Random Jottings Of Gildersleeve

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Location: United Kingdom

Perhaps you'll learn more about me as you read my blog. For anyone who translates my blog using the translator facility, don't forget if you wish to read the comments in your own language to click on the title of the post down the left hand side otherwise they will remain in english. Also I assume that the translation is accurate but I don't know, so please allow for errors.

Saturday, December 31, 2011

I Should Have Had A Look Out...

But I cannot be bothered. I want to be around Mum. The weather is horrible and I don't feel as positive or bright as usual.

Being New Year's Eve chances are most shops will be closed tomorrow so I really should be getting some bread, milk and some chicken or something.

But I think I can manage with what I have in the food store until next week.

I have lots of soup, fruit, fruit juice, eggs, milk, bread, spaghetti, baked beans, ham, fish, potatoes, salad stuff, cereals, porridge etc...so I should be able to make something out that lot to tide us over and Mum isn't eating as much as she was.

I hope I can persuade Mum to watch some TV tonight but its difficult when the programmes don't interest her much. But a change of scenery has to be good.

Friday, December 30, 2011

Worrying Times...

Not what I want to see as we enter the New Year and our appointment with the consultant.

Mum's tumour has been quite consistent and remained intact...the carer and nurse have been very positive about how the lump has reduced. However, yesterday the nurse said that the skin around the area is healthy and all is good but the carer mentioned a slight change in appearance(some white spots on it)

As we are not having carers in over the new year period I was dealing with Mum a bit more closely today and yes, though still small and they say any change would take some time to show and it wouldn't happen overnight I think it has started growing again and yes I can see the white spots they are on about.

I don't know if the change is big enough to mean we should be over concerned. I said earlier our consultant mentioned if it came back within three months they may not give further treatment, six months they probably would.

Well, I suppose it must be at least six weeks since the Radio therapy treatment was completed so possibly if it does grow this slowly maybe he might consider another round somewhere down the line...its still much better than it was though I have to concede.

But of course we'll have to see if he wants Mum to have another scan, a blood test in case she is anaemic and needs another blood transfusion. Of course none of the above may happen.

And of course I am watching over Mum's memory problems too. Sadly, it may be more than short term memory loss, then again many illnesses have symptoms that are similar so I hope that I am wrong. We'll just have to take it one day at a time.

I have advice which may mean the confusion could(Please God)be for other reasons so we'll see how that goes. It could be for all the reasons I've already given and yes those so called innocent white spots that I mentioned may have something to do with it remarkable as it seems.

Of course I have kept Mum's remaining living brothers informed how things are but all they seem to say is Mum should be in a home! The easy option. Things will have to be really bad before I'll ever consider that option and its not on my radar. Another relative on my Father's side who I have made contact has said look after Mum as long as you can and you'll know that you have done your best by her.

His Father had dementia and was looked after until a spell in hospital but before he could be placed in a home he passed away. However a home was only considered because his mother was also quite aged and it was too much for her to care for him. I have age on my side for now. They keep saying I am still a "Young man!" Sadly time is catching up on me and unless they keep increasing the age that you retire from work, I'll soon be collecting my pension soon enough assuming my own health does not deteriorate further.

I was talking to a neighbour I have never met before and so many people are struggling and looking after their own "because its what you do" and not all are getting help...this person is in his 80's, going blind and looking after his wife who has Parkinson's Disease and he says he'll look after as long as he's able and she says she wants him to do so because she trusts him. How many are playing out similar scenario's?

Thursday, December 29, 2011

The Nurse That Called Today...

Said she did not know anything that had happened in recent weeks(that could be true)but I suspect that they all are in the picture. However, this one has seen the carer at work and she also knows what I do for Mum and she is more approachable.

Again, this one has told me that I am doing a "Good job" of caring for Mum(I'm not after praise)and I must avoid being paranoid about every little mark that may mean something not as clean as it could be but no one could be kept as clean as Mum(not even on a hospital ward)but who got me this way and who upset the carer, Mum and myself?

Its thanks to this one that we were given access to some extra medical items that were costing us a fortune, this one is looking into getting us a supply of some nutritional drinks on prescription so its a change from Mum drinking Complan which though good we are purchasing and this nurse also goes out of her way to get us other items we require on prescription when we are getting low.

She is also trying to sort out a problem we have with the Social Worker about Mum's bath routine...its too early at 9.30am(three times a week)Mum is half asleep. We are trying to change it to 11am-Midday or in the afternoons but if later morning works Mum keeps the carer she knows and likes. The earlier time often means Mum is so tired/asleep or not awake enough. So it really does not do Mum any good and adds to the stress for both of us rather than helping us.

To use an old expression she is "Good Egg!"

The good news is that it appears that once again we have three days where we are being left alone and can enjoy each others company over the New Year which again proves that we are managing quite well for now...and we have some quality time.

The carer and nurse call enough to see if anything is wrong regading Mum's condition and the care she receives.

The overall opinion is that Mum's skin looks healthy and the tumour seems to be remaining quite settled and intact, hopefully all good signs for when she sees the Consultant next week.

Fruit Juice Extractor...

It appears the best one on the market(with a two year guarantee)is made by the company Phillips but I will have to part with £100.

The big question is will I use it?

Though I believe its a good idea to have one as you can use up vegetables, fruit etc... that might normally be thrown out and you can make your own combinations of juices so have a larger variety that what is available in a supermarket. On the other hand buying individual ingredients is much more expensive so buying juices already packaged is still very appealing.

Of course you can add purchased juices or combine juices to suit your own tastes anyhow without using a juice extractor. I just want Mum to have the best of what's available to give her choice and variety and the best chance of controlling/beating the cancer, Improving her memory and make her as comfortable as possible. Well you have to try anything. If this does not prove how much I care for Mum what else can?

Drinking all this juice won't do me any harm either. Although having kidney problems I may have to watch out for water retention as much as anything so I may just have to drink less.

I am able to make smoothies and liquidise vegetables and fruit using a food processor/smoothie maker.

I have discovered two great juices which kind of make me wonder if its false economy having a juicer made by the Campbell Soup Company under the brand V8...there is a Fruit and Carrot tropical juice that contains Apple(38%)Carrot(27%)Orange(14%)Pear,Pineapple(8%)Passion Fruit(2.5%)White Grape and Banana.

The other is a vegetable juice containing Tomato(87%)Carrot, Celery, Beetroot, Parsley, Lettuce, Watercress And Spinach.

Perhaps there are others in the range but these are the only two I can find on my town.

Could I really do any better? Only in that I have some other combinations that are not on sale.

Update:I have found some great sites that show various combinations of fruit and vegetable juices that can be made up without a juicer and likewise some that need one. And it should not really work out much more expensive to make "Your Own" and you should be able to make them so you only have a glass as opposed to a full carton.

I've confused myself...I can get the juicer I was thinking of £30 cheaper online from Amazon but there is now a newer model which is double the price of the original so we're talking £200...There is also a site that sells only juicers and the like and they are supposed to make the decision easier but they've confused me further which juicer to buy but many on that site have 6-10 year warranties on the products they are selling so if I wait a few days nothing will spoil I guess.

The one I chose still seems popular but a few reviews suggest that some plastic parts break easily and it takes quite a bit of work to clean it when you are finished. I'll probably end up choosing it.

Wednesday, December 28, 2011

Really A Carer Is More Than A Carer...

she/he is a spy. First and foremost they are supposedly in between a nurse and social worker.

They can be in trouble if they do not do their work properly but if they spot something they think is not "Quite Right!" Not only are they covering their own backs but they are the eyes and ears for both the medical profession and Social Services.

So often the work they do is more social.

By talking to and building up a relationship with the person they are visiting and that also includes others that live within the property and are also caring for the person they will pick up on something that does not add up.

Today, Mum wasn't being awkward but she simply was too tired to have a bath. She even dozed off whilst the carer was here. It would've been wrong to chew Mum on by dragging her along to the bathroom. So she has promised to have one tomorrow, that proves willingness.

