Silly Not To...

I saw a compilation CD in a local supermarket which had enough "new" tracks that I do not have in my collection already and it was going to cost £4.97. There was an offer though that if you purchased another CD that is the store's own CD chart, you could buy this CD for £2.

I found another CD that cost £3(and again had enough "new" tracks to make it worth purchasing so I managed to buy the two for £5. So that made both only £2.50 each(or it was like getting the £3 CD for nothing)That's 120 tracks in total(and even if I lose 20 tracks on each album because I already have them)it is still quite a bargain.

I haven't quite worked out how many tunes are duplicates.

Update:It turns out I have 35 new tracks so its still not bad...

Maybe We Can Draw A Line...

Over recent events.

The Social Worker admitted to meeting our carer and says that it is written in her files that Mum wants to stay in the care of myself and remain in her own surroundings. And as far as we can in our situation, things are reasonably positive. And the last Dr who called has not raised the option as the previous Dr that Mum needs to go into hospital.

So all in all, better than I expected.

Confirmation...

"That" meeting takes place at 2pm this afternoon...as far as we know the Social Worker, the carer and her boss are attending. We were never supposed to know but we can claim that we do because the carer mentioned it was going to happen in front of the Dr and District Nurse last week.

I liked having the carer around when the Dr and Nurse were here last week as it was like having an independent witness present and she was able to hear what I did and we can support each other but also when I stepped out of the room for other reasons she heard what I did not.

Naturally, I do wonder why it is happening and what is to be discussed as the care Mum gets could not be any better. Of course I am biased but I know I am giving her the best food and drinks, keeping her warm and clean and she is relaxed. And the same is true of the carer Mum has...

Well, we'll just have to see what happens next...

Update:Two and a half hours after the time of the meeting starting and I have heard nothing(Is that a good sign?)

What's that saying about a watched kettle never boils...

Update Two:Well, it just adds to the intrigue. I have had a text that leaves more questions by what it doesn't say. "Nothing much to tell really. Just the usual. My supervisor was there so I didn't get to say much."

She was ready to say so much...

So what was the point of having the meeting? Have we anything to fear? It's weird.

Nice Food, Small Portions...

The other night it was a bit difficult to get some fish into Mum for a meal but I discovered if mixed with mash potato, it went down easily and once inside it will do her as good nutritional wise.

In general Mum is not eating as much as she was but I try to see what she does eat is good for her.

I was going to do one of my shepherd's pies today but forgot that mince(if frozen)has to be defrosted for at least 12 hours in the fridge so a change of plans...will now have that tomorrow but what to have tonight?

At least in a variety of ways she has reached approx 1,500 calories and there is still eight hours remaining of today.

Update:It can be done...we have reached approx 2,500 calories and the day comes to an end in approx 5 minutes.

As for Mum its been a good day. She is relaxed and unphased. And has appreciated a day that she has been left alone except for my care and I have found it no problem and I am not stressed out. At present I can do most of what I have to do within 2-3 minutes maximum. Even a carer takes(because they have a designated amount of time to do their tasks and we pay for the time)I think the minimum time is around 20 minutes and the maximum is 45 minutes. But it doesn't need to take up 45 minutes...We could do it quicker.

Some Songs Are So Miserable...

If true in their lyric content...

"My Way"* probably the best known version is by Frank Sinatra. Another is "It Was A Very Good Year" By Frank Sinatra. "Seasons In The Sun" by Terry Jacks. "September Song" by Walter Houston, the actor(I think)Other versions of all these songs are available as no doubt are other songs too.

But Bless the Bride the Musical has so many well known songs more than I realised.
See the link below...

Bless The Bride Background

But "This Is My Lovely Day" from this musical just annoys me. Sometimes you don't know why one does so more than another. The opening line is something like...

"This is my lovely day...it is the day I shall remember on the day I am dying!"

Good grief!

*So many of the songs we know have often been adapted or were originally from other countries where English is not the main language. In the 50's and 60's so many of the songs that entered the UK charts were often from Italy, Spain and France.

My Way is one such song which was known as Comme d'habitude and the English lyrics written by Paul Anka I understand bare no resemblance to the original. The original song was written and sung by the French singer Claude François. Claude had an unfortunate death, it is said that he was standing in a bath and with wet hands he tried to change or alter a light bulb and was accidentally electrocuted.

I don't think that I have heard it myself(If I have I am still here )but there is one song with the reputation of being really depressing and said to have caused some people to take there own lives...that could be an urban myth. It was banned by the BBC for quite some time.

Its called "Gloomy Sunday"

(Links added after the blog entry was written)

Smoothie Two...

Thought I'd make a smoothie for Mum last evening and no matter how I reassembled the Smoothie Machine I was using and made certain all parts were tightly in place...the liquid(in this case milk)kept leaking out around where the tap attaches to the machine and I ended up losing probably a pint of milk.

It is probably something I have not done correctly but in the end I thought..."I'll move onto my new food processor" but if you only want to use the smoothie facility that's a bit of a pain.

Today, I found one that does all I want...it had £2 knocked off the price too.

It is in the range of the Argos store's own brand and I have not been disappointed with previous items that I have purchased(a microwave and juice extractor)so I suspect this will be ok too.

It's nice to be back in business.

Calories...

I'm not obsessed with how many calories we eat...If hungry...we eat, if not, we don't bother.

But with Mum's condition and the booklet sent by the dietitian, I am trying and hoping I can keep Mum's weight constant for as long as possible so she has something to fight with and keep her strength up. And it appears to maintain her weight they say 2,000 calories should be taken in daily and any extra will hopefully add extra weight.

Its been ages since I looked at the back of the carton containing Complan to read the information and for ages I have been saying to Mum..."Every time you have a Complan that's 250 calories!" Yes, if made with water but Mum's having whole milk and its actually nearer 385 calories per drink so if she has four in a day she's almost reached 2,000 target. Then if you work on the approx calorific value of coffee made with whole milk, sugar and brandy each of those is approx 200 calories.

And we haven't even got around to what a meal is worth or food stuffs like porridge, rice, yogurts, soups etc...Remarkably two crackers and a piece of cheese can come in at around 250 calories and once you get around to a meal that contains perhaps vegetables and meat(and that will fill you up)it can soon all add up.

I don't think there are so many publications on sale but years ago I remember in the newsagents there was quite a selection of books which had the calorific values of every day foods to help people work out their calorie intake(usually to try and reduce it)and lose weight whereas we are trying to maintain/increase Mum's weight.

So Ignorant...

I can half understand why a Social Worker may wish to avoid talking to clients out of hours and not in their official capacity(perhaps its written in their conditions of contract)but you cannot really avoid saying at least "Hello" if your paths cross. You can acknowledge each other. Its doubtful anyone else would guess you are a Social Worker or a client unless you've had to use the service and to anyone else who she talks to it could be a friend for all they know.

Not long before Christmas I was sat in the town centre resting my tired legs and she walked past me, head down and avoided eye contact, ignoring me.

Today walking around the local supermarket she had to pass me and we were so close its a wonder our shoulders did not brush against each other and she still tried all she could not to speak but I made her say at least "Hello!"

And then for the rest of the time she was in the store if she saw I was in a particular aisle she did all she could to switch directions so she would not have to speak or have any contact.

Believe me I have no desire to talk to her but it is a worry and annoying that she has, in theory, so much power that she can make decisions that could affect us both so much.

She has such an opinion of herself which can be seen by the way she carries herself.

And to think she is visiting us again on Tuesday...the same day of the week that the District Nurse seems to favour. Supposedly a day no one does and therefore is restful. I can think of better things to do.

Update:Mum had a great day in every way and I can report as I write this added paragraph in the early hours of the next day, she has been having a lovely restful, peaceful sleep through the night.

Good News All Round?

At last I can report that my blood tests are fine! And the consultant has arranged an appointement for April but he is happy to have me send my results in and him let me know how things are.

He's been very kind about that.

"That" meeting that I am not supposed to know about had been pencilled in for 2pm tomorrow afternoon but just as quick as it was arranged...it was cancelled...something had come up and the Social Worker was not available.

