Editor’s note: This is the story of how symptoms caused by an undiagnosed urinary tract infection (UTI) were mistaken for Alzheimer’s disease, leading to the prescription of the drug Haloperidol – which in turn caused life threatening side effects. It is crucial reading for anyone with elderly friends or relatives.
“Hell”operidol and Back
April 2010 … was a life changing year for us as a family. My dear Grandmother, aged 84 at the time, had many health issues including depression, diabetes, high blood pressure, urinary incontinence, cancer growths and was on a cocktail of drugs prescribed by her doctor. Further, she understandably had many urinary tract infections and was frequently given antibiotics.
However, after Easter that year, everything seemed to change in an instant. My sweet sane Grandma, a kind, loving and gentle soul who would do anything for her family, suddenly took on an unpredictable hostility, rambling and babbling abusively and in this demented state she could not sleep properly and was even unable to attend to her daily care. She became her complete opposite.
She was quickly diagnosed by a psychiatrist to have acute Alzheimer’s disease and dementia. A nurse myself, I wondered, how on earth could Alzheimer’s come on so suddenly? The psychiatrist had mentioned however that one of the medications Gran was on for urinary incontinence, oxybutynin, could have contributed to the severity. She was prescribed yet more medication.
She was very poorly and the prognosis was not good. It was so distressing to see her like this that we had nothing to lose as a family by deciding to care for her at home. To give her some inner peace and happiness we felt we at least should try an alternative solution.
Our first decision was to take her off all drugs. As Gran was not able to manage her food, we had to feed her. Our second decision was to clean up her diet. Amazingly, within two weeks her skin had greatly improved and her head had cleared. She was almost like the Grandma we knew and loved so much. She was eating again on her own and performing personal care independently. We could now have proper conversations with her. We thought it too good to be true!
The psychiatrist, in reassessing her, was equally amazed but said to keep anti-psychotic drugs on hand in case she relapsed. Again, being a nurse and having worked in dementia wards, I found it odd that relapses, in and out of Alzheimer’s could be considered normal. I had been taught that it was a progressive disease, not one from which could oscillate from completely insanity and an inability to manage daily personal care back to completely normality for a few weeks. Was this diagnosis of Alzheimer’s disease completely mistaken?
After a few weeks, Grandma started to decline. Then she became really well. Then she declined again. The same pattern kept evolving. It reached the stage at which my mother found it too difficult to manage and she succumbed to trying the anti-psychotic drug to see if it would help. Unfortunately the only thing this drug did, was help her to sleep a little but her other symptoms worsened. I knew this direction was definitely not the answer. If it had been, then Alzheimer’s would be cured.
From Bad to Worse
August 2010 … Things went from bad to worse. Grandad explained me that when Gran used the bedpan, that her urine contained a thick and grainy substance. I thought that this did not sound good. Could it be a serious urinary tract infection? She was also very constipated.
At this stage Gran had a fall and broke her arm. On admission in hospital a urine sample showed a serious urinary infection (surprise, surprise). This was the first urine testing since her diagnosis in April. Alarm bells rang in my mind. Grandad had explained to me that in her past history she had been very prone to urinary tract infections and had often been on antibiotics.
This possibility had not been ruled out at the first appointment with the psychiatrist. I know that an uncontrolled infection can allow ammonia to accumulate in the body and that it can cause strange mental aberrations, such as a delirium that resembles dementia. To me, it explained why Gran tended to be very sane when on top of the infection but deteriorated when infection was rampant. No wonder the anti-psychotics were not very effective. Maybe the cause of her acute “Alzheimer’s” was a urinary tract infection?
Because Gran had the label “Alzheimer’s patient”, no-one listened to my concerns. To those in the orthodox medical system, the urinary tract infection was a secondary problem.
Now to Haloperidol
Gran had not been tested for resistant strains and many antibiotics had failed. Finally they looked at this but only after they had started administrating another anti-psychotic drug, Haloperidol, to supposedly treat her dementia. Then, when given the correct IV antibiotic, she was almost civil again and wanted to return home. However, because they had given her Haloperidol they assumed this was the reason she was better.
September 2010 … Gran was then put on regular oral Haloperidol and again deteriorated from good to bad. Again I convinced them to take another urine sample and sure enough, again, she had another urinary tract infection (UTI). This time at least they tested the resistant strains and the antibiotics did their job effectively. Grandma became well again! The same old pattern appeared.
