Dad

We left a message for Shirley, telling her that there was no point her & Paul visiting later. Paul then called me to find out what was going on and unfortunately things got quite heated. I guess he feels I'm not being very sympathetic but I can't help how I feel. Maybe I'm interpreting the nurse's comments incorrectly but it seems to me that Dad could have a bit longer but he doesn't want to even try, despite having 5 kids and 8 grandchildren who have already suffered one lot of grief this year. I know he is grieving too.

Rachel, one of the hospice nurses, called me last night. We had quite a chat and I told her how I felt. She was lovely, really seemed to understand how I felt. It was so nice of her to take the time to speak to me. She has suggested I take advantage of the counselling offered at the hospice and I think I will take her up on that. Among other things, I feel guilty because it was me who told Dad what the hospital thought was wrong with him, and it seems to me he's lost the will to live since then. So I feel it's my fault that he (and the rest of us) find ourselves in this situation.

Me, Paul and Charlotte went to see him this evening. He managed to say hello to each of us but that was about it. He didn't want the light on in his room. I sat by the bed for a while holding his hand.

Afer a while we went out and had a cup of tea in the lounge. I had a brief chat to the nurse who said they usually need 24 to 48 hours to properly assess new patients, but as far as she could tell the main thing wrong with Dad is depression. They are probably going to offer him steroids tomorrow but I told her he probably wouldn't take them.

I will be going back tomorrow afternoon and intend spending a lot longer there, probably take a book or something.

I'd called Valerie earlier (the vicar of St. Michael's) to give her an update on Dad's condition. She said she would meet me at the hospital at 5, and we said some prayers while holding Dad's hands. Just before starting she asked Dad if it was OK and he nodded, and managed to say "I won't be able to join in". Which of course was fine. It was very moving and I'm so grateful to Valerie for taking the time to do it. After she'd gone I asked Dad if he minded Valerie coming along and he nodded his head.

As we left I asked at the nursing station if they could tell us what the doctors had thought after rounds earlier in the day. The nurse looked at his file and then took us into a side room. She told us that Dad had told them to take the drip out, has refused further blood tests or treatment barring pain medication. So he has definitely given up. They are liaising with St. Luke's Hospice to find a bed and so he will go in as soon as one is available.

They don't know how long it's going to be but it is a matter of weeks rather than months. By the look of him last night it won't be long at all. His blood sugar will fall further so he could fall into a diabetic coma. I just pray that it won't be drawn out, for his sake and ours.

The doctor called the Medical Assessment Unit who agreed to see him so he then called an ambulance. This arrived within 30 minutes (it wasn't an emergency ambulance) and I travelled with him while Paul followed in the car. Unfortunately Dad was sick in the ambulance, so it kind of cancelled out the effect of the caramel. We got to the MAU at about 4pm and sat with him until just after 8. He was seen by the doctor who had admitted him last time which was handy; he was surprised at how much weight Dad has lost. I emphasised to the doctor that we wanted Dad to go onto Orsett Ward, and that the nurse manager at St. Luke's had established that there was a bed there for him.

Yesterday morning Jill from Hospice at Home called to say that Dad had been moved to Orsett Ward overnight which was a relief. Me and Sally went to visit him just after 3 but he wasn't up for talking. In fact he spent most of the time asleep. They have put him on a saline drip which is unfortunately causing his hands to swell up. This is like deja vu as the same thing happened with Mum. At the time they said it was because her organs were shutting down and we're wondering if it's the same for Dad.

We stayed with him for about 40 mins then spoke to the nurse. She asked us where Dad would prefer to die - how surreal to be asked that. We said that if possible it would be at St. Luke's. One of the other nurses on duty was Stuart, who had sat with Mum when she passed away. Deja vu strikes again!

When I got home I called a few people to update them on Dad's condition - Auntie Maureen and Doreen. I haven't called Daphne which is remiss of me, especially as she was due to fly in yesterday afternoon. Must call her tonight.