It appears that just possibly the District Nurse/Social Worker have hinted that things "Got out of hand" and things were said that should not have been... that's an understatement. And who's fault was that? Lets hope that's the line that they continue to take.

Its not very often these kind of people back down and admit that they were wrong.

The big problem is that they have been less than honest and they did not talk direct to those concerned. They were playing one off against the other. And everything was being found out almost by accident.

What A Faff On!

Today I suddenly thought I have not heard anything regarding my blood tests and wondered if I should assume because the hospital where my Consultant is based has not got back to me all is well.

From an earlier post you'll know my Dr's surgery had raised concerns about something not being right and told me to contact them after sending a letter out.

The Consultant's secretary asked me to ask our surgery to fax them or talk direct to her/the consultant, she gave me her direct line and the fax number.

I phoned the surgery at 9.30am and was promised that they would send the information to the consultant.

I contacted the hospital today and was told they'd never been sent/arrived...no wonder I was still waiting.

So I rang the surgery again today(a few minutes ago)to be told "We don't send faxes out!" So I'd still be waiting. I asked for the number the Consultant should phone(Fax or direct line)They won't divulge them. So the Consultant's Secretary has had to contact them using the same number I use and sit and listen to the music and messages to eventually reach a person to get the results.

Why is one place in the NHS so helpful and the other so awkward?

If they are worried about the general public having numbers(its interesting to see that the hospital isn't)but wouldn't it be so much simple if they had faxed the information over to the hospital, especially as someone said that they would. And if they don't do that, how about coming back to me and telling me that they don't so I am not waiting and waiting.

Well, Here We Go Again...

Had a long chat with MacMillan Nurses charity about our ongoing situation...Was advised things looked strange and what is going on looks questionable so was advised to consider asking what they are unhappy about and why we are getting so many visits. Was told that I could possibly consider getting in touch with the local council and to consider going down the Advocacy Route and/or put in for an Freedom Of Information Request.

I am awaiting a phone call from the Carer's Association for advice too.

Now, everything happened at once.

Someone arrived to discuss/arrange me becoming appointee for Mum's financial affairs regarding anything to do with the Government.

The carer arrived to give Mum a bath.

And then the District Nurse and a Dr.

It got so busy the carer couldn't give Mum her bath(We'll still have to pay for the time she was here)Then again she stayed and listened to what was said to Mum and heard the discussion between the Nurse and Doctor so she was another witness.

Because the carer, Dr and nurse were here it messed up the visit for me to become appointee which was not completed.

I wanted to be present and hear what the Dr said to Mum and vice versa.

Mum was not as good as she has been put with 5-6 people all wanting different things from her, it was a bit confusing. As soon as they all went she was more "With it!" and even answering or remembering things she got a little wrong earlier and she got them right. Asking what day it is isn't a good question if you don't read a newspaper or listen to the news and are indoors a lot. Many of us forget what day it is.

The Dr asked what street Mum lives in and she couldn't remember but when I asked a few minutes ago...she did. In many ways I can see an improvement in Mum, she does not repeat or ask the same questions as much as she did some months ago and I can often second guess when Mum will be a little more confused "She calls it being in a muddle!" And today she had not been awake long.

She would've been better on a one to one chat and how and what was asked.

The Dr said it was good as it could be in the circumstances and it is an ongoing thing, the carer thought he was reasonably positive and we should be happier by his attitude.

"That" Dr is leaving(I don't know how to take that)whether he was always temporary or things did not work out for him. The carer has had clients of hers who he saw and he wasn't popular with them. So we'll never know the reason I guess but we won't be seeing him again.

Today, being put into a hospital was not even mentioned.

Really, the Nurse brought Dr's in about the few marks on Mum's face(mentioned in an earlier post)they were still there nearly 4 months ago so why start now to go on about them. They are slow growing and they won't kill her so today the Dr said "Why stress Mum unnecessarily" but its good to know that they can be done if they need to be or Mum wants to have them done.

Our carer disagreed with something said by the District Nurse and voiced her concern which the District Nurse disliked. But at least she managed to voice her opinion about what's been going on and the Nurse even her intentions are good was knocked back a little.

And yes, "That" meeting is taking place and the Carer has been asked to attend and the meeting is between her and the Social Worker but we still cannot find out what its about and whether I should be concerned. Or where its to take place.

The carer thinks that the Nurse set things away and then probably regretted doing so and could not stop things racing away. Who knows.

Update:To avoid future problems the carers association have suggested to let anyone in(especially Dr's)and show co-operation(so they've changed their tune and advice)so I'll not be contacting them unless I have no choice in the future. Why can people who advice not show consistency?

To avoid the possibility of that Safeguard injunction being instigated they said(We only reacted as we did to that Dr)and the one Nurse and for almost three months things were going along quite well. If Mum can continue to show that she knows what is happening, she has the right to say she wants to stay here and not be taken into care(hospital or care home)and as long as we can show she getting the best of care Mum should always be here.

Going into hospital for an operation etc...is a different matter.

Oh and of course the Social Worker is calling again on Tuesday next week and now it seems unnecessary unless she has something to tell us?

This Is Just Sinister...

The impression given by the Social Worker(She came out to see us)is that if we are not careful "A Safety Guard" may be issued and Mum could be taken away.

She brought someone else with her who kept me busy and she talked with Mum(and then they swapped places)

I have no reason to disbelieve Mum but some of what they say Mum had said she is sure she did not. But Mum says that a lot of questions they asked were about me and how I was coping and she gave a good report about me.

But Mum said all the right things and dare I say praised me and my care and explained how happy she is to remain here.

I understand "If" Mum says it herself she cannot be "Forced" to go where this Dr seems to want to send her. I understand(I don't know if this so)that she can sign herself out of hospital and ask to come home.

Now again, I am not told the absolute truth as the Social Worker left she said she thought that a Dr would call tomorrow(They are determined, I'll say that)How did she know that unless someone has been in touch with her? And guess what when I asked who the Dr would be...its the same one! I hate being lied to.

This now means that Mum has had to talk with the Social Worker for three hours, I think that is over the top and takes quite a bit out of her.

Friends, relatives and even charities cannot understand what is going on...and why we cannot be left alone, we're doing ok!

Mum is going on fine considering what is wrong. And even the District Nurse said as much today. That's why it seems so un-necessary.

They're Like A Dog With A Bone...

Mum's eating reasonably well and drinking well. Sleep at night could be better but she does sleep restfully a lot of the time so does get "Proper Sleep!" She's warm and content. The confusion is not too bad either.

You'll know that we had a visit from the Social Worker last week and a different District Nurse both gave a glowing report on how well Mum is doing. And we are now back to alternative days with the carer etc...

So the District Nurse we have had problems with returned from a weeks holiday today and we expected she have a chat with Mum and look at the tumour and leave.
I was greeted once again with the Nurse telling me "That" Dr was coming to see Mum again(coincidence?)

Of course not!

It is also strange that some of the other nurses we used to see on a regular baises have dropped out of the picture and we only ever seem to get this one nurse visiting anymore. The other nurses never seemed to have any problems with Mum and the care that receives.

I refused to see him and Mum had said(without any prompting from me)that she did not want to see him.

More was said(Not worth going into)but we got the "We're health professionals" routine again and she started to bad mouth the Social Worker to some extent so I am hoping to talk with the Social Worker about this after 3pm if I can manage to catch her on the phone(She said that she was going to act as a buffer between us and the Dr but the Nurse was basically saying that she couldn't)

I am also talking to the local Carers Association tomorrow who are supposed to watch out for people like us and our concerns.

Its upsetting Mum and myself un-necessarily.

Update:The Social Worker came out(and brought someone with her)did that trick of keeping me talking to the other person whilst she talked to Mum but Mum said all the right things and they had to admit Mum was quite well mentally.

But the Social Worker is back tracking on things she said a week ago(could you call that telling half truths?)and as she left she suggested a Dr will probably call tomorrow and it will be the same Dr...