At this stage I researched the drug Haloperidol. Some of the side effects that Grandma was experiencing can be caused by this drug: UTIs, sore eyes, light sensitivity, constipation, hallucinations, headaches, sore throat, hot and cold, constant restlessness and weight loss to name a few! It seemed that the drug to treat psychosis actually causes psychosis and also contributed to further UTIs which I believe was her initial misdiagnosed problem. It can also cause pneumonia, heart failure and even sudden death. Continuing my research I uncovered that according to the FDA this drug should not be given to the elderly with dementia related illnesses anyway. It really is intended to treat Torette’s Syndrome and Manic Depression only.
I had to make myself heard. This harmful drug had to be stopped but stopping it was easier said than done. Poor Grandma went CRAZY! The half life of the drug was just awful and we truly witnessed a time that no one should ever have to go through. Because she still needed assistance she was admitted to D6, the dementia wing of the nursing home. Thankfully we managed to get the Haloperidol stopped. The risk she posed to staff – not to mention herself – necessitated putting her on an alternative drug.
December 2010 … Because my dearly loved and loving Grandma was still on too many drugs and not on the best diet, I did not want to give up. I knew the truth behind this awful situation. The same pattern continued with the UTIs but at least they were now continuing proper testing and being given ‘correct’ treatment. However I knew this whole scenario was no long term answer: the very things causing ongoing UTIs were still left firmly in place!
As Gran was definitely not making any headway with these drugs, we managed to gain from her doctor an agreement to have her home, to see how she progressed with an alternative treatment – without drugs – for a short while. The hospital staff admitted she was the worse case they had seen and firmly believed that she would continue to decline and therefore “needed” the anti-psychotic drugs to keep her “stable”.
Gran was released from D6, the dementia wing of the hospital mid December 2010 without any medications. We fed her on good living food for a fortnight. Her mental and physical health improved immensely. We then took her back to the hospital early January 2011, just to see if she remained stable before we made the final decision to bring her home late January.
The Hospital Staff Were Amazed
The staff were amazed at the complete transformation from her crazy behaviour to complete normality, brought about without using any medical drugs! One staff member quoted “Your grandma should not be in this wing as she is completely normal and understands that she is in a mental home”. The only time Gran became agitated was when another UTI was brewing but because of perseverance and correct treatment, this then also alleviated her “delirium”. The trouble is, the ongoing use of antibiotics, depletes the body of many minerals, especially magnesium.
Bombarded with toxins from numerous drugs and with poor food options Gran was very susceptible to these horrid infections. It makes me wonder whether all the people in the dementia wing were UTI cases in the first place? Significantly lowered magnesium levels coupled with poor quality food can lead to ongoing UTIs and the resulting delirium can easily be mistaken for Alzheimer’s disease?
Sadly, to have the label “dementia” and be prescribed incorrect medications such as Haloperidol for these symptoms, can leave such cases with “CRAZINESS”, hallucinations, etc. Fortunately, while Gran was in the nursing home, we managed to get the hospital to stick to the food that we provided for her.
24 January 2011 … This was the day Gran was supposed to come back home but sadly she broke her hip the day before and ended up in the Timaru Hospital awaiting surgery. I thought, oh no, all this hard work getting her free of these problems and now she will be subjected to more drugs, antibiotics and obviously the anaesthetic and surgery, all after all she has been through. This was definitely going to be a tough time for Gran and for all of us, all over again. My strength and peace came from my Faith that good will always come out of bad situations.
9 February 2011 … Gran survived the ordeal and was taken back to the nursing home again for the needed rehabilitation to regain her mobility. She was prescribed aspirin daily and also had a catheter in place. I tried to go with daily garlic instead of aspirin, as this food does the same job but when they discovered that at that stage, that we did not have the power of attorney, they pulled rank and ruled with iron rigidity. I had to let it go. Oddly, although we were unable to give Gran the natural garlic for a further ten days after stopping the aspirin.
It was only a short period of time after being back in the nursing home that Gran started going “crazy” again and doing such things as throwing her false teeth about. Her legs showed marks and were in poor colour. I thought to myself, is she getting another UTI after all the stress she has suffered ?
11 February 2011 … Gran’s doctor removed the catheter and another UTI was confirmed and IM antibiotics were given. This made a noticeable difference yet again to her mood. Really bad blood clots had developed on her legs so her doctor decided to stop the aspirin…
17 February 2011 … Although Gran was now back to behaving “normally” she told me that she was finding it hard to swallow her medications and food. I knew that her doctor had prescribed paracetamol for her hip pain and colloidal silver as a natural antibiotic only as he was amazed at how well she was without drugs. This was also confirmed to me by the nursing staff.
