Hellfire and Hallucinations

Burning walls. Enemies toting flame-spewing weapons. Forest fires. Spontaneous combustion of mundane household items.

These are the visions my husband must cope with when in the throes of a paranoid hallucinatory attack. They are often sparked by stress, such as a visit to the hospital where the entire staff becomes the heavily armed enemy and Michael the victim. Or it could be an underlying infection or illness that tips him into this horrific world of fire and brimstone. Most recently it was simply the arrival home of our children for Anna's wedding. Not that these fine young people are to be feared in any way. It is simply that they represent a bursting of Michael's small, protected bubble and fling him into a state of uncontrolled confusion about what is going on, what is expected of him and, perhaps most significantly, whether I will be there and undistracted at all times to maintain and manage his equilibrium.

This most recent descent into hell marked a new development in his hallucinatory life. It was certainly the most severe for such a small upheaval. In the past the triggers have been dramatic and foreseeable; a cold, a heart attack, a prolonged dental procedure, a urinary tract infection, hospitalization. This was the first time a visit from his beloved children was the flashpoint. In the past he has reacted to these visits with anxiety and a panoply of strange physical symptoms but never hallucinations.

It happened twice in the space of several days: the first time with Anna's arrival which I then treated successfully with the Ativan (see "Ativan to the Rescue"); the second on her return from her honeymoon with her new husband a few days after the wedding. Michael's anxiety manifested immediately so I leapt upon the Ativan and treated him without delay even though I had only weaned him off the drug a couple of days earlier. He was calmed immediately so I congratulated myself on my quick action. I was premature, unfortunately. That night was one of his worst ever for wakefulness and delirium, though curiously not anxiety. I suppose the Ativan at least took care of that.

He was unable to articulate his visions through the night, though I guessed they were probably fire-related.  We were up ALL night. The next morning, bleary- and teary-eyed, I asked him again and all he could say was, "Forest fires". I'd be vigilant all night too if I thought we might be consumed by flames at any moment. It's nice to know he's got our backs...

Hallucinations are not necessarily a feature of Parkinson's disease, though it seems that the more advanced the disease, the more likely they are, especially if the patient has suffered cognitive deterioration. It is also a possible side effect of many of the drugs Michael takes. Anti-parkinsonian medications such as Carbidopa-levodopa (aka Sinemet) and Comtan, anti-psychotics such as Clozapine, and benzodiazepines such as Clonazepam and even Ataivan itself, all list visual hallucinations as a possible side effect. Michael takes all these drugs. He used to take many more but most were withdrawn a few years ago in an attempt to relieve the increasing cognitive dysfunction and psychotic behaviour - with no success, I might add.

In combination these drugs must make a fiery, brain-altering mix, though I doubt much research has been done on these late-stage pharmaceutical combos. It is always a doctor's and caregiver's desperate  effort to balance the multitude of nasty and ever-increasing symptoms of this disease. At some point, though, the many drug side effects may outweigh the disease symptoms, but to remove these medications completely, even gradually, could spell death to the patient or at the very least a rapid escalation of all the symptoms, including hallucinations. It is also very difficult to determine which is which.

I have hallucinated only once while indulging in a mild recreational drug at age twenty. Fire filled my bedroom but I was sufficiently lucid to be aware that it was just a hallucination and would soon go away. I was untroubled by the vision but I never took that drug again. To be in a condition where I could not differentiate between reality and terrifying hallucination would be hell on earth. I cannot imagine the terror Michael must experience. I wish I could help somehow but all I can do is tell him what he is seeing is not real. The visions never disappear with that assertion, but somehow my presence alleviates the pain more than anything else. We'll be in big trouble when I no longer have that calming influence.

Would God actually let him reach that point? Let's hope that modern medicine, if not God, can come up with a solution.

Playing with Fire

I conducted an experiment this week and it failed. At least I think it did.  Not spectacularly or catastrophically, just quiet failure, but it was worth the try.  I had been giving this decision much thought and felt we had nothing to lose.

Some time ago I wrote about the newest drug in Michael's arsenal, Clozaril.  It is a powerful neuroleptic drug used to treat stubborn cases of schizophrenia and patients with Parkinson's Disease where dementia progresses to the point of deep psychosis.  It is a dangerous drug and only used in difficult cases because of the many serious and not-so-rare side effects, but it is indicated for Parkinson's patients because, unlike many of the other drugs in this family, this one is less likely to cause tremors or exacerbate existing ones.

Michael has tolerated the drug very well, passing his weekly blood tests that monitor his white blood cell count, a test ordered by the drug company in case of the fatal occurrence of agranulocytosis, which, very simplistically, is the destruction of those important infection-killing cells leaving the patient very vulnerable. And he has experienced very few of the other nasty side effects.  On the whole the drug has been successful and Michael has been very well the past few months.

But, since the fifty percent increase in this drug last August when he lost the connection with his world during a hospital stay, he has been more lethargic than ever. He rarely moves off the couch these days, not because he cannot but more because he simply lacks the will.  He sleeps a lot and is more withdrawn than ever except for occasional moments when friends visit.  For those moments he seems able to rally all his resources, physical and mental, surprising his guests who expect to see him in the near-zombie state I often see. (Could thirty-plus years of marriage be the real culprit?)

