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.

Ativan to the Rescue

Wedding week has come and gone. We are intact and unscathed. I had imagined all kinds of calamity and mayhem, all too likely with Michael now.  My motto the past few years has been: Prepare for the worst, hope for the best.

The beautiful bride arrived home two days before her fiance, her siblings and their partners. Having learned that forewarned means that Michael usually forearms - literally if I let him - I chose not to tell him that the house would soon fill up with his children and a wedding was looming. Instead I simply let our daughter come home and quietly greet her father. He seemed calm on her arrival, but then he always does.  His anxiety percolates below the surface for a few hours, hidden behind his Parkinson's mask, then breaks loose to wreak havoc, usually in the wee hours of the night.

Last Tuesday was no different. It wasn't until bedtime that the demons began their work. Anna and I sat up for a very welcome intimate visit after Dad had been put to bed.  I knew right away we were in for trouble when his heavy sleep-breathing lasted only a few minutes. Sure enough the clanging began early; the anxiety was mounting.  I gave him his usual dose of clonazepam for anxiety which normally takes effect on a moderately crazy night within half an hour. By the second wake-up he was hallucinating wildly and panicky, pointing to flames spewing from his deodorant stick on the bureau. Not so far-fetched, I suppose; it is red after all. More clonazepam.

By this time, with only a couple of hours left to the night, I was sleepless and less than friendly. I ordered him to sleep the rest of the night - please. By now I was strung out myself with apprehension that if things were this bad with only one child home, how much worse could they get when all were loudly clattering around the house? I knew the clonazepam was too lightweight for our needs. If we were to have any hope of a peaceful week I had to take a different course than usual.

The next morning, through the fog of no sleep, I scrabbled through his medication box to find the Ativan. This drug was prescribed back in 2010 when he had a terrifying, mysterious breathing attack that, at first, was mistaken for a pulmonary embolism, launching us into yet another hellish hospital experience. It is no exaggeration to say that force, restraints, and security officers were all employed to subdue my crazed husband. Heavy support was called for pharmaceutically too, drugs that are never prescribed outside the hospital setting. The best they could offer me for home use was the Ativan.

The instructions on the Ativan prescription label clearly state that the drug is to be used for his breathing issues. After eliminating all other possible causes for that frightening attack, the doctors concluded severe anxiety must be the source of the problem.  Mysteriously, Michael has had only a couple of minor attacks since that terrible one so I have much of the prescription still available.  Good thing. I resolved to dope him as heavily as necessary, within the prescribed amounts, in the hopes of getting all of us through to the wedding on the Saturday and relieve him of his torment, if possible.

Wednesday night I gave Michael a single 1 mg pill at bedtime, vowing to increase if necessary. He was actually quite calm throughout the day, having exhausted himself with panic the night before, but