Suspicions Arise
Gran told me at one point that one of her medications was “oily”. I thought this rather odd but inadvertently assumed that she was referring to the colloidal silver. My suspicions were aroused however when Grandad informed me that she was in a “dead” asleep while about to have her tea. I had noticed during this week that Gran was a to some degree “up and down” in her moods.
The head nurse from the nursing home advised me that she felt that deterioration after her hip operation justified re-medication with haloperidol, her assumption being that because this drug was on the PRN (‘as required’) drug chart, that it had been responsible for her improvement in the hospital. I called the nurse at the hospital to check it out and found it was not true.
I discovered that when Gran had been returned to the nursing home, that this head nurse, although acting with technical legality, had taken a completely immoral direction and had regularly given her Haloperidol from the PRN (“as required”) drug area. The doctor, who did not know the background to Gran’s situation, had charted this in the hospital. However, she had informed the nursing staff that I was not to find out about this. It appeared to me that pride was overriding common sense and putting Gran in very great danger so I rang the ward and spelt out their medical oath, to “First Do No Harm”.
18 February 2011 … I rang Gran’s doctor and he, unaware of all this immediately stopped the drug and all other medications, the intention being that Gran would be discharged and under my care from the 28 February to allow the withdrawal process to take place… yet again!
I returned from a weekend in Christchurch on Monday, 21 February … to find just so much had happened in my absence. To recount …
19 – 20 February … Mum had been in to see Gran after I had explained what had transpired and had found her in her room, lying on her bed, very pale, blue in colour around the lips, her legs swollen and mottled and her feet very cold. She was breathing very heavily. Mum was extremely concerned and questioned the nurse as to why a doctor had not as yet seen her. Gran had voiced to Mum, “I love you Di and pass on my love to Dad”.
Mum stated to the nurse, there and then, that the drugs … the Haloperidol … had done this to Gran. She was shocked to see how quickly Gran had gone downhill in just one week, just when she was getting well and was hoping to shortly come home. (This same nurse after many years working at this facility quit her job).
When Grandad went in to see Gran that weekend he was met by her doctor who felt she needed to get to A&E as there was suspicion of pneumonia. Again IV antibiotics and oxygen therapy were administered with good result and Gran was discharged back to the nursing home the next day.
When I checked on what medications had been given, one of the nurses from the nursing home confessed guilt, in not telling me about the Haloperidol that was administered since Gran arrived back from hospital. No one told me or her doctor what they were doing! After Gran’s return from A&E there was a notable change in the attitude of the head charge nurse! The side effects from an overdose of Haloperidol include pneumonia, heart failure and sudden death.
What is amazing was that Gran survived Haloperidol a second time but sadly I also knew that it was not going to be easy to go through the withdrawal process… yet again.
28 February … Gran was finally able to get out of that nursing home and came home to me and complete a further withdrawal process. She was very happy to leave the “mental home”, as she described it. Staff were very meek and mild on our departure and there was no sign of the head nurse.
The closest we were to any apology was when one of the other staff members mentioned that Gran was far better off the drugs and stated that it must be the effect of the garlic …
The next few weeks were very tough going. I felt Gran was almost a junkie. The side effects of her withdrawal were very bad and extremely hard, both on her and those looking after her. We also had to monitor her urine for a further potential UTI every week.
It was not until Grandma was well enough to sign her name that we could access her hospital notes.
I was horrified to find, that on her admission to A&E with pneumonia, they had administered more of the very drug that caused all the trouble … IV Haloperidol x2. The first lot she had not responded well to so they had given her another lot – until her doctor intervened and said no more was to be given, he informing them of what had been happening.
Her notes also mentioned how she was in heart failure and issues with her ECG. This completely coincides with the information from my research, the warnings from the FDA that IV
Haloperidol can cause heart arrhythmias and sudden death. It truly is a miracle Gran is still with us.
Basically, Haloperidol appears to actually make some people psychotic. Then they give even more Haloperidol to cause sedation. This can lead to heart issues and sudden death … especially in the elderly. With regard to this highly toxic drug, there does not appear to be too much information available about detoxifying and surviving for the protection of my dear grandmother!
Gran’s withdrawal symptoms were very bad. They included really bad heart pains, hallucinations, poor sleep, that very on edge feeling, headaches, sore joints, the feeling of insects crawling all over her (cocaine addicts get this – they call it “coke bugs”) and frequent night urination. Amazingly, she was not getting any more UTIs.
6 April 2011 … It has been a whole year since this journey began and I really did wonder how much longer it would be before Gran “got through” all this. With her diet it was a real test to find out what is best for her, after her dreadful experience with Haloperidol. Gran seemed different and I could not figure out what to do. Previously magnesium rich foods were helpful but this time around they did not have the same effect. Lets face it, the IV administration of this awful drug could well lead up paths we did not even know existed. I was kept under pressure finding out more. I was learning a great deal through my dear grandmother.
