At first I was afraid........

It wasn't just ghosts I was scared of. My real fear was of a conversation I knew I had to have with Dad. There were two parts to this. I have been wanting to say a few things to Dad for a while now - just to let him know how much he means to me. I got upset at the weekend because I told Roy I just bottled out every time an opportunity came up. Why am I scared of this? Possibly because whenever I think of the words, I break down, and I don't want to crumple in front of Dad. When I told Roy what I wanted to say to Dad he just looked at me and said "He knows".

The second part of the conversation is that I need to let Dad know that it is ok for him to leave us. Giving permission to let go can be a very important part of the dying process, and we have to do it. My fears about this one are the same as above - a dread of it becoming a very distressing conversation for both Dad and I - and then I undo all the positivity we have worked so hard to build over the last five months. More on this later.

So - back to last night - my "vigil" with Dad. Earlier in the evening Mum had sat in with Dad. There was such a cute moment when I looked in on them both. Mum was in her recliner chair, next to Dad's bed... they were both fast asleep. Mum holding a book in one hand and Dad's hand in the other, and Dad holding his remote control in one hand and Mum's hand in the other. One of those lovely scenes where in normal circumstances I'd have sneaked a photograph of them. Never mind, I will hold it in my memory.

I took over in the recliner chair when Mum went to bed. I wasn't very settled but dozed for short periods between midnight and 3.30am. Dad woke at 3.30am and wanted his mouth doing... we use a saliva replacement gel, Bonjela for his ulcers, and Vaseline for his lips to try to keep him comfortable. Did that and thought we would both now go back to sleep. Not so lucky! Dad wanted his tablets. "And this time, I'm taking them MY way!". This was a reference to his constant battles with mum over the timing, spacing and method of taking his meds! I explained that it was too early yet, and he should go back to sleep for a while.

But he didn't. Intermittently - between 3.30am and 7am (when I did allow him his meds) Dad talked a lot. He was clearly not settled. Thing is, if he'd been talking normally I'd have happily conversed with him all night, but he was in a period of "confusion" where he was talking nonsense, really. Telling me about how comedians develop a "flow", asking constantly about his tablets, asking about scaffolding for when we started the building work, many references to the jigsaw, talking as if he were a judge in a courtroom. At one stage, I felt like a mum who's baby won't go to sleep. Another time he asked for more pillows under his feet. I almost snapped! "Dad - you can't have one, there isn't a single pillow left in this house". So we used a towel instead! Mentally I was pleading "go to sleep dad, please!!". But he didn't.

So, we woke up properly and sorted the meds out. I noticed that his catheter tube had split and was leaking so I changed the Night Bag and cleaned everything up (some had gone onto the carpet). Mum then got up and the daily routine began again.

When the carers came, they were visibly shocked at how Dad seemed to be deteriorating, and we asked for them to do just the bare essentials in terms of cleaning Dad. Dad himself was keen not to be moved and messed about. He kept saying "I'll have a good wash on Wednesday".

When Dr Rathbone visited, Dad was asleep. As we stood by his bed I explained that Dad had seemed very agitated in the night - not physically, but I felt that his inability to settle, and the constant talking, was a sign. She said to Dad that something was wrong and she wanted to talk to him about what it was. He woke up and said "Oh hello Dr.... who are those people behind me?". Of course we could see nobody.

A long chat followed between Doctor, Dad and us. He was explaining that he couldn't bear to be rolled around the bed anymore and so we devised a way of reducing the number of times he was manhandled by carers and Nurses. Doctor also explained that she would soon arrange for Dad's meds to be given by Syringe Driver under his skin - no more swallowing. Dad liked that idea. "That'll be great." I don't think we realised quite how big a deal it has been for Dad to take his tablets every day. As Dr Rathbone ended her visit with Dad, he told her "Doctor, I am blessed with you - for looking after me. Thank you for all you have done for me." She looked touched by this.

