(Preface: After a two-week, medically-necessitated hiatus, I’m able to resume my learning blog challenge – with a serious topic. I urge you to read this one, especially if you have elderly parents facing an operation at any point in the future.)
On Tuesday 1 April 2014, I launched my personal “What I Learned Today” blog challenge, to learn and share something new every day. Six blogs later, I crashed to a halt. I don’t abandon commitments lightly. With references in my last two blogs to my father’s hospitalisation and a last-minute flight back to the States, you probably guessed that something disastrous had occurred. Indeed, my family and I were facing an all-new and much bigger April challenge.
With Dad’s recovery now well under way – and with his permission – I can now tell you what happened.
My Dad’s nightmare
On the same day that I commenced my Month of Learning, Dad checked in to Huntsville Hospital in Hunstville, Alabama for a total knee replacement. While a significant and painful procedure, which requires extensive, follow-up physical therapy, knee replacement is one of the most common, and most successful, inpatient surgeries, with complications in fewer than 2% of the more than 650,000 replacements (and rising) carried out each year in the US.
My parents knew first-hand what to expect; my mother had her knee replaced two years ago, and Dad prided himself on being on hand to guide her through the post-operative pain management and physical therapy.
What neither of them expected, and were not advised about, were some of the other risks involved when operating on a 77-year-old.
In the days immediately after the operation that Tuesday, Dad was tired, a little loopy and occasionally slurring his words. This was deemed normal and related to after-effects of the anaesthesia used during surgery. By Friday, when Dad was due to return home to start his outpatient physical therapy, he and Mom had decided instead to move him to a private rehab, where he could receive more intensive treatment. When he arrived at the rehab, he was in a lot of pain from the knee, and the staff – not having yet received nor reviewed the full list of his medications – administered a high, and it turned out, incorrect dosage of a painkiller called Lortab.
We suspect that this was what initially tipped him into Delirium, a state of immense confusion and incoherence. In his Delirium, forgetting that he’d had his knee replaced and it was too early to walk or stand, Dad had three serious falls and was becoming more and more agitated. By Saturday, the rehab was no longer able to deal with him, and my mother and brother – who was visiting from California – took him back to the hospital. They waited in the emergency room for seven hours.
By the time they were seen, it was the wee hours of the morning and they were desperate. They were told that, apparently because of some Medicare bureaucracy, Dad could not be re-admitted for the same condition for which he was discharged, ie recovery from complications relating to the knee replacement. The only way he would receive a hospital bed at that point, ER nurses explained, was by being admitted to the hospital’s Psychiatric Unit to treat the Delirium. They were told that this was the only viable, immediate solution, to get him admitted overnight, and entirely voluntary. So they signed him in.
The Psychiatric Unit was a disaster. Apart from receiving no therapy for his knee, which was starting to seize up, Dad was physically restrained, strapped to his bed or chair, in a ward with severely ill mental patients and only allowed two hours’ visitation a day from only two family members at a time. When Mom and my brother were permitted to see him, they were horrified at Dad’s rapid deterioration. They, and my sister, who lives in Huntsville, fought for three days to get my father released from this unit. While his stay there was supposedly ‘voluntary’, the psychiatrist in charge needed to approve his discharge, otherwise insurance would not pay for any subsequent care and no other facility would accept Dad – and the psychiatrist refused to meet them.
After much lobbying, on the Tuesday, a week after his surgery, Dad was finally moved to the hospital’s Internal Medicine wing, and his assigned physician, we’ll call him Dr Y, ordered a series of tests – blood tests, MRI, video EEG, to name a few – to try to determine absolutely the root cause of the Delirium. My mother was warned that, if they could not find the cause and eliminate it and/or lure my father out of this acute (ie temporary) Delirium some other way, there was a chance that he could slip into chronic (ie permanent) Dementia…
As we suspected that the Lortab overdose was to blame, and its mixing with the cocktail of other drugs, either administered at the hospital or which Dad already took day to day, Dr Y curtailed other pain medications and also hooked Dad up to an IV and saline drip to flush out his system. The family was called in, with unlimited visitation privileges, to try to calm, remind and talk him back to us.