As time is tight tomorrow, I am running the bath water before the carer arrives to save time. In theory though I am doing the work of the carer and what we are paying for. But I don't see the care Mum receives in black and white terms where I won't do something because the carer does that task or vice versa. On the other hand if Mum needs a back rub because its hurting, if that's not in the care plan...I can do it but the carer is not allowed to. So I can do more.

Mum is not avoiding having baths, some think three baths a week for Mum's age is too much and many have less than three. Mum cannot have a decent bath even with the help of a special chair that lowers her into the bath, she longs to lay out in a bath and feel the water around her. But the complication of a hip repair and to be honest we don't really like the shape of our bath its not the most comfortable anyhow. We liked the old one that was replaced when they upgraded certain rooms in the house.

I digress, just because Mum doesn't have a bath with a carer does not mean she is unclean...she gets bed baths, her nether regions are washed daily with clean soapy water/disinfectant and she has baths with me but at times that suit her better maybe 4pm, 10pm whatever. And between the carers taking a break over Christmas and returning yesterday Mum did have three baths. Its not a problem for me. Who do they think is caring for Mum when they are not here?

I have talked with Mum and she says she might feel different and have these baths with carers if they could switch perhaps to an afternoon.

But those making the decisions seems set in their ways and they don't always engage with the people they are supposed to be helping. I believe our carer may take up this with her company as even she realises that it is wrong the way Mum is being "forced" to follow the new plan which they keep saying was agreed but I know neither Mum or myself said yes...it was "forced" upon us.

Mum even warmed to an idea I had that if these baths could be moved to an afternoon that would be much better so perhaps we could reach that compromise. We'll see what happens next.

Mum's fingers/hands are cleaned often during the day either by herself or me. Most of the time that's how they are but now my carer has admitted when they call they are looking and she admits it is paranoia but she has to follow what she has been told to do. So something has been said even though I am told otherwise. Really no one could be kept any cleaner than Mum.

Tuesday, December 27, 2011

I Sometimes Think...

Because you have to tidy up a little and get Mum ready upon waking, the argument that by having a paid carer brought in by a Social Worker to look after the person will save "You" the main carer some time for yourself, I actually feel until the person is really in need of care because they have gone down hill health wise, they can get in the way.

They can make a condition worse or stress out(unintentionally)the person they are meant to help. And where I can do tasks at a leisurely pace I am being rushed. And I have to put in at least an hour before the person arrives. And it doesn't take into account that perhaps during the night the person has been restless or may have needed some extra care so when morning comes around we may be tired and would like that extra rest but you look at the clock and reluctantly rise. And you do anyhow, as you are worry that you'll oversleep.

It reminds me a little of the old joke where someone hires a domestic cleaner to do their home(and actually go around cleaning the home before the cleaner arrives)so its presentable for the cleaner and you've in theory done the work you hired the cleaner to do.

Sunday, December 25, 2011

Christmas Day And...

A Happy Christmas to You and Yours...

Apologies if any of you reading here usually receive a Christmas card from Mum and myself. You must admit this year is a little different and so some things I am behind on so if you sent a card to us thank you, it is appreciated. Hopefully, you'll receive a New Year card soon...

In general the day got off to a reasonable start, Mum needed little if any extra care. Mum wants to watch the Queen's speech(we may watch the repeat later)so we can listen to our favourite Sunday afternoon music programme which a Christmas special. Mum is also looking forward to her Christmas lunch(Well, evening meal)

Update One:Most of the work I have found myself having to do today and you guess how awful this is that Mum wanted a Tomato juice and...managed to spill it all over a continental quilt, carpet and some pillow cases which managed to go through to the pillows itself. A small amount can cause so much in the way of stains. And again, when you cannot get the quilt into a washing machine you can imagine the problems its caused.

Complan can be equally troublesome to get rid of if its spilled and you can only take so many precautions to avoid accidents. That would be the same if we started to think about replacing the carpet.

The weather isn't so good outside, its not a white Christmas but its dull, white cloud, cold and there is an increase in the chilly winds...

The worse thing is my brand spanking new laptop I have discovered(I wanted it to record audio files)it can manage speech with some music fine but music on its own sounds metallic and as though its in tunnel and it kind of disappears with a strange effect I cannot describe(it has a sci-fi quality about it)so to some extent it has turned into an expensive mistake.

Who would know this would be a problem. I'm wondering if it needs a better sound card installed if that's possible(more expense and the warranty will be no longer any good)the other idea which is much less expensive but a compromise would be to join up quite a few phono audio leads and run them from downstairs all the way to my bedroom and plug them into one of my desktop PC's here.

There is always a problem unforeseen...

Update Two:Not as planned, I am still cleaning the quilt(tomato juice really is a pain if spilt(I thought that it may)but this is my first experience of it and I am washing in general. Mum's very sleepy and I have a feeling she's not going to get downstairs to see the Queen or have her Christmas meal there but she could still surprise me. Perhaps Boxing Day will be better.

At least the radio is good tonight(better than the TV)unless you like soaps, so perhaps we'll just enjoy each other's company and listen together. I think it will be a case of taking the Christmas meal to Mum. She's still talking of having it and yes, some Christmas pudding.

Update Three:Not the greatest Christmas we've had, please let tomorrow be better. Mum has slept most of it away. If that helps Mum that's fine by me but if its our last together I'd rather treat Boxing Day as the one to remember. It can be our Christmas Day. I did get a Christmas meal of sorts into her(more to build up her strength than anything because she had not really eaten anything)We did not even pull a Christmas cracker.

If she's well enough tomorrow, we'll try again and see if we can eat some Christmas Pudding. I'm still washing, more little disasters like the chain on plug for the kitchen sink has snapped. And a pillow I washed and tumbled dried has hole in it and feathers are in the drier and on the carpet where I pulled the pillow out of the drier. By the way how do you stop pillows from going a funny shape after they've been in a washer?(I had to cut into the pillow and try and smooth the filling back into some kind of shape so they were flattish again)Minor annoyances in the great scheme of things.

I think tonight rather than try and grab some sleep whilst keeping an eye on Mum I will stay up all night and keep an extra special watch over her.

I want a better day tomorrow as from Tuesday the carer returns and we start all that routine again and we know not what the future holds(Well, we have an idea but not how long we have and how soon difficult things could become)I worried about the cancer but I am more concerned now about Mum's memory problems/confusion but mostly likely if Mum is tired. Its terrible having two serious things to worry over.

Saturday, December 24, 2011

Christmas Eve And...

We've done as little as possible(other than my shopping trip)

We're just enjoying each other's company and thankful that we have this Christmas at least. We dare not look too far ahead and are living one day at a time.

Mum seems to have her appetite back and I am not having to persuade her to eat.

She's had scrambled egg this afternoon, soon we'll have some soup and later on probably a slice of ham, chips(French Fries)and Curly Kale with some gravy and just possibly something to follow.

We can have it late as we are planing a rare night of TV watching as there is more to interest tonight than Christmas Night. Its mostly documentaries or compilation shows of people we used to watch on TV so it is a big night of nostalgia.

In amongst that selection of programmes Mum found out that a radio show given by Michael Bublé was recorded by the BBC and is available to digital viewers via the red button so she wants to see that.

We had arranged to have no carers over the Christmas period into the New Year but because of the District Nurse and Social Worker causing un-necessary problems recently it looks as though we only have today, Christmas Day and Boxing Day and they return on Tuesday.

Did we miss them today? No...as we said when things get difficult we'll ask for help and be grateful but you know what? Mum was relaxed all morning, not watching the clock and waiting for the knock at the door, the truth is we thought someone was calling but as the time they usual arrive went by we relaxed even more.

I did what the carer would do(easy peasy)and its been an easy day and she's been really easy to look after. And it could be that way most of the time.

