Will my mum come back to me?

I have been in hell this week.The oxymoron of pure hell.

My mum has continued to be demented with the inability to find words to speak, uttering gibberish, being discoordinated, weak, and agitated since last week.

As you know, she came off the pain patches last Thursday night after being rendered mentally and physically incapable.

The doctors and nurses have been desperately searching for reasons for the change in her condition... Well, reasons that don't blame the opiate drugs, of course. The main idea has been that she is dehydrated ! They have tried hard to fix, and have endorsed, this idea. The fact that she has a furry tongue tells them that she is dehydrated because a person can get candida when dehydrated! Of course, this notion excludes the fact that she drinks a lot of fluids and has had a furry tongue for some years. Hmmmmmmmm....... But they have to exclude the truth because then they'd have to look at the drug being to blame.

The other brilliant idea to explain what the drugs did to my mum has been that the cancer has affected her brain. Okay, right, let's have a laugh at this one as well by way of observing, following their logic, that the cancer has to have invaded her brain and taken away her faculties at exactly the same time as she took the first opiate!!!!Why? because she was absolutely mentally acute before she took the drug. Are you falling off your chair and splitting your sides? Well, I would be too if it weren't so serious.But it's okay, because to laugh is the way to survive and I want you to read this, laugh, learn and protect yourselves.

Of course, the first resort of a doctor in this kind of situation is to try to get out of his guilt, absolve the drug, and most doctors will do this at the expense of their patients. Human nature at work.

Okay, so what's the update? Look, I have to confess, I lost faith in the fact that my observations, being true and accurate, would result in my mum regaining her faculties, but slowly, last weekend her speech became less slurred, less forced and desperate,like a person straining out their last hopeless voice. I never believed the nurses, I was not that delusional even if I was despairing. In fact, the more they tried to prove their ridiculous ideas, the more I knew that they were just looking for something to disavail themselves of guilt, but it was hard to hang onto reality because I was afraid that my mum was dying and she would never regain her faculties. This state of mind is what rote practitioners give you with their negativity, their misguided diagnoses and their one track minds.

So where are we at? Today is Wednesday. I have had a hell of a few days... but slowly my mum began to make more sense today, answer me. Her walking is not quite so insane as it was. The agitation is less. .....

When I wrote before I didn't mention agitation did I? But last weekend I telephoned the hospice to ask if her symptoms could be agitation due to withdrawal from the drugs. "No", they said, because when you take opiates for pain they get taken up by the pain and don't become addictive. Oh, really?come on! So once again it can't be the drug and I am meant to believe them and NOT what I am observing with my own eyes? Madness. Look, let's get a grip: my mum has been clueless for a week, retarded, and she has suffered acute withdrawal after only a short time on these horrendous drugs. Fact. Full stop.

Tonight, at long last, she is regaining some of her senses. She spooned her oatibix herself with strength and good motor control and she has answered me coherently.It's a bit variable yet, but we'll see.

What is the wider lesson to learn from this? Well, never give up, for a start. Always trust your own observations and know that people you see in a bad state in the hospice or hospital may well be incoherent and incapable BECAUSE of the medication they are on. But nobody realises this fact. Only someone who knows how the person is usually knows that it is the drug changing the person, so please fight like hell for the ones you love.

The Chemical Cosh in Elderly Care...

Since being given a drug called oramorph for lower back pain my mother has lost her faculties. She took one dose, then co-codamol was tried with the same result and finally pain patches, all opiate based medication. Hmmmmmmmmmmmm. So we wondered why old people are sleeping all the time in old folks homes? We thought that it was because they were old and that is the way old people are? Did we? Are we that stupid? What a joke. Incidentally, my mum had pain not related to the cancer and was rendered so insensible by the drugs that she fell over and bruised her breast bone and needed PAIN KILLERS for it.

After taking these drugs my mum has lost her faculties, her speech became extremely impaired and she became discoordinated.I thought she had had a stroke, it was that bad. Of course the medics say that it's the cancer getting worse, but then they always say these things to get the drugs off the hook. I know. I saw what happened. She is usually a very mentally acute person and was so the whole day before she began the oramorph.The oramorph changed that. On these coshes my poor mum was desperate because she couldn't wake up, frantic, frightened.It rendered her senseless.