Why not be honest and say that she knew a Dr was calling again tomorrow and it would be him. Its already been arranged. We really seem to have little or no say in what is being decided for us. I found out from Mum that many of the questions being asked were about me. Its all so underhanded, no wonder I am the way I am. I don't trust anybody now.

Well I hope Everything Is Going To Be OK...

I contacted the Consultant's secretary at the hospital and the results of my bloods had never been sent over to them.

So she gave me the Fax number so the results can be transferred from the Dr's surgery. Considering my condition the last few blood tests were confirmed as to being very good. And according to a quick word she had with the Consultant he expects this test will be similar.

Still my own Dr's surgery refer me to seeing a Dr(well my family Dr is away until the end of January and I'd rather see him)The letter is sent out on behalf of a Dr at the surgery so the only way I can find out what is wrong is to arrange an appointment with a Dr.

In the meantime, even though I still cannot find out anything at my surgery until 2pm the person on the phone said that she'd send the results over to the secretary but she let slip my previous bloods and these aren't that bad.

So probably/hopefully my Consultant is right when he thinks all
will be well this time.

The surprise that caused the alarm bells to ring at my surgery is a raised ESR level. What? I didn't know what that was and have never heard of it.

A quick search on the Internet informs me that it is short for Erythrocyte Sedimentation Rate(That's the activity of inflammation in my body)

Now, that does not seem to concern my Consultant and might be expected because of having a condition affecting my kidneys. So hopefully its just a case of my surgery being cautious but on my case but its maybe been spotted by a Dr not familiar with me.

The ESR is found out by leaving a container of blood and seeing how quickly they fall to the bottom...if its fast its not good, if its slower that's better and it can change from day to day so a one off test is not really a good way of deciding what is happening.

So I await a call but I am more positive as to what I am going to hear.

The Consultant's Secretary was so helpful and approachable I suspect the delay is because the Consultant was out of the office and she'll have to catch him or our surgery has been slow in sending the results to him.

Perhaps I'll hear tomorrow.

Typical...

Just as things seem to be going our way...

I have had a letter from the Dr's surgery telling me to contact them regarding the blood tests I had done last week regarding my kidney condition so as I cannot contact anyone until Monday afternoon(They say they have a message for me)I'll be worried all weekend. I'm not sure that worried is the right word, more concerned and I am reasonably calm.

And then wondering what I am going to be told when I do manage to get in touch as if it is serious it could affect how Mum is looked after especially if I need more care myself...

Ask me how I feel as I make the phone call or hear what they want to tell me. I had the tests on Monday, they had the results on Wednesday(when the letter was written)and the letter arrived today. Dare I hope the fact they waited four days to contact me and I cannot contact anywhere until Monday, its not as serious as we think? That's almost six days.

If I had to go into hospital temporaily or for regular treatment, they'd probably want to take Mum into care...they would not let her stay here alone and I am the primary carer. Annoyingly, the last few tests have been very stable and good. So I hope the message is a good one but they don't usually contact me so I am cautious.

Nowhere that can help is open over the weekend. I think I'll contact the main department of the hospital my Consultant is based on Monday as they may have the results earlier and can tell me what the situation is a few hours sooner.

Result!!!

Probably what we expected and unlike our good news regarding Mum and how we were being dealt with by the authorities this was what we probably expected and not so good.

Many have tried to soften the new proposals on welfare for the sick, vulnerable and disadvantaged or ask for a delay to see that what is wrong with them can be changed before they become law. Of course the campaign failed and any success was short lived.

A lot of that is because the media ignored the story or took the line from the Government instead of saying here are two views...you decide as a viewer or listener.

One of those who tried to get another opinion out there is Sue Marsh(with others working "Behind the Scenes")

It has taken its toll and I think its worth reposting the latest blog entry from Sue's own site.

So How Am I?

Statistics which the Government loves to keep putting out are so skewed...

An example today in the news is a report saying that 375,000 migrants are claiming from the UK's welfare state but there is not much being said as to whether they are from the European Market so they have a right to claim as we would if lived and worked in other European countries. They are not saying how many have become British Citizens and have been contributing to the UK's economy and so on. The headlines in the news is that 375,000 are making a claim.

A bit of research shows that only 2% are not entitled to benefit help but the fact that amount is so small has hardly been picked up on(I think that's around 5,000)and though that is not acceptable no one has said but we've also because of our safeguards and investigation stopped those 5,000 from getting anything.

And the same kind of treatment happens when the media/government talks about the sick ane disadvantaged. The media speak is so skewed.

I am not saying how I feel about this contentious topic just showing how what we hear cannot not always be taken at face value...

There is a great programme(I think some programmes are available as a podcast on the BBC Radio 4 website)called More Or Less they really are worth a listen...just to see how our every day lives are affected by numbers...

And at present if you have access to the BBC World Service they are carrying a series of this programme too...please give it a listen.

They are all available at the link I have posted...

Result!!!

The best that we could hope for in the circumstances...there is in the background a worry that Dr's and Social Workers can force someone into care virtually at the click of their fingers(it can be done very quickly)and it appears that those affected have little or no chance of redress but...thankfully(Please God)we are not in that category and hopefully we will find ourselves being treated fairly. To me its another way of using the law and seems similar to where someone with mental problems are sanctioned.

Well, I'm not sure we did but whatever we said worked! Perhaps we had right on our side and also I was able to point out the short comings in their system.

For now we are back to almost where we were when all this started.

1 A carer calling alternative days(not every day)

2 A carer calling later at time than present, probably 11am instead of 9.30am/10am

3 Three days Mum will have a bath(the fourth day will be a blanket bath)

4 The Social Worker will call more regularly and doing so will replace the Dr who we had to deal with and I understand she'll report to him how Mum is but I will still refuse to deal with him and cancel his visits if he tries to call. It is my right and I want to deal with "Our" family Dr or others Mum and myself are comfortable with.

So they have some of the changes they wanted but I think that we have the better deal.

The Social Worker was definitely pleased with how she saw Mum today. I am happier with this result. Why did we have to go through all that we have and fight to get to this point?

The Social Worker thinks we should be getting those supplements to help build Mum up too and says we may have success if/when I approach our own Dr. I want that other Dr out of the picture.

Another Day And Ready For A Possible Fight?

We never see hide nor hair of the Social Worker most of the time and there are times when I have approached her/her department in an open manner asking for help or suggesting ideas and you hear nothing! She has a lot of power though and she has decided to grace us with a visit.

Mum has decided to give her a bit of a surprise...when she walks into our lounge Mum will be sitting in her chair not in the bedroom. And hopefully Mum will have a bit to say about what she wants regarding the care she is or is not receiving.

Yesterday, I got the impression rightly or wrongly that just maybe there could finally be some give on behalf of the authorities who are supposedly meant to helping "Us" rather than adding to our stress.

Lets see if we feel that way after she's been.

On a positive side the carer today said she thinks that Mum is gaining weight and that has to be a good thing...

What Do You Do If You Feel That You Are Being Harrassed By A Dr?

To cut the story short the District Nurse that we have had problems with brought a Dr with her last week to see Mum.

We'd had reasonably positive news from the specialists that are treating Mum(considering where we find ourselves)and if Mum only has a little time remaining(and we have not been told everything)but opinion suggests if that was so, specialists are pretty blunt and wouldn't hide bad news but Mum is happy, content, warm, eating and drinking and in many ways has improved. The fact Mum is being called back for a consulatation in two months time and may be offered further treatment and they say the problem should remain localised and will be controlled, is good by our standards.

Mum was offered a very mild bottle of medicine that has morphine in it, if needed should her own painkillers not work...I thank him for that but so far Mum has not needed it.

The Dr wants to put Mum into a cottage hospital(he says temporarily but neither Mum or myself wants her to go)I have not influenced her decision.

He suggested Mum was dehydrated when he called(Funny that the hospital last week did not suggest that)and the latest bloods were fine, she drinks loads in a twenty four hour period and the simple test of pinching the skin and seeing how quickly it returns to its orginal place shows that she is not lacking in moisture, Mum is putting on weight again and her motions are normal etc...if you are lacking in moisture they are affected. On the day he called Mum's temperature and blood pressure was perfect and the day before whilst at hospital we heard the results of mum's last three blood tests and they were very good.

