Reluctant Alzheimers' Carer

2010-05-05T12:01:00.000-07:00

Three of us visited Dad last Sunday including my sister and my daughter. It was 2.30 in the afternoon and we were told that dad was having a shower. We didn't ask why but sat down in the dining room to wait. He turned up, looking very scrubbed, about fifteen minutes later and sat down with us while the staff went off to make us tea. My sister asked dad if he knew who we were. He looked at her and said, "Well, you're V....." he nodded to my daughter saying "and that's B..." then he looked at me and said "I don't know who this young lady is sitting next to me though!"

He had had a haircut in true Brighton style, shaved short leaving him looking a bit like an old Grant Mitchell. He seemed quite happy and certainly looked well despite wearing 'Georges' glasses.

We tried to make conversation that he could relate to but it is difficult. Finally, as we were leaving, he volunteered, "Well, I suppose I'm stuck here then". We agreed and left him heading for the sitting room. He had eaten all the biscuits.

As we tried to get out (there are two doors with lots of locks) I was waylaid by an elderly lady who couldn't lift her head off her chest. She was leaking from her eyes, her nose and her mouth and I began to panic that I would be shutting the door in her face. I hate to be cruel and it is sad to just leave as she is trying to communicate with me.

2010-04-15T10:16:00.000-07:00

Taking dad anywhere early in the morning is a mistake. I knew that.

We collected him from Sparrows at 9.45 am for a journey to Newhaven to see the lead doctor of his mental health team. It was all a rush and we got there just in time. We waited. We finally got in the door and sat ready for the signing off session before he is formally transferred to Brighton and Hove. We recounted how friendly and smiley the care home workers are, that we were happy with their level of care, that dad was apparently well settled in the community (even though he and two others tried to break out).

The Italian doctor conducts the session via me or my sister because Dad cannot understand his accent. We all sit there translating his accented words into understandable Sussex English. We do tests, or try to, and I can't even get the words out when I am required to explain to dad that he must repeat after me "No ifs, ands, or buts"

I make two attempts to say this as we all collapse into giggles. Dad couldn't do it. Neither could he read a sentence given to him. Of course he couldn't, he had someone elses glasses on, again. He put them on, pulled them off, rubbed his eyes and refused to do it.

After repeated attempts to remember three items: an apple, a table and a penny we gave up on the tests. He was unable or wouldn't co-operate and it ended up like a scene from a farce.

The doctor started to jot down his report and wrote: Mr. E is wearing dirty underwear and his hair is rather unkempt and too long. His glasses are not his own and he appears to be wearing his slippers rather than shoes. I looked down at his feet. Slippers, why had I not noticed. Dirty vest, I hadn't even looked. Hair, God, it was long but it had been combed.

Once again I was mortified. We had just bundled him in the car and not actually looked at him.

We were given a lecture along the lines of smiles and cheerful words don't constitute good care and were we sure he was being well looked after.

We drove back to Swallows horrified. The hair has now been cut, the new glasses have been ordered and we have been cut down to size. Poor dad.

2010-03-28T04:09:00.000-07:00

We had a formal 6 week review at Sparrows on Friday with our man from the SS and the representative from the home. We were given a written report which covered all aspects of dad's care. It seems he is coping very well and is less incontinent because of the structure of the care, and, though he wanders a bit at night and goes into other people's rooms for a sit down he is very settled. We relayed the story about when he was in Brighton General on one of the many times he went missing. The staff searched the entire hospital before going back to his ward to see if he had turned up. He had, but he was fast asleep in someone else's bed alongside another elderly gentleman, fortunately.

The home are arranging for some more glasses to be made and we have asked for some check-up on his hearing. The District Nurse will see to that. Sparrows is not far from the sea, so we can realistically take him for a walk when the weather improves. Went to see Girl with the Tattoo (sub-titled) last week, Carousel and today will go and see Alison in Wonderland with Jonny Depp that is if M can be dragged away from his project which is nearing completion now.

see: www.corvairdunebuggy.com On that note we might get an invitation to take it to Goodwood for the classic cars show in September. I will dress up as Faye Dunaway and have already bought the Scarf! Finally, on a sad note one of my followers on this site, a very dear friend, died last week. She was in her fifties and was given one of those horrendous 6 weeks to live diagnosis' out of the blue. She made it for a few weeks longer but succumbed to the cruelty of cancer in the end. She came to stay with us in France and we have some lovely memories, particularly of sitting in the Tabac for a meal when the England v France rugby was on. We were the only Anglaise there and the waiter told us to keep a low profile, especially if we won!

Which we did. All the French sang the Marsellaise so we sang the British Anthem as loud as we could when it was our turn. They were gutted when we won. If they had won they would have been driving round the town all hooting their tooters. We all shook hands and left with the entente cordial preserved.

2010-03-25T03:48:00.000-07:00

No glasses at all now!

2010-03-22T11:36:00.000-07:00

we trooped down to Sparrows with needle and thread to sew yet more labels on clothes. He was fast asleep in the very smelly communal room so we suggested that we go and sit in the Quiet Room used for visitors. He didn't want to do that so we went up anyway, there wa s no way that I was going to sit in the communal room. Once again there were lots of staff on duty and eventually one of them persuaded dad to come and sit with us. The conversation was sporadic:

"Have you made any friends, dad."

"No"

"What is the name of the chatty lady"

"I don't know"

It all continued in that vein and everything we said he didn't hear properly so I think we must look into getting some ear wax drops . He did tell us that he had been up to the eye hospital with a woman to get his eyes checked!! Perhaps that is why he is, once again, wearing someone else's glasses. I walked into the communal room and inspected everyone's glasses to see if they had dad's. None. In the end we left him wearing the 'stolen' ones because he looked good in them!! I am taking my aunt and uncle down to Sparrows to visit on Wednesday, I hope he is up and properly dressed. I might ring up first to check.

Dead! I didn't know that

2010-03-15T12:11:00.000-07:00

I told dad that I would put some flowers on mum's grave for mothering Sunday. He looked confused and then we heard the comment "Dead! I didn't know that".

When we were all living in the same house I was a constant reminder of mum because, apparently, I look so much like her. Most of the time he called me by her name.

Gang of Three

2010-03-13T03:30:00.000-08:00

Dad looks more than comfortable in his care home. He has someone else's cardi on, no glasses in evidence, but he has been adopted by two other people - a very chatty lady and another man. They are more animated than some of the others and are becoming an item. We asked if they were being troublesome. "Oh no, it's lovely, but they lead each other on" We went up into the little private sitting room and had tea with him. He asked "Are you hiring this place". We knew what he meant but he couldn't get the right words, so we just said yes. "Doesn't that make it difficult in the kitchen". Bless.

We had a few laughs which was great and he is a good colour and very chirpy. I popped along to his bedroom and there were a few cards for him which is lovely. It all looked nice and clean. There are a lot of staff on duty and no one is left to wander aimlessly. No-one would wish to be in this situation but dad seems really happy which is wonderful for him and us.

M. returned from the States avoiding tornados, he looks knackered but cheerful.

He is to become head of ........automotive which is a worldwide position and could herald another big change in our lives. With dad settled we can concentrate on getting back to our world wherever it is. I so miss my own furniture and books and pictures and I can't live like this for much longer.

2010-03-05T11:34:00.000-08:00

Glasses are with their rightful owners. Clothes are where they belong but largely missing name tapes. We have ordered another lot. Lots of pictures on the walls and people have sent dad cards so, hopefully, all is right with his world. I feel much calmer if a trifle bored!! We will visit dad this weekend before M. goes to the States. Went to the garden centre and bought some spring flowers in readiness for Spring but it's not here yet, it's bloody freezing. It is 17 degrees in St. Remy.

2010-02-26T09:59:00.000-08:00

I rang Hookstead respite this morning to tell them about the mystery glasses. They have got his waiting. I will drive over to Crowborough pick them up and then go to Brighton swap them and then post the mystery ones back to Crowborough.

The meds were delivered today for the last time, I hope.

Dad has a visit to the mental health dept in March, hopefully the change of address to Hove won't affect his consultant. When I thought about dad today I did so with a sense of relief that he is in a permanent place and all being well will stay there for the remainder of his life.

Pat, if you are reading this I haven't forgotten about the card. Hope all is well.

2010-02-25T10:07:00.000-08:00

E. went to see dad today and said she didn't like the communal areas but his bedroom was nice.

She had made a collage of photos to hang on the wall. I tried to dismantle the beds ready to throw out. We will buy a new single to replace the twin beds.

I have developed an awful rash which I can't get rid of with anti-histomine and calomine lotion. I think it might be stress related as I have had such things before but I am not so painful now.

2010-02-24T14:01:00.000-08:00

We arrived at Sparrows (It definitely doesn't qualify for something balletic like Swallows). A good sign, as we drove up, was the carpet cleaning outfit. The place smelled nice.

Dad was fast asleep in the sitting room but he was wearing his outdoor coat! We trundled up to the top floor with the pouffe (the only bit of recognisable furniture that will fit) a pot of hyacinths that smelled heavenly. I wrote name tags, again, and noticed that there were only three pairs of pants left. We had several half hearted conversations and then I noticed ....someone has lost their glasses because dad has them on...This will be the third pair.

As we drove away we both sighed with relief. Everything is going to be OK.

2010-02-23T09:29:00.000-08:00

Dad has arrived and settled in. We will leave him until tomorrow so that he makes an effort.

I should feel happy or relieved but I am too tired to feel anything. I think if the weather were better we would revive but it is so depressing.