I am not complaining about the new calm that has settled over our lives, but, as the caregiver and always trying to figure out ways to improve his life, I have become worried about this immobility and the implications for other aspects of his health, such as his cardiovascular system that has already shown itelf to be compromised, and his musculature which is rapidly atrophying.

On thinking this through I jotted down these observations: Michael's psychosis is triggered by internal or external changes in his condition - constipation, urinary tract infection, a planned trip anywhere - and Michael's plunge into psychosis does not seem to be prevented by this drug when he does experience these changes. Ergo, perhaps the drug is not necessary, and the anxiety that bubbles up as a precursor to full-blown psychosis could be controlled by the other anti-anxiety medications I have at hand.

I had been thinking about this for weeks, probably because I miss my husband whose chattiness and sense of humour were always such good company.  I haven't seen much of this man for a long time, I admit, well before the introduction of this drug, but he has gone even further away the past few months. So I decided, without consultation I confess, to pare back to the pre-August dosage which meant keeping the full 25 mg pill at night but not the more recently introduced half pill in the morning.  My logic was that he might have more energy and less lethargy during the day but still have that nice hit at bedtime to see him peacefully through the night.

Wednesday was the morning for the first missed dose.  Coincidentally it was also the morning for another task I'd been avoiding for weeks.  Though I am conscientious about my own health, popping various immune-boosting remedies when the first sign of a cold strikes or just maintaining good nutrition and exercise so that I almost never get sick, I had to admit there was no home remedy for deteriorating eyesight and no substitute for the occasional visit to the dentist. So Wednesday was the day to book all those long-neglected appointments for myself and while I was at it, I thought I might as well book a dental appointment for Michael whose rapidly deteriorating teeth have been neglected since his care needs escalated back in November 2009.

There is a reason for my reluctance to visit his dentist.  Five years ago, Michael underwent a routine root canal and at the time seemed to tolerate the procedure well. That evening he suddenly fell into a delirium we'd never seen the likes of before but with which we have since become all too familiar.  He had his dinner, then started picking up invisible objects from the floor and pointing to and communicating with an invisible crowd in the living room.  Not much later he fell into a frighteningly heavy sleep.  I had no idea what to do so did nothing but wait it out, which, knowing what I now know about this disturbing condition and how it responds to hospitalization, was the best thing I could have done.

Since life has been so stable lately, I thought it was time to address the dental problems. As it happened, his own dentist could see him that afternoon.  It was a free day (it almost always is) so I agreed to the visit which was just to be a cleaning and a check-up.  I did have a moment of doubt that perhaps I should wait a day or two to see how Michael fared with the new drug schedule but then quickly discounted that and threw caution to the wind.

Anxiety almost immediately kicked in on learning of the appointment but did ebb away as the morning progressed.  I assured him nothing much would happen that day.  Even so, the visit was a bit challenging as he choked a lot through the cleaning process, but the hygienist was very patient and propped him up every few minutes to clear his throat.  The only visible sign of anxiety I could see were his clenched fists but he declared he was fine whenever I asked.

The dentist decreed that one badly decayed tooth that had recently lost its capping would have to be extracted and two others filled.  The extraction might be lengthy if the tooth broke in the process so it could mean up to an hour in the chair.  I decided not to book the appointment immediately but wait a week to see if there was any fallout from this simple stage of the process.

I anxiously monitored his behaviour throughout the evening but there was no recurrence of the post-procedure delirium of five years ago, just a bit of agitation, nothing that couldn't be handled with a mild dose of anti-anxiety medication.

All was well the next morning, day two of the reduction campaign.  Michael was noticeably more alert, more mobile, more communicative.  Things were looking good; my experiment might be a success.  But later in the day, some old symptoms reappeared.  The nagging ache in his upper right abdomen returned which might be explained by the slowing down of his digestive system again over the past few weeks (the flax continues to work but less well than at first, forcing me to reintroduce small doses of the drugs) but I think it was a symptom of anxiety.  More medication.

On Friday, day three, he was even more alert,  That afternoon dear old friends dropped by for a most welcome visit and Michael was better than ever, partly because of the reduced drugs but mostly, I think, because of the happy visit.  He joked coherently, making us all laugh.  I was feeling happy and confident that my decision was right.

But Friday evening things began to change.  The haunted, hooded look that crosses his face as the pre-cursor to psychosis had appeared.  I asked him how he was feeling and for once he was able to give me a fairly detailed response.  He said he felt so much more alert and clear-headed and enjoyed being back in the world but he recognized that the Darkness was approaching.  An odd phenomenon I have noticed is that extreme delirium is always accompanied by increased mobility and intellectual activity.  That's what I was seeing on Friday night.  I asked him if he wanted to continue the experiment with the reduced medication and I could see he was torn, enjoying the renewed lucidity but afraid of going down that dark alley again.  I realized I was too and I lost my nerve to continue.  There is always the fear he may not find his way back the next time.

So today, day four, I resumed the full dosage of his Clozaril and he sank back into lethargy and calm.  I also cancelled the appointment for the tooth extraction because he had become quite fixated on that. It can wait. It is difficult to say whether the increased anxiety was a result of the drug reduction or just the anticipation of the dental procedure.  It is unfortunate that I allowed both to occur simultaneously because I will never be sure what was happening, but I am certain that with the significant increase in the anxiety and the wild look returning, it was too risky to continue. Obviously I cannot have both a lucid and calm husband. We are opting for calm.