The District Nurse calls weekly and I have access to the Social worker so there is plenty of time for me to ask for help, there is every opportunity for the District Nurse to see how Mum's health is generally and how her tumour is doing and the option to bring in help. And see if any abuse was going on...I am unsure why they seem so interested in us. And I have seen cases where many people are looking after and being allowed to keep their loved ones in their homes and they don't hsve social or carers involved and you could ask why they are being neglected.

It is baffling quite a few people who know us. We have always been so well respected and liked even if I say that myself. If I don't get things sorted whilst Mum is alive I'll certainly have plenty to say when I am on my own. I have lost any respect or trust in the District Nurse and the Social Worker assigned to us. Be interesting to see if they can get that back.

I also appreciate that there are many decent and caring people in these professions who do a grand job. That's a pity because I only say what I do because of my experience of using the service as I have seen it that makes me seem hostile to some. I wasn't when we started.

Unfortunately, if I live long enough but due to health reasons I have to use the service or they put me in a home as I am alone, I haven't much to look forward to as I have no one to care for me the way I am looking after Mum.

Please God I'd rather be dead than have to end up in a home or have these people interfering if they behave like this lot.

Christmas Shop...

Well, that's the Christmas shop out of the way. I did not buy much but today proves how small my fridge freezer really is but I've squeezed it all in...and it still cost a fair bit.

I realise only too well if I was alone how I would be looking at prices more and thinking can I afford that and what are the essentials. For now though all that concerns me is buying the best of what's available quality and variety wise so Mum has the best and I guess myself too as I have a medical condition too.

I was out at 6.30am(I can hardly believe that)but I thought if I don't taxi's may be difficult to get later in the day and whereas I buy what we need others stack the the shopping trolley's high and empty the shelves(and the supermarkets all open again the day after Christmas)so the one on our town is closed for 26 hours...

There is talk of(I heard on the radio)but I am sure this has already happened if the shop is owned by someone who does not follow the Christian religion they'll open on Christmas Day but now there is talk of any shop possibly opening on Christmas afternoon.

The only thing I was not really happy was with the choice or lack of bread/bread buns but hey, I have something. I understand the shop was busy all through the night. I thought that I may be able to get some cooked chicken breasts and some of the sliced turkey with stuffing I found earlier in the month but in the end I had to buy fresh chicken breasts(to cook later)and I did not want to pay £12-£15 upwards for a turkey etc...so luckily there were some Turkey joints(with stuffing)for £5 so I settled for that.

I had to pop back this afternoon though, as this morning my taxi driver managed to drop my large sherry trifle and though most of it remained intact, it was a bit of a mess and the lid came off.

I managed to get the last sherry trifle in the supermarket, just waiting for me.

I have unfortunately realised as I write this forgotten one item, but I'm not going back out for that, Cranberry sauce to serve with the turkey.

I was also thinking of buying a juice extractor so Mum can get the goodness out of vegetables if she does not feel like eating them but perhaps they had sold out of them or none were in stock. I already have a good food processor that also liquidises and an older liquidiser that could fail soon. They're fine for making smoothies and blending but that's still not the same as making a juice from fruit or vegetables.

I'll pop into another retailer later in the week and see what they've got. Perhaps there could be some in a sale. In the meantime I found some vegetable juices already in cartons so I've purchased some and extra cartons of tomato juice.

Its funny how tastes change I would never of eaten tomato soup, tomatoes or drank tomato juice now I quite enjoy them all.

Friday, December 23, 2011

There Have Been...

some new developments that seem sinister(again, I'm not supposed to know of)and if this is our last Christmas together its put a damper on things(I have been lied to again)

I have talked to Macmillan Nurses, my local carers association and another charity. It is difficult because everywhere has closed over Christmas and what may happen is pencilled in for next year. But there is a limited amount of places I can turn for help. To some extent out of three places contacted so far, little can be done.

I am wondering whether a solicitor should be considered because if I don't go down the legal route I'm still stuck with the people I am unhappy about. I say that I am unhappy(Mum isn't exactly cock a hoop about it either)

I could try and sort this all out and for all I know I could lose Mum before I get a satisfactory result if one is possible.

It seems I can change the Social Worker for what good that will do...not much in the way options then.

Oh well, Happy Christmas everybody!

Thursday, December 22, 2011

I Guess It's Safe...

To say that they are not coming...we were ready for the carer at 9.30am(well, the relief carer...)our's is at a funeral today.
It's midday thirty and there is no sign of anyone, it looks as though they have forgotten about us!

Wednesday, December 21, 2011

A Sad Day...

I have helped run a forum for many years and we were a lovely bunch of people who rarely if ever fell out with each other. Disagreements were few but different views were treated with respect and you knew how to deal with problems if they arose. We had a crisis some years ago but weathered the storm.

But over the years people do leave and now the membership is probably standing at approx twelve people but these things happen. Out of those twelve some rarely post so that means the core membership is approx six people. There are still some lovely people there.

Some of what I write here because they are/were my friends I have posted there too. They wanted to know how things were but I have been accused of self pity and been criticised about how I have reacted to the help we are receiving. The last straw was that someone said something really horrible about Mum(I won't repeat it here, it was quite disgusting)

In the past some would have been finished or warned for saying less. I don't want anyone to take sides but I would've hoped that my fellow mods would've said "You have crossed a line" withdraw that remark there is no bases for saying such a thing.

Say what you like about me but not my defenceless seriously ill Mum.

I would say that wouldn't I, especially as you are not hearing all sides but I refuse to say what I found offensive. Clever people on the net probably will be able to find it(though the forum was mostly private and you had to be a member to read everything)we tried to protect our members.

I have also had(I must protect their honesty)but it shows how I keep what I am told to myself, someone admit they have said nothing because it could divide the members and some may talk to her or decide not to, damned either way. No, all that had to be said was "Withdraw that remark, you have gone too far!"

Again I'm not asking for someone to take sides.

And today I discovered the argument had flared up again(By chance)about something else I had done(but I had not)totally innocent and only discovered this by chance(the same person/people again)once again I had no support.

How sad to have who I thought were friends during our difficult time to have this happen. The only good thing is that a number of people did not want me to leave and return. Some apologised for being cowards and not saying something and many have asked to stay in touch and have given me an e-mail address so some of my faith has been restored.

And privately those who have stayed in touch are less than complimentary about those who said such hurtful things. I suppose the truth is that when there only a few people keeping a forum going they are frightened it will fold altogether.

Some thought I would go complaining to the person who pays for the forum to be online, If I do contact that person it will not be to slag the board off just to say I am no longer actively involved(I'm just popping in and tying up loose ends until I am banned, my access is blocked)and though still officially a moderator I am reluctant to do anything for fear of being crticised. Would I post again/ Really, only if I felt I had to defend/justify myself because the war of words breaks out.

I know that if the board is closed down plans are afoot to kind of launch a new site where those who are suddenly without a home can go and resume from scratch. I won't be invited.

So I have mixed feelings today...and you feel bad because of all the years you've wasted.

Now what else can go wrong?

At least I have not named anyone nor said which forum it was...

I've probably created a rod for my own back writing about this here and no doubt this will be mentioned at the other place as some read this blog, I probably should've kept my mouth shut but when you feel sad sometimes you need to say something(I suppose its a bit like writing a diary)

Tuesday, December 20, 2011

Mum Had A Bad Night...

They are happy how Mum's tumour is and another problem she has appears to have improved. However, Mum did not feel like eating yesterday so we were back to Complan drinks even though I had cooked an evening meal and it was ready to go!

I'll find a use for the sprouts, chicken and potatoes today so they'll not be wasted.

But of course this also means Mum did not have her bath yesterday either.

So she has to wait until 9.30am-10am for the carer to give her a bath as it is written into the care plan...

Well you know what? Sod the care plan...

Mum is awake...she wants to rest but does not feel like waiting until the carer arrives so even if the carer is booked for a forty five minute slot(and we still have to pay for that time period)I'm giving Mum her bath in a few minutes and taking her back to bed and the carer will just have to write what happened in her report/record that she fills in every time she calls.

