I've never seen you eat anything but those things for lunch, and now you're turning your nose up at them!". All of a sudden Mum burst into tears.... I felt awful. What's wrong, I asked her. "I just wanted two sausage rolls" she whimpered. Well we all burst out laughing again. What a funny thing emotions can do to you!
After I got back from the shops, and supplied mum with two HUGE sausage rolls, I sat and jotted down some stuff I wanted to say to Dad. I was concerned that he was hanging on for some reason and wanted him to go to rest if he was ready. But I was so uncertain about what to say or when to say it that I wrote a "script" and shoved it in my diary should I feel I needed it.
The Nurses came and decided against moving Dad at all... the doctor was here too and she just upped his sedative as he was still twitching a little bit.
Neil turned up, as did Lorraine's kids Joe and Emily. Dad's room was full of love, joy and laughter all afternoon. Lorraine had brought the jigsaw into his room and at around 3-ish, Neil finished it all bar the last piece (which he was hiding in his pocket so that nobody else could place it!!). We'd hoped that Dad could place the final piece but this was not to be as he was semi-comatose by now. So Emily was granted the honour... and as she dropped it in we all yelled "YAY" and clapped and cheered. Again, I hope that Dad heard this. I like to think he did.
I said to him "It's finished now Dad. No more to do. Nothing to worry about - everything is done."
Doctor came out again this evening. She spoke to Dad even though he seemed asleep. She was satisfied with his condition. We asked her questions about how we would know if Dad went into a coma and what we should do. She told us not to worry. "He might just go to sleep and pass". I said I think he will do that. She said she'd see us in the morning, unless she heard from us in the meantime. She said to Dad "I may see you tomorrow Keith". This was unusual, for her to use the word "may".
Also, two District Nurses called in. We were pleased to see that one of them was Pam, a nurse he'd known and really liked from the GP's practice.
Around 6.30pm/7-ish I started shaking and couldn't get warm... I can get like this sometimes if I am extremely anxious about something (that said it's only happened a few times in my life). I went to cook dinner and Neil went home. Lorraine and I had noticed that Dad's breathing had become laboured again - a rythmic pumping rather than the soft gentle breaths he'd been taking. We wondered what that was about... a last rally? Fighting off death? As I cooked dinner, Lorraine had a talk to him. She said "What is it you're staying for Dad? There's nothing to worry about - I know you aren't worried and that you'll go when you're good and ready. And we'll be ok".
When we came back in after a short break for dinner (mum was with Dad) his breathing had calmed again. Lorraine seemed to have been able to settle him down when she spoke to him.
Mum was nagging at the two of us to go to have a sleep (we'd been up most of the night) and prepare for another night's vigil. She planned to do the 8pm - midnight shift and then let us take over. I went to call Roy and told him I was going to bed for an hour and would speak to him tomorrow. I went back into Dad's room, I felt a bit unsettled. Lorraine was there and we both stood over Dad. We'd been holding his hands all day between the three of us. At the same time, we both pulled up our chairs and sat down, on opposite sides of the bed. Lorraine said to me - I don't want to leave him. I agreed, neither did I. We giggled and said Mum would have a fit if she saw we were still up and not sleeping. Mum came into the room - and had a fit - but we explained we just wanted to sit a while longer. She said that's fine, she'd go to make a phone call to Dad's brother in South Africa.
The sun had been on Dad's bed since 6-ish. We wondered if we should draw the curtain but we decided no, Dad loved the sun and he was probably enjoying basking in it. About 8-ish, Lorraine had gone back in to Dad and seen a lone tear trickling down his cheek. Aww... we both looked at him, what is he sad about, we wondered. It was a really touching sight.
We sat quietly, watching Dad's breathing and his heartbeat. They were both very gradually slowing down. Lorraine seemed to intuitively spot that something was going to happen and she said we should call Mum in. Mum was still on the telephone. We asked her to finish the call and come in to sit with us. She'd been speaking to Auntie Margaret in South Africa. She came in and sat down, and took hold of Dad's hand. Literally seconds later, he drew a breath and stopped. Lorraine and I looked at each other. I couldn't see the heart beating either. I think that's it, it's stopped hasn't it? I asked. Mum said "has he gone?". We said we thought so. The time was about 10 past 9.