I understood today that the DM would call as usual and do the usual quick check of Mum's tumour and disappear, I had no idea he was going to call as well at the same time. He'll claim its for Mum's good but he's stressing Mum out especially and if we need any help I'd rather see our own family Dr when he returns at the start of the next month. He knows us. This Dr does not! Once you lose trust in someone, it takes a lot to gain it again. This Dr never will.

Why?

I'm talking years...but when we used to have a cup of coffee after our evening meal(sometimes cheese and biscuits too)but we always made it with boiled milk so it was always lovely and creamy.

Now, the leaflet issued by the dietitian on how to maintain/build up weight mentioned milky coffee and I suddenly thought...when was the last time I made coffee that way.

For too long I've made it with water and added milk afterwards. Amazingly, Mum said a few minutes ago "I fancy a coffee!" Its been quite some time since Mum asked for one and I have made it with boiled milk and its lovely. We never made it strong anyhow but the extra milk will add to Mum's calorie intake.

Funny how sometimes very simple ideas are the best and you need a reminder once in a while.

Dr I'm In Trouble...

We think/hope that the Dr we could not get away with could be a temporary addition to our Dr's surgery as another Dr is away until February.

I had to laugh, the nurse who took my bloods today for my consultant regarding my kidney problems brought up that I had not had a blood pressure reading for ages and the the drug I take means I should have one taken every six month at the surgery. The first time anyone has said that in 14 years(and I always have a reading taken by my consultant every three months so its in my medical records anyhow)

As I walked out my home to have my tests...a letter arrived addressed to Mum from the hospital Mum stayed in approx 14 days ago and remember the bother I have had to get a dietitian especially as to getting those supplements etc...to build up her calorie intake...this letter says Mum was due to see one before they let her out and back home!

Now, what did that Dr say about Mum not getting the best medical care that she could?

Or me for that matter...anyhow the dietitian says we can arrange an appointment/have a chat but they've enclosed a booklet with advice about diet etc...so I'll see what it says and what I think.

Everything in the supermarket is all about losing weight and many items are Low Fat but today I found some yogurts that are high in calories and a nice range of flavours.

One pot has the same calorie value as some meals and one cup of Complan(somewhere around 250 calories per pot)

So we should be able to build Mum's calorie intake still further...

Update:Had a look through the little booklet the dietitian sent and though only 14 pages long it has a lot of good ideas(and to be honest...I'm doing most them already)but the only thing I had not thought of to add extra calories to a meal is to add milk powder and I guess that is a bit like adding those granules I had heard about(and were going to be very expensive)

I can say that I am already doing all that I should be...

It would appear that we are back to being seen alternative days by the carer service(by error probably)but the truth is no one knows what's going on...Friday we were not meant to be seen by anyone and someone turned up. Sunday no one turned up but we were awake in case they did(we'd rather have not been)Tomorrow, again they say no one will be calling(But you never know)What a mix up!

But as this mix up has reduced some of the calls, we're keeping quiet...Don't get me wrong, its probably good that a nurse and a carer keee an eye onMum as they may spot something that I may miss but it shows at this minute we can and do manage well, not having someone every day.

And I can say hand on heart I have been proven right regarding all the things I have said on my blog about all that has happened and how we've been treated and that goes for the criticism I was getting on a forum where I thought I'd get support and I decided to pack up and avoid un-necessary hassle. It was only a couple of people but I didn't need it.

Looking after Mum sometimes I forget about me so I've just had tomato, cheese, ham and marmite in a wholemeal bun(I had two)And Mum's had the first of the yogurts(Strawberry with Channel Island Whole Milk)and enjoyed it! I think that I'll be buying more...

Later Mum had a ham and cheese omelet(and having looked on the internet)that offered approx 300-500 calories. It doesn't take much to increase or maintain energy intake.

I'm Glad That I Have My Gadgets And Most Are Being Used...

As opposed to being stuck at the back of a cupboard in the kitchen.

I have returned to making my own smoothies today. It was ok(and easy)

I'm still using a machine that I had convinced myself needing replacing(I certainly believe its been discontinued)but I have a full processing system I can move onto when it gives up the ghost.

I thought I'd attempt to get some fruit into Mum's diet and as a drink its easier so I threw a decent handful of blueberries, two bananas and three or four big strawberries into the mix with some whole milk and came out fine...

Hope I keep the interest and will continue to use them and do as much for my own health and benefit when I am alone...assuming I can afford nice food(and don't find myself unable to buy certain items due to the cost)

I think we'll finish today with some chicken and mushroom soup and then a piece of baked fish and probably ice cream.

I suggested Mum might like to go downstairs and watch some TV(a change of scenery)but to be honest there isn't much of interest so we're going to doze whilst listening to the radio...its a favourite night for music on Radio 2 which become really "Easy" listening in the true sense of the word.

7pm Michael Parkinson playing favourite music of his.
8pm a documentary about Tony Hatch.
9pm Russell Davies
10pm Clare Teal
11pm David Jacobs(Yes, he's still broadcasting as he reaches his 87th year)and why shoudn't he?

They produced a two part tribute on David and his broadcasting career not to long ago and soon Brian Matthew is having a tribute programme too but he's only 85(I think)and he's only been given one programme.

And you get such a range of music of the last 50+ years amongst those programmes but its not "Chart" music its the standards with the great artists that are not heard as much on the radio anymore...For anyone outside of the UK that's BBC Radio 2(Its available on the BBC I-player live)or upto 7 days after transmission...

What an exciting life I lead...

I Mentioned About Whether The Time Is Right...

To start a new political party with all the recent "Fun" regarding changes to welfare and the cuts being brought in. And the fact the House Lords had put a spanner in the works which I am afraid will really only offer a delay to what will happen in the next few months and years. And that many are asking who offers an alternative manifesto as the main parties are all similar.

I got into a little discussion with my fellow blogger and friend Span Ows about this and to some extent I can understand his view when it appears that "Many" take the safety net for granted and abuse it and was not what the welfare system was meant to offer. To the sick, vulnerable and disadvantaged but in reality those working the system are fewer than the media and politicians would have us believe.

But as always money can be found to try and brown nose other countries or for those projects that a particular Government favours.

And more than ever in these difficult times even those who work have no guarantees for the future as what their retirement will be like or whether you'll have a job one week to the next. So even those who think that they are safe need to think again.

Well this is quite an interesting piece even if it is more like an editorial and some will see as biased...

Nowhere To Turn For The Vulnerable

Complan...

Takes some beating...I've been going on about getting extra calories into Mum. Well every time she has a Complan with whole milk she's getting 250 calories and often Mum has at least four in a day so there's 1000 calories before you think of any solid meal. And Complan is less expensive than those supplements/drinks I have been looking at. Macmillan Nurses charity seemed to think Complan is good. In fact looking at some foods in the cupboard that is higher than most foodstuffs, most cans of soup only come in around the 100 calorie region and many every day foods are similar. This increases on things like creamed Rice Pudding made with whole milk.

I didn't used to bother much with counting calories and most of the time commen sense works but perhaps I will take another look...not because I want to resuce intake but increase it. I noticed the Lancashire Hotpot we had the other night was around 525 calories so having shared it I guess we managed around 260 each.

On another topic...

They've made us have a carer daily as you know...

The stand in who called on Friday was nice enough but to be honest she had hadn't been informed what was expected of her, officially if she had done what was expected it was bath day(Mum had already had one the previous night)and Mum didn't want to be chewed on so she left(Put down that she'd been with us 20 minutes)It was more like 8 minutes. We'll pay for that. But to be air it was not her fault that she had been sent and was unprepared. I suspect if we had told her what to do she probably could've done something.

They say Mum is thin and her weight is down, this your girl looked as though she could do with a bit of building up herself. And far as we know this your girl isn't ill.