I arrived in Huntsville on the Wednesday, the day of my last blog, posted just before I flew out from Heathrow.
Watching over Dad was an intense 24/7 duty. Initially, he was unable to do anything on his own – eating, drinking (through a straw), urinating … and the rest or to concentrate on anything for any length of time. He could not remember things from one moment to the next. Conversationally, lucid moments were rare and merely punctuated a stream of consciousness that zig-zagged through decades, people and geography. At other times, he was more responsive to noises and voices unheard by the rest of us. While he was no longer strapped to furniture, Dad was attached to the IV and wired with a cumbersome heart monitor, which he regularly adjusted or tried to yank off, and because he was a “fall risk”, his bed was alarmed. If he tried to get out of bed, a loud siren sounded and nurses came running. Despite this Pavlovian penalty, Dad tried to get up a lot. He kept forgetting about the knee operation and refusing to believe that his legs could not support his weight. Inevitably, he would stumble and fall. Hard. Every time. Knocking his head against the wall or the floor, collecting new blooms of bruises with each tumble.
And, in the hospital, every fall triggers a new round of X-rays and cat-scans to check for damage and potential blood clots. Similarly, when his temperature soared one night during his routine vital signs check, more tests and doctors were called for. Each alarm and foiled attempt at mobility stoked Dad’s anger and frustration – even if an hour later, he didn’t remember the incident – and every test increased his confusion, paranoia. Occasionally, he would become aggressive or violent.
I could explain a hundred times that he was in Huntsville Hospital and sometimes Dad would accept and understand this, but more often he was convinced that he was somewhere else entirely: a conference where he was expected to give a speech but hadn’t been briefed (where were his notes? what was the itinerary? who was making the keynote?), a cruise ship, a hotel with sub-Faulty Towers standards. In his darker moods, he harked back to Vietnam (where he served three tours of duty) and combat hospitals, and in his darkest fogs, he believed he had been kidnapped as part of some sort of sinister “dark ops” initiative and that he was being experimented on and tortured. Even more upsetting was when he was convinced that the family had been brainwashed and were complicit in this evildoing. One night, he lashed out at me, accusing me of being a foreign spy and traitor; he thought I was trying to murder him.
The nights were the worst. There would be no sleep for whoever camped out in the hospital overnight with Dad. This was when he was most confused and agitated. Dad would sleep for maybe half an hour at a time, tops, and even when sleeping, he was anything but restful. He’d thrash about, tearing at his hospital gown, wires and diaper, moaning and shouting, talking and arguing to whoever was populating his Technicolor nightmare visions. He’d often kick or reach out with his arms, as if picking things off the walls or assembling a bomb.
During the time I was in Huntsville, the days often brought marked improvement – indeed, Dad and I had some of our best-ever father-daughter conversations of a morning or afternoon. But internally, a switch would flick between five and seven pm, and the nighttime companion – often me – could be in for a very rough ride. This is common with Delirium and Dementia; it’s referred to as “Sundowners”.
By the following Tuesday, two weeks after his knee replacement, and a week after his re-admission, the tests had still yielded no conclusive evidence as to the cause of the Delirium. In fact, my father – a lifelong fitness fanatic – was rated in top physical condition (with the incredible exception of a gout infection, which was detected from fluid drawn from his knee and may have been contributing to his joint discomfort all along).
He was still periodically confused, especially at night, and still unsteady on his feet, but well overdue to commence his physical therapy regime. The hospital had run out of tests and, not only was there not much else they could do for him, his prolonged stay was exacerbating the Delirium.
So, with Dr Y’s sanction, we then moved Dad into Redstone Village, another, much nicer, private rehab facility, where – as a bonus – he was surrounded by many other retired military peers. And, to supplement the rehab staff and my beleaguered mother, we hired round-the-clock caregivers to help him with mobility, bathing and the like – and to be especially vigilant during Sundowners. There, Dad has made, and continues to make, rapid progress mentally and physically. And, god willing, he is looking forward to going home within the next fortnight.