Then I started to make enquiries.... The hospice are quite happy with the patient being turned into a vegetable as long as the pain is stopped! They don't offer any other pain relief like acupuncture or hypnosis ! I wonder why.

Hold on, I am coming back shortly. I will tell you IF my mum recovers her faculties or not. She is now off the medication.

Okay, a mini update for you: my mum has been off the medication since last Thursday. Her speech is a little better and I think her walking is too. The G.P. has said that it can take a week for the medication to leave the body, so a few more days yet before I find out the terrible truth: is my mum coming back to me with her usual acuity?

N.B. Carers please look at this site: www.carersconnectint.com

And to Hell with the Carer.

And to hell with the Carer.

I have a problem with chemical perfume. Shower gel, hair spray, washing powder perfume. Well, I'm not the only one! Trouble is, the nurses who come in to see my mother every day are drenched in it. I have tried to reason with them,but these products seem to be something that we all have to tolerate, if we don't, it infringes their human rights! For me though, these chemicals effect me badly, giving me neurological symptoms. On one occasion, however, the intensity of the smell affected my mum's breathing and gave her a headache. I phoned the hospital and left a pretty irate message. I also telephoned the Royal College of Nurses to ask about policy or guidelines around this issue. They thought that the nurses should respect me in my home, but said that there have no authority to stop them wearing this stuff. BUT IT'S CHEMICALS. It's funny, the contradiction that nurses who are meant to look after peoples' health are actually wearing multiple products that contain chemicals, is to me, beyond belief.

Anyhow, so they are obdurate... and I have had many altercations with them. The fact that they are making people ill escapes them. So how on earth did it become acceptable for these products to be on the market? In my view they as much of a problem as cigarette smoke and, okay, so there are people like me who are very sensitive to products with strong smells, but I wonder about the long term health impact on even healthy people. The manufacturers are completely unregulated. No one knows whether these chemicals damage everyone and yet folks actually buy things like air fresheners to "freshen" their homes with a "nice smell" that is actually a potentially harmful chemical.If you are breathing it in, you are swallowing it as well.

Back to me..So if these nurses make me ill every day with their selfish use of these products, what happens to me as a carer? Well, to hell with me, is the attitude. And to hell with my mum. It is truly extraordinary that they would rather have my mum in a hospice ( and yes, they threatened that), a heart breaking scenario for her, than just simply refraining from spraying their hair or whatever they do. Doesn't it seem extraordinary that a matter of health is subordinate to the right of nurses to wear harmful personal products? Wouldn't you think that health would come first?

Please get back if you have problems to relay as a carer in general or if you have chemical sensitivity.

Very Best Wishes to you..........

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http://www.ourlittleplace.com/chemicals.html
http://www.ourlittleplace.com/fragfree.html

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Elderly abuse in the NHS, 3

I didn't know whether to tell my mum that she had been excluded from a test to determine eligibility for a drug. Should she know that her autonomy had been walked all over? Would it make her give up on her life? In the end I told her yesterday. I thought it might give her back her fighting spirit.

She didn't know that there had been a test that she had been denied.Inspite of going to the meeting (alone) with the oncologist where the "whole picture" was discussed, she had no idea that there was a drug she might have had to hold back the cancer. Doesn't this prove the point? That no one, let alone someone elderly, can assimilate, or question, information of this gravity in an appointment when alone, and that it is imperative not to go to these appointments unsupported. But,as we know, the appointment wasn't to discuss all her options, it was to persuade her to do what the doctor wanted her to do. I suppose it is more accurate to say "what the whole clinical team wanted for her" since all the staff were involved in taking away not only her autonomy, but her right to information as well.

The whole clinical team? So here we have the discrepancy of the team deciding to opt my mum out of treatment and the S.H.O. telling me that she had/ or would have the test. Strange. The S.H.O. was not telling the truth.... and yet the SHO would have been part of the team. So at what point did they decide to make decisions FOR my mum and exclude tests from her secretly? The answer is I don't know. Why should we be told, we are only the relative and the patient with no rights at all.

The new consultant is reviewing my mum's medical notes and will come to a decision. I fancy that the decision will be the same one that was made before, don't you? Doctors stick together. It is almost impossible to get a truly honest second opinion because doctors support each other.

Look, I'm coming back when I find out yet another forgone conclusion. I will let you know.