Occasionally I get comments left on this site but I can't open them they come up as little boxes, does anyone know how this works?

I might take a look at some short breaks in the sun.

2010-02-22T10:08:00.000-08:00

Finally got to see dad again at the respite home and reminded him that he is moving tomorrow.

He just nodded and went back to sleep.

I had cancelled his medication but reinstated it again today for a further two weeks.

Went to the National Theatre on Saturday to see an Alan Bennett play. It was a wonderful experience with witty dialogue. The subject matter was less appealing but very funny.

I had to spend the next day in bed, sleeping, to get over it all.

An outreach worker is going to collect dad and deliver him to Hove. We have written to all our relatives and some of his friends explaining what is happening and ask them to remember him with cards, postcards etc. He knows who everyone is and it will keep him aware, perhaps.

2010-02-19T08:52:00.000-08:00

Dad is still in quarantine and unlikely to move until Tuesday and then only if the Hookstead has been free of D&V for 72 hours.

2010-02-15T07:36:00.000-08:00

Went to C'borough again to deliver meds. The D & V is still taking victims so there is no change of dad getting out for the next few days nor can we get in.

2010-02-13T02:36:00.000-08:00

Friday: Dad succumbed to the D&V. Everyone on his floor has it now. Apparently, the three men ate breakfast as normal and then a few minutes later they all dee'd and vee'd.

I didn't have a good day either but had to go to Brighton to personalise dad's room ready for when he gets there. Forgot the pouffe but took photos ( all labelled). Then drove to telscombe with an old photo of dad in his army kilt when he was about 20. A photographer will reproduce the pic and tidy it up then we can frame it to match one of Mum at the same age. Drove home like a zombie and forgot to put the car into park as I tried to get out. Wondered why it was running backwards.

Just got it sorted as it was inches from the car parked behind. The poor bloke who owned the one behind looked horrified. I was horrified and not safe to be on the road. Went home and went to bed. Not a good day.

2010-02-11T09:59:00.000-08:00

He didn't go! The respite place has imposed a 'lockdown' following an outbreak of D & V.

I wouldn't want to be caring for numbers of Deeing and Veeing all locked in and everyone else locked out. Horrific.

2010-02-10T04:01:00.000-08:00

Swallow Lodge will take dad under it's wing on Thursday (subject to snow). We have agreed that a member of staff from Hookstead will take him and we won't be there. This caused a bit of soul searching, but Dad responds to others and will not question the new arrangements whereas if we take him he might react badly. I will go and see him this afternoon and explain what is happening.

I have organised his medication for the next two weeks to tide him over.

I went to the ballet (Romeo & Juliet) last night and in an effort to economise I only spent £25 on each ticket. Never again, we were up in the gallery which is four floors up steep circular stairs. We were in the front row but there was a small guard rail which cut right across the vision. As the curtain went up and the dancers appeared on stage there was a raised area at the back of the stage and anyone dancing on that had there heads cut off by the front upper edge of the stage. I am not explaining this very well but take my word for it that the giggle level shot up as all those beautiful dancers lost their heads. We couldn't help it - so comical. We thought we would lose the balcony scene altogether but luckily there wasn't one. Romeo and Juliet without a balcony!

These issues aside it was wonderful, comic in places and the principal ballerina was so delicate she looked like a feather. An advantage of being in the Gods was that we looked down on them which allowed you to see all the dancers footwork.

Another giggle moment came when I saw one of the principal males was going bald. Can you have bald ballet dancers? I am glad I made the effort to go out in the bitter cold but the whole programme lasted three hours which was a trifle long. When we came out of the theatre there were lots of people about, Massive Attack were on at the Dome with their show finishing before ours. I love Brighton.

2010-02-08T03:52:00.001-08:00

I have to get dad's meds to Crowborough and it is snowing. The manageress of the care home also has to get there today. Crowborough is a nightmare in bad weather.

Feel very unwell at the moment, so tired and painful. Haven't got the energy to motivate myself.

2010-02-05T06:18:00.000-08:00

I managed to get to sleep last night with some homeopathic sleeping tablets, in fact I slept a little too well and when our chief nurse (mental health) rang at nine I was still in the land of nod.

"good news" he said we have got funding. So that's it. We just have to get the Manageress to assess dad on Monday and then we can move on to the next stage of our lives.

I will spend the weekend selecting clothes and pictures for his room. We did think of giving him a budgie as he used to show them when younger. The trouble is he might not look after it and the poor thing will be neglected. We will write to everyone in his address book and tell them of the change of address. I will ask people if they would sent him the odd card or postcard so that he gets some continuity. He has no problem yet in remembering people, particularly if they are long term friends.

The weather is beautiful today and I walked up to the downs with the dog.

2010-02-04T08:22:00.000-08:00

Guilt. Last night I lay away for hours wishing I was anything but human. If I was a bird I wouldn't suffer from a conscience or guilt. My guilt is not logical and is, in truth, entirely irrational. I lay rigid having to consciously relax my bones every other minute before discovering myself rigid again.

In between trying to plea bargain with my mother (dead for 5 years) over my father's care by myself and my sister I tried intoning sleep inducing mantras. I got up several times and know that I was still awake in the early hours.

This morning I couldn't get up and stayed in bed until 12.00 I have studied the quality care report of the home we have chosen. It scores level 3 in every instance which is good. The staff think highly of the Manageress and all the staff are well trained. All is well. I wonder if my brain will accept that and let me relax and sleep tonight. Probably not. I think the Guilt is going to be felt no matter what happens. Sleeping tablets will do it.

2010-02-03T09:47:00.000-08:00

Dad's funding level has been lifted slightly to accommodate the Brighton and Hove rate. We are still dependent on tomorrows committee meeting. If it is approved then Val from the home will go to the respite place on Friday and if she says yes then Dad can move in next Monday.

While we were talking to Val she told us that all spectacles are labelled by an optician and false teeth are taken out and engraved with the identity. Followers of this blog will know that we have lost both spectacles and false teeth. She asked us not to get upset if we found dad wearing someone else's clothing or vice versa. It happens, she said. We know! I just hope the belly dancers don't lose any of their outfits.

2010-02-02T13:05:00.000-08:00

We have had a roller coaster ride over the last few days. Could we afford this or that. Finally, today we went to Brighton and rang round a few places and found two with space. We have taken a place for dad in Hove which is near my sister's home. I have to say it wasn't the greatest looking and could do with a lick of paint but the lady in charge was very helpful, realistic and we liked her attitude. His room was a decent size with it's own loo and sink. It didn't smell and the afternoon activities were novel! A magician, various singalong people, and get this....belly dancers.

Apparently, they are all nurses who turn out for charity. We saw a photo. We came home and now I don't know whether to be pleased or not. I will hang on until it's all signed up.

Once again, I feel drained. I burnt all of the dinner - it's a crap oven and my mind is not on turning out meals.

2010-01-30T03:15:00.000-08:00

The sun is shining! I slept until 9.00 and got breakfast in bed, wonderful. Still very tired but quite comfortable. M has gone to work on the buggy for as long as he can stand the cold. (www.corvairdunebuggy.com) click on intro.

I am going to pootle today, I have a new book, and will go over to take dad's meds later on, not got enough energy to do anymore. Tomorrow I want to see Avatar and go and see my nephew's art in an exhibition in Brighton.

2010-01-29T06:24:00.000-08:00

No news yesterday but this morning we had a call to say that funding would almost certainly be made available next Thursday. We talked about homes. The ones we wanted are all full.

The County (East Sussex) only pays a certain amount and lots of homes cost considerably more than that amount. Dad is contributing a substantial amount. I still don't get how this works.

I don't really care anymore as long as we find a friendly, clean and cheerful place with people who are not all in a dreadful state. The home will have to be suitable for mental incapacity which cuts the number down enormously. Dad has his problems that are now too difficult to manage at home but, he is not incapacitated like many people we have seen.

We need a place with people who are similar to him. This is so difficult. You think you have achieved what you desperately wanted and then another lot of goal posts appear. Hopefully we will get a few possibilities on Monday and go and see them immediately. We have to keep in mind that we want him where there are some 'normal' mentally deficient. That's a contradiction in terms.

I have done nothing today but I feel absolutely drained.

2010-01-27T10:51:00.000-08:00

Excitement. A call from our man in charge. He has an inkling, only an inkling that we might, just might get the funding this week.....

Only trouble is the rooms we had lined up have gone to some other person.

Would we consider somewhere else?

We spent ages trawling round homes: some nice, but too expensive, some smelly and dingy with staff who looked like they were patients and the home we eventually plumped for suited us and dad. One of the points in its favour was that we wouldn't be ashamed for any passing relative to visit him there. The matron was cheerful, practical and had been 'in the business' for years, first as an employee and then buying the place along with another nearby. If you follow this blog backwards you will see that she visited us and accepted Dad as an 'inmate. I'll rephrase that, a client, a customer, whatever.

She kept a room for us for a good time but had to let it go whilst ESCC left us hanging every week.

Would I consider anywhere else? I talked myself into it.

"Well, I said, Dad has settled so well into respite he clearly suits that way of life, so we have less worries about how he will adapt.

We agreed that the team who find's places could be set this task immediately and hopefully come up with something within two days by which time we will know if the Committee are ready to fund him, always remembering that this is only an inkling....

Keep your fingers crossed for us that a) we get funding and b) a place is found that is not smelly, and has decent staff. Is it too much to hope for, probably.