Delirium versus dementia: the risks
For me, my Alabama spell consisted of long stretches ‘on duty’ in the hospital (26 hours one stint) broken up only by shift-change trips back to my parents’ home to sleep, change and shower, and occasional Starbucks and junk food breaks. There was no time for blogging while all of this was happening, but nonetheless, I learned quite a bit! Here are some of the headline questions and answers that I’d like to share with you in retrospect. (And let me put in a general disclaimer here – I am not a doctor!)
What is Delirium?
According to the Royal College of Pyschiatrists, Delirium, sometimes referred to as an “acute confusional state”, is a state of mental confusion and disorganised thinking that can happen when a person is medically unwell. As we found with Dad, a person in Delirium can, at times: be unaware of where they are, what’s going on or why they’re there; be unable to speak coherently or follow a conversation; hear noises or see things that aren’t there; worry that people are trying to harm them; be agitated, restless and unable to sit still or concentrate and at other times be very slow or sleepy; have frequent mood changes; feel frightened and depressed; have vivid dreams; experience increased confusion in the evening or at night.
How does Delirium differ from Dementia? And Alzheimer’s?
Delirium is a sudden and abrupt change in perception, attention, mood and action. Delirium is temporary, but it can take weeks or months to pass, depending on the patient and their conditions. Dementia, which is a general term referring to a group of impairment symptoms, is a slow decline in memory and thinking that becomes evident over months or years. Dementia may be slowed but it cannot be reversed. Alzheimer’s is the most common cause of dementia, but it is a disease caused by specific, microscopic brain abnormalities.
How common is Delirium?
Estimates vary widely, but as many as two in ten hospital patients may suffer from some post-operative Delirium. It is so common that at least 15% goes undiagnosed. In elderly patients, particularly over the age of 75, the risk is much higher – some studies suggest between 40-52% of patients in this age group are affected. Other factors – including other recent operations (Dad had a heart stint inserted and a shoulder replacement within the past two years), depression (which runs in Dad’s family) and other mood-altering drugs (including anti-depressants) – can significantly increase the risk.
Can Delirium lead to Dementia?
Both Delirium and Dementia are more common in older people, and they are not mutually exclusive. If a person is already in the grips of Dementia, they may have periods of Delirium – with increased confusion and agitation – that are simply not diagnosed. But it is believed that acute Delirium can, as Dr Y alerted Mom, cause Dementia. In fact, in a University of Cambridge study, published in the journal Brain last year, experiencing Delirium resulted in an eight-fold increase in the risk of Dementia.
What causes Delirium?
The most common causes of Delirium, singly or collectively (we saw the first five with Dad), are: major surgery; medication side-effects; a high temperature; dehydration; being in an unfamiliar place; terminal illness; epilepsy; liver or kidney malfunctions; brain injury; urine or chest infections; withdrawal symptoms from drug or alcohol abuse. If you can find the main cause or causes and eliminate them, the Delirium will lift more quickly.
Can you get Delirium again?
Yes. If a person has had Delirium once, particularly a severe or prolonged bout, they are much more likely to experience it if and when they become medically unwell again. Loved ones should look out for the warning signs and, in particular, try to avoid whatever the original causes were, in order to prevent Delirium in future.
Phew! That was quite a lot for one blog, wasn’t it? There’s also a lot I’d like to tell you about how to deal with someone experiencing Delirium, but I’ll save that for a future blog. I’ve learned quite a few useful tips! Please check back for that…
Postscript: Click here to read the follow-up blog on “How to care for someone with delirium”.
wow, awesome blog article.Really looking forward to read more. Awesome.
Thanks for the info. Very enlightening. My mom is in a veg state after surgery five days ago, reaching her arms out every 20 minutes (probably not trying to assemble a bomb). She has at least half the “high-risk” causes of Delirium you mentioned. Thanks again for the detailed information on your story.
