Health Care for Alzheimer Patients

Health Care for Alzheimer Patients
-----------------------------------------------

To Whom It May Concern:

I have no specific complaint about anyone in particular in the Health Care Business, but would like to document the experience I had recently, when my wife Annelies* was hospitalised for a short period of time in the Shellharbour Public Hospital. Maybe it is useful to someone who cares and is interested in making a positive change in our Health Care System.

The first impression I did get when I entered the hospital was very positive, an extraordinary amount of capital investment with an abundance of equipment, probably the most modern in the world, lots of staff, probably highly skilled; undoubtedly one of the most privileged hospitals in the world, duly reflecting the wealth of our country. The staff is very friendly and helpful, making me feel that Annelies is in good hands and well taken care off.

At the time Annelies was discharged from the hospital my impressions of our Health Care System has changed considerably. I did not make any secret out of it, I had numerous discussions with doctors and nurses (sometimes perhaps a bit too emotive in the heat of the moment, offending some of the people involved, but I don’t take anything back). The management of the hospital was very receptive towards my concerns, acknowledged them, apologised and did their part to talk to the staff in an endeavour to improve the care given to the infirm that cannot communicate their concerns.

Whilst I have no doubt that this improved the care in short terms in this hospital, I do not believe it will have any effect on the underlying causes of the problem and hope I can make a contribution with this letter towards better care for all patients, in particular the ones that cannot communicate.

The easiest way for me to get my experience and feelings across, is to put them in chronological order; even though it does get a bit long, I don’t really know how to present them any better.


Monday 6. March 2006

Annelies was admitted to the Shellharbour Public Hospital, from the Blue Haven Nursing Home in Kiama, apparently with a severe aspirational pneumonia. I was not here at the time, but I was able to talk to the emergency doctor by phone who explained to me that she was in a very grave condition and that he does not expect her to live for more than an hour. I had no chance to get a flight back home in time and arrived at the hospital at midnight on the following day.


Tuesday 7. March 2006

We** arrived at the hospital at midnight; Annelies was in the Medical Ward room 29, she was still alive, breathing heavily, was unconscious or deep asleep, wearing what I believe is an oxygen mask. I was a bit relieved because she seemed relatively calm, given her condition, but the position of the mask on her face just bothered me. The mask was far too big for her face, one of the little protrusions that probably supposed to locate the mask on the nose was just poking into her eye, it would have been quite painful if she would have been awake. Since she was laying on her right side the mask was wedged between the pillow and her face and on the left side there was at least a one inch gap between her face and the mask. The nurse that showed us the room was not around, so I tried to adjust the mask as good as I could, but there was just no way I could get the mask to seal against her face, at least I have managed to get it out of her eye, but I was not confident that it would not slip back in again. I don’t know why I did not mention it to the nurse, I was just too tired and stressed and since the nurse did not see anything unusual with the mask, maybe it has to be that way? I don’t know, and I went home.

Wednesday 8. March 2006

We have visited Annelies in room 29 late in the morning. As we entered the room I saw a wound dressing on her right eyebrow, either put on very sloppy in the first place or pulled off half way afterwards, whatever, I could see a deep gash just on the top of her eyebrow. Then I looked back at the position of her mask and just got deeply depressed about the whole thing. The fit of the mask looked just so pathetic to me; I would have sacked anyone on the spot, that fitted this mask. There is just no excuse for such sloppiness, least of all when caring for gravely ill people. I was furious inside but kept my cool.

There were two nurses standing behind me, so I asked them if they could not get a smaller mask to fit her face. The answer was, no, we have only one size of mask. I said that I had great difficulty to believe that and asked them what they are doing with children. They said they don’t know, because there are no children coming in here, they are all in the children’s ward. I asked if it would not be possible to get a mask from the children’s ward, they looked at each other and eventually agreed that this could be done, but it looked very obvious to me that this was outside the scope of their assignment and probably not likely to happen.

