Dad

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.

Woke him this morning at 7. He'd had a really good night's sleep, only getting up to use the commode once. Roger's in with him at the moment and he's just asked for a small cup of tea.

The district nurse arrived at about 9.30 to give Dad a wash. We'd had to move him into an armchair in the lounge because the bed was being delivered. It duly arrived at about 10 and two young men put it all together and got the mattress on it! Dad felt much better when he got into the new bed. It's brilliant, head and foot move up and down plus the whole thing can be raised and lowered at the touch of a button. Will make things much easier for Dad e.g. when using the commode.

He's getting a little better at sitting up in bed, as long as I support him he can just about manage it. He doesn't sit up for long though. He's had the TV on a couple of times just to hear the news.

Have had lots of phone calls again today so far!

Louise from Hospice at Home: called during the morning to check how things are. She will call again tomorrow, and then at the weekend to arrange visits for next week.

Also had a call from Nicky at Occupational Therapy. She was the lady I spoke to yesterday who got things kicked off. She's very sweet. She will call again on Monday to arrange a home visit with a view to trying to get Dad more mobile. Meantime she suggested hiring a wheelchair from the Red Cross. I called them and they will have one available tomorrow so will need to collect that from Tilbury. Hopefully Dad will feel a little stronger soon and we'll be able to take him out. Even if it's only round the block it will be good for him to get out of the house. It's quite pretty round here in autumn with all the different colours.

Then MacMillan Benefits called. Apparently Dad will be entitled to a high level of attendance allowance. She's sending me an application form in the post so we'll get that filled in and sent off.

Shortly after that Mark, Dad's named district nurse, arrived. Went through some questions and discussion about Dad's condition etc. He wants to monitor how much sleep Dad gets as it won't be good for him in the long term to keep dozing off. He is sending somebody (or he may even come himself) this evening to help Dad get ready for bed. Need to try and get him more self-caring, with regard to a quick wash etc.

The mattress arrived for his bed an hour ago. Unfortunately the bed's not coming until tomorrow! But the guy inflated it anyway and showed me how to work it. It will have to be plugged in all the time, it's one of those air beds which will help prevent bed sores.

This afternoon Dad has an appointment at Basildon Hospital. This will be his first oncology appointment. We (the family) haven't been given an official diagnosis yet but it seems the care agencies have.

Dad has had prawns again for lunch. He doesn't appear to have an appetite for much more than light foods - no bread etc. Mark said the most important thing is to ensure he drinks plenty, which I am doing.

The MacMillan nurse came this afternoon. She spent a lot of time talking to me, Helen and Sally and also spent a few minutes talking to Dad on his own. She's happy with his mental state. Dad isn't in pain and when he's awake he's quite alert.

Daphne is coming to visit next Sunday. She's getting a one way ticket so no need to decide right away how long she'll stay. It will be nice for Dad to have somebody of his generation to spend time with and talk to.

Dad was discharged from Basildon Hospital on Tuesday evening and came to our house in Grays. Since he got home he has been sleeping a lot because he lost so much sleep whilst in hospital.

After the initial problems - no contact from care agencies, no specialist eqiupment at home - we have now got the ball rolling and things are falling into place.

There are three care agencies at the moment:
Hospice at Home which I hope is self-explanatory. They are part of St. Luke's Hospice and can arrange for somebody to come round for 5 hours a week, however we want that distributed. Nothing in place yet but I think we'll have them in for an hour a day.
District Nursing Team They are for Dad's day-to-day medical care - pain relief etc.
MacMillan Nurses most people are aware of what they do (website here http://www.macmillan.org.uk/).