Interesting, when I was under nitrous-oxide at the dentist, it was different this one time. I remember watching the dentist work, and thinking to myself, ‘If this dentist says anything negative right now, it’s gonna cut me deeper than a steak-knife.’ At the time I was on anti-depressants and coming off Ritalin, otherwise I never had this experience at the dentist. Fortunately the dentist had a positive attitude. It’s amazing how the human mind can be so vulnerable at times. My mom is very sensitive already, and it just breaks my heart to imagine a doctor or nurse having a “negative day” and my mom absorbing it personally (she always has focused on the negative).
I’m so sorry to hear about your mother. Has her condition improved?
I’m glad that sharing my family’s experience has been of some use. That will make my dad very happy.
Very very best to you and yours. Hang in there.
This happened to my mother after knee replacement surgery… After she “got better” she started showing small signs of dementia like suddenly not being able to balance her checkbook and not comprehending things she was reading. A few years later she was in the grips of full-fledged dementia…she became violent and uncontrollable and has been in a lock-down facility for almost 6 years now. This all started in her early 70s and she was in good health with no cognitive issues.
Thank you so much for sharing. My 70yr old dad recently had total knee replacement and immediately after experienced delirium for several days. He was confused and hallucinating-seeing and hearing people that weren’t there, eating something, and also became unruly at night packing all his belongings and trying to leave the hospital. They had to strap him to the bed which was heartbreaking to witness. Going in he was completely fine. He is normally a very sharp, intelligent man who is also retired military. After finally telling the Dr’s to take him off all the medications he was back to normal again. They discharged him and he’s been fine all week but this past weekend started with the delirium again and not eating/sleeping. Your blog had really helped. I only hope the Dr’s will be able to help as well.
I am currently going through the exact same thing with my father. He had esophagal cancer, and after 5 weeks of chemo and radiation, he underwent major surgery to remove the cancerous esophagus and replace it with part of his stomach. He has just recently been moved from the Critical Care Unit to a regular surgery ward, but is restrained (legs, torso and arms) because he is completely out of it. He’s been 18 days in hosptial…after some complications that I don’t really know what (?) he had an elevated heart rate and it was all of the place, then he had low oxygen, so he was intubated for 5 days, and completely sedated – during which time he endured more tests, ct scans, x-rays, etc. (this isn’t even a good timeline, I’m out of it as well) And now I’m not even sure he recognized me today at all. But he did immediately following the surgery… I would love to hear about how you dealt with the delirium, I’m lost as to know what to do…
I came across this blog by chance entering information trying to understand my Dads nightmare as you have described yours. My father entered the hospital on April 10, 2018 he had a successful knee replacement. Surgeon came out and said he did great! He came into the room and he was groggy but seemed ok, that was expected as it was the first day. Our story mimicks yours almost to a tee, with exception my Father did not make it. I just wish more people were aware this happens. My dad went from doing his banking, yardwork, driving himself 40 miles away to his friends and his favorite barber, to Delirum, thinking everyone was out to put him in the clinker, to moments of normal conversation of which i cherish. Thank you for sharing your story. I am going to continue to try and find strength to face not having my Father here. Who knew you could go in for a knee to be replaced and come out parinoid and scared & die. Not me thats for sure. Prayers for everyone going through this.
My father had TKL on right leg. It was sucessfull. Surgeon suggested for second TKL on left leg on 5th Day after first one. Father was okay with it. However he was showing slurring of speech which anaesthesia person thought normal after first surgery. He was on tramadol constantly. Things started detiorating from 4th dat after second surgery. He was having constant high fever for which paracetamol infusions were given. Procalcitonin level was 20 (normal 0.5) which made us really worried. High dose antibiotics namely meropenem and sulbatum and antifungals started. They had no effect. He was breathless and diagnosed with severe metabolic acidosis. We shifted him to critical care Unit where he was put to dialysis. His condition improved but again deteriorated with unexplained bleeding around kidney. His HB was falling and he was put to ventilator. While on ventilator he again bled this time around intestine. He succumbed to these insults. We were helpless as we were watching him dye. No blood culture could ever tell what kind of infection he was having. Neither no Investigations could locate source of infection. We are still perplexed. I still remember my father talking some senseful talks which makes me emotional. I repent I should not have gone through second surgery. He was all time delirious and fearful.