Mum wants her baths when she feels like them, be it a morning/afternoon/evening and does not want to be tied to a particular time on a particular day. And though the care plan says she will probably have the minimum of three baths weekly, taking our bath care, it could be more than four.

I don't work to a time and so Mum can stay in the bath as long as she wishes and hopefully will get more benefit from them.

And this time I/we am not going to be dictated to and will tell the Social Worker that as well if she ever gets back to us. She may be busy with other cases but she often says she'll phone or call("I'll get back to you")she often does not.

I think I managed to get this home to the District Nurse finally after our talk yesterday. Alot of her happy disposition is over the top, when she arrived she kept waving and laughing and smiling as she came over from the car and now I don't fall for any of that guff, I'm sorry its not my nature but I was cool and non responsive.

All they do may be done with the right intentions but when they have a genuine, caring person like myself they seem determined to cause un-necessary problems(and they will probably happen sooner rather than later whatever we do)and I am so easy to work with.

Even now though the chair lift is better than a board across the bath but Mum still misses being able to lie in a bath and feel water around her body so its not the wonderful experience it used to be. Whoever bathes Mum they are a chew on.

When all this is over Mum is going to try and eat some breakfast(probably porridge and toast)which will build up her strength and release energy slowly.

Monday, December 19, 2011

Still Unsure...

I'm a little happier after today but still a bit suspicious of the District Nurse. I was pretty cold with the District Nurse and it resulted in us having quite a heart to heart but again(Stupid me)I got distracted by a second person who came along(who was introduced as a colleague who might fill in when someone is missing)but later on it came out that she was a "Team Leader" and that means she is "The Boss"?

So not exactly who she was said to be and...the Nurse obviously felt she was going to get a bit of a difficult time otherwise why bring a second person again?

One thing Mum remembers is the Nurse when talking with her was that she remarked on Mum's clean finger nails so that still rankles and shows it was one of the problems in the first place.

But I was told, that I am caring for Mum well enough and doing a good job so maybe I'll have to accept the situation for now, the only problem is we are still stuck with the extra care that has been arranged and the extra cost.

They are very happy with the progress regarding Mum's tumour.

She has to have three baths with the carer's(not four as was mentioned on that meeting I had last week)but as Mum is having at least three baths each week and she prefers to have them when she wishes and stay in the water a bit longer so she gets more of a soak and benefits from that but then that means taking today as an example she wants her bath(and wash her hair)before going to bed after having been downstairs watching tv earlier but then that means as tomorrow is marked as a day for a bath with a carer Mum has to get up at 9.30am and have another so she's had two within twelve hours.

And Mum doesn't like getting up that early(I don't)when I don't have to and chances are as the carer leaves Mum will go back to bed to rest even if not sleep so the visit by a carer is actually a bit like a nuisance rather than benefitting Mum.

Mum could've had three or four baths with a carer under our original agreement as they were visiting four days per week already.

Saturday, December 17, 2011

The Cost Of Care(Money And Physically)

For approx 360 minutes of care a month we pay £70 a month! Now, if/when Mum has everything done for her by her carer to make her comfortable, possibly you can say its worth it!

Then again, by the time someone arrives, prepares for the task at hand and depending how tired the person is being cared for or immobile, some time is lost. So you'll be paying for some unused time. If it is worth £70 for 6 hours. Now we have been forced into having another 480 minutes(three extra visits of extended time)that is now 14 hours each week so we will now have to find approx an extra £82(That's £152)each month(My figures may be slightly off)

What is a family relative worth who is caring for a partner, a child, a mother, a father etc...who is there for the remaining 616 hours per month. No wonder governments prefer to keep people in their own homes and to be cared for by family members.

You'd pay much more if loved ones were in a care home and/or the government and councils had to pick up the bill.

Mum's worth it but we were told "You will have the extra care whether you want it or not!" The decision was already made so the visit form the Social Worker and District Nurse was a stitch up!

No one asks you if finding the extra money will be a problem and to be honest I can at present do what the carer does and could quite easily bath Mum and as the baths carers do are so quick, with me I could allow more time to soak in the water and feel the benefit of it. To save time I usually have already run the bath water and positioned the chairlift in the right position.

And I also think that the care that I am giving is more difficult. And I think I do it all very well and in hand, that's why it hurts to have been lied to and treated as I have.

Someone said you do realise that you will be discussed by the care and social services departments...of course I do, I am not naive but that is different to being lied to or being misrepresented. And not being allowed to answer questions directly or defend myself and put my side.

Someone elsewhere has come up with idea that Mum is not wearing any underwear and is naked or semi-naked and her dignity is being neglected, I don't know where that person got that idea but can I say she wears underwear and would if she was going anywhere, in a public place or expecting visitors at home or moving away from the bedroom and her bed would wear a skirt or something. It was suggested Mum had said she did not want to wear underwear, again I cannot see anything to suggest that.

I tried to look over my posts to see how this misunderstanding arose but cannot see it so far.

And whilst I am on I am the only living relative and I love and care for Mum as any son may and yes we are close but there is nothing sexual in our relationship. And without me Mum would probably be in a care home where as good as many of them are and those working there do care for their residents, she'd never get the one on one care that I can offer here practically 24/7.

Unless, I decide to let it go or take it further with those involved. Reading what I have written, you as a reader can only agree or disagree with me or those who have instigated matters and caused un-necessary problems. And work from what I have written which you may see as biased(I have tried to stick to the facts)I guess social services see so many bad cases and being untra careful they may have got hold of the wrong end of the stick but its difficult when you are a genuine caring person in the community to be shafted like this.

So I'll post about this again should something unexpected happens or there is some response should I try and reverse what's happened or defend myself.

So What Can You Do?

Bit personal now...I mentioned one thing that had been complained about and probably went against me was Mum had dirty hands at the minute she was visited. They are checked often in a day and I have a variety of ways to keep the hands and nails clean including a scrubbing brush, water, disinfectant, creams and that alcohol based hand wash liquid.

There I am at 3am this morning...I changed Mum, made a drink for her and on coming back with it found her hands were dirty...so I cleaned them immediately but what if that Nurse had happened to call, I thought Mum was OK because the last time I looked...she was...so I say go straight up.

I could be innocently in trouble and seen as not to be caring for Mum. And yet in this example when I did bring the drink into Mum she herself mentioned her hands needed cleaning.

Unless you tie someones hands down you cannot stop them doing what they are going to do.

Most reaction has been on my side and they think that I have been treated badly.

Only one person has seen it as a case of me wanting to be centre of attraction and not keeping Mum's welfare as the priority...Caring for Mum and being there daily, twenty three and a half hours shows that she is my priority and even after all that's happened I am still doing that. If I am such a rubbish carer why am I still being allowed to do that?

My complaint is that I have been lied to, stress and worry has been given to Mum's carer and myself. Mum doesn't like how I have been treated and thought that her original carer was in trouble and she keeps saying "She's done nothing wrong!"

I was led to believe it was the carer who was being criticised and it was me all along and the not knowing what is written about me in the official files doesn't help either. I don't see that as me putting myself above Mum's care.

Someone who sees things differently said..."I don't care what they said about me when my Mum was ill as long she was given the best care possible!"

Neither do I if its because I am fighting for the best care and they say I am a pain for that kind of reason but when you are criticised for the reasons I have been and they've tried to cover it up, that's a different matter.

Mum was happy but is actually unhappy now with what has happened and doesn't like the nurse or social worker any longer. And I have not influenced her. And she has told our carer what she thinks of them.

And they said Mum was incapable of making a decision on her care(if you catch her half asleep perhaps not)they did when they called but Mum has had long talks with me about it and known what she's talking about but she may not say much because she doesn't want "bother" and hopes it will just go away.

Friday, December 16, 2011

Its Eating Away At Me...

Its bad enough having a Mum who has serious health problems and also age against her and accepting our time together could be very short but all this with people and departments supposedly with our "Best interests at heart" have added to my stress and worries at a time they shouldn't. I have always done everything expected of me and more and yet I feel as though I am being scrutinised to the point where it is ridiculous.