And then began a mini-farce! Lorraine started crying, just as I put my fingers in front of Dad's mouth. I felt something, so I said to her "Hang on, don't cry yet, we're not sure if he's gone". I was desperately trying to feel a pulse on Dad's wrist - but I don't really know how to take a pulse. Mum was shouting "get a mirror, get a mirror". All of a sudden we all stopped. What are we doing, I said... why don't we just call Doctor. Then Lorraine pointed out it had been about 2 minutes since Dad breathed so of course he was dead. And we all cried.
We kissed Dad goodnight - Lorraine giving two extras from her kids - and left the room to decide who to call. We had to call the doctor and the District Nurses. Lorraine said she would be fine to call the Doc. As soon as the Doctor answered Lol burst into tears and blurted out "It's Lorraine". "Okay, Lorraine, I'm on my way" was the calming reply from Dr Rathbone. She was with us very quickly. Mum called Neil, who headed back (seems like Dad knew he didn't want to be there at the end and spared him) and then we rang the District Nurse. While we waited for people to arrive, we made a few calls to family (and Roy) and I manically ran round Dad's room trying to remove every trace of medical paraphenalia. I wanted him to be in his bedroom again, and not a sick room. I bagged up a load of stuff and just stuffed it in the wardrobes for removal tomorrow. The room looked instantly nicer. There was also a beautiful sky outside Dad's window - the north-west sunsets are the best and I miss them since moving east.
Lorraine helped Dr Rathbone straighten Dad's bed (he used to sleep with his head raised and the knee break in the bed, and with pillows under his feet. Doctor was keen to lay Dad flat - the first time we'd seen him like that in about 6 months! At this point, I was not wanting to see Dad again. I wasn't scared of him, but in my opinion he had left the room shortly after Neil arrived to say goodbye. Everything changed then. The body on the bed no longer contained my Dad's soul or spirit.
Neil's partner Lisa called. She'd explained to the kids what happened. Ryan is 11, Jack is 9 and Bethany is 7. They cried and then asked who was going to bring them lollipops now? Then Jack wrote Dad a letter. I'll transcribe it another day... it was so sweet.
Doctor sat with us drinking coffee until 11pm. We thought she was waiting for the nurse to arrive but she was just giving us some support. Throughout the last 4 months, Dr Rathbone has been fantastic. I can never thank her enough for her care of Dad. As we spoke, Doctor commented that Dad was a very strong minded patient, and she loved how he liked to work things out for himself (all those experiments he liked to do!). She said that made her job easier as she could treat whatever symptoms needed to be dealt with and get a good understanding of what was going on with him. She also commented that he would have had a bowel blockage right from the outset (which is why his first symptom was constipation) and that it was probably the tumour pressing on his bowel. She said the stoma bag over the laparoscopy wound site was probably a blessing as Dad could have been in a bit of a mess without it. As we praised her for her good care and attention, she just said that it was her job to make things as comfortable as possible and that she felt our collective family effort also made a big difference.
Shortly after the Dr left, a lone District Nurse arrived. This is unusual as the Night Nurses usually travel in pairs for safety. Somebody was off sick. I hoped that she would not ask us to help her with Dad. She said she wasn't washing him - the undertakers would do that. She'd just remove the Syringe Driver and catheter and dressings. She came out and asked us for some clothes to dress Dad in... we all just looked at each other blankly! Dad doesn't wear clothes! We went into his wardrobe and found a top and some tracksuit bottoms that we thought would do the job. Difficult as he'd lost so much weight since being ill. I didn't want to see him in them. Mum went in to look but the Nurse had put his blue fleecy blanket back over him, too.
She left and then the Funeral Directors came to collect Dad. We said we didn't want to see any of Dad's removal from the flat. None of this matters now, we have done all we needed to for him and will honour him at his funeral. No need for being involved in the "processing" of a dead body. They went just after midnight and we all sat, exhausted wondering what to do next. Going to bed seemed like a good option. I spent a little time emailing a few people and then fell into bed around 2-ish.
About 4 weeks before he died, Dad said to mum that he wanted to go to sleep one sunny afternoon, with his family around him, and then pass away quietly. He did exactly that. Clever Dad. He'd got used to getting his own way in his final weeks - and he called the ultimate shot, too.As one of my cyber friends said, this was the final piece in the puzzle of life. Well, Dad's life, anyway.
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