12 April 2011 … This week Gran went downhill “big time”. She was as mad as a hatter. Poor Mum could not cope any more so Gran came back home to live with me. She did not sleep for two days and nights and was constantly calling out. She had diarrhoea, profuse sweating and she felt she was on fire. She no longer was able to attend to herself personally. We had to feed her again. It was a very hard time to watch Gran get through. It was almost torture and at one point I felt there was no hope.
I wondered whether her frequent UTIs were the trouble again but test results were negative. This puzzled me a great deal. Her physical symptoms were also puzzling. She became worse with a high temperature, high blood pressure (something foreign to Gran) and a high pulse rate. As the day extended, she asked for water and drank it just so quickly. Her mouth was very dry. She had rigid upper body movements and explained that she was finding it hard to get air. I informed her doctor of the situation.
18 April 2011 … Gran was still “up and down”, some nights she slept, others she did not. Sometimes she was very coherent and sometimes she shouted loudly. She often experienced hot and cold episodes and could not tolerate hot days or bright sunlight. Her body did not seem to be able to regulate her body temperature any more. I had to shut out the light. It seemed her hormones were well out of balance.
5 May 2011 … At this point we could could not cope any more with Gran’s episodes of hallucinations, her hyperthermia (these were very hot episodes where the sweat just poured off) and the complete insanity prompting her to strip naked. She was also incontinent. She suffered insomnia, and went without sleep for many days and nights. I felt Gran’s symptoms were some how tied up with the ‘Serotonin Syndrome’.
It was at this point that I learned that high magnesium foods (serotonin rich foods) aggravated her symptoms greatly but a high protein/calcium diet (melatonin rich foods) were more calming. However, because of the danger that her symptoms presented, I felt the need to have her admitted acutely. I felt she needed medical treatment – an antidote drug to reduce her possibly raised serotonin levels.
Once in the hospital, she was given a reversal drug, Lorazepam. It worked instantly and she finally went into a deep sleep.
The next day however, because Gran had the “label” Alzheimer`s, the medical team decided that they could do no more for her and that she should be discharged. I voiced my concerns and informed this new doctor of what had happened and the possibility that Gran just may have raised serotonin levels. She agreed the Haloperidol could have led to Gran’s current problems and conceded the need to run more tests.
Her current medication, Clonazepam, definitely alleviated Gran’s presenting symptoms. She finally slept and was not so agitated. Her hyperthermic and muscle rigidity episodes have gone. When we visited her, she was now able to recognise us all and address us by name. The doctors also decided to do a blood serotonin test and the results took a few days to come back. After these few days had passed the doctors decided not to inform me about Gran’s serotonin blood level. They merely said to me that this test was unnecessary. I replied, “Because the Clonazepam was alleviating her symptoms, it proves that her serotonin was too high?” However, the medical team had informed all staff not to give myself or the family any information about her care. Without knowing we had the power of attorney, we could do nothing.
They called me “dangerous”. I guess in a way, yes, I am … I have the truth and am not scared to point this out! However, to me; “dangerous” is injecting IV Haloperidol into 85 year old ladies and apparently getting away with it!
24 May 2011 … Sadly after 3weeks on these reversal drugs, her serotonin level flipped back the other way and dropped sharply. When her serotonin level dropped another UTI emerged. While her levels were high there were no urine infections. Sadly, Gran’s serotonin level, in going from high to low, could not find a happy balance point. The staff thought she needed more Lorazepam to calm her down but now this will only aggravate her symptoms. She needs another antidote to pick her back up … crazy eh!
She was finally seen by a geriatrician from Auckland, the first medic to actually acknowledge the serotonin problem and try to find a balance point … Hallelujah!!! She reduced her Lorazepam as and re-introduced an antidepressant. These two drugs work in opposite directions to help restore the serotonin balance. The Lorazepam reduces the serotonin level but the antidepressant increases it. The object was to achieve harmony. The drugs now sorted out Gran and was stabilised. Within a week she was discharged. There was nowhere for her to go and she was… sent to a D6 unit in Dunedin! The doctor said that basically, her “Alzhemier’s”’ would gradually continue to decline and any stress would alter her serotonin levels.
This was the hardest time of all for me, letting Gran go. It is the very thing that we wanted to avoid, especially when we knew the cause of all the trouble and that now, nobody was accountable. This is where my utmost Faith had to emerge and where my trust in my heavenly Father for peace, happiness, healing and protection over my dear Grandmother, who really deserved JUSTICE, had to prevail.