If a drop of tea gets on a blouse, even so small you'd probably not see it I feel I have to take it off immediately just in case...I can imagine "That" District Nurse finding an excuse to cause further problems. As they never announce when they are coming you are waiting for the knock on the door. Even though I am doing nothing wrong, I feel as though I am...

I have lost my respect and trust in those who are involved in our lives and I do feel as though our lives are no longer our own. I feel no one has been honest and straight forward with me. I'd say us but as I am the main carer they tend to talk with me(at me perhaps is more appropriate)

Other people have to look after their partners or other family members, are they are all being scrutinised as I/we are. Is it because we have carers coming in?

I don't ever remember asking the District Nurses to call, I don't remember asking for a Social worker or carers...they just came out of the woodwork and people used to say don't turn down help if it is offered to you, I have and I seem to be getting shafted.

I think those who call in the future will find me less talkative and they will get the most basic of answers.

And another thing...These services say they work with you/as a team but I also realise more than ever even if you say "No" to something they want to do, they will do it anyhow so your wishes are largely ignored and therefore you don't have much say in what happens.

I Have Had It Confirmed From A Reliable Source...

There was never ever a complaint against the care company and/or the carer as I was led to believe and my carer believed...

The complaint was/is about me and my care(or lack of)so all the guff I have been told and "How well I am doing etc..." is lies.

And I now know that the care company has been quite fourthright regarding refuting the criticism of their care of Mum and basically told Social Services "Where to go" and now it would appear that I am on my own with a black mark against my name and no idea what has been written about me.

I have not therefore even had the right to have my views put alongside what is their official files and on the quiet from my sources the opinion of social services and how they go about things isn't very high.

So at the risk of getting in the Social Services bad books I think that I must take this further and yet I keep holding back for the fear of all the stories you hear about how if you upset them you'll pay for it in the future.

Thursday, December 15, 2011

I Don't Know How I Feel...

In some ways better than I did but I still feel that I have been lied to. I was definitely told that they were unhappy with the care Mum was receiving so naturally that sounds like criticism of the carer we have had. How can it sound like anything else. If you find out that someone has phoned the care company to complain, what does that sound like? How can you take it any other way?

It would appear that we are still having to accept an extra three days per week to our care package so we'll have someone 7 days a week(not 4 days as present)

Here's the twist though...we still have the carer that they were seemingly having problems with and now it appears that the complaint that went into the company's office was not aimed our carer specifically(but you still wonder if that is the case who the complaint was aimed at)So I am still suspicious...perhaps that's my nature.

So reluctantly we have accepted the extra few days of care...so they have got their way.

But now this raises other issues, the way I was told about the situation they did say the care was below par...so if our carer is still ok to do the caring of Mum she must have been doing it right in the first place so then is the problem actually a criticism of me? And they are telling white lies by making it sound as though its someone else?

I still look after Mum approx twenty three and half hours, seven days a week. And I think I do one hell of a job. I keep on top of the housework(The house will never be a palace and the furniture/carpets have seen better days but its clean)and hey we're not likely to entertain so why worry, see to our meals and general care of Mum and in many cases I am doing what the carer is being paid to do. And not being paid...

If we eventually get allowed some extra cash it will be eaten up by extra costs for extra care and perhaps the need to keep the heating and lighting on more. And other things that are unexpected.

Whatever the reason for the change of the care plan and whoever they blame, why go about things indirectly...why not just come out and say what is bothering them and give me or the carer the chance to defend ourselves? They gave us stress and worry that we don't need and should not have at these difficult times.

Our carer says that she knows my Mum is well looked after and I am doing a sterling job but as a carer if she felt I wasn't looking after Mum she would say so to her boss and would be expected to even if just to cover herself.

If someone called unexpectedly just before or after something has to be done you might be criticised unfairly. I've had a knock at the door as I am in the middle of doing a task for Mum.

Also you are criticised for silly reasons like "Why don't you have a flowery counterpane on your bed?" and "You only have a sheet covering you." If you are warm and happy, and you only want a sheet over you why make a big thing of it...

A sheet makes it easier to get at Mum if you need to clean her numerous times say overnight or you perhaps are laying on a bed rather than in a bed perhaps all you need is a light sheet as our carer said a counterpane on someone so slight in build as Mum she may find it too heavy.

Equally, who would wear a skirt if you were in bed? Mum will wear a skirt if she's sitting, laying on a bed or moving around the house but its easier to change her if you don't have to keep removing a skirt all the time and it can save the garment possibly getting dirty and needing being washed earlier than it needs to be...

Now this may seem strange to some, I'm sorry if it does but in recent months I have found that I am warm enough not actually being in my bed but appreciate/prefer laying on the bed. I like the freedom of movement.

They said if Mum has a bath with a carer it gives me time to have breakfast and put my feet up...I haven't had a sit down breakfast for over 30 years...I eat if and when I am hungry...If I fancy a bowl of porridge or cereal I grab it when I feel I want to.

I don't think we are peculiar but maybe we don't everything as everyone else does or we're expected to and I'm not going to be forced to change my way of going on to suit someone else's view of how we should be.

So I think though I'll accept things for now...I will be taking up how the situation has been handled and how it did not help keep us on a better footing than we could've. I hate people who are not direct with you.

All the points that were put to me I could knock for six but I could've said more if I'd been having a one to one with the Social Worker. And I realise because of the extra speed the extra visits by a carer have been arranged it was already a done deal. As they left my home after most offices are closed, it could not have been done as quickly.

I did talk to the care company and they said the only way to proceed if we felt that we have to is talk to the Social worker again or go over her head to her boss. But we do have rights and can speak out if we want to. I will certainly talk to the Social Worker again.

BTW I wonder what they'd make of this...for whatever the reason Mum is warm but is laying on the bed at present without any bedclothes on her, they wouldn't like it!

The only two things I know of which the District Nurse appeared to blame the carer for Mum's hair being untidy(If you are having a sleep I don't think that's to be unexpected and Mum/the carer and myself always tidy her up)and Mum's hands being dirty.

I think I had changed Mum after the carer had been so she was waiting for something to be replaced, if the District Nurse had called 10 minutes earlier/later all would have been well. I think she has been very harsh. I think she may've mentioned Mum had no skirt on...who sleeps in a skirt? And as she wears those Tena type pants its easier for Mum and me to get to them if you don't have to start removing other clothes...

She does wear clothes if she is out of bed or downstairs.

I think that the District Nurse jumped the gun...

So we assume that we are going to get someone else but that has not been said yet and we've made it clear we're not happy.

I think if Mum had been asked "Does the carer wash You?"

"Does the carer clean you?" etc...

Mum would have replied yes and no and added comments but I think the way Mum was asked Mum probably just said that she was happy with the care she was getting and that probably wasn't as detailed an answer that they wanted to hear...

But we know that supposedly they did not complain about the carer but if you are criticising the care being given, isn't that exactly what you are doing? It does not add up.

Well, Here We Are At This Early Hour...

and what I should be thinking about is Mum. Instead I am thinking about what happened yesterday and what will happen next. The District Nurse service and Social Worker will say they are only wanting the best for Mum too and that is why they are doing what they are.

But I am coping fine and not stressed and am ready to ask for extra help if I/we feel we need it and when Mum's health fails(If she lives long enough for that to be an issue)

For now we are doing great! Considering the difficult situation we find ourselves. Knowing even if it is a slow process things will get worse.

Unless we are at an end stage(and chances are we'd be using charity nurses that would do the work for free/donations and would stay with Mum overnight etc...in our home)the majority of work is still down to the main carer which is me.

Whether a carer is brought in for 20 minutes/60 minutes and daily instead of alternate days all that will do is add more to the cost our care and as I have said previously a carer could wash and clean mum and as they walk out the door I could be doing the very task they have just done so what advantage have we gained? It wouldn't make any difference if we had more than one visit daily.