2010-01-27T06:59:00.000-08:00

Got dad to the doctors for his blood test, non-fasting, fortunately. We were a bit early so sat and waited while he went to sleep. The nurse didn't swab the site and as she put the needle in (I turned my back) he moved and started to get up saying "but I've only come here for you" He thought he was accompanying me to have the blood test and was quite put out to find it was his blood they wanted. Back we go again to him being the responsible adult and me being the child.

I knelt on the floor and held his hand as the nurse had another go at getting some blood which was successful. I didn't like to watch, his arm looked so puny and the skin so papery thin I felt it on his behalf.

We got back to the home and I asked if they could arrange for a hair-cut as well as the podiatrist.

Apparently we needed to lodge some money in the safe to pay for these extras. Luckily the hairdresser was in today so I took him downstairs to a room where two ladies were having their hair set. He sat in a chair and waited his turn. I left £40 to cover £6.50 for the hair and

£22.50 for the footcare.

2010-01-26T04:23:00.001-08:00

I think I will try and pluck up courage to get dad to a barbers when we go to the doctors tomorrow.

I get very nervous about continence issues and I can't very well follow him around cleaning up if he sprays the walls or makes a mess. .

You can't just tell him to go to the bathroom before we leave. He will treat me to a withering look

and an indignant attitude and then five minutes down the road he'll say he needs the loo or, worse still, not realise and we walk round with obviously wet trousers or mess!

2010-01-25T09:37:00.000-08:00

Dad was pleased to see me today when I went over with his meds. He looked a bit scruffy - his hair is too long and his shirt was hanging out but otherwise he looked well with a smile that sort of welled up. In fact, he looked a bit like an elderly 'Just William'

They were just about ready to have lunch but he was convinced they weren't having any today. I wonder if his sense of smell has gone as well as the connection from his eyes to his brain. You could smell the lunch, you could see the preparations and the trolley with obviously hot serving containers, but he said: "I don't think we are getting any lunch today". When we had his eyes tested recently the optician said his cataracts were worse but he could still see quite reasonably. (The hospital told us not to bring him back anymore, they didn't want to do the cataracts). If he can see quite well it must be his brain that is not computing what he is seeing.

I didn't stay long as I am going back on Wednesday to deliver him to the doctors for the tests.

We went up to London last night to Ronnie Scott's and had a great time. The blues music was brilliant and the food was good too. We had the best table, about a yard from the stage!

They are doing another show at the end of the month with Jack Bruce (Cream) doing a guest spot.

2010-01-23T10:55:00.000-08:00

Still grey but I determined to go out. I walked down the town and went to the library. I adore going to the library. I ordered two books: The Luminous Life of Lily Nelly Aphrodite by Beatrice Colin and a book by Irene Nemirovsky. I paid my 80p for each reservation and couldn't bring myself to pass by all the lovely books on display even though I have several books on the go already. In France I have 65 boxes of books in storage and I miss them so. My dad has only got a few books here in the house; most are Reader's Digests compilations so I resort to them when I am desperate. One of his fiction works, which I have just finished, is The Sea Wolf by american writer Jack London. It was written in 1909 and is a peculiar mix of adventure, savagery and delicate love on the high seas. I am also reading an Iris Murdock.

When I left the library I waited at the bus station of catch the local service home. I forgot that the Saturday timetable is reduced and I stood there for a long time. Three of us got on the bus and settled in when the driver took the wrong lane. Were we being kidnapped? Did the driver know something we didn't? We all looked at each other wondering whether to mention that we were going the wrong way. Nobody said a word until the driver shouted out, at the top of his voice, "I forgot where I was going". Everyone breathed a sigh of relief but instead of carrying on he turned back and went round the one way system again to collect anyone waiting. This little incident united us and we all exchanged smiles, raised eyebrows and friendly nods. Travelling by bus is a community affair in Lewes whereas in Brighton you don't make eye contact with anyone.

2010-01-22T09:50:00.000-08:00

Alison, if you are reading this, I thought the rat and the manchild blogs were funny. You cheer me up. If anyone else is reading this you can access above by going to blogs I share and click on

the one about biting and neck.

2010-01-22T09:02:00.000-08:00

Another week and no result from ESCC for dad's next level of care. The respite centre telephoned today to say they had called a doctor because they thought he was sleeping too much. I started to say "well he always does that" but then stuffed the words back! More blood tests and a urine check have been called for; perhaps we will get lucky and a new doctor will find something that all the others have missed!

I will go to C. on Monday to take his meds over and again on Wednesday to take him to this new doctor.

I have a couple of outings planned to cheer us up and get our minds off the grey, miserable, diabolical weather. St Remy has had snow as well but at least the sun shines there.

We are going to a blues club for a dinner and live show in London and next week I am going to book tickets for the Royal Academy to see the Van Gogh exhibition. I will take E. with me.

I have seen so many of the paintings and the exhibition at the Cathedrale de Image but I would like to see the letters and some of the lesser known paintings. St. Remy de Provence still uses the hospital where VG was sent after the ear episode. I often went there to walk in the cloisters or the garden and look at the work of today's patients. There are some prints of the 'treatments' dished out to the unfortunate inmates, and one has to say that if they weren't mad when they went in they would be when, or if, they came out. VG did his best work whilst at St. Remy

and the town is a mecca for would-be artists. You can stand in or identify the views that are now world famous and the colours and light capture Provence as we know it. After he left St. Remy he only lived for another year before he shot himself, badly. ie. he didn't die immediately.

The sad thing is that he never sold a picture in his lifetime. Near to St. Remy is a lovely town - Arles, where VG first lived when he moved South. He used to sit in a bar and paint the square around him. We often go there for cafe but the service is pretty bad. The garden is kept as it was and the properties surrounding the square are much the same.

I didn't really appreciate Van Gogh until we went to Provence but he captured the essence of it.

Back to dad: In the Telegraph today there was a news item about a couple who had seen over 160 different carers in a number of months. I'm sure our lot could compete with that.

2010-01-19T09:05:00.000-08:00

Both V and I went to see dad yesterday. Despite falling out of bed twice he looked really well and cheerful. He didn't fall asleep at all and apart from a missing button on his trousers he was quite respectable. The exquisite lady is still there and you get a real sense of community amongst the six people who currently inhabit the top floor. We were asked to bring more socks and clearly there must be borrowers because he has had loads of socks. We requested a chiropody visit because the staff are not allowed to cut toe nails. Hand nails are OK but not toes....I wonder if there is any connection with missing socks. He still has his old glasses on so the missing ones never reappeared. I checked he still had his spare teeth, I couldn't cope if they disappeared as well. We have no more pairs to fall back on.

It is a mistake to ask dad questions because he can't manage answers but I do it anyway.

"What did you have for lunch?"

Beef and fish he assured me, earnestly.

A friend called round today, her mother is in the same boat as my dad so we have a lot in common and regularly compare notes on which services / agencies we use. This can be very rewarding to talk to people who know exactly what it is like here in limbo land.

We went to the local pantomime with my great nephew; he was terrified of certain characters and had to sit on his mum's lap. When the main character called for a volunteer he was up there like a shot and all anxiety went out the window. Sitting behind me was a lady who used to live next door to mum and dad. She told me that she had to visit her parents daily because her mother was 86 and her father had Alzheimers and still lived at home. The mother, at 86, was the carer! They have no help from any other source. It is unbelievable what people cope with.

I must send an email to our social services guy to tell him how well dad is getting on. It re-inforces that we have made the right decision and it is down to him that we have been allowed so much respite.

My sister signed a document to allow a Swine Flu innoculation. Hope it doesn't upset him.

2010-01-13T11:38:00.000-08:00

We woke to another whiteout! We have an icicyle over a metre long. Had a phone call from the respite home to tell me that Dad had a bruised eye with a small cut. They had called the District Nurse out to him but she said it was fine and not to worry.

I also had an email from social services man who has extended the respite, again, until the end of February.

I asked about the weather conditions up in Crowborough. Pretty bad. I won't attempt to visit until the next delivery of meds is required.

I had an email from one of dad's regular carers asking how he was. She has given this occupation up now but she still takes an interest in him.

2010-01-11T06:38:00.000-08:00

I have been thinking about the home service carers; life must be so difficult for them in this bad weather. In the past I have complained, forcefully, (MP, County Council, Care Provider, Authority for Quality Control etc. etc.) about the worst aspects of care i.e. they don't turn up or they don't do what they are supposed to do. On one occasion a carer left faecal matter trapped in the bath, towels, bedding etc. all of which she described as having been cleaned . I caught her out because I was, unknown to her, in the house!

My relationship with carers is very much a love / hate one. I love the conscientious ladies, I hate the ones who rush in, do the minimum and look no further than the end of their noses and say they have been there an hour when I can see that much has been left undone. I will go to enormous lengths to help the good ones, even the mediocre ones: I'll cover their tasks if they are late, I'll clean up on their behalf, I'll even write them a reference if they want to get out of the business. I will help them as they help me.

There is very little to attract people to the business of caring. They are effectively self employed and therefore dependent on large numbers of 'clients' to make their living. They are not paid for time spent getting from one job to another. It is not as simple as them only doing clients who are in one particular district. They might go from one end of town to another three or four times in a shift. They might have 15 'tea' calls varying between 15min - 30 mins all within a narrow time band say, 5.00 pm until 6.30. If the calls are as simple as 15 minutes each with travel time on top of that, you do the maths. We have had tea calls late into the night on occasions. If dad needs cleaning up on a call it all takes time and they have to make it up by rushing someone else.