Mum, Lorraine and I went through to the lounge with Dr K and she told us that she thought we were nearing the end of Dad's life. I asked how long. Days or weeks? Not sure, she said, but probably days. Despite knowing this anyway, it was still a moment of shock and reality kicking in. She prescribed Lorezepam to help settle Dad and told us to give it at night and again in the morning if we felt it necessary. Doctor also talked to us about giving Dad permission to die. So now I have been officially ordered by his Doctor to have that conversation. Better get a grip and get on with it.

Dad slept all afternoon. We had already decided not to leave him alone so the three of us drifted in and out of his room - sometimes just one of us in there, sometimes two, and occasionally all three of us.

At some point, and I forget the exact time, but it was teatime(ish), Lorraine had popped home and mum was eating. Dad woke up coughing... I think I've mentioned his "musical coughs" - he would put a silly tune at the end of them. As he stopped he looked at me and said "I must get that tuned up". I laughed and thought: great, Dad is coherent again.

He asked for a coffee (I can't tell you how good it was to see him enjoying coffee again - he used to drink gallons of it and then went right off it when he got out of hospital) and I was giving it to him as he was now using a toddler's drinking cup. I was rushing a bit, mainly because I expected him to say he'd had enough... he didn't often finish food or drink. Anyway, he drank the lot and I sat back down. He said to me "you were just rushing to get back to that jigsaw". I denied it... "Why would I want to do the jigsaw when I can sit here and talk to you". He smiled and closed his eyes. I was sort of staring into space and had my chin in my hand resting on the bed rails when I felt something. I looked back at Dad and he had held his hand out to me, as a father would to a child, and had this "come on, I know you're fed up - let me comfort you" look on his face. I took his hand and he closed his eyes again.

I knew Dad wasn't really sleeping so I thought I'd seize the moment. "I love you very much Dad" I said. "I know that" came the answer. "Every day, I am thankful for all you have given me" I added. "Always will be". I was struggling now to hold back tears. After a short silence, Dad asked me "Are you frightened?" "Of what?" I asked.... even though I knew. "Me going". "No, not at all" I lied. Dad replied: "Good." I asked "Are you?" "No. You see, for me it will just be like going to sleep." "Yes it will Dad", I agreed. "And I know that very soon you are going to want to go to sleep - and you must do that when you want to. Please don't worry about us - we'll miss you loads, but we'll be okay. All of us. And Mum. Whenever you're ready... just go." "I'm leaving.... two beautiful daughters, a good son and a wonderful wife" Dad said, with the emphasis on the words beautiful, good and wonderful. Then he added "And a mountain of debt". Huh? Mum and Dad don't have any debt!! I corrected him: "Love. A mountain of love. No debt". He laughed and said, oh that as well. By this time I had tears streaming down my face. Dad closed his eyes and I wondered what the heck I'd been afraid of having this conversation.

Later on, I was in Mum's bedroom doing something and I heard Lorraine back and in Dad's room. She was sobbing and trying to tell him something - and Mum had to step in and interpret as Dad couldn't understand her properly. Lorraine - you'll have to tell me this conversation properly so that I can add it in... I don't remember the detail.

Later, Dad asked to see the jigsaw again and cheekily told Mum how well he was doing with it. I can't believe how his humour stayed with him right to the very end. I'd been telling Dad how, every time we put a piece in the jigsaw, Lorraine and I shouted "Yay". A little while later, he was struggling to get the lid on to his sputum pot (or spectum, as he'd now started calling it). When he managed, he looked at me and shouted "Hurray". Cute, dad!

Dad had told mum today that if people rang to ask after him, they were to be told that he was slowly passing away.

He also was asking Lorraine for details of the weather. It wasn't very nice and when she told him, he looked disappointed... "Oh, I'm not getting warm weather for going, then" he said.

Later on this evening, he told Lorraine that we should try to finish the jigsaw tonight. Of course, that signalled to us that he felt he was about to pass and so the two of us sat up until almost 1am trying to finish the thing! We had no chance... it wasn't even halfway done.

Mum had decided that she would sit vigil with Dad this evening. Lorraine went home leaving strict instructions to be contacted if we thought anything was going to happen, and I hit my mattress on the floor.

Roy was right - my dad did know how much I love him.