We've been up since 8.30am this morning...no one has called...so we've wasted two hours...in the meantime I have changed/cleaned Mum(I have it down to fine art...I think it took 3 minutes)I've made Mum a Complan too. Officially its not a bath day, Mum had a blanket bath and was creamed yesterday so if anyone had called, I doubt there is anything anyone could do today so it would have been a wasted visit and not needed.

So our morning has had an un-necessary interruption.

What a horrible day outside too, its dull and freezing cold...most of the night it was misty with that icy kind of mist in the air. Its nearly 11am and it hasn't thawed and so if it gets to maybe 2pm-3pm it will start to get cold again. Its nice if you don't have to go out in it.

But its my tests tomorrow morning so I hope they come out OK. My own consultant has been kind enough to allow me to have the tests done at the local Dr's surgery(well, I used to do that any how)and have the information for him when I saw him at the hospital a few days later but now they call the surgery and get the results.
He's been very kind with the situation we find ourselves in...

If all is well, I will be left alone until the next appointment comes around but things are not good they can call me in at short notice.

Hopefully all will be fine.

Is Now The Time To Launch A New Political Party?

I don't really know if it could work...the intentions may be well meant but when you get into power you often find your hands are tied and many of the ideas you wish to introduce will not be possible or it will take longer than planned and your electorate will become disillusioned or impatient. Equally, some of the things you hate and want to change will prove very difficult to reverse.

Some new parties have been launched over the years and most fail or they have to join an existing political party to survive.

A lot of disadvantaged, vulnerable, disabled etc...are asking which party will offer them the best option to feel safe and secure and none of the main parties are offering any real alternative or a safety net.

Its been suggested that these very people should try and become a force. If you were going to try to do something about what's happening I guess this is the time to try it. Especially, as after the poorest in society have been kicked in the teeth, the middle class are now about to find they are getting squeezed so they may too find they have something in common with those at the bottom of the pile.

Maybe they could work together...the same is true that the Unions that have always supported Labour feel they too are being treated badly by a party that should at least offer an alternative manifesto to the other parties. There seems to be nowhere to go.

The House Of Lords has been criticised for years as being for the privileged but it is the best buffer we have to put the brakes on what the House Of Commons does especially at a time when laws can be passed on sheer numbers and you have no chance of any compromise.

And just as some MP's dislike what the Lords stand for, is it any better when the Lord's is now often populated by people are gifted the position of being in Lords by the political parties in the Commons and because of that they are probably going to go along with the policies of the party that awarded them their position.

And after the recent defeat regarding some of the changes the Government wants to introduce to the welfare system they have proved themselves to be remarkably on the ball and understanding about what the changes will mean to those most likely to be neglected by society.

The problem is that not enough was done to scupper the proposed changes and they'll probably be re-introduced and become law. Its mainly a delay and nothing more.

They say there is no money but money can always be found for projects that are dear to any Government who is in power and even a Baroness has said that its wrong that those at the bottom of the pile who had nothing to do with what's happened economically are being targeted first and as they are.

I would have said this whether I became ill or remained healthy and I still believe that as a basic element of a successful and compassionate society. Heaven forbid we go back to the idea of the Workhouse where people are hidden away from view.

Mum's Worth It...

No wonder the pharmacist said get the energy drinks and granuals to build up Mum's calorie intake via the Dr and on prescription as many do...

I asked if I could buy Polycal Granuals and Maxijul drinks privately in a local pharmacy when I was out today. I have to buy a certain amount...

30 bottles of Maxijul(200ml per bottle)works out at £73.98

24 boxes of Polycal(400g each)works out at £158.11

I still may...because at this minute I am able and that won't always be the case.

But I have come back with so much fruit and vegetables to make juices and smoothies and ideas for meals after my shop today I may very well succeed using my own ideas.

There Might Be A Good Reason For It...

I can't think of one unless I was around at the wrong time or not long enough.

However, thinking of how the Dr raised the possiblity of Mum being dehydrated the other day, I remember when Mum was in one hospital for nine weeks the came around every two or three hours(certainly morning, afternoon, evening)with fresh jugs of water at every patient's bed.

During Mum's recent stay at the other hospital run by the same trust...at the various times I was present I never saw any jugs of water near any bed or any removed or brought to a patient.

Knowing how important it is to have enough fluid, that can't be good can it?

Had A Long Chat With The Macmillan Nurses...

They think the care I am giving Mum is superb and they say Mum will be at her best in her own familiar surroundings.

They think we are being hounded un-necessarily. And they could see the points I have been making regarding the care that we are getting or has been forced upon us so good to see an independent organisation giving unbiased view. Actually saying that, sometimes those who think they know best can get it wrong.

But there are more positives than negatives regarding Mum's health and her care.
And here's the important bit...I am feeding Mum all the right foods and drinks and doing all the right things to try keep Mum's weight reasonable and keep her strength up. And can probably do so without buying the range of expensive products manufactured specifically for the purpose.

They didn't think that they could suggest anything more to what I am already doing.

Interestingly enough though they felt that we should have been referred to a dietitian or could ask to be so again when the Dr called yesterday and said he thought they were not offering the care that they should...there is a simple idea that they all seem to have missed.

When I took ill with my kidney problems 14 years ago a dietitian visited me on the ward whilst I was in hospital. The District Nurse, Social Worker, Dr etc...all seemed to have missed this as a possible idea.

I'm not a health professional and yet unless you are talking about administering drugs or doing operations etc...I really believe it is mainly down to common sense and I am doing as much as those who are being called in to supposedly help us.

Well, Complan was thought to be very good and I am off to make another for Mum now, soon I will be giving her a bowl of porridge. All said to be very good.

So do I feel that I have to justify my care for Mum and have the Dr yesterday tell me that I am very defensive? He said the social care was ok, well I see Mum's comfort, well being and what I give her to drink and eat as medical care. So I don't think that's bad either and I take notice more of the specialists at the hospital to what the GP thinks.

But again, if it was any other Dr at the surgery we are regestered I might be more responsive but this one I dislike his manner, he was arrogant and you could not talk to him. He did not have that bedside manner.

Now Today...

I've discussed with a few people what happened yesterday and they feel we are being hassled but cannot understand why and another had a similar situation.

He says we did right to stand our ground and as long as "We" say we want to stay here, they can do nothing.

Unfortunately, it has got to Mum and stressed her a little as today she said to me "I think that Dr will get his way!"

Not if I can help it and Mum should not be having to deal with that worry...

Those suppliments I was telling you about are very expensive no wonder people try to get them on prescription...would be nice to be given the chance.

Though the charity Macmillan Nurses seems to have an idea how to make some of your own nutritional drinks etc...

Ideas to Make Your Own Nutritional Drinks

They'll Say That They are Watching Out For Mum...

But I see it as adding to Mum's stress...

The District Nurse arrived with a Dr from our GP surgery who we have never seen before...I'm sorry we did not like him...I'd love to say much more but I am afraid what I say might be misunderstood and I'd go down in your estimation...

It always seems to happen when this particular Nurse is on duty(the same one who caused the previous problems)I do wonder how much he had been primed by her instead of making his own unbiased opinion. Regardless of what he said and whether I agree with him I disliked his attitude and general demeanor.

He wanted to take Mum away and make her stay in what he called a Cottage Hospital and be assessed.

He felt that she could be given better medical care than she has at present. Really? Why has it taken them so long to come to that conclusion? I wonder if she'd ever get back home. I know of the hospital he was talking of. So does our carer and many who go in there seem to never come home.

Mum does not want to go. I don't want her to go either and I feel at this minute in time all that Mum needs is being done for her. She eats when she wants and I see that she gets the best of everything. She drinks regularly(He tried to suggest that Mum was dehydrated)

The carer earlier today had said how smooth and soft Mum's skin is and if you do that test where you pinch the skin and let go, it jumps back immediately.

She had a few Complans, fruit juices and soup already today.

They kept saying I can visit whenever I wish(where they are talking about sending her)is miles away and getting there by taxi is difficult and the expense could cost me £40-£50 a day.

She is content and as happy as anyone can be in the situation we find ourselves.

Mum's bloods are stable, her temperature perfect. There are no infections. She is relatively pain free too. She's much brighter and was having what I see as a good day until they showed up. She has continued that way ever since.