At that stage I was even more depressed, kept my cool, pondered for a while, took a few deep breaths and asked them about the gash on top of her eye. The answer was she climbed over the railing and fell out of the bed. I was still very calm and asked if they don’t have any means of restraining her, the answer was, no. Then I asked if they could get something from somewhere else to restrain her, since I believe it is a matter of life and death, she could easily die from such a fall. They just looked at each other again and said they did not know. At this stage a third nurse had joined us, overheard the conversation and said she will check if she can get a restraint. This was a very uplifting moment for me; I said, yes please, her life depends on it, and she promised to try.

Thursday 9. March 2006

I was pleasantly surprised that Annelies had a restraint, she was awake and struggled to get out of bed, so for me the obvious thing to do was to let her get out of bed, and see if she is capable of a little walk. The nurse has approved of it, Mei grabbed the intravenous drip and I grabbed Annelies so we walked up and down the hall for quite a while, I put her back to bed, sang her a lullaby and she fell into a deep sleep. We repeated the same procedure in the afternoon and I felt quite positive and hopeful that I may get her out of this crazy place alive after all.

Friday 10. March 2006

Annelies was moved into room 24. I did notice that the restraint was no longer there and asked the nurse about it. She said this room is on 24 hour observation and we watch her all the time. I said, I hope so, in room 29 she could have nearly killed herself climbing over such a high rail and falling onto a concrete floor with a thin carpet. Yes I know she giggled, I did not know that we have a climber here. For her it was all very funny, climbers come quite often. There was no regret, no sympathy, no nothing, just a normal everyday event and quite funny how they manage to climb over such a high rail. I looked away, said nothing and was just devastated at such a perverse attitude from a person that is supposed to care for a severely impaired patient. In my opinion she should have been charged with negligence and jailed. At this stage I was just dumbfounded, I did not know what to do, I just had an urge to get Annelies out of this place.

Saturday 11. March 2006

Annelies has not been fed up to now, so today the speech therapist has approved to feed her thick fluids; the notice board over her bed has been changed accordingly. So when I arrived and I saw a carton of thick fruit juice on her side table, I was delighted, asked the nurse if I could feed it to her, she agreed and I immediately fed her the whole lot; she ate it like a hungry wolf and her face reflected contentment and joy. I was very pleased; after eating we took her for a long walk again and successfully sang her to sleep afterwards. I was very happy and confident that we will get her out of this place very soon.


Sunday 12. March 2006

The noticed board was changed again indicating that she was not allowed to be fed at all. I was puzzled and asked why? The nurse said that apparently they tried to feed her and she nearly choked on it, so the speech therapist decided that it is not safe to feed her. I obviously was very disappointed and asked if I could talk to a doctor. I was informed that the doctor wants to see me anyway and that I should make an appointment to see her with all family members present. An appointment for that meeting was then arranged for Tuesday 14 in the afternoon.

Monday 13. March 2006

Annelies looked very weak, she was not able to go for a walk, I felt very helpless, of course she would be weak after one week without food, but there is nothing I could do, but looking at her, I could not even sing her to sleep, she just had an empty stare and did not close her eyes. I was very downhearted and anxious to talk to a doctor, but obviously I had to wait until the next day.

Tuesday 14. March 2006

My son and I have met with the doctor who explained the situation and basically offered us two options, either we let her starve to death, or insert a “stint tube” into her stomach. It was a very difficult decision for me to make; the only two things Annelies has left in her life, things that she enjoyed are eating and walking, if we take that away from her I would prefer to kill her. This option of course was not offered to us. I felt very guilty, if we would have stayed in her native Switzerland, we could have chosen death over an extended period of pain. I did discuss this with Annelies many times before, for as long as her brain was still able to reason, and I promised her to take her back to Switzerland to let her die in dignity and without pain. Now it is too late, we can no longer transport her in a plane; it seems that we are stuck with the inevitable. With a lot of trepidation I did decide to sign the authority to proceed with the operation, to insert a “stint tube” into her stomach, consoling myself that this is the only option I have, and with the fact that my son also supported it.

Wednesday 15. March 2006

Annelies looked weaker again, just staring into mid air, definitely not in a position to go for a short walk. I cannot get my mind off that “stint tube”; my son called and told me that he had a conversation with the doctor in Wollongong Hospital describing the nature and the risks of this operation, which disturbed me even more.