We negotiated, and pay, for an hour every morning for the breakfast call just to ensure they have time to give him time. Lunch call we get by with 30 mins and tea time with 30 mins. Technically this should all work but factor in weather such as we are currently experiencing, inconsistent standards from different carers, staff sickness (always last minute). For a 15 minute call these girls earn approx £3.00. They either don't get enough clients in which case they earn very little - certainly not enough to live on or too many clients which must cause the good ones a huge stress factor.

The turnover of carers is huge and my plea for a certain person is often met with the response "Oh, she's left".

The 'management' of these complex timetables has to factor in personalities, carer's family commitments, whether they can drive, their level of competence in difficult cases. The management personnel get the brunt of problems and they don't last long either!

Our experience has been nightmarish on occasions. The biggest problem can be those carer's who simply don't turn up thus leaving a frail person without food or drink or meds for long, long hours. If I hadn't been around we would have had to put dad in care years ago simply because I could not rely on the level of care from the carers. Dad is fortunate inasmuch as he has us to keep an eye on things and if I am away there are more family members to take up the reins. Many people have no-one.

This last week, with our area deep in snow and ice, where few cars can get around easily I wonder how the carers have managed. The postmen have not delivered for days yet these poor women will have been expected to turn out from 7.00 am and be paid a pittance for doing it.

As I said: it is a love / hate relationship but I have every sympathy for the task they try to do, sometimes in impossible circumstances. If society valued these workers and paid them a decent salary to do a difficult job we would all benefit at some point in our lives.

2010-01-09T04:27:00.000-08:00

Crowborough was cold. 1.5 degrees lower than the nearest town. We kept to the main road and managed to deliver the meds and a new toothbrush. I am so relieved dad is still there I don't think the home carers could have helped us much with this amount of snow impeding their progress.

It snowed again last night but the car was on the main road so it was relatively easy to get out and to the shop for a few bits. Last night I went up on the downs with H. There were so many people out all having a riot with their sledges and games. I looked across to Newhaven, it was so beautiful with a warm pink setting sun. I took a photo on my phone and if it comes out ok I will post it later.

We are in now for the duration of the weekend and anticipate a blizzard today and tomorrow.

2010-01-08T02:02:00.000-08:00

We are going to try and get up to C. today to deliver the meds. I can't drive at the moment unfortunately so M. will do it. Snow is still lying deep and no traffic is moving on the estate but the main road should be ok later today. Getting bored now and H. doesn't want to go out and get his little paws wet.

Have been feeding the birds as they have been looking very forlorn. The back door to the conservatory froze shut. I put some pear drops in what is left of the vodka and made a lovely drink but too strong for me to drink neat, lots of ice cubes needed.

2010-01-07T11:24:00.001-08:00

Dad's meds came by taxi, now I just have to get them to Crowborough which is the most difficult place in Sussex for bad weather.

We dug the car out and got to the town for some food but couldn't get back to the house. Parked on the main road and trudged home. Everything looks absolutely beautiful and there were lots of people busying themselves with sledges and shovels. E. was on a bus in Brighton which was sliding. Scary.

Rather worried to find that someone called Raymond Losey has left a comment which has come up as gobbledygook. Didn't actually think people would be reading my stuff. Are you friend or foe?

2010-01-06T11:09:00.001-08:00

Deep snow and stuck on the estate. No traffic moving. I have serious pain today and will not even attempt a walk. Hope all the carers get to work in Crowborough, or anywhere else, for that matter.

2010-01-05T03:11:00.001-08:00

We had a call from our kind social services chappie. He has managed to extend the respite, again.

We are now ok until the 21st Jan. The room we were hoping for in the care home has gone to someone else because we still haven't received the funding he is entitled to. The committee only meets once a week and invariably give the money to the most needy. It has been weeks now.

We are all agreed that to move dad back home and then to another place would not be in his best interest, nor mine.

I went up on the downs yesterday morning, it was very beautiful and quite exhilarating but today I am exhausted. I think I must try and do this at least three times a week to get back into some level of fitness. Daunting but hopefully doable.

2010-01-04T10:59:00.000-08:00

I took the dog to see dad today and he went down very well with the inhabitants. The exquisite lady (Margaret) was still there wearing the most elegant of clothes. Hugo went up to her when she petted him and then he jumped up......The beautifully woven skirt got caught up in his nails and pulled a number of threads. She was quite charming about this social disgrace but called the carer over to try and pull the threads through. Unfortunately, only one of them returned to normal. She informed everyone that it was a new skirt. Her story came out whilst I was sitting with dad. Her husband had suffered a bad accident hence her change of circumstances. Tom (elderly with walking issues) couldn't understand why he was expected to stay the night; did his wife know where he was, would anyone be coming to get him, today. Margaret did her best to explain that he would be staying the night, over and over again. He couldn't retain the information and became quite upset. Another gentleman, Tom, looked over my shoulder and asked if that was the sea outside. No, I replied, we are in Crowborough, the highest point in Sx and far away from the sea.

Oh, I thought we were in Eastbourne he said.

Dad ignores them all and continues to sleep. He looks very rested but is wearing someone else's clothes and doesn't have his glasses on, again. He has also lost his toothbrush.

2009-12-30T04:07:00.000-08:00

Bored with Christmas now.....It is raining. Wish I was in France.

My new year resolution is to be more cheerful.

Family coming to dinner tomorrow night and staying over, in dad's room. I have prepared room with expensive air freshener and my White House bedlinen but it still looks dingy. I wonder how M. will feel about redecorating. Our belongings - clothes, books, pictures and furniture will have been in store for nearly a year which just goes to show that you can live without things but it is not very nice. I think we will have to make decisions soon as to what we are going to do, we can't keep on paying storage but we have too much to fit into this little house.

My new year resolution is to be more cheerful

Write this 100 times and I might remember it!

Happy New Year

2009-12-27T09:52:00.000-08:00

Today we varied the traditional Christmas Fayre by having beef. I pootled through the cooking with a couple of a variations on the veggies. Instead of mashed swede and carrot combined with a dollop of butter and sprinkle of black pepper, I mashed the swede with butter and horseradish sauce. Delicious. The roasted parsnips were accompanied by batons of carrots all sloshed in honey, olive oil and whole grain mustard and then cooked in the hot oven. They weren't quite cooked enough but timing was always my problem with cooking. Pudding was to be banoffee pie, a family favourite. Having had a bad accident with the tins of condensed milk exploding in the past I was greatly relieved to find the caramel ready made and just as good. It only needed to be put together. Unfortunately, (there is always one of them in our house when I am cooking) I forgot that we had no means of whipping the cream. I fetched my son into the kitchen to hand beat it.

That lasted all of 5 seconds before he went off in search of a better means that didn't involve manual labour. If I didn't know before that my son was his father's progeny - I do now. He came back with my husbands electric drill and inserted a fork into the bit before switching the power on. It worked. The drill however was ruined. A minor detail compared to not having banoffee pie. Usually it is the men in my household who make off with my kitchen knives etc. and use them for the wrong purpose now I have got my own back. The pie was delicious except that I hadn't quite cooked the pastry base.

2009-12-26T12:09:00.001-08:00

We went to the respite place to see dad on Christmas morning. All was well, except someone else had dad's shirt on. It's a very distinctive shirt - black with great stripes. Not many old men wear black shirts; it reflects dad's teddy boy past! It was a bit tight on the old guy. One of the carers dressed up in an ill fitting santa suit and then proceeded to do a hoola hoop routine in front of everyone! Bizaare. Then all the residents were served schooners of dry sherry. Dad downed his in one go. We left as he fell asleep.

2009-12-24T10:39:00.000-08:00

I have been told off for not keeping my blog going. There is plenty to say but it is not all about Dad.

We are all ready for Christmas, loads of food but nothing to eat. The fridge is full up and bursting at the seams with the freezer just as bad. Prescribed menus leave nothing to spontaneity (sic).

Anyway, it is sausage and chips tonight and bags of sweets. I Bought 7 bags of sweets yesterday to put out in festive bowls to be dipped in, as and when. The as and when took place last night and five of the bags disappeared. Today I replenished.

Two of us are going to visit Dad tomorrow and the other two are going to visit the other dad then we will all mass in Brighton for an agenda packed day. Secret Santa clues still to be written which is a bit difficult as two of our lot don't know the premises very well. I am basing my clues on nursery rhymes such as: incy wincy spider climbed up the spout...etc. Spout meaning teapot which is where my first clue will be found!

2009-12-18T13:32:00.001-08:00

Thursday came and went still no news of funding. No surprise there then. It snowed big time

5/6 inches and everywhere came to a standstill. We got stuck out and had to abandon car and walk home in a blizzard. This does not feel good. Sharp pieces of glass flinging into your face.

Managed to get into Brighton even though there were no buses or trains to see Chicago at the dome.

Theatre was sold out but only third full. Freezing cold but drove home. Lift dropped me at bottom of hill and I walked the rest. Quite worn out with all the excitement.

2009-12-16T10:00:00.001-08:00

We took a spare pair of glasses over to dad as the respite centre still hadn't found his glasses.

As we walked into the communal sitting room dad was being taken off to change his trousers!

We sat and waited. The lightbulb lady did not look quite so immaculate but her clothes were very smart and I was quite mesmerised by her gentility. She wanted to know what day it was as her birthday was coming up (tomorrow). As we waited I pulled the spare pair of glasses out to clean them. M. said "Are you sure they're his?" I looked at them. I don't think they are his either.