The worrying line I thought was ominous as he left here was that he said "We know what stage your Mum's disease is at" Is it worse than they are telling us?

Yesterday, I was told it can be controlled and it unlikely to spread and will stay local to the area it is located.

Again, I felt that I had to defend my care as it was being suggested there is something not quite right that I look after Mum(Why that is different to a male nurse with a female patient)A mother looking after a son, a partner looking after a wife etc...I don't know...Someone said the other day how is it different to a daughter caring for their Father?

Again, I'd just changed Mum perhaps two minutes before they arrived. He managed to spot one mark on a sheet and questioned it. You would not believe how small that mark was...I made it clear that if he had been here five minutes later that would have been taken care of but also made it clear that every sheet and blanket has been washed, all clothes are clean and washed...there is not one thing in this house that has not been washed and isn't clean. That mark was removed within 10 seconds with disinfectant(I said it was a sheet...it was actually a matress protector)

And I made it clear that she is better cared for here than when she was in hospital last week.

And basically said don't start criticising my care.

Whether Mum has weeks, months ahead Mum wants to stay where she is and I want that for her too.

If I require medical care for a problem of my own I have I have talked about putting Mum into residential care for a week or so until I can come home again and look after her. And when I mentioned that the District Nurse that is an option so why is it so important to get her into this Community Hospital?

Mum told them "I want to stay where I am and I am happy and content!" And they had to admit if Mum wants to stay here they have to follow her wishes...

Mum was quite sleepy when they called so did not say as much as she might've but she did say she wanted to be here.

And after they'd gone she said coherently that she had heard all that I said and she was proud of me and how I had stood up to them and that I was right in everything that I had said and she thought they were trying to be clever and treat me like a child.

Of course they are supposedly experts but it felt as though they know best and follow a set criteria.

I will do all I can to avoid him calling here again...I hope he doesn't just land on us without announcement, if I need a Dr I won't be asking for him.

It just seems one thing after another...

And another thing, Mum uses her bedroom as a bedsit so she can listen to music, look out of the window and watch the world go by, have meals...all she needs is upstairs...toilet, bathroom and so on.

Mum does go downstairs especially if there is a reason to if there is maybe a tv programme she wants to see. She sat in her chair downstairs in the lounge after being at hospital yesterday.

The District Nurse goes on about her being in her bed(and then other times says there's nothing wrong with that)she seems to keep changing her mind. Today after saying they want Mum to go downstairs, the same person said, well she's just sitting still in her chair.

Not sure what she expects anyone to do in your home...What do any of us do? Watch TV, read a book, use a PC, listen to a radio etc...especially if you are older and frail.

Some things that many seem to be prescribed to make them stronger I keep being told would be good for Mum and local pharmacists say we should be able to get them through our Dr but my requests seem to be ignored...I'd like Mum's calorie intake increased and there are nutritional drinks and powders that can be sprinkled on food but no one seems ready to let me have them so I may have to buy them privately. They are not cheap but Mum is worth it! So if they want to prove that they intend to offer Mum better medical care here's their chance. Don't hold your breath.

We're Home...

We didn't see the Oncologist but a Dr who works in the Radio Therapy Department but she was reasonably positive about Mum's tumour(even though it has grown)and suggested that it will always stay a local problem and yes they are calling her in again for a check in two months. They did seem to suggest that she can have a course of RT again.

So that sounds as though they are not expecting Mum to leave us anytime soon.

They even suggested that they could do some localised marks on her face(not life threatening with RT)so they wouldn't offer to do them if they though Mum's time was limited. So maybe we have again more positives than negatives and she said again had the original tumour been seen sooner they probably could've made it even smaller but all in all not the bad day we feared.

Its funny how suddenly "Some" are interested in the marks on Mum's face...now. Why were the Dr's that treated her for years at the Dr's surgery not dealing with these?

When Mum was in hospital for nine weeks after a hip operation not doing something about it or referring her to someone else? Likewise another time she had in hospital.

Our problem is that if they stress Mum too much it may accelerate the dementia but even that isn't too bad for now...

A GP is calling tomorrow(Follow up to Mum's stay in hospital last week)but the District Nurse has invited herself along and I think its because she's raised the subject of these marks(again)little do they know the person we saw today at hospital has explained to Mum what they are and said they can be treated if Mum so wishes, I suspect Mum will leave well alone...One will improve be quite sore for a while and she'll have to wear a kind of contact lens to protect her eye whilst it is treated. Not sure Mum could get away with having a contact lens put in...the other is near a tear duct.

So when they visit tomorrow we've already talked about them and possible treatment.

Mum has also said she will probably not be considering changing her medication regarding pain as what she takes do still work a lot of the time. Changing to stronger pain relief may be something that will happen later. We'll have to see.

The carer returns tomorrow but you know we've really enjoyed having no carers here. Its been no more harder looking after Mum possibly easier...and as the District Nurse still calls she is able to check how Mum is and how the tumour/general health is. So Mum is not being neglected.

Mum's just eaten a decent portion of Shepherd's Pie...is having ice cream soon and a fruit juice. That's good enough for me.

Today's The Day!

In less than two hours Mum sees the Oncologist...

So worried about that and what he'll say...

And in the House of Lords they vote onthe first ammendments of how many will be affected by changes to welfare...

Time Limiting Of ESA

Difficult times ahead...

Tried Out The Juicer...

Mixed feelings...A cabbage had to remain in wedges rather than fed in as leaves otherwise it was treated as pulp and no juice was produced. I tried to wash it first as best as I could leaving it intact...

It didn't make as much juice as I hoped...Four carrots seemed to make only a small amount as did two sticks of celery but when poured out I guess that had made approx five glasses of juice. So perhaps more than it looked.

I suppose it came out at approx £1 for the amount that I made. As there is only a little celery and carrot included in the recipe, I don't think its fair to add that into the full price cost. It possibly added approx 30p.

Would another juicer be better? Possibly...but at that price...

The pulp was quite wet, if drier perhaps more juice could be extracted but its not been bad.

It wasn't that noisy.

Cleaning the juicer was ok.

I'm not sorry that I purchased it...

Palliative Care...

I suppose it does what it says on the can and I have to accept that I will lose Mum but its more when rather than if. Back handed positives from the District Nurse today in that I asked how Mum was in general and though her weight mass is slight(she said she sees people with less body mass than Mum)but not to expect that I can really put weight on Mum by feeding her well and that as the cancer takes hold her weight will reduce still further.

Again, Dementia wise she sees people much worse than Mum who are still in their own home(with some extra care)and Mum is pleasantly content, happy and hasn't a difficult attitude so I should just "Plod on!" as I am doing.

Not to worry too much if she doesn't eat too much and to let Mum eat more or less what she would like and when she'd like. To carry on with the Complan's, rice puddings, custard, porridge and so on. Plenty of drink to stop dehydration.

She did a little more than usual and actually gave Mum a blanket bath...

The tumour has started bleeding slightly and whereas I thought it was larger, she tended to say it looks different but still looks reasonably good. Of course we can only see the side of the tumour that is visible not what is happening on the other side. We'll see what the Oncologist says tomorrow.

The District Nurse is coming again on Thursday or Friday with a GP from Mum's surgery just to give her a once over and to see if Mum needs to change her pain medication for something better.

Not sure if things are much the same or I have more to worry about.

In Amongst My Own Troubles...

But it is connected regarding the vulnerable, sick and disadvantaged of society, we have changes happening to the help the State gives so it needs as much publicity as possible.

So here are more links to two important things happening the next few days with regards policies that will be discussed and probably carried through on numbers in Parliament.

Boris Says

The system would be under great strain if people had to keep contacting to report every single change in their medical conditions if it changes so much. I'm also happy that he highlights how small the amount is that actually commit fraud...we are always led to believe it is such a large figure. Also for them to know that figure must mean that those committing fraud are being caught.

The Doctors Say

Even the medical profession is unsure that the proposed changes are well thought out.
The Campaign/Report

I so hope this campaign has an effect but I fear it will fail because the main parties all sing from the same hymn sheet on many policies but again, because of the make up of the present Parliament many are carried on numbers alone.