I have discussed this(giving more examples of what was cited for the reason for the District Nurse initially making the complaints)and the Social Worker being called in and with friends. OK, I haven't put them on my blog, I cannot see any point but we all feel that even if the intention is correct it all seems a bit strange. And has been handled badly.

I am still unhappy that I was not see alone by the Social Worker and I was press ganged or disadvantaged by having both turn up together showing a united front.

I may get into some trouble but I really am tempted to phone the care company and tell them what is happening is nothing to do with us and we were happy with the care we were getting and we are as unhappy as I am sure that they are with what has happened and I don't want to see someone doing their job correctly having a black mark on their career but when you are dealing with some departments connected to the Government you worry what pressure/power they have and how much control you have over your own lives especially when you probably have to face the same people after kicking up a fuss and saying you are unhappy.

They told me that we are all working as a team for the benefit of Mum but it was obvious that I was being ignored by these officials and even though I was still saying "No" to the changes and what they are planning(and Mum felt the same when I told her)they are going ahead regardless.

I actually feel(but I don't I could actually do this)like telling them all leave us alone and stop them being involved but they'd take no notice and would probably use some legal procedure against me.

Its too late for this week and being near Christmas doesn't help but I am even thinking(though I don't know what they could do)of askingfor help from the Citizen's Advice Beaureux and see if they could offer any guidelines we should follow up.

Wednesday, December 14, 2011

Tell Tale...

On the whole everything is going well with Mum and she is quite bright...

My problem is actually with the people who are supposedly watching over Mum's care...

On Monday I mentioned that I was having to do some housework as I needed to look for a disc of software for when the computer repairman was going to call in the afternoon to install something and finish off some tasks.

And I kept getting interrupted by callers such as the District Nurse. And if you are doing one task...you cannot do another. I was up to my eyes in it!

She asked some very strange questions and made some comments that seemed general chit chat, she hoped I would not think anything of them. But I am very astute.

After she went away, within a short time "Our" Social Worker phoned saying she'd like to see me later in the week(just happened to be thinking of us and hadn't seen us for a number of weeks)but by certain things she said, she had obviously been talking to the District Nurse.

Then, yesterday we had a call from another person who works in another department and she just happened to decide to call the same week by chance. And again certain things said triggered my mind and I realise that it is obvious this person had been talking to the District Nurse too.

And the one thing that seems to be driving this are questions about my care of Mum(though they are careful how they say it)you know they'll start of by saying "You are coping very well but do you not think that..." and the District Nurse seemed to be doing a lot of questioning about the service our carers are giving Mum when they call.

We have no complaints about the care(for what it is)and Mum even gets a bit tired having someone call at all even though she likes our carer. If Mum becomes very ill or I feel unable to cope I'll ask for extra help but to be honest we could actually manage without the visits we have already. I was talked into it to some extent.

I realise that we are being talked about and you do wonder what is being said about you.

I am not supposed to know but I also realise that the same District Nurse has phoned into the office of the company that the carer works for raising concerns about the care Mum gets and I'd already said to her we were happy and that our carer does more than she should and stays longer than scheduled. So I am bit annoyed to discover this has happened without me being told directly and first.

In some ways its good that all the departments are talking with each other and working as a team but in another way they are causing un-necessary trouble/ill feeling.

I've explained in many ways Mum's bedroom is like a bedsit where she can sit at the window and watch what's happening outside, she can listen to my mp3 player and enjoy lots of music or read something(Mum has talked of having a TV installed)It is warmer upstairs than downstairs but she does go downstairs if there is something she wishes to watch on TV and sometimes for her meals.

If when she is able she has access to the bathroom, toilet and everything is on one level so being upstairs makes a lot of sense. Its warmer too.

Also, a carer can do what she is meant to but within minutes of leaving I could be doing the same task the carer has just completed. We cannot have a carer or nurse here 24 hours a day and I am the main carer.

The impression is that they want us to have someone here every day but we do not feel it is necessary nor could we afford it at this time. Already for approx 100 minutes a week it costs approx £70 per month.

So if it was increased in frequency, more calls per day/week what is it going to cost? And by saying that I am not saying Mum isn't worth it.

So as I await the Social Worker this afternoon I am debating whether to be blunt and basically have it out with them(whether that make us popular or not)or whether to try and find a way of making my points without getting off on a bad foot about what's happening.

When I needed help from the Social Worker and left a message for her weeks ago regarding possible problems about Mum and myself getting to hospital I heard nothing...where was she then?

I am also sure that she walked past me some weeks ago and deliberately kept her head down and avoided eye contact in the town centre and all she'd have had to do was say "Hello" not get into a conversation but when she comes today she'll be saying that she cannot do enough for us...

The District Nurse service is a valuable service and I am sure that most of the time they do a very good job and are dedicated(They often are used in cases where people need to be cared for "In the Community" and often have serious long term conditions/illnesses so they cannot be kept in hospital etc...but lately they said they were going to call twice a week(but its still only a weekly visit)so even they do not always do what they say that they will.

Also, on the grapevine I heard one topic brought up was Mum having dirty fingernails(I am always looking after her hand care with cream, soap, a scrubbing brush and so on)and so does the carer(even Mum herself)Mum has always looked after her hygiene...but if you just happen to hit a time between cleaning sessions as perhaps the District Nurse may've its wrong to think that's like that all the time. I can wear protective gloves but its quite easy for Mum to accidentally get dirty hands. And again this was the day/time where I was very busy looking for something and waiting for someone to call.

It seems a case of "Jobs Worth" for the sake of it. It's times like this when you start to wish you did not have to use such services and could go private and this is when you see why such departments are disliked or treated suspiciously by the public in general.

Could be an interesting visit...

Update:It was very interesting and to some extent I am very angry. Even if I was to say "Its all for Mum's good and her well being!" I feel as though I have been forced into accepting what "They" want us to do. I also felt as though our carer is being singled out as though she is not doing her job. And both Mum and myself are perfectly happy with what she has done.

The carer washes and cleans Mum. Sometimes a bath, sometimes a blanket bath. She checks Mum over regarding the area that is a problem and applies creams etc...She dresses Mum. I have seen what she does(she has often stayed longer than her official allotted time)But this one District Nurse has felt that she should make a complaint and has caused un-necessary trouble and worry for us and our carer.

I appreciate you hear of some horror stories and of some carers not doing what they should or are paid for but the crazy thing is that other District Nurses have been present when the carer is doing the work. And seemingly they've had nothing to say so must have been ok with what they saw.

I was able to dismiss most of the things that there was concerns about.

The upshot is that we are now being forced to have a carer every day not alternative days and I think that they are trying to stop us having a break over Christmas and the New Year.

I'm not turning down offers of help, I never have, if we need extra help I will ask.

Why now? We've had our carer for almost 3 months...

But here's what I did not like...I thought that I was being seen by the Social Worker on her own.

Instead, the Social Worker and the District Nurse turned up as a team. If I had been the Social Worker I would have listened to what the District Nurse had to say, then myself and make a decision or compromise after what I was told if I thought any action should be taken.

But because they turned up together I could not say all that I might've. And they had one little trick planned...I realised after they had gone...The Social Worker started to talk to Mum asking what the carer does for her and in the meantime the District Nurse occupied me so I could not hear what Mum was saying or that I could not influence what Mum said.

It turns out Mum's fingernails were a little dirty when the District Nurse called(I wasn't supposed to know that and maybe giving that example I have blown my contact and questions may be asked how I knew that)

Well its not worth going into detail why that might be but I know that the carer and myself are always cleaning Mum's hands and also I use some that special liquid you can buy to kill bacteria if you haven't access to water. Perhaps just on that visit it was so if she'd called 15 minutes or earlier it probably would not have been the case.

Mum's hair was untidy...(she'd only been awake for a few minutes)and who has tidy hair if you are in bed asleep? And Mum does comb her hair and keeps it tidy normally.

There are other examples but as I always say no matter how many carers you have or how often they call its what happens the other twenty three and half hours that no one is coming to see to her. You can't have care 24/7 and again with extra care the cost will increase too.