He's even weaker today and so I have had to admit defeat and get the emergency doctor in. Sally called St. Luke's as we didn't want to forfeit his place in the queue. They were really helpful - they won't have a bed til him until at least Tuesday but suggested we get the emergency doctor to refer him to Orsett Ward at Basildon which is a palliative care ward. Then as soon as they have a bed available at St. Luke's they'll get him transferred.

I spoke to Dad and said I'd like the doctor to see him and he nodded. I feel awful as he said the other night that he's happy to be here rather than in hospital but he's deteriorating much faster than any of us imagined, and we just can't give him the care he needs and deserves here.

Dad didn't have a good day yesterday. Sally was sitting with him for the morning, and then Paul arrived just after 2. Dad asked for help onto the commode so Paul helped and left the room. Seconds later there was a mighty thump. Dad had fallen over. He wasn't hurt but was very shaken. Paul and Sally managed to get him back into bed and he used a bottle instead.

Anne our MacMillan nurse came just before this all happened. She's not happy that Dad still hasn't had blood tests or that he hasn't seen a doctor. She has suggested he go into St. Luke's Hospice for a symptom assessment (I think that's what it's called?). She is going to speak to the hospice manager and see if there's a bed for him. I really hope there is, I know Dad wants to fade away but he should at least do it the right way.

I got home at 7 and went in to see him. He was very weak. I asked how he felt and he said "I'm completely out of it. I'm on my way out Kate." I held his (very cold) hand and asked how he felt about that. "Good" he said. He misses Mum so much and just wants to be with her. I said it was very sad for the rest of us and he said he was sorry, but I said I wouldn't beg him to stay if that's not what he wants.

This morning I went in to see him just before leaving for work. He had a bad night's sleep because of the bed (and Paul said he could hear how restless he was on the baby monitor). Paul managed to get him to eat some mandarins so that he could take his tablets - the steroids have to be taken with or after food.

There isn't a hospice bed for Dad at the moment but he's on the waiting list. Meantime Anne said she would speak to Aveley Surgery to see if she could arrange a GP visit. Unfortunately they are refusing, they said they only agreed to keep him on as a patient but not to do home calls. They are going to speak to my surgery to see if they can arrange for one of their doctors to come out.

He didn't eat very much again, just a bit of vanilla ice cream. He later decided he fancied a burger - minus the bun! Unfortunately we didn't have any in the freezer and the Co-Op was shut so we weren't able to help with that request. Paul made him some scrambled egg and he managed a couple of mouthfuls of that.

This morning I woke him at 7.15. At the time he didn't want any breakfast so I had to leave it to Helen as I had to leave the house at 7.45 - back at work this week!

Helen made him some porridge, he had a small amount plus a plum and managed to keep it down.

The district nurse arrived at 10.20 and gave him a bed bath. They told Helen they will carry on with this type of help until social services arrange an alternative.

Helen also spoke to Dr Prebisz (prob not spelt right!). He wants Dad to be tested for sodium and calcium levels - he thinks Dad's tiredness may be down to low sodium. Which is what happened with Mum.

Roger called this evening but Dad wasn't up to speaking. Hopefully tomorrow!

Just as we were about to leave the district nurse turned up. Dad said "I was hoping we could put him off today". But I'm not having that. I need all the help I can get so I said he should just have a top half wash, he'd feel better.

This afternoon me, Helen and Sally went to Lakeside to buy a couple of things. We got curtains to hang at the dining room door - this will afford Dad some privacy when he's using the commode. We also got an electronic key safe from Maplins. This was recommended by the care agencies as it saves us having to give keys to lots of different people. We'll just put a key in the safe and tell people what the combination is.

When we got back from Lakeside Dad has his tablets and some potato & leek soup. Then Paul and Roger sat with him for a while having a chat.

At the moment (just gone 8 pm) Dad's having another sleep. Need to wake him at 10 for his tablets and then he can bed in for the night.