Thursday 16. March 2006

Annelies has been transferred to room 28, I did not ask why, probably she was so weak now that she does not require 24 hour observation anymore. She was connected to a drip feed that was going into her nose, and she was just hopelessly laying there. I heard some faint dripping noise as I was sitting there, not knowing why I should be here in the first place, Annelies does not know if I am here or not. Eventually I did get a bit more curious about the nature of the dripping noise and walked around the bed to check how these drip feeds work, only to find a large paddle of drip food on the floor. The nurse’s first reaction was that Annelies must have pulled it out, but she quickly corrected herself as the hose was disconnected on the other end, on the frame side that Annelies could not possibly reach, the hose has never been connected from the start.

This incident more so encouraged me to try to find an alternative to the “stint tube”, I pride myself to always finding solutions where no one else can. I heard of a doctor that assists suicides in the Northern Territory, or maybe there is still a way to get here back to Switzerland, or why should I not try to feed her again. The doctor tells me that she cannot be fed, why should that be true? why should the doctor know? did they try? would they know how to try?, from the experience I have gained so far in this hospital the answer to all these questions must be a definite “no”.

Friday 17. March 2006

I have entered room 28, Annelies was alone and to my surprise I see a food tray in front of her, both of her hands were in the food, food splattered all over her face hands and chest, while she was trying to stuff food into her mouth. When I saw that, I really started to get furious, what incredible negligence, incompetence and stupidity could let anyone do that? This was the reason she was admitted to this horrible place in the first place, with only one hour to live, and now the bastards want to complete the job and finish her off. I cannot recall what I said to the nurses at that time, I am sure it was not very friendly, but what ever it was I don’t take anything back.

One thing I knew, that from here on I will be in charge of feeding. I have asked the nurse of the feeding times, told her that I will be here at every feeding hour, every day, and that no one except me will be allowed to give her any food whatsoever. I don’t know why feeding through the mouth was approved again at that time, or if it was, and for what reasons. But no matter what, I decided to feed her from here on, no matter where or how, I will never ever expose Annelies to this incompetent, negligent and careless mob again. It was Friday afternoon and obviously no doctor around, but I was determined to withdraw my consent for the “stint tube” operation, determined not to allow these bastards to torture my wife to death.

Saturday 18. March 2006

I decided to take annual leave until further notice and feed Annelies three times per day. I started this morning for breakfast at 7:30, feeding was a bit slow in the beginning, but I had no problem feeding her the whole portion, there was no coughing or swallowing problem at all. I came back at lunch time a bit early, there were two nurses in her room as I entered and I saw Annelies chewing heavily. I asked one nurse what they gave her to eat, she said – nothing. I asked if she can’t see that she is chewing, she said yes, don’t worry, that’s what she does all the time, just chewing on her teeth. The big difference between nurses and me is that - I do worry, so I opened her mouth and found a bloodied cotton ball in her mouth, just ideally designed to choke her to death, the thought that this was done on purpose went through my mind.

Again I did express my feelings at the time in no uncertain terms and hopefully have offended someone, that would be good, but maybe they have such a lack of scruple that they are not even offended? The thought went through my mind to take Annelies home with me, but she was still connected to an intravenous tube, a feeding tube and looked very weak, so I chickened out, and hoped that there may still be away to keep her alive inside this horrible place, but my confidence was fading away rapidly, although I was assured by a nurse that this will never happen again.

Sunday 19. March 2006

We entered room 28 before breakfast; Annelies was sitting upright and chewing again. A nurse was administering some drugs through the feed tube, while I was pulling another bloodied cotton ball out of Anneliese’s mouth. The nurse was quite embarrassed, and on the receiving end of my barrage that followed; but she kept her cool and actually took a very positive step. She wrote a notice in felt pen to the extent that loose objects, in particular cotton balls should not be left near the patient, and stuck it on top of the bed.

I was very taken by this positive action, when I thought there is no hope left to find anyone in this place that cares, I was proven wrong. She should be proud of her action, her hand written note is now in print and a laminated copy hangs on top of Anneliese’s bed in the Blue Haven Nursing home. This nurse is the author of a life saving document, she took the initiative without being told, it was not her job, I was dumbfounded why such people do exist in this hospital, she simply does not fit in.