Time to step forward on the Spartacus report

Other Public Figures Have Their Say...

Christine Hamilton

Stephen Fry

Val Mcdermid and Kate Long

The Spartacus Report – the easy read version

Not Watching The Clock...

As all carers do, even the most caring are restricted by time. Most companies do not allow them time to get from one place to another even if its across town. So you are playing catch up all the time and few companies these days give anything towards the mileage.

Well, earlier this afternoon whilst Mum relaxed and listened to one of her favourite music programmes on the radio I gave her a blanket bath, it was not rushed and I suspect unlike the carer I removed any soap that remained(I used two sponges, one for the wash and one for the rinse)and two dishes of water. Then creamed Mum's skin to keep it soft. It did not take that long and Mum said it was better than what our carer does. And that's not being critical of the carer. I'm not sure that the soap gets removed normally.

Update:Mum has just said that her body feels the best it has ever felt after a blanket bath and every part of her feels lovely I can ask for no better compliment than that. Having the carer in, I've tended to accept that task has been done so to use the phrase all those in charge tell me. Let the carers in and let them do what they are there for and you enjoy the extra time you get to yourself.

Well, I don't really get any extra time as I have to get things ready for their visit and more and more I'd say my care supersedes anything we get so far. I accept in time that will change. I guess someone calling regular will spot such a time but isn't that why the District Nurse calls? The Social Worker would be known more by her absence but you know what, I prefer it that way.

Another thing, they worry about keeping Mum clean and about infections, well if Mum's care is so poor, how come no infections were found after they did all the tests on Mum at the hospital?

Remember the talk about dirty finger nails...Mum said herself sometimes if you scratch yourself and have cream on your body you get residue in your nails as you could if you scratch your head. Even our carer said that(so have other Nurses who work for the service)Why do they think the worst? BTW Mum's hands are lovely and clean and well cared for.

The Social Worker would probably find an excuse to complain and those in charge including the District Nurse that caused the recent upset too. I wonder if they would any good at actually doing the work that the carer and myself do?

Because I Feel So Strong About The Following...

And more than a little scared of the future...

This blog enry links to another blog I have on the left hand side of my own but this a specific post that is very, very important...

If you are fair minded and live especially in the UK perhaps you may like to bring it to the attention of others via your own websites and blogs...

Thank You!

First They Ignore You...

Time Limit On ESA

Many disabled or disadvantaged just get on with it but when they keep making it harder for people to manage it is understable why people are worried and scared.

I'm glad that at last it is in print just how low the rate of fraud is, as I may have said elsewhere we have a TV programme that shows what fiddlers of the system get up to but they always show the worst cases and never say "these are exceptional cases we are highlighting" or "The fact we can show these cases shows how on the ball the authorities are at cracking down on fiddlers!" They leave the general viewing public to believe this is normal and everyone is at it! And that its easy to get these benefits. I hate that programme.

Mind you can never account for the Human race, someone who claimed to be ill phoned into a radio programme to say she thought our present Government is doing all that it can to make the lives of the disabled better, I doubt that very few feel that way and I might ask what planet she's on...

To some extent I'd actually include many in our society that work and those who find themselves unemployed not just the sick and vulnerable. I have said before that whilst a minimum wage is welcome...too many employers see that as an excuse to keep wages low.

The minimum wage may be ok if a few in a household are bringing it in or if you are starting out in work after you leave education and hopefully you live with your parents and they don't take too much off you towards your board and keep, you may just about survive but its not a living wage.

And many jobs have the household having to claim tax credits from the Government to still survive so people in work are still caught up in the benefits system. So you have to question the wages many are earning. Even before the downturn in the economy many companies were "Shafting" their employees. It happens whilst you work and more than ever your works pension scheme is scaled back so you are just as poor when you retire.

We even have a big international company Unilever, in dispute with its worker's about the final pension scheme and a series of rolling strikes are to be held at factories across the UK by workers starting in a few days time. The only problem is that such a company may decide its easier to relocate and though the workers probably feel their case is justified and this strike is probably a last resort decision, the risk will always be that jobs will be lost.

As We End Today...

Its been a good one...

Mum has been calm and rested. She's happy and content. She's slept, she's listened to her music. Mum has been easy to look after. And everything that should be done has been.

I have not arranged the resuming of carers coming in after Mum's hospital visit. I'll have to and I'll probably aim for Monday but it has been less stressful not having them here. And I say again, all that Mum needs care wise has been done. A break like this can be a good thing even if temporary.

She has drank regularly(Complan, tea, water and fruit juice)I managed to get some meals into her(smaller portions but...)Chicken and Broccoli Pie(that's a bit like Shepherd's Pie)Home made soup with lots of fresh vegetables whizzed up so its easier for Mum to eat.

I don't care when we eat, just that we do. No doubt they'd say its good to have set times for meals.

I Have A Juicer...

Not sure if the choice is the best I could've picked but I thought if you are not going to use it as often as you might, spending a lot may mean its a waste of money. It only cost £30(I see at some time in the past it had been on special offer at half price which I missed)

Anyhow, the reviews aren't that bad...

Juicer Reviews

Mine is more in a silver/grey colour.

And one person says more or less what I have said above. If I use it a lot and think the benefits are really good I can always consider a different model in the future.

I'll let you know what I think when I use it for the first time...

You Can't Teach Caring And Compassion

Of course even the most caring person will have lapses and perhaps if you do a job day in day out(as has been said in the past that if you see horrific scenes on the news or photo's in the newspapers you might be desensitised)but...
Probably because everyone has to has to work there are always going to be some "Wrong Uns" that get into any profession but I don't think anyone can argue that you cannot teach someone to have compassion and to genuinely care for your fellow Human.

I have spent at least eleven weeks watching the care Mum has received at two hospitals and...when I was involved in hospital radio going onto wards for approx fifteen years. I have seen both sides.

Some it is the fault of the nurse/Dr/consultant, some it is the way they have to follow procedures or are simply rushed off their feet being pulled in all directions.

In general though the biggest problem is...attitude and that some simply don't want to be there, the patient is getting in the way.

This last visit the nurses were efficient, friendly and quick to do whatever they were asked.

Where they fell down was again something that is often mentioned.

Food was brought in at mealtimes and they said they wanted Mum to eat something before they let her home.

Mum might've eaten more and fed herself if she was in a chair or able to sit up close enough to reach it but even with the table lowered and the bed raised as high as it was...the angles were all wrong and I suspect had I not been there she would have given up.

At least I was able to feed her and get some soup into her and a little mashed potato and minced lamb with gravy. The meal itself was fine, I had no problems with the quality/quantity.

They sometimes like relatives out of wards when its meal times but in many cases I think that could be a time they should be allowed to be there because if a patient has difficulties eating food, the relative can feed the patient and take the pressure off staff who may be busy doing other things.

Our Prime Minister is according to what I heard on the radio making cuts in the NHS and we could see 48,000 nurses being let go. Perhaps there are too many. Yet in the next breath it is said that he has proposals to improve the care nurses give to patients and that includes at least a nurse checking on a patient every hour. That I would think is a minimum requirement anyhow.

Perhaps if the 48,000 were retained, patients could be seen more than once an hour, that does not necessarily mean you have to bother a patient but you could be observing and if suddenly something goes wrong, you could be on it quicker and that may save a life.

One nurse seemed to be on the ball all the time that I was watching and whenever I asked for anything to be done it was done very quickly and with no protest.

Ideally people instigating such changes should be thrown in at the deep end and have to do the job themselves and experience it at the coal face. That would be good for the Prime Minister. Get your hands dirty and also see the emotions staff have to deal with facing both patients and relatives often having to give bad news. But that isn't going to happen.

Even without the fact it just won't happen, he couldn't go under cover, he's too well known, so any situation would be artificial and there would always be loads of helpers running around or security keeping people at a safe distance which the staff don't have the luxury of.