They had the wrong type of lense. Oh dear.

He came in and sat down next to us but clearly he hadn't been changed into clean trousers because he smelled.

Shavers and light bulbs

2009-12-16T09:45:00.001-08:00

We took new clothes and shaver over to dad and he did look a little more respectable. He had been moved upstairs to the bigger unit. The other residents were quite chatty, one of the ladies was flirting with him, bless. A fragile looking lady, beautifully dressed with exquisite skin was very distressed to only have one light in her room. The bulb had gone in the other. She approached everyone who came near to tell them about it and what should she do. She hadn't got a torch either. The staff kept telling her that the maintenance man would come and mend it soon. That wasn't satisfactory and she really needed it done now. She was so genteel and well spoken, her hair was immaculate. I enquired how long it would take to replace the missing bulb and alleviate the poor woman of her distress and everyone else's at having to listen to this tale of woe, repeatedly.

I was told that the staff were not allowed to change bulbs, they had to call in an outside contractor!

The world or ESCC has gone mad. The new Philips shaver didn't fit the socket!

2009-12-12T07:50:00.000-08:00

I went to see Dad today and was mortified by the state of him. He was sitting in the downstairs community room rather than in the cosier lounge used by only four people. He was fast asleep and looked absolutely beyond scruffy. He had glasses on that were bi-focals and definitely not his, a tatty old tracksuit top which looked ghastly, proper trousers with chocolate dripped down the front (I hope) and his brogue shoes. He clearly had not had a shave in days. I asked if he had lost his slippers. I asked about the glasses.

Apparently someone should have rung me to request a new shaver, preferably electric or at the very least some shaving sticks and some more clothes as he was 'extended'. I sat with him and nearly wept as Black Beauty was on the TV and I can't cope with sad things at the moment. My mind-set is fragile to the extent that I find stories on soaps worrying, anything to do with animals and children upsetting, pretty well anything sad has a terrible effect on me so I go round shutting my eyes to reality.

I asked dad if he knew the names (surnames) of the people who were sending him cards but all he could remember was which area of town they lived in so I should be able to identify who is who.

He was pleased to get some sweeties but within 5 minutes of me arriving he was fast asleep again.

I will go over on Monday with more clothes and a new electric razor. All the washing takes a heavy toll on clothes and they deteriorate very quickly. I now feel terribly guilty that I haven't taken proper care of him.

To Spend or not to Spend

2009-12-11T13:24:00.000-08:00

Thursday has come and gone and no news re funding. I find it very difficult to think of anything else and seem to be permanently waiting. Friday a.m. I ring our man in the mental health unit.

No funding again. We talk about options and I have to decide not to spend dad's money on paying to go into care. My problem is that if he is paying until his money runs out they might think we had deliberately run down his finances. If we pay then the powers that be might think he is less of a priority. I decide not to spend the excess cash. I know my sister will agree. We talk about the respite home where dad is now, our man says he will ring them and see if he can extend it again.

I have very little hope as he has already tried before. This morning I put all the bedding back together and lit a Christmas incense stick ready for dad to come home.

The phone rang. Respite is extended until 8th Jan.

Tomorrow I will go over and see dad and take some cards to him. He gets lots of Christmas cards from the neighbourhood which is really great. I go through the address book and write cards from him to people who I have no idea whether they are still alive or not, I've never heard of half of them (this is a job my sister has done in the past). I don't know whether it is appropriate to send cards from someone who has alzheimers and who undoubtedly doesn't remember these 'friends' anymore. I will ask him tomorrow if he recognises the names of the people who have sent him cards.

This morning I telephoned the Agency and re-instated all the carers. This afternoon I telephoned and cancelled them again. This must have caused them a lot of work.

It has been a strange day. I can't find the Christmas tree. I have been up in the loft and produced two boxes of baubles but no tree. I have masses of lovely decorations but they are all in storage and I can't get to them. I find this strangely upsetting.

2009-12-04T11:34:00.000-08:00

I have spoken to Matron and our man at Social Services. There is 'no running out of money' and we can use dad's savings to put him in as early as next week but that money is not refundable and it is, after all his money. Not a decision we will take lightly.

In the meantime, my frustration at this delay leaves me with nothing to do except dwell.....

Whilst dwelling, I remembered an episode that I have not already written down, well I don't think so.

It was about 5 o'clock, about the time that he wakes up and gets a bit restless; usually, that is taken care of by going along the shop to buy some sweets (Werthers Originals). Off he trotted and I sit reading the paper. The carer arrived, no dad. She left him a sandwich and I promise to do the meds. M starts cruising the estate and the cemetary (where mum is) still no dad. One of the neighbours makes a joke about M driving up and down and hastily backtracks when M explains that dad has gone awol.

At 7.00, it is dusk and I make a call to the police. A few words of explanation press the alarm buttons: elderly, vulnerable, alzheimers, lost......I visualise helicopters and search parties up on the downs.

At 8.00 ish we get a call from the Police, they had found him in Brighton General Hospital!

My sister collects him about 11.00 pm. He hadn't wanted to come home (all those young nurses)

and was a bit hyper. The hospital probably wanted him out asap as he has been somewhat difficult in the past. On one occasion he went walkabout in the hospital and was found several floors adrift having a pee in someone's sink. Another time, he caused a full scale security search when he again went missing. He was found sometime later tucked up in bed with another old man. Neither had any idea. I recall visiting him in hospital when he was very confused and he pointed to an old man in the bed opposite and said "Look, there's B..........(me) in that bed over there.

I think he likes going to other places, respite home, hospital, etc., because there is lots going on and his life at home is so boring and lonely. Every room is full of memories of happier times, mum, and a more dynamic life (though that is not a word I would normally equate to dad).

2009-12-03T09:11:00.000-08:00

So frustrated. The weekly meeting that decides who gets funding or not deemed not....

I have no idea how this system works but wonder if we are waiting for someone to die.

Tomorrow I will ring Matron at the chosen home and ask if she can wait any longer. Another option is for us to pay ourselves until they catch up with us but it is more than £500 per week.

I was in such a cheery mood this morning now I have sunk back down to the depths. We have one more week of respite.

2009-12-01T10:06:00.000-08:00

A bolt from the blue. We are able to fund dad in a care home with help from East Sussex C C.

I cannot tell you what a relief this is. Nice things do happen!! Social services often get a bad press but I have to say that the people we deal with have all done their job properly, have been kind, have been helpful and I have drawn support from them.

2009-11-27T12:08:00.000-08:00

I hate vinyl. At least it is clean. The top floor is nordic but plastic.

Respite has been extended. I have discovered a wonderful charity called relatives and residents association who actually help. Practical advice. Legalities explained, and, they reply to emails the same day. I actually feel quite optimistic, a glass of wine is in order.

2009-11-26T07:57:00.000-08:00

As I expected we have not had a result for funding help but the guy who looks after dad and us has been able to extend his respite. I will go over and see dad tomorrow, hopefully I will get a better reception. I must ask the consultant if we might cancel the Aricept. It might make a difference to his sleepiness and I don't suppose it is doing him much good now.

2009-11-26T04:53:00.000-08:00

New flooring is coming tomorrow. More vinyl!! It will prevent the constant carpet cleaning and make things easier for me and the carers. Had a better night last night due to sleeping tablets.

Today I will move all the furniture and stuff into dad's room while he is away. Still haven't got the plastic sheet to put under his bed to prevent the rising tide of piddle! The social services have not contact us yet so I anticipate we will be refused funding, again. M. says I am pessimistic but I can't help it. Weather still awful and there were no copies of the Telegraph left in the shop had to take the Mail.

Dad will come home on Monday and despite all I will be pleased to see him. It's not his fault he has this dreadful disease and he at least is quite happy.

2009-11-25T08:35:00.000-08:00

I seem to be getting more tired during this respite. We have had a request from the social services to see my mothers will. Weather is awful and I barely slept a wink last night. I sat downstairs reading at 2.00 am. I have been listening to CD tapes of C J Sansom's Dissolution, very calming but I wish I could go to sleep. I have so much to do and no capacity to do it.

2009-11-23T07:47:00.000-08:00

We went to see dad and woke him up. I don't think he knew who we were and then got grumpy!

Left his medication with the nurse. Tried to have a conversation but he wasn't having it. E asked him to show us his room. "Do I have to" He looked quite well.

Drove home.

2009-11-22T03:53:00.000-08:00

I do quite miss dad. The house is clean but it feels empty without him. I have his medication bubble pack for next week so I will take it over to the respite place and see how he is getting on.

Rainswept and Depressed

2009-11-20T02:22:00.000-08:00

I have stripped the house of everything to be cleaned whilst dad is away and come across little hidden items. Socks in the nick-nack draw, biscuits hidden in a cup, jumper under the pillow but still not teeth.

We have not received funding for the second week running, it is pouring with rain, my aches and pains have all come back and I wish I wasn't here, and to top it all the dog has been sick on the settee.

I am worried that the matron who has agreed to take dad on will not wait for us and the room will be lost. I am so tired.

2009-11-18T09:11:00.000-08:00

Despite my carefully laid plans for dad's care whilst M and I were away it all fell apart on the first morning. He refused to get up to go the the day centre. The carers can't force the issue and I use lots of strategies to persuade him when he is being mulish. My favourite is to get the hoover out!

We were away from Friday until Tuesday but dad was going into respite on Monday. Friday, at some point he got dressed and sat himself on the settee and stayed there until Monday morning. No bed, no showers and no clean clothes. Oh well.