Annelies is eating now very well, she has never coughed or choked since I had started feeding her, she is obviously very hungry after her ordeal and you can see the gratitude in her face when you feed her.

It is now very clear to me that there is nothing wrong with her eating habit, it is not different than it was four years ago. But feeding her does take a little patience and that is obviously too much for the hospital staff, so consequently the rule is, if a patient can’t feed herself she will get a “stint tube”, this is much more profitable for the hospital, the public pays for the operation and the hospital does not have to make nurses available to feed her (what a clever idea).

A discussion later on with the ward manager actually confirmed this; he told me in no uncertain terms that he cannot make the staff available to hand feed a patient. He did ask me how long it takes me to feed her; I told him that initially I did require 45 minutes to feed her but managed to reduce it now to only 30 minutes. The manager was adamant that he cannot make 30 minutes available to feed a patient; he does not have the staff available to do so. This is the same manager that told me a few minutes earlier that this is the best hospital around the place, specializing in all medical conditions, including Alzheimer patients.

Monday 20. March 2006

In spite of the warning sign on top of Anneliese’s bed I found another cotton ball, this time on her lap, at least it was not in her mouth as yet, because she slept when I entered the room early in the morning. Annelies looked already a lot stronger, eats without any delay and walks readily by herself. We took her for a walk after each meal, since I started feeding her. My highest priority now was to get hold of a doctor, it is now Monday, and the first opportunity for me to see a doctor to withdraw my consent for the “stint tube” operation, I was not taking any chances leaving her bedside, until I have confirmation that the operation was cancelled.

When the doctor arrived I was pleasantly surprised, contrary to the ward manager, she introduced herself with a friendly smile and a handshake. I felt reassured when she left the room, that she will ensure that the operation will not go ahead.

Tuesday 21. March 2006

I found another cotton ball in her bed in spite of the warning sign. With another cotton ball that I found later on, there were a total of six. That is six opportunities to choke her to death. I did get so used to it that it did not even upset me anymore. A children’s toy manufacturer would have probably been taken out of business by now after six offences, infringing into basic safety standards, but inside a hospital it does not really matter, people die there anyway, the cause of death would have just been noted as aspirational pneumonia and no one would ever have known the difference.

I was advised that Anneliese’s feeding tube in her nose will probably be removed tomorrow and that she can be discharged soon afterwards. I was happy about it, there was no need for that tube anyway since I started feeding her, but I am obviously not qualified to judge that.

Wednesday 22. March 2006

When I arrived early in the morning, the feeding tube in her nose was missing. I was a bit surprised that some one would have taken it out during the night, since I left her late in the evening the day before. A nurse later told me that Annelies had pulled it out by herself during the night. I was not happy about the fact that no one saw it, since room 28 is directly in front of the nursing station. I don’t know if she could hurt herself doing so, but it did not seem to be an issue to any one, “it happens all the time that they pull it out”, a tube that is probably half a meter long.

At lunch time, the ward manager came to see me, he was aware that I was not happy about a number of things that happened during Anneliese’s stay in the hospital and I gave him a brief of all the events that bothered me. There was no disagreement, he seemed to be aware of most of it, acknowledged them and apologised for it.

There were however two things during the conversation that disturbed me greatly. Firstly he asked me how long it takes me to feed Annelies, I told him that I started with 45 minutes on Saturday and don’t need any more than 30 minutes now per meal. He told me bluntly that there is no way he can make the staff available to do that. Secondly, I told him that the food is not always prepared properly, even though it is purpose made for and addressed to one patient, by the time the food arrives, the mashed potato ball, for example, could be too hard for her to swallow and may endanger her life. His eyes lit up in a triumphant smile, (finally he found a point that he is not responsible for), in his words: “there is nothing I can do; I am not in charge of the kitchen”. In my opinion an inexcusable statement, he would rather let her die than do something about it. I had no trouble in dealing with a hard ball of mash potatoes, I just mixed some water with it and it slid down Anneliese’s throat like a charm. Mixing water with mash potatoes is of course not in the job description of a nurse or the ward manager and therefore the patient must die an agonising and painful death. Making thirty minutes available to feed a patient is probably also not in the job description and thus justifies to torture the patient to death.