But again, whilst I am sure some care given to loved ones at home is below par, unless Mum was in need of a piece of equipment only available at a hospital, drugs not available to the general public or an operation...my care is just as good as what she had in hospital and dare I say probably better. As once again it is on a one to one basis.

Speaking of caring some are just that way...the taxi firm that we use, all the drivers go out of their way(and you can tell its not done because for business purposes)they want to help even if its nothing to do with needing a taxi.

Last night one driver had passed by a lady driver broken down on a roundabout and he couldn't do anything at the time but he went back specially as soon as he was able and did what he could to get her car going again. He had some jump leads. He managed to get her on her way so at least so she reached home safely. There are still nice people around(possibly fewer but thankfully some exist)

I saw a similar incident last year when the snow was at its worst(I am not fit to help)but a lady driver got stuck on a side road and spent ages digging around the tyres but could she free herself?

Many cars went by but eventually two cars did stop and had her away in seconds...that isn't taught, its within you.

Whatever Caused Mum's Blip...

and resulted in her being in hospital...

Her general health must be pretty damn good.

All the vital signs blood pressure, bloods and the fact there were no infections prove that if it wasn't for the two acute conditions she has developed she is pretty fit and healthy so it is a pity these two things had to happen.

It also proves that my care must be pretty good as if they were concerned about hygiene and infections and she did not have any when tested in hospital, I am doing all the right things.

As The Previous Day Ends...

Mum is sleeping soundly, little sign so far that I can expect a restless night.

She's eaten and drank.

Some of the memories have returned and she seems content and calm.

I managaged to get the weekly shop in and have some new ideas that hopefully may tempt Mum to eat her meals and hopefully build up her strength, one was prompted by the hospital as I found she was able to eat it quite easily...Shepherd's Pie. So I have some lean minced lamb, some maris piper mashed potato to go over the top of it, I may add a small amount of vegetable(even if I chop it up finely)and a little gravy.
Or tinned tomatoes instead.

Still looking at the fruit juice extractors...Amazon have sent an e-mail with so extra ideas to consider..

I think its time to turn in...Goodnight!

A New Day...

I wan't going to go to bed but I did and slept reasonably well.

I didn't bother to tidy the house that can be done later.

A couple of quick tasks to do...A shave...get Mum's bits and pieces together and I'll be away and it could be a long day.

Been told Mum is ok but she had a restless night so has been moved to side ward(bit vocal)so I assume would keep other patients awake. This may go against her early return home. I don't know. I was told it was nothing to worry about but my knowledge of patients moved to side wards suggests otherwise. I hope that I am wrong this time.

So see you later!

Update:Just got Mum home...there is confusion but she's much as before(and seemingly all tests came back fine)so we cannot blame an infection for the sudden change. Hopefully its temporary and she'll settle down again and an incident such as yesterday is a one off.

I assume a new appointment will be made for Mum to see the Oncologist for the cancelled appointment. I'll leave it this week and maybe get in touch and see if another can be arranged.

Mum's first request on getting home...she wants a complan.

A Day I Am Glad To See The Back Of...

Well, You never know how things will work out...

This has been one of the worst days I have ever had.

There I was just after 8am I had overslept and was rushing to get Mum to see her Cancer Specialist...

Guess what we never made it!

I went to make Mum a Complan and when I returned I could not get any real response from her. All she wanted to do was sleep. Well, of course after some time I really became worried and thought Mum was having a stroke.

So we spent 5-6 hours in A&E in a different hospital with various tests being carried out and once again even that did not go smoothly(they forgot about her)and her x-rays were delayed by 2 hours.

The only good thing is that she became coherent more or less as soon as she was on the ambulance. And it would not appear that she had a stroke.

If the observation goes ok and the further tests that are planned too just maybe she will be allowed home tomorrow. She is confused but not about important things and most of the time she is still quite bright. It also depends when you catch her 99% of the time she knew she was in hospital but when a Dr asked where she was she did not know but she knew she wasn't at home.

But again they asked her as she had just woke up, never a good time to ask questions.

Most of the time she manages fine...

So we'll just have to play it by ear...they are going to test of UTI infections and other things like bloods etc...This is one time I hope they find she has something making things worse because if all is well, then there may be more serious reasons...for what happened.

So we'll see what tomorrow brings...

Another Busy And Possibly Difficult Week Ahead...

The carers return today in approx 10 minutes(I say carers)in reality at present its the same one...

Tomorrow we have to jump through hoops and prove we should be getting extra financial help...all the forms were filled in months ago and those involved said we should get it and all was sorted, seemingly some loose ends need tidying up. So some official is calling.

Wednesday its the appointment with the Consultant regarding Mums cancer...Still doing well but I am afraid that the tumour is growing again...It now has white spots on it but a nurse who is quite up in such matters suggests that I ask if there is a fungal infection on the tumour bed causing inflammation and swelling which might make it look as though its growing again.

Also, a fungal infection could cause a change in behaviour, appetite, increased confusion as the digestive tract is affected and bowel changes...and of course Mum may need a blood test(I think they'll do that automatically)and it may show changes in her blood counts that could require a blood transfusion(as happened at the start of this journey)and if anaemic that too can cause confusion...as can a water infection in the elderly.

Now, if this is the case perhaps things may improve again with treatment and care, if so perhaps and I hope that we will not have too much to worry over again. But you await possible dreaded words your Oncologist may utter.

Update:Tuesday 2012 01 03:Not a good day, Hope Mum is better for seeing the Oncologist tomorrow and I can get her to the hospital by Taxi. Had the weekly visit from the District Nurse(first time for this one)she's normally in the office so has not much information on Mum. So whereas the others who call can compare from one visit to the next this one had nothing to compare it too. Overall she thought it looked intact and not too bad, cleaned the area and applied cream but...

When she left I had to do it again as I noticed that because of how she went about the task the bedding and the new pants were already soiled as they were put on. So again, I found myself doing the work others are supposed to be doing to save me some work. Now don't get the impression I am constantly doing this...we can often go for quite sometime and really though things may become worse, we are managing very well all things considering.

Oh I hope we are not going to hear some really bad news tomorrow and that he is happy with how things are and that he may consider further treatment when it is safe to do so. I hope that he doesn't say we will leave things as they are and Mum is living on borrowed time. We are but as things stand we have not been given a time frame.

Update:The visitor who is calling about helping us is not calling today and for at least the 5th time they have the dates wrong and we have gone back to a date we were given a few weeks ago and had I not called the office I'd still be waiting. I would be wondering if they would come when Mum is at hospital, we're back on for Friday...

What a horrible day weatherise, its windy we have squally showers and though it usually gets dark in the early afternoon it is really dark.

There has been damage reported in the media and some deaths around the UK but in my street so far my wheelie bin was blown over even though weighted down with lots of rubbish inside and a fence was blown down over the road but some hours later when I looked out it was erected again but as the person is out at work I have no idea who repaired it and when.

A New Year Begins...

It will probably change but at this time my Mum is very loving(which was always her nature)and likes lots of cuddles and the holding of hands so we are enjoying that bond we have. And I also realise that many are not fortunate to have such a close relationship.

If she falls asleep she likes to know that I am there and it gives Mum comfort.

I don't believe she understands that she has mind problems but admits to being frightened(its awful when you cannot make things better)It also doesn't help when at times she says "I don't want to die yet!"

I have read of people having reasonable lives for years with the right care and understanding.

I won't say that its not going to hurt but as I know Mum is not in control of changes her brain will go through I think I will be able to accept the day when she does not recognise me or know who I am.

And I hope that I will not dwell on it and think of our happier times together. This assumes again that she will be here for sometime to come and we may never reach that point.

With understanding and care we may still have some good times to share. But I am jumping the gun and so much of this is unknown.

In some ways its good to get help from reputable organisations and the internet/pc has been so important but its sad that most of my time on line is now spent looking up and finding out information about something so sad.

I hope that the confusion of late and how quickly it seems to have become worse may be tied in with the cancer and people have suggested some possiblities which sound familiar to when all this began approx 3 months ago and just as the cancer is supposed to be a slow one, I hope this type of dementia is slow too.