Meanwhile, please never trust an SHO., it could be a matter of life or death. Speak ONLY to the Consultant and if you can, get copies of the notes every week. If you have the notes in your possession they cannot come back and alter the notes should something go wrong with your loved ones treatment.

Best to all........

Royal United Hospital, Bath, named and shamed..

Thursday, 15th September.
I put in my complaint to the hospital last week. That stirred it up. The cancer manager phoned me yesterday with assurances that they always make the patient part of the decision making process, that my mum hasn't been shut out of treatment because of money and they do care ! I also spoke to a Lung Nurse Specialist yesterday. I demanded that they confirm that the test for a cell marker had not been done and that therefore they had never intended to offer my mum treatment (really patient-centred). I suppose I hoped that maybe they had done it, at least DONE the test, and then got my mum on her own to convince her not to have treatment. Hmmmmmm, I'm not sure that that is a lesser evil.
Anyhow, so the nurse specialist actually managed to phone me this morning. What a lovely start to the day. And, yes, it's true, they NEVER did the test. They never intended to offer my lovely old mum a choice as to whether she had treatment because they never did the test for the cell marker. Whoa. Of course, elderly abuse is rife in hospitals and care homes in the U.K., but I thought I was on top of it. Like I said in my previous blog, I thought that having a relative watching and checking whatever they did would prevent my mum being a victim to them. And I have let her down, using all my strength and resources, I have still let her down.

So did I try to chase up this test? Yes, with everything I had, against the barrier of misinformation, elusive staff, personal stress and upset, yes I did try. They sometimes said that it had been done, sometimes that it would be done,that they would let me know. Then the person I spoke to went off for a few days, the S.H.O. changed and I couldn't hunt them down. Of course, simultaneously there were the other issues of my mum's distress, not getting things to eat, forgotten medication, etc., and I couldn't cope with it all.

Anyhow, they are well and truly stitched up. We can have another consultant,isn't that kind of them? The only problem is that the new consultant won't be able to give an independent opinion, they said. Or did I hear that right.

Got to go now... I demanded they do the test, by the way. I wonder if they will oblige? Maybe they'll refuse on the grounds that it's too late now to offer my mum treatment even if there was a cell marker?

Elderly abuse in the N.H.S., Royal United Hospital, Bath.

My mother has recently been diagnosed with lung cancer. Of course, when someone is innocent of self-caused lung cancer, one has to say in one breath, "My mother has recently been diagnosed with lung cancer-but-she-never-smoked-or-went-to-pubs-or-clubs." The reason for this is stigma: it's a dirty illness that carries the stigma of being consequent upon the insane self-indulgence of smoking.

(This blog takes us right back to the issue of the pervasive discrimination against the elderly and doesn't cover the ins and outs of smoking.)


Okay, so what am I up in arms about this time? Well, from the time my mother was admitted to the local hospital with symptoms thought to be a worsening of her heart failure, there have been a catalogue of errors, malpractice events, disrespect and blunderings. Good old N.H.S. !!!!! Just like you see in the media! ....And we really thought that medical abuse of the elderly happened in isolated pockets where there were serious breakdowns of management. Or did we? I, for one, see the exposure of abuse of the vulnerable in recent years in our hospitals and Care Homes as the tip of the iceberg. By the nature of things most cases will be ignored, suppressed and protected by the "group". The fact that SOME are leaking out, tells us that the real number of cases inhabit the system pervasively. Why? Because it is a basic psychological fact that where there are vulnerable people to abuse, abuse will take place. A system of protection can never be robust enough because group dynamics always dictate that any group will protect itself and its members from discovery.

Why "psychological fact"? Well, the need to have dominance over others is part of our biological nature and with some people this need is not civilised,they therefore take their chance to hurt people who are in a vulnerable state. Please see earlier blogs where I explain this in full.

So how did my mother's experience correspond to what we hear in the media? Well, there was the matter of staff not noticing that my mum had trouble swallowing. They sort of knew this as evidenced by her feeling nauseous, but kind of switched off to it. The problem was only addressed when I frightened the hell out of the staff with direct reference to the matter being revealed to the local press! What was my mum eating each day?My mum was having one soup a day. The one meal that menued soup was dinner (6pm), so she had nothing for breakfast or lunch or supper because there was no soup on offer.