With this attitude, he is not qualified to mange a hospital ward, he needs instant dismissal for either of these two statements, but he is lucky, he is a public servant he does not need to know what accountability means, his measure of performance is not the service to his customer, it is some other triviality, maybe how many hours he spends in the office or how much weight he throws around in the ward, I don’t know.

Thursday 23. March 2006

The final day in the hospital has arrived, I was cheerful, the drama seems to be over soon and I can re-direct my efforts to the future, that is to educate the nurses at Blue Haven to ensure Annelies has some little bit of joy left in her life. But my ordeal was not over yet; I did ask a nurse to change Anneliese’s nappy before I take her into the car to drive her home, and offered to help her. The nurse did not flinch a little bit when she exposed Anneliese’s poisoned, scarlet red backside to me, -- it is the acidic food she said, probably a line used by many nurses to hide the disgusting neglect the patient is exposed to; I did not get the feeling that this is something out of the ordinary. I am not a trained nurse, my system is not as hardened as hers, I felt sick when I saw it. I did not say anything; I thought I rather put my effort in to pleading with the nursing home to repair the damage, if it is repairable at all. Anneliese’s backside was as white as it was when she was born, for as long as I looked after her, last time I saw her backside was probably some six month’s ago, when it still looked reasonable, so I do not blame the Blue Haven nurses for this condition, it is more likely that it is entirely the result of her stay in this miserable place, the Shellharbour Public Hospital, a place that I will never forget and wish I would never see again. We drove away triumphantly, like a pair of bank robbers with the loot in the boot, Annelies and Mei on the back seat, very happy and full of hope that we may never have to return.




The question of hospital performance:

I don’t know how the performance of a hospital is measured, but what ever it is now; one thing is certain, it is badly wrong. The performance of a service provider must be measured as a function of customer satisfaction. In this case the customer satisfaction is zero. The incompetence of the management is extraordinary, a manager that cannot afford to hand feed a patient, must be sacked. The solutions are simple and do not require any more resources or money, just good management.

The first requirement in fixing a problem is to be able to measure it. There is nothing in place in this hospital that can measure its miserably pathetic performance. If I would not be here, Annelies would be dead by now, or dieing an agonizing painful death. The hospital would probably be praised for doing everything they possible could do to save her life (probably would have spent a six digit figure in doing so), but regrettably, they did not succeed.

With proper performance measurements and management accountability in the Health Care Industry we would have spent nothing at all, and Annelies would not have to have gone through this agonising painful experience.

A hospital is not different to any other business, whoever has the dominant influence in the success of treating a patient must be rewarded with a significant incentive if the customer is happy and at the same time should suffer a significant disincentive if he is not happy.

If we look at this case, whoever tries to feed Annelies will determine if she can be fed or not, and consequently will be responsible for the decision if she gets a “stint tube” or not. The insertion of a “stint tube” has two effects, firstly the quality of life of the patient is dramatically reduced and secondly it does cost a lot of money, a lot more than hand feeding the patient.

If I would have accepted the advice of the medical experts, Annelies would now be reduced to a vegetable and the public would have wasted a large amount of money in a senseless operation. The person responsible for saving the cost of this operation must be eligible to a financial reward.

As much as a positive incentive is needed to develop a caring culture in the health care industry, there must also be a considerable negative incentive if things go wrong. Whoever makes a wrong assessment resulting in an unnecessary operation, must get a significant financial disincentive like a demotion or a dismissal.

From the experience I have gained during these two weeks it is quite apparent to me that we have a policy in this hospital to torture people to death, just because they cannot feed themselves or because they cannot change their own nappies. This is not only morally totally unacceptable but does not even make economic sense, the cost of hand feeding a patient or more frequent changing of nappies are only a small fraction of the cost to cure a patient from the effects of negligence and preparing them to further torture with operations such as “stint tubes”.

I cannot get the thought out of my mind, that these bastards would have taken all of that last little bit of joy, Annelies can cling onto in her life, away from her with the stroke of a pen, due to their utter pathetic incompetence.