We had a great time and it was a bit of a struggle to come home.

2009-11-12T05:43:00.000-08:00

Lastnight I came downstairs to remind dad to go to bed. He asked whether mum was coming up too then he turned to his left (odd) and started patting the arm rest, when it didn't respond he began to thump it, really hard. If she had been there she could have sued him for battery. I said to him that she was already upstairs. "No, she's not, she's here."

I left him to it. He came up later with some items that he didn't know what to do with. A used nappy pad (only piddle fortunately) and his electric shave with half the bits missing.

"where am I sleeping tonight?"

Most people run away from ghosts

2009-11-11T04:14:00.000-08:00

The transport forgot to pick dad up today so I took him down at 11.00 and joined in the two minutes silence.

Had a disturbed night with M having a dream......He found himself, me and children in a large american barn with hay on the floor and gaps between the wooden slats. There was a ghost in the barn too, it looked like an amorpheus (don't know how to spell that) blob with twinkling lights in the centre and it was keeping him awake. Here's the rub, he chased it into a corner and then tried to blow its lights out with lots of huffing and puffing - which is what woke me up! We have discussed this at length and he is the only person I know who runs towards ghosts rather than away.

I am gearing myself up for Friday, us leaving for a weekend away, dad on his own until Monday and me leaving him a packed case for the respite. It could all go terribly wrong......

2009-11-10T08:59:00.000-08:00

Grey Tuesday 10th November 2009

The guy from social services came and after lots of questions to dad, most of which received random and inaccurate replies, he agreed that he would go to a care home. This was a relief but I still spent the day feeling unsettled. Funding has to be applied for representing the difference between what dad has got and what is needed. We would be self funding for approx 60%. Our social services friend applies to a committee and if they have enough money that week then he can go immediately. If they haven't got enough funds then it is put off until next Thursday and so on...

I am away on Friday and V. will look after dad until Monday when he goes into respite for two weeks or goes to the home. I hope it all works out, it is very stressful.

I am in a lot of pain at the moment and I need some sun and luxury. Cyprus will have the sun, I hope, and my friend's home will seem like luxury compared to how we are living now.

We will return on Tuesday.

Sunday, again wet and windy

2009-11-08T04:29:00.000-08:00

Had a great day out with a friend, I left home at 10.30 with a note for the carer to get dad up.

When I finally arrived back at 4.00 he was still in bed! I went out again and left note for the evening carer to try and get him up. She achieved and he was up when we returned from our evening out at 11.00.

Dad is looking for mum again and he asked me where she was. Once again I explained she died 4 years ago. "But where is she?"

"In the cemetary" I reply

"Oh, is she with her husband?"

"You're her husband"

"I know that" he says.

The frozen ready meal for today's lunch was Shepherds Pie with vegetables, it smelled nice but dad took one look at it and said "What sort of lunch is this then?"

He described it as Shepherds muck pie......

Tomorrow we are expecting a visit from the Social Services guy who will try and obtain dad's consent to go into a care home. If he can't take this on board we can make the decision for him.

I hope we don't have to do that.

Friday

2009-11-06T09:42:00.000-08:00

I can't remember what happened yesterday other than it was Bonfire Night and M went out to watch the celebrations. I was too tired and didn't feel well.

Friday we got dad up early ready for the Phoenix. We had a visit from the Financial Assessment representative. Daunting......

Tomorrow a friend is coming to stay in the town, hopefully M will look after dad while I go out.

Tuesday/Wednesday

2009-11-04T03:47:00.002-08:00

Yesterday, Tuesday, dad wouldn't get up even though the carer didn't come until 11.00. Nothing we could say would make him. He clutches his duvet up under his chin and grins at us.

Finally, the carer gave up and left - he gets up, immediately. I was so cross he didn't dare refuse a shower. I had to go out and left him to get dressed himself. When I got back from my errand several hours later he was sitting on the sofa with his vest, shirt and jumper on, no bottom bits but with his dressing gown over the top. He slept all day and gradually the piddle smell permeated the room. I sat upstairs. By the time we were ready for bed I was very irritable. As his smell increases, and you get wafts of it as he walks by, it is as if something rises up in me - for want of a better word - blood pressure. I told him we were going to bed and reminded him it was the Phoenix tomorrow and he had to get up on time. Bugger the Phoenix he swore......

I yelled at him..........no effect whatsoever but it made me feel better.

The following morning, Wednesday, he did get up reasonably promptly and was all dressed and ready by 09.30. Then, he came into the kitchen with wet trousers on, he insisted he had spilt tea.

Complete change of clothes. It takes forever and the Phoenix ringing to say they were coming.

I am shoving his pad into his pants, all dignity out of the window and trying to do up his buttons.

We were down to our last pair of trousers and they are a little long. I can't find the right belt and the one I put on is too big. Tough. I run down to open the door and he wanders down about 2 minutes later. The traffic is held up by the big coach waiting. The transport lady trys to get him into his coat as it is cold outside and I stand behind the glass door so he can't get back into the sitting room to look in the mirror. He pushes the door and I push it back so he can't get in. We tussle over the door and finally he gives up and heads out. I apologise to the transport and shut the front door on him. It is all over for another day. I am exhausted.

Tuesday/Wednesday

2009-11-04T03:47:00.001-08:00

Sunday Wet and Windy 1st November

2009-11-01T10:12:00.000-08:00

We forced dad out of bed at 12.00 in time for lunch. He has a cut on his forehead, no idea how he got it. At dinner time I noticed that he was not using his knife and his fork was in his right hand, the opposite to normal. Another TIA? He had a conversation with my coat and when it didn't answer he patted it. Otherwise quite happy.

Saturday lunchtime

2009-10-31T05:56:00.000-07:00

After the success of the Matron's visit M. and I did a runner. I rang the agency and insisted that they send two specific carers for Friday night and Saturday morning as I was leaving dad on his own overnight. We went to my sister's house in Brighton (she is in Istanbul) and after a few hours relaxing with a nice ready made dinner, a bottle of wine we three, my daughter included, got changed into some loud clothing and caught a bus (they pick up other people which wasn't quite to our taste) and headed into town for a night out with friends. We had tickets for the back row of the royal circle at the Theatre Royal to see The Rocky Horror Show. Brilliant seats, fantastic atmosphere and riotous show. We had a ball. We had cocktails in a nearby bar before the show and watched the entertainment of Brighton dressed to kill in corsets and suspenders with feather boas everywhere. It was such fun and the second time I had seen it but each reincarnation brings different sets, different, actors and a whole new experience. Afterwards we headed to Brown's Bar to finish off another bottle of wine before heading home in a brand new black BMW convertible with red leather seats. We put the hood down and waved our way through the streets with everyone waving back. Great night.

We returned home Saturday morning to find dad still sitting on the settee where we had left him and he had been there all night. The carer changed his pad but he refused a shower. They can't force him. Otherwise all well.

Friday 30th October 2009

2009-10-30T05:43:00.000-07:00

Dad was behaving oddly last night. Normally, he talks to his imaginary friend who sits on his right hand side. Last night he was having a conversation with the stereo speaker on his left side. He was going to bed he said but what about all the others. How many others are there dad I asked. "Oh, five or six" he waves vaguely round the room. "Well they are going to bed too" says M.
Half an hour later dad comes into our room to say goodnight fully dressed in his outdoor clothes.
I ask him why he has got his coat on and he said. "Well, I might need it". He wanted to know which room he was sleeping in. I replied, "the usual one. You have been using it for 50 years."
OK.
The Matron came this morning and we were all ready, an achievement. She talked to dad and asked quite a lot of questions which we answered for him while he slept. She has agreed to take dad and we said we would take him over for a visit, next week.

2009-10-29T13:33:00.000-07:00

The Matron from the chosen home rang today and suggested that she visit dad tomorrow morning at 9.30!! I said yes, and will ring Phoenix telling them I will deliver him later.
I feel absurdly nervous. Next week the nurse who keeps an eye on dad is visiting him to ask if he agrees to going into a home. The day after that we have an interview with the financial assessment people which is terrifying. We have to show bank statements, all income, all assests etc. It is alarming for people who have never made use of the benefits society. I will feel violated by offering up all this information especially as we are only requesting a top up of the fees. Dad's income will make up the bulk. It makes me feel sick. If he had been a lazy sod and spent all his money instead of buying his own home and paying into a pension, going without holidays, they would pay everything!

Wednesday

2009-10-28T10:48:00.000-07:00

I knew yesterday was too good to be true. Last night I was punished for being cheerful. I won't describe the trauma of dia....... you can imagine it and it wouldn't be enough. Today, Wednesday I am staying in bed to watch waterbabies and recover, slowly. I know when things are bad because M. starts being very nice to me...

Tuesday 27th November 2009

2009-10-27T04:05:00.001-07:00

I am in better spirits this morning - the sun is shining and it is warm. I have sprayed all the settees with fabric freshener which seems to work. Dad is still in bed at 11.00 am and I have a busy day planned.

Monday I don't know what day it is.

2009-10-26T14:13:00.000-07:00

Once again the carer didn't turn up. I am going out today at 10.30 and I feel a bit pissed off, again. I rang the agency. They said sorry but what good is that. Anyway, he got up and I told him not to lock the bathroom door and use the soap. He was quite happy. I couldn't put a pad on him but we managed to get dressed. It is amazingly difficult to put socks on swollen elderly feet. The teeth are still missing. I have bought a plug in smelly which I hope will improve the atmosphere. I also bought a scented candle but have no matches! I feel like going out in the street and asking a stranger for matches. I still haven't bought the plastic sheet but I don't seem to get round to these things. I met a friend and hoped to go to Wakefield Place to see the autumn colours, they wouldn't let us in because I had the dog with me. The same happened at Sheffield Park but they at least let me walk round the farmland where I fell over, flat on my face. We gave up after that and headed for a pub lunch where they let the dog into the bar.
The weather was nice tho.