And they are saying Mum isn't capable of making such a decision but I realise that was because Mum had just woken from a little sleep and was still not wide awake and because Mum kept saying she was happy with the care she receives but perhaps did not say "Well, I get washed and dressed on a morning" etc...just that she is very happy with the care she receives and they have ignored what I said.

And as for not understanding...when I went upstairs after they'd been and told Mum what they had agreed and decided, Mum said herself "I don't want it!" and she is worried she is going to loe the carer she has become used to.

I am not sure where we go from here...I think the Social Worker had no right(possibly later it would've been ok)to arrive with someone else who was involved in the situation.

She should have talked to me alone.

I think that the District Nurse even if she felt she had to complain should've talked to me in greater detail first. If she had I don't think the complaint was necessary and could've been avoided.

I don't think it has been handled correctly at all. They said that they are not the "Heavy Squad" They seem pretty Heavy to me even though they keep trying to say its all for Mum's good.

To be fair I realise that you are only hearing one side of the story. You do start to feel as though your life is not your own...I don't lose my temper but did a little the way I was being treated and not being listened to, I don't like to lose my temper, its not me...heaven knows what they said to each other as they drove home and what will go in their reports which we will never see.

To be honest the carer has done much more than the District Nurses have in all the time we've been visited.

The only good thing we've had from the DN's is some pants to save us buying them. Anything else has been given from other departments of the health service not the District Nurses.

And as I say, any care has been done by "The Carer"

Three District Nurses call once in a while and the other two seem to be ok about the care...just this one seems to be a bit over zealous but she's convinced the Social Worker so...

As the carer is doing all that she should I feel bad that she may be taken off our case or have a warning on her working record and I am so tempted to phone the company and tell them we were very happy and it was not us complaining(We'd just filled in a customer satisfaction survey which was all positive...now this...)

Monday, December 12, 2011

I Really Cannot Afford It...

But what can you do?

My desktop PC's are second hand(maybe third or fourth hand)but they do all that I want them to(and I have a decent computer repairman)who helps me and I know that he is genuine.

Sadly, as reliable as the machines are they do fail and finding the money to get them working again can be a problem.

But listening to the radio and using my computers are what keep me sane.

So after a number of years I have had to invest in a new laptop to use when I am downstairs...(My desktop PC's are in my bedroom)

I cannot always listen to programmes when they clash with each other and BBC Radio 4 Extra is only in stereo if you take the satellite feed(On DAB the other main way of hearing it, its in mono)for some programmes it doesn't matter(readings of books or programmes produced before 1967)but drama's, comedies and especially Sci-Fi material really make use of stereo sound.

It has cost a fair bit but I know that he would buy something that's fancy and expensive for the sake of it. So I have a laptop and a wireless mouse to go with it. He found a really good offer and did save some money so it was worth it.

He looked for a bargain and he says this has all that he hoped it would and was the one he had in mind for me. It would seem to have a decent processor inside of it.

Just waiting for it to be set up and returned to me.

The most annoying thing today was I spent 4-5 hours looking for a disc with some software on it which I needed and I could not find it. I said my bedroom was a tip.

Well, at least its tidy now(even if I have some black bin liners to go through to decide what to keep or throw away)

The disc did turn up by the way...it was in the drive of a computer I had not used for a some weeks, if I'd only looked I could've saved all that work.

Then again it made me do something about the situation.

Now being a laptop the speakers aren't brilliant but whilst waiting to watch something on TV I was able to play the André Rieu DVD I wanted Mum to see using the laptop so she has seen it.

Of course I should add I thought my laptop was going to be a letdown after attempting some audio recording as it was distorted and everything sounded as though it was happening in a large empty room but some further fiddling about with hidden settings I think we've got it just about right so I am very relieved.

Sunday, December 11, 2011

You Know, Thinking About Mum's

situation and the refusal of having Chemo Therapy...

And the fact that it looks as though they can control it to some extent even they don't cure it made me look at my own illness. And I'd say I'm in a similar situation.

And it appears that Prednisolone(a steroid drug)and Azathioprine(An immune depressant drug)are a form of chemo. It appears that Azathioprine isn't used any more or rarely as part of officially chemo and is used for other illnesses especially Rheumatoid arthritis.

Azathioprine is given to patients who have had a transplant to avoid organ rejection.

So no wonder I feel aches and pains and tired and my condition varies daily.

That's all I need to know for now...I've never asked what stage I am with my kidney problems and knowing more may just add to the worry(possibly un-necessarily)I am just happy to hear that generally they are happy with how things are and to get away until the next check up. I have had an extra 14 years I may not have had and I hope to have a few more yet.

Saturday, December 10, 2011

The Main Terrestrial TV Channels...

will no doubt pull in large viewing figures especially on Christmas Eve, Christmas Day and Boxing Day and for anyone born in the last 10-20 years will probably say that what is on offer is fantastic entertainment and of course if you follow some of the soaps regular that will be so but I still would like some of the schmaltzy Christmas entertainment specials we used to get when I was growing up and was a young adult.

I know things change but I have looked at what is being served up and there is nothing really that I feel is a must see or I find myself saying "Wow!"

I have a feeling that most of my entertainment will be obtained via BBC Radio networks and if I don't manage to hear everything "Live" I will be recording as much as I can and playing the programmes back during January and February. Or playing music via the PC/mp3 player from my music collection...

Another Positive?

As far as I know Mum has short term memory loss(that's what it's been classed as)so far she only really has trouble if she is tired and at best the only trouble is remembering what time of the day it is and...whether she has had her medication. In the last day or two Mum has even improved regarding both of these things and if made to remember she can often work things out for herself.

No one(so far has suggested that its Alzheimer's)so it could be a slow burner(I hope)and the same is true of Mum's cancer(thank heavens)

This became more clear today as I met in the supermarket an ex neighbours son and his wife/partner who passed away some years ago of something similar to Mum, he said after what I told him it was a good sign that Mum had responded so well to radio therapy and that we have been told it is a slow one.

He said that "They do not mince their words" and if things are looking really bad "They will not hide it and will tell you outright!"

They told his Father everything.

They both said "Don't think about the future and live for today" and be thankful for what appears to be better news than it could've been.

They are also in a similar frame of mind about worrying about "Will they have a roof over their heads" in the future with all the changes coming in but they take it one day at a time.

So again, for now I must remain upbeat.

Friday, December 09, 2011

Today Has Been A Success...

regarding eating.

Ok its small portions but its almost like a day should be(the equivalent of Breakfast, Lunch and Evening meal)

Mum has had porridge. Wholemeal toast with Manuka honey.

Soup containing pea, ham, chicken, leek and potato.

Quiche and baked beans.

Banana flavoured Angel Delight made with semi-skimmed milk.

And various drinks including Complan, Tea, Water and Blueberry fruit juice.

That pleases me.

So if she eats less another day I don't feel so bad.

Sorry Wrong Number...

A fantastic and classic old American Radio drama in the series of the 1940's and 1950's called Suspense starring Agnes Moorehead...

In this day and age unfortunately there are companies and individuals that annoy and terrorise people daily...

Silent calls where no number is left to contact(often dialed out by computer)It may phone hundreds and thousands of people and there are only a handful of people at the call centre picking up on the calls and if you don't pick up you are left wondering who called. If you pick up someone may be trying a scam of some kind.

Thankfully, we get very, very few of these calls and can go for months without being troubled.

Unfortunately, when you are in a situation as I am with someone seriously ill and many people wanting to help or you need to be available for possible phone calls, you have to be there to answer every call. Sometimes you miss a call and you can phone back if they leave a number. Usually, you get the standard lines "We do not have the caller's number" or "The caller with held their number" With either you have an idea if its a private number or a company. But you know at some point they'll probably call again.

Today, I am getting calls that are not ringing long enough to even get to the phone but I did check the last time it called to see if a number was available(there was)

I decided to phone it(I rarely do that)but I am expecting a delivery of some medical items for Mum and I started to think could it be the driver checking I'm in to collect the delivery...I phoned it but every time I hit the fifth digit it kept saying the number has not been recognised.