December 2011 … Gran has been in a far better environment. She has had love, good care and far fewer drugs. Her health has gone from strength to strength. The staff down there agreed, that the only reason for all that has happened is the incorrect medication. Alzhemier’s disease progresses with time, not regresses. What Gran suffered could not possibly have been Alzheimer’s disease.
Just recently a family meeting was held. It was agreed that there is no need for Gran to be in a D6 unit and in the New Year she will be transferred to a regular nursing home, closer to home. She has finally stabilised and has peace and happiness back in her life. She comes back home to us for regular visits and it is hard to believe just how good she is now. She talks coherently, she knows who all of us are, she feeds and toilets herself with no incontinence.
One of Gran’s intitial drugs that she started on for urinary incontinence, Oxybutynin, was definitely a huge contributor to the start of her downward spiral. Common side effects associated with Oxybutynin and other anti-cholinergics include dry mouth, difficulty in urination, constipation, blurred vision, drowsiness and dizziness. Anti-cholinergics have also been known to induce delirium. In those with diabetes, as was Gran’s case, Oxybutin can worsen overflow incontinence as the fundamental problem is a failure for the bladder to contract.
The amazing thing was that Gran, once on this drug, had all of these side effects and the psychiatrist did mention that this could have been a contributing factor with the acute “Alzheimer’s Disease”. One of the side effects of this drug is delirium!!! The other trouble when Gran was on this drug, was the recurrent UTIs and the many antibiotics that followed. The doctor who had prescribed the drug, although ringing my mother a week afterwards to see if she had suffered any adverse effects did not call back any more and did not advise my mother of any dangers. Maybe her so called “Alzheimer’s disease” was created by the drugs in the first place and that we are just too trusting when it comes to doctors prescribing such drugs???
Good always comes out of bad situations and even though I would not ever want anyone else to go through what we have been through – it caused some great pain as a family along the way – I would not want to “undo” what happened, as Gran has led me to one of the keys that unlocks one of the mysteries of life.
I now know how food can alter one’s serotonin level (the happy hormone level) by either increasing or decreasing it to achieve an optimum balance just as the correct drugs can do it. However with food, unlike drugs, it is a far safer way to achieve this.
Hopefully this story may divert someone else`s loved one from the claws of death and into LIFE …
For more detailed information regarding the serotonin level, visit this link: http://www.betterbods.co.nz/serotonin.htm
Summary
- Urinary tract infections seem to go hand in hand with dementia. This is the first connection to rule out if someone you know presents a diagnosis of dementia. Could it be delirium from the urinary tract infection?
- If the urinary tract infection has been confirmed and you choose to accept antibiotics, ensure your doctor tests for resistant strains, otherwise the antibiotics may not be effective.
- Too many antibiotics can lead to lowered magnesium levels, this can lead to further urinary tract infections which can establish a vicious cycle. It is really wise to increase magnesium rich foods, such as garlic and parsley, to help prevent further relapses. It pays to also eliminate and/or reduce high melatonin foods, such as tomatoes, dairy produce, rice etc.
- Coconut oil (and go-free coconut products) are very good preventatvie for people who are suffering with dementia related symptoms, as they are rich in magnesium and CLA (which helps repair the gut, where 90% of our serotonin is manufactured – the other 10% of our serotonin is manufactured in the brain).
- Anti-psychotic medications appear to actually make some people psychotic so to avoid the dangerous side effects of these drugs and many other drugs, the key is to avoid GOO, and in turn avoid disease (which is explained in my first book, “Jenna’s Journey” or visit my website, www.betterbods.co.nz for further information)
- Dementia, Alzheimer’s disease and related conditions, continue to increase in incidence and may well be the largest burden of disease to confront us in the near future. We are supposed to gain advice from our elders but sadly many end up in a vegatative state, not even being able to recognise their younger loved ones. What future is there for many of our children when, at such a young age, they too are prescribed cocktails of dangerous drugs.
- Age and disease is a reflection on how many drugs and toxic foods we are on. The more we have the older and sicker we become. Sadly there are known cases of children with dementia, so the aging process has sped up by following the wrong path.
- Justice for my grandmother and many others who are facing other awful situations, is to stop the root cause … which is goo. It is simple, when the cause disppears so too do the harmful drugs. This would then give us, PEACE, HAPPINESS and HEALTH………
Blessings and love,
Rachel Tomkinson
“The TRUTH will set you free, but believe me it will ruffle many feathers along the way”.
Rachel Tomlinson is a nurse, personal trainer and massage therapist. Her website is www.betterbods.co.nz