Sunday 25th October 2009

2009-10-25T05:18:00.001-07:00

We will have to take the lock off the door to the bathroom because dad is not using soap or gel to wash himself. He locks everyone out and then just stands there, if he does get in the water he doesn't clean himself other that standing under it This is not enought to get rid of the soiling or urine. I went into the bathroom this morning and the soap was dry as was the flannel and the shower get had not been opened. I told the carer to make sure he washed but she said he wouldn't let her in. She helped him get dressed knowing that he was still dirty. Her suggestion was to send him down to the Phoenix to have a proper bath with their assistance. I will do this but it would save a lot of time if we enforced a shower at home. I also pulled back the bedding after she had gone and the sheets were soiled. She is a friendly girl and dad likes her cheekiness but how could she have missed that. He sits in the living room and all I can smell is pee.
I am going out this afternoon just to escape the smell.

Saturday 24th October 2009

2009-10-24T02:43:00.000-07:00

I arrived home yesterday evening to be greeted by the terrible smell of 'accident'.
I asked dad to go and change his pad. He refuses, there's no problem, he insists.
It is nearly time for the carer to arrive so I disappear upstairs and leave him sitting on the settee in blissful ignorance. He really doesn't know what has happened and won't believe you if you try to tell him in words of blunt description.
Fortunately, the carers have an authority that he obeys, most of the time.
The poor woman, she has never been to us before. She has half an hour to deal with any problems and make a sandwich or something on toast and give him his tablets. This is all dictated by 'The Care Plan'. She encourages dad to go upstairs, still reluctant but he does go.
It takes a good half hour for her to clean him up properly and into fresh clothing. Most of the carers are very diligent in helping people keep their dignity but basically treat them as if they have the skills of two year olds which is all dad has in respect of keeping himself clean.
By the time she comes down with a freshened dad she has run out of time, if I wasn't here she would have carried on no matter how late she was. I offered to make dad's tea and supervise the drugs. It's the least I can do.

Friday 23rd October 2009

2009-10-23T01:54:00.000-07:00

Missing teeth still missing and now, glasses too. Dad wandered round yesterday with an old pair on unfortunately only one of the lenses was there. They weren't even his!
Carer not turned up this morning and it is a Phoenix day so I got him up and in the shower, eventually. Usually he is very concerned to keep a towel wrapped round him but today he didn't bother, ugh. I went to bed early last night and came back down at 10.00 pm to try and get him to go up. What about all the others he says, they're already up there I lie. What about this fella here - he taps the seat next to him. He'll go up when you do.......
Phoenix transport rang to say they were on their way. He's not ready. I throw his toast away and cup of tea otherwise he would refuse to go and expect them to wait while he finishes his breakfast! He said, I haven't finished my breakfast. Yes, you have dad, you finished it about five minutes ago. Oh, did I. I found the glasses.

2009-10-20T10:23:00.000-07:00

Dad refused to get up, we left him to it and he finally came downstairs, dressed, but not washed at 1.30 and promptly fell fast asleep. He stayed comatose until 5.00 with short intervals for a cup of tea and cake.
We still can't locate the original teeth but the other set are chewing well except the microwave blew up and he hasn't had anything substantial to eat all day. The microwave ready meals that are delivered weekly are quite nice and fortunately you can cook them in the oven so that is the plan for tonight.

Monday PM 19th October 2009

2009-10-19T08:19:00.003-07:00

Dad arrives home and askes if I have found his glasses yet. I tell him he is wearing them. No, he says, I am only renting these. I remind him that it is the teeth missing, not his glasses. He tries the replacement pair and they sort of fit but he doesn't speak so well. My sister has asked if we would like to go and stay at her house and look after the cats while she is away. I don't know if I should risk leaving him.

Monday PM 19th October 2009

2009-10-19T08:19:00.001-07:00

2009-10-19T08:11:00.000-07:00

We found a spare set of teeth and dad promised to try them. M and I went out for the afternoon and when we came home they had gone missing as well! We think he has decided he is still 18 and doesn't need false teeth and has deliberately hidden them. When we got home (Sunday) he asked if I knew where mum was, he had been upstairs to see if she was there.
Monday we are woken abruptly at 7.30 by a new carer. I rush downstairs to iron the tousers that I had washed yesterday. Still no teeth.
It is a Phoenix day today and all goes well except he won't have a shave. He looks very untidy and we have to change into another shirt as jam goes all over the place. However, he is quite chirpy.
I find the spare teeth on top of the wardrobe, wrapped up in a little tissue parcel. No luck with the originals despite dismantling the beds, stripping the sofas of cushions and sifting the rubbish.
Such fun.

Sunday, 18th October 2009

2009-10-18T04:57:00.000-07:00

Still no teeth. A soiled nappy has gone missing and the wash loads are up in the 4’s again as well as a trip to the cleaners.
The carer arrives and we do the linen and floors together before she gets dad in the shower; he doesn’t argue this morning because he knows he needs a good wash. It is almost lunchtime so he can have his lunch rather than breakfast.
I have been looking at some paperwork and found several interesting items.
The first, a certificate of purchase of a burial plot. This is made out to dad’s mum and cost her £1. It is quite ornate and signed by the town’s mayor and chief clerk. I wonder how many people a plot can hold? My mum’s ashes are in the Garden of Remembrance next to people she worked with when she was young. My younger sister, who died of pneumonia when she was about four, is also in the same cemetery but in an unmarked grave. Mum and dad couldn’t afford a stone. We did mull over the ideal of putting mum and Veronica together but it all got too complicated. I wonder if we can put dad in with his mum and dad when he goes. I will have to investigate this now at the Town Hall as it all gets too fraught when you are trying to manage a death.
I am not being morbid just practical. The Victorians had a pragmatic approach to death and I don’t see anything wrong with that.
In France, where I have spent some time, the cemeteries are very ornate with little houses and lots of stone and marble. Unfortunately, the French have a love affair with plastic flowers, so there are a lot of them too. The last day of October is the day of the dead and huge pots of chrysanthemums are placed on the graves, with lots of families taking the opportunity to visit and tidy their plot. I think it is a national holiday too (they have so many it is difficult to keep track).
The displays of chrysanthemums can be seen on roundabouts and in the towns; consequently their association with death means they are not used as indoor plants, which is a shame as they are so pretty.
The other documents I have found relate to a book dad bound for the Queen.
More on that later.

Saturday 16th October 2009

2009-10-17T12:25:00.000-07:00

Dad has lost his teeth.
I've looked everywhere you'd expect and loads of places you wouldn't.
He has no idea what he does with some things and we find things in the freezer, the bread in the microwave and nappies (dirty) hidden in drawers (on one occasion we found one up the garden, hidden)! God knows what we will do if they don't turn up, he can't eat properly without them and I don't know if a dentist would still have his records as he had all his teeth out over 40 years ago. The only thing he doesn't lose are his sweets! He'll have to suck them. I think we should buy shares in Werthers Originals he eats so many.
We have had only two washloads today and the carers have turned up which is a result for the weekend. One of the carers was new but she managed to get him in the shower which was brilliant because he knows when he can get away with playing up.
I took the dog up on the downs for a while. There is an ancient barrow (bronze age) near the bonfire site and I stood up on the top of it and tried to feel the vibrations of history. No such luck but I made a few wishes anyway.

2009-10-16T12:08:00.000-07:00

It is 7.o’clock and dad insists on one of us eating his leftover bit of cornbeef sandwich. He always wants to share his scraps. I could just say Ok and then throw it away but the perverse side of me has to tell him that we don’t want it. I suppose it is the thrift from the war years coming out but he never offered us food over and above what was on our plates when we were young.
I refuse the leftovers and watch as he adjusts the chairs, picks up the sauces and wanders aimlessy around with them until I direct him to a cupboard. Then he goes round locking and testing the doors before standing behind me waiting for me to go into the sitting room to sit down, when I do that he follows. M. disappears upstairs, he can’t bear the group TV watching session. I stay with dad as long as I can bear it.
He sniffs, farts, wipes his nose and is perfectly content. I unlock all the doors so the dog can go out.

Friday 16th October 2009

2009-10-16T03:56:00.000-07:00

Back to normal, Dad wouldn’t get up. It’s a Phoenix day so we have to pull out all the tricks. I get the hoover. He hates hovering. He always did a runner when my mum got savage with her brush strokes. I even threatened him with a cold flannel which is what he did to get me or my sister up on occasions. He giggles, he waves at us, he pretends to be asleep but we get there in the end after half an hours concerted effort. He refused to shave so I let him get away with that. A little bit of face-save for him!
The transport pitched up early so he didn’t have a chance to fall asleep. The Dentist called and offered a replacement temporary but not until Monday. My jaw still hurts but fortunately not the tooth. I have no soft cushion between the ball and socket joint, I keep visualising it scraping.
St. Remy de Provence is sunny but cold, E had to buy a jumper! The forecast is a return to warmer temperatures. Lewes is grey.