The larger moral question of health care:

Annelies and I have a little grand daughter, the prettiest girl in the world. The knowledge that Alzheimer’s is hereditary, in particular in the female line, is always on my mind; and the knowledge that I could potentially make a difference either to condemn her (and another half a million of Australians) to an equally short life and torturous tragic end as her grandmother went through, or grant her a full and contented life, gives me an incentive to try to make a change.

There is a lot we have to learn before we can cure Alzheimer’s, but we have to start building on the simple facts we know. We know that an embryonic stem cell can grow into all of the 200 and more different cells of the human body, including brain cells, and we also know that embryonic stem cells do not feel any pain, whereas humans do feel pain.

It seems blatantly obvious that we should pursue embryonic stem cell research as a high priority. To understand the reasons why we are not doing this we have to have a look at the make up of the people in our society. There are predominantly two different kinds of people. There are those of us (fortunately the majority in this country) whose reasoning capacity has evolved into the 21st century, capable of understanding and respecting the findings of our scientists, and those whose reasoning capacity seized to evolve in the Middle Ages, like the Taliban, the Ayatollah, George Bush and John Howard.

Anyone capable of appointing a fanatic medieval fundamentalist like Tony Abbott to the ministry of health and aging; and appointing the head master of all paedophile protection clubs, Peter Hollingsworth, as Governor General, must not be allowed to hold public office and in fact he should be charged with inciting racial hatred, for these actions.

Religions are good for those who need them to live a contented life, but we must not allow them to infiltrate their fictitious and mostly evil doctrines into the government of a country. Their reasoning capacity is severely impaired due to their believes in weird fictitious events, and therefore they must not be allowed to influence decisions that affect the rest of us, and people of other religions.

We do not like a regime that murmurs bizarre religious chants, (tailor made by Henry VIII to suit his murderous and sexually perverse life style) prior to a parliament session. We are not proud of our murderous heritage and resent the notion that it is “Un-Australian” not to be proud of it. In fact, we are ashamed of it, ashamed to be the only nation on earth that succeeded in the extermination of a whole human race; we are embarrassed by it where ever we travel on earth, we are not proud of our cultural heritage.

Fortunately we have a democracy, and we can and will vote them out of power sooner or later, my ambition is to make that sooner rather than later, my granddaughter and half a million of other Australians will benefit from it. We will find intelligent leaders, leaders like our Former Premier of NSW, Bob Carr, leaders that will free us from the evil shackles of a religious regime. We are the majority and must be more diligent in researching the background of a candidate before casting our vote. I failed to do so myself in the past, like most of us, busily building careers and families we are not paying enough attention to our democratic responsibilities, I have voted for John Howard and I have regretted it ever since. It bothers me that my careless vote could be responsible for determining the fate of my granddaughter.

When we succeed in converting our hospitals into institutions that care for their patients, institutions that are capable of measuring the care provided to their patients and institutions that are managed economically responsible, than my efforts will have been worthwhile.

When we have a government that does not shackle our efforts, senselessly, to help ourselves finding cures for our diseases, and a government that lets us die in dignity when we choose so, rather than imposing unimaginable pain, just to server the teachings of what is unarguably the most destructive and violent cult ever invented by humans, than my efforts will have been worthwhile.





Edward Wechner




* Annelies suffers from advanced Alzheimer’s since 1999; I have cared for her, on my own, full time for the first four years. On the 1.April 2004 I have admitted her to the Blue Haven Nursing Home in Kiama. During the year 2001 she became very difficult to care for, she was very aggressive and violent; a very testing time for both of us, that I often thought we may not survive it. Nearing the end of 2003 until now, Annelies started to calm down and was really easy to look after, no more bother than a baby, feeding, changing nappies, washing and walking. Her only pleasures in life now are eating walking and looking, she did not speak a single word for at least four years. To look after her now is really easy, there is no skill required, but the ordinary human instinct that permits any mother to bring up a baby without any training.

** We, means me and my second wife Mei, who has accompanied me every minute on every visit. She does not only agree with this description of my experience but emphasises that it is too short and not worded strongly enough to express the experience we went through. She cares for Annelies as if it would be her own child and cannot comprehend that such negligence and evil towards humans could exist in the most privileged country on earth.