And what else? Hmmmmmmmmm......... Well, when she was first admitted around 3.00 a.m. she had severe breathing difficulties requiring a drain to be inserted into her right lung. She was writhing in desperation to get air, an oxygen mask made no difference whatsoever. So they drained the lung, right? Wrong. They left her in hell for more than 7 hours because they could not, ostensibly, put in a drain at night due to there not being necessary support staff. What?you may ask. A city hospital with no support staff at night? !!!!!!!!!! Are we going mad? So what would happen if there was an RTA and the casualty had a collapsed lung? They'd let him die for want of support staff? Or could this be a matter of hierarchy of need? Pardon me for being cynical, but could it be that the plight of an elderly woman, suffering complete hell, was not so urgent or important as an RTA victim, not so conspicuous, not so motivating? Well, I think so. Suffering,and compassion for that suffering, didn't actually amount to much when it came to someone elderly. It's the same old story.

And there's more? Yes, there is so much more.... What about them forgetting to give medication? They didn't do that as well did they?
You've got it! You must have experience of the good old NHS as well! Yes, my mum had to remind them to give her her medication. She's very compos mentis you see and noticed their every error. One day they forgot to give her an injection that is given to prevent patients having a stroke. She was still reminding them at midnight that day. The next day she told them again. They checked in the Notes and found no tick for the injection! What a surprise! I looked at the Notes around lunch time and was told that although there was no tick, they probably had given her the drug !!!! I told them that they had not. Forgetting to give medication was quite routine.

Not another problem? Well,this is the biggest problem so far so please stay with me..... S.H.Os., Junior doctors, are a real problem. They have neither the experience nor the authority to say what they say. Countless times I asked if my mum could have cancer treatment and I was told that she would have a say in whatever treatment she had or didn't have. "Yes", they said, she would have a say in her treatment. She could possibly have a drug to hold back the cancer, and a test for a cell marker to determine if she might be eligible for that drug had been done and they would let us know. The next week I asked for the results of the test and was told it hadn't been done yet. They would test the fluid from her lung to find the marker. Hmmmmmmmmm. So the following week I asked again. Still no test. My mum was then discharged and we were supposed to go for a appointment with the consultant in a few weeks. As it happened my mum was readmitted prior to this appointment because her breathing had worsened again (sticking the lung to the chest wall hadn't worked).

Now for the shocker: The day before the appointment in outpatients, I asked the SHO if my mum would have to go to the outpatient appointment in the morning. She answered that since my mum was now an inpatient, all outpatient appointments would be cancelled automatically. Are you sure? I said. Yes, she said , the consultant would make a visit to her on the ward instead. So the next day I arrived on the ward at lunch time to see my mother JUST IN TIME TO SEE THAT MY MUM HAD JUST RETURNED from her outpatient appointment where she had been taken ALONE without family or friend to be with her. And guess what? The consultant had persuaded her not to have treatment. Fait accompli. They never NEVER intended to do a biopsy to test for a marker and, ALONE, my mum was steered away from treatment. Now, okay, not having treatment may have been the best thing and we may have come to that conclusion ourselves, but she was never going to be allowed to make a decision herself, she was never respected enough as AN ADULT to be allowed to ponder the facts and decide for herself and in the end it was not even thought to be necessary for her to have family backup in her first oncology appointment.I wonder why? And all the misinformation given to me by the SHOs, all the falsehoods, all the false hopes, now became crystal clear as meanderings that were never intended to offer my mum treatment for her cancer. Never. They had never done a biopsy and never intended to do so. She had been opted out of treatment as if she was a non-person, way back.

My advise to you would be to NEVER TRUST AN S.H.O., they are nothing more than children way out of their depth, imparting information that they are unsure of and taking no responsibility for what they say or their actions.

What else do we learn from this experience? Well, we can see that, as in the case of my mum, having a relative observing "the goings on" at the hospital is a sure way of an elderly person being protected. Conversely,it is also transparently obvious that old folks who are away from the protective gaze of relatives are likely to be abused. Certainly, my mother would have been in a very bad state had she not had me to look after her.

So how on earth could we stop this abuse? I think that the public should have a role in this: members of the public should have random access to hospitals and care homes. It's the only way.Please let me know what you think.......
All the Best to you..

www.carersconnectint.com