2009-10-15T11:55:00.000-07:00

Dad has been as good as gold today but still I have had a shit day. The sun is shining. M is away for the day. I have a list to tick off. Start with the Dentist. I can only open my mouth for a little while following surgery so visiting the dentist is a worry. When did the cost of fillings go up so much. £300 for one, albeit a large one, seems excessive. He offered a cheaper version but it was gold coloured! The NHS version, much cheaper, but apparently not worth it. I had been home a couple of hours with my jaw throbbing away when the bloody thing fell out. It was only a temporary filling but I will have to go back tomorrow and endure more.

Today I asked dad if he joined in the Lewes bonfire celebrations when he were a lad. I didn't get much of an answer but I will persue this when he feels like talking. Lewes bonfire is a fantastic, celebration of the past, Guy Fawkes, the Martyrs of Lewes, and the ceremonial burning of effigies, including a pope. More on this later
Weather in St. Remy de Provence, lovely but windy.

Wednesday 14th October 2009

2009-10-14T13:26:00.000-07:00

The osmosis plan is not working. Dad keeps picking the towels up and hangs them on the radiators. New Plan: Buy a sheet of heavy grade plastic and put under the beds and then staple it up the sides. It will save on the washing (four loads again yesterday) and all the ironing.

Today we are taking sugar in tea. 40 years of no sugar has gone by the board. He insists he has always taken sugar. Last week when one of the carers offered him a cup of tea he said in his quaintly polite voice “Is that with lemon?”. I nearly fell about. My dad grew up a in rough and ready household, he would climb over the walls of the naval prison to run errands for the inmates: post letters, place bets that sort of thing. He even took out washing for his mum to do. Lemon in his tea was never an option. Where did that come from?

Tuesday 13th October

2009-10-13T02:24:00.000-07:00

Dad wanted to go to the shop yesterday to buy his birthday present! The shop is about 5 minutes walk and it is the only place he walks to safely. We have an account so he never has to pay and they send him home if he has already been for the bread and milk. They are very kind to him as are most of the neighbours. We have lived at xxxxxx for 50 years and dad is very well known.

This is a godsend when he wanders because people bring him home. On occasions he has gone into one of the nearby houses and sat in their living room thinking it is his own. It must be a shock to find an old man sitting in your house, more often than not fast asleep. Even though he is little unsteady on his feet at times we don't discourage him from going out. However, there have been times when he has fallen over, it is a risk we take.

Last night I went out to a History lecture and when I returned Dad insisted that he had been out too, he hadn't. I suggested he go to bed so he patted one of the cushions and said "well, what about this fella here then." Whoever 'this fella' is he occupies a big part on dad's settee. We will have to give him a name.

We have recently found out that dad's father was probably Canadian, coming over to the UK in the 2nd WW. His grandparents were married in HH and then emigrated to Canada. Their son came back and married dad's mother. He was a hairdresser and had a shop on the high street,

Unfortunately grandfather and father had the same names which makes it a little difficult to identify documents. I have found his parents' grave they died 9 years apart but on the same day.

Monday 12th October 2009

2009-10-12T06:04:00.000-07:00

Funny moments

Dad thought my hat, which was on the top of the settee, was a hedgehog.

We have to ask who is the daft one in this house when M makes a cup of tea, at dad's insistance, for the mystery man sitting next to him on the settee.

When trying to get dad to go to bed he says " I'll wait for mummy" I remind him that she's dead,

"Well, I'll wait for all the others then." I tell him there is only me.

"Well, who are all the others sitting here then." I give up.

M is going to ask Dad what this mystery man looks like next time he pops up in conversation.

The sky is always blue in his world.....

Sunday 11th October 2009

2009-10-11T12:54:00.000-07:00

Peaceful day as dad didn't get up until mid afternoon by which time I had gone out! The morning carer turned up at about 10.00 stayed for no more than 15 mins (because he wouldn't move) and recorded in her log that she stayed for 1 hour.....
Lunch carer didn't show, again. I shall report them to social services. That is three times this week. The evening carer was great
When I got home Dad was in the kitchen trying to make a sandwich. He had a piece of bread, no butter but a blanket of jam on top. The bread was invisible and the jam was all over the surface. Bless!
I can't understand how someone can sleep so much. He was in bed last night by nine. He got up about 4.30 and went to bed again at 9.00
Dad has decided not to go to bed because I am staying down to watch Emma. He wants to stay with me. He thinks I am mum.

Saturday Continuing.

2009-10-10T13:21:00.000-07:00

M went down the town to buy some comfort food. He had an Indian but I wanted a fry-up so I asked him to get me some mushrooms, a very rare occurence. He rang from Waitrose asking if I want button or shit-acre. I, of course, had the shit-acre. Unfortunately I forgot how to cook mushrooms and they ended up a bit soggy and tasteless but the egg and bacon hit the spot.
Dad has slept the day away and I am really certain that we are doing him no favours in keeping him at home. If he were with lots of people he would have to engage more.

Saturday 10th October 2009

2009-10-10T09:02:00.000-07:00

The term 'grumpy old man' fits the bill today. Dad finally got up at 11.00 after much cohersion, a battered and messy bed and piddle all over the floor. But, the osmosis protection plan worked!
Result. I have to separate the washing - I can't bring myself to put tea-towels on with wet sheets or our clothes. Four washes later (and drying) we are all done. Last night dad wanted the imaginary man who was sitting next to him on the settee, go up to bed at the same time. I am too tired to think of any more today.

2009-10-09T09:24:00.000-07:00

Today began well, dad got up, showered and dressed all by 9.00 am - Bliss.

When he returned at 4.00 he seemed quite bright but there was bit of a pong. I ignored it and hoped the carer would arrive to change his pad, soon...

"When are we going to the cinema" he said.

"I didn't know we were" I replied.

"Well I don't mind if we do or don't"

"OK"

The care office rang, not coming!

I could have said "shit" but it didn't seem appropriate.

Dad got up and wandered towards the downstairs loo. I asked him to take off his pad if it was dirty and leave it in the loo for me to clear away.

OK he said. I was encouraged, we were having a sensible conversation and he was understanding the situation.

OK, I asked when he came out. No, not really he replied.

"Where is your pad?" I asked,

"In there" he waved vaguely towards the loo.

"You haven't put it down the loo, have you?"

He was indignant at this slur on his capabilities

"Are you clean?" I asked innocently.

"Not really".

I asked him to go upstairs and use the moist wipes specifically for this purpose. He came downstairs with a towel round his middle, unclean I sensed.

Half an hour later he is still there and refusing to move. There is an old poem about Sussex people who won't be druv and my dad is a perfect example of that mentality.

The nappy is missing, it could be anywhere. I retired to my bedroom defeated. I'll wait for M to come home and deal with it.

Friday, 9th October 2009

2009-10-09T09:23:00.001-07:00

Thursday 8th October 2009

2009-10-08T02:48:00.001-07:00

The sun is shining and we are having a good morning. Dad got up on his own without any fuss and had a shower before the toenail lady came at 10.30. There was no pee on the floor or in the bed but he had peed in the clothes basket instead! The carer arrived just in time to put his pad on and she is doing the domestic cleaning today as well.

Still Wednesday.

2009-10-07T10:16:00.000-07:00

I spent the day scrubbing carpet, osmosis damaged beds, washing (4 loads) ironing and now feel quite smug and far less anxious. Dad had a good day at the Phoenix and seemed quite happy.

I arranged with the carer that he would wear a full sized pad rather than piddling all over the place.

The carer told me that he had got into the shower with his slippers on. I have solved the problem of osmosis by rolling up towels and placing them along the edges of the beds. It is easy to wash towels every day not quite as easy to clean divan bases. Tomorrow we have nothing planned except the Age Concern lady coming to cut his toe nails. He has his own kit including some very sharp cutters and she is a volunteer recruited by the noble charity. I wouldn't want to do such a job. In actual fact dad's feet are in very good condition compared to some I have seen on much younger people. The cost of this wonderful service is £4.50

I went down the town and cheered myself up by buying the Booker prize book on Cromwell and the Norweigan thriller by Stieg Larsson and some plums.

It is raining in Lewes and I am quite sure it is beautiful in St. Remy de Provence.

Wednesday 7th October 2009

2009-10-07T08:23:00.000-07:00

I will cope with this

Tuesday, 6th October 2009

2009-10-07T07:43:00.001-07:00

Weather in Lewes: Lousy, raining

Weather in Remy:

Today I am escaping. The carer will get him up and do all the rest, I hope.

Returned at 5.30, still raining but had a good day. The smell of pee hits me as I walk in. Dad not dressed. Wearing a dressing gown and socks. He smells.

The log says he refused to get up until lunchtime.

The carer arrived and made him tea. She changed the rubbish bin and put a new bag in. Dad took his plate and cup into the kitchen and washed up, I will have to re-do it. He keeps wiping his nose on the tea-cloth. I went into the kitchen to make myself a boiled egg and soldiers. Floor awash, its pee. Mopped up and then put some rubbish in the bin, or started to. He’s tried to pee into the rubbish bin. I can’t bear it.

I abandon the boiled egg. I can’t eat.

He sits munching his sweets.

Last night he asked if the man sitting next to him was going to bed too, there was no-one there.

Sunday 4th October

2009-10-07T07:41:00.001-07:00

Weather dull
No carers turned up until 5.00!
He slept on the settee all night, fully dressed with his dressing gown on top.
I gave him his lunch before I went out to an Art Exhibition. Left a note for the missing carers.
Evening carer reported to the office.
Bedtime: Dad wanted to know if the bloke who was sitting next to him on the two seater settee was going to bed as well! There was no-one there.