I phoned our telephone company and they phoned the number for me and they say its coming in from abroad and is not a complete number. So its a funny number! I feel a little better now knowing that, in normal times such calls are a nuisance, at times where you are having serious family problems...it can get annoying.

Unfortunately, what you can do about such practices is somewhat limited but we have done all that we can to protect ourselves.

Thursday, December 08, 2011

Strange Anniversaries...

Today in 2008 Mum went along the landing to the toilet...it was around 8am.

It was a horrible Winter's Day and dark...somehow within minutes Mum was at the bottom of the stairs. Half asleep did she take the wrong direction, stumble, faint, lose her balance? We'll never know.

I managed to get her back to bed but by night we knew she had seriously damaged herself.

She had crushed a vertebrae. Remarkably we got Mum over that and they were happy with her progress.

Almost a year later she rolled out of bed and managed to break her right hip. Again, any other time she probably would've been lucky but...they fixed it and again Mum came home...

And now the big fight of her life, hopefully outliving, fighting, beating or living with cancer(and all the possible treatments and visits to to hospital to see how its progressing)and wondering how long she has with it or if its slow how long before natural causes takes Mum away. This is probably the most worrying of all that has happened so far though we thought the other two were pretty bad.

One thing I started to do from the first incident is leave a light switched on above the landing switched on all night which shines into all the bedrooms if we leave the doors open and I always will leave that light on.

When I am in my own bedroom I usually leave the bedside lamp on all night and I sleep fine.

I've switched the lights off to see what it used to be like and I find it hard to believe that we used to sleep with no lights on. The difference is amazing.

Its a pretty awful day weather wise today here in the North East of England but nowhere as bad as what Scotland has been experiencing.

And as I add a few lines at the end of the day, it is so cold that even with the central heating on the bedroom is cold and we are needing some extra blankets to stay warm...and I'll worry about the cost later, the heating is staying on overnight.

Tuesday, December 06, 2011

A Friend Said Something Today...

And I'd never thought of it this way...

There is terminal cancer and incurable cancer...and though either way both may get you...the difference is that if fortunate incurable still means that they can control it to some extent and you may still be around for quite some time so unless you are told bluntly there is nothing that can be done, there are still more positives than negatives. And yes, they are getting cleverer all the time...

And as an afterthought isn't that the situation I am in with my kidney problems?

I am on strong drugs that control and dampen down my body's immune system to stop it attacking my own kidneys, the drugs I take are very toxic but I am still here and under in other circumstances I suppose I could be seen as having something terminal but what has happened instead is that something incurable for now is being stabilised. It still gives many problems but you live with it.

On the other hand having had a few days to think about it...

So far no one has use the word terminal or inoperable ...I/We have had to come to that conclusion because they say chemo is out and I assume surgery. If Radio Therapy could kill it on its own, perhaps it could be beaten...but if they are not giving(perhaps for all the right reasons)any of the treatments that could halt the disease, they are making the cancer terminal/inoperable by their actions and are allowing it to spread. I am unsure how I feel about that. Especially, when it still seems to only be in the one spot which is accessible and carer's, district nurses and myself can see such an improvement already after the Radio Therapy.

And we have to assume that we were told the truth regarding Mum's scan approx 8 weeks ago which only showed slight fluid on one lung, some osteoporosis and a slight mark on the liver which they hope is not it spreading but could have been there for ages and harmless. The fluid could be drained so that scan seems pretty good to me.

I don't know if they will say Mum should have another scan to see how things are going or just look at how the tumour has reduced and leave it at that. With the option of calling her in every so often to monitor things and perhaps give more radio therapy when it is safe to.

Monday, December 05, 2011

Unless My Budget Is Seriously Curtailed...

I have decided that if I am alone whilst I may go for simple and quick food more often than perhaps I do now...I am going to cook lovely meals for myself and not give up on cooking a Sunday Lunch and similar fare etc...

This Christmas I still plan to cook a traditional Christmas lunch for Mum and myself(Turkey and all the trimmings)and followed by Christmas Pudding...but as last year I am not buying a turkey...nor a turkey saddle...Tesco's and I am sure that other supermarkets will do something similar...they have packets containing eight cooked slices of Turkey with stuffing and I found last year there was enough for a few meals and yes, sandwiches.

And as I do eat smaller portions and don't always stick to rigid meal times, I think with careful planning and the right foods in the fridge/freezer I should hopefully eat well.

And not just give up...

I enjoy cooking which helps but I find myself returning to what I would call comfort/traditional foods and they are perfectly ok for your health.

In many ways when food was on ration during the Great World Wars the British population was probably at its fittest and healthiest.

Saturday, December 03, 2011

There's Always Hope...

There has been an award given to a hospital to look into whether Radio Therapy actually continues to kill cancer cells longer than at first thought(up to twelve weeks)and by letting RT take its course and considering possible surgery that is normally carried out sooner, by waiting it may not have to be so invasive or drastic.

This would be fantastic if proven(but allowing for each case still being judged on its own merit)

I was told Mum's treatment may still be working three weeks after the last session and therefore we could still be seeing the benefit. But if the treatment could still be working up to twelve weeks, that could be even better news...I don't think that this is mentioned the article below...

Hospital Grant

Friday, December 02, 2011

It Just Gets Worse...

Earlier on, as an after thought I put a link on a post saying how the cancer charity Macmillan Nurses were launching a campaign about how people with cancer are likely to be called in for a job assessment and basically asked why they are not working. Also, in an attempt to restrict any help received from welfare.

As I said previously who in their right mind would choose to have cancer and claim benefits? The people to ask for information are the Dr's and Consultants that are treating you.

The new tests don't allow you to submit information. There has to be something wrong with that.

My good friend Span mentioned its only a proposal so probably won't happen..

It has just got worse...

The Latest

I so hope that this story finds some broadcaster willing to give this maximum publicity.

I should add that of course some people will work whilst receiving treatment and find that they are strong enough either emotionally or physically. For some it will keep body and soul together but its being "forced" to attend these interviews and the reports of how the new benefit works in practice and how the assessments are conducted that worries me more.

People who can work, want to work, have to work will be doing so without being called in to an arranged and pressurised interview. Most in the population have a work ethic...so its a fair bet those not working are either too ill, have lost their job because of their illness or are out of work and probably few employers would take someone on with a known life threatening illness. Not forgetting the times you'll miss work because of being ill and/or times you need to attend a clinic or hospital for treatment.

Also, more contact should be made between those who assess you and those do the treatment and know you best, Dr's and consultant's and access to your medical records.

Many horror stories(anecdotal admittedly but too many to ignore)suggest that you are not able to submit information and tests are a question and answer procedure using computer software and boxes are ticked. You are unable to submit information in these assessments but today there is a news story that the Government may look into allowing access to private companies of medical records on the grounds of medical research. So that's alright then, you can only give information when it suits the Government not when you need to.

It won't happen but we should allow your GP to tell it how it is and stuff these private companies getting rich on the back of the ill and vulnerable. I may have said elsewhere some report that was mentioned on the radio news suggested that one in five people who are said to be sick could work and Dr's are getting it wrong when they assess their patients.

No one said how they came up with that statistic. But lets turn it on its head and say that means that four out of five are not fit so most of the time they are getting it right. And recently many who attend assessments and fail and take it to appeal actually get their benefits reinstated so even the private companies are getting it wrong.

Conditions do vary, what I suffer from(using last evening as an example) I was absolutely exhausted and could barely manage to get my body off the bed, I went out like a light and was all aches and pains for at least 12 hours.

Many tests these days have no give or take for changes like this and they are very rigid. They have to realise that one size does not fit all...

Another anecdotal example(not cancer related this time...)

A taxi driver was telling me that his wife is so blind that you virtually have to stand nose to nose for her to recognise you...she also has a condition that can shut down major organs without warning and is under a top consultant at one of the big hospitals in the area...she has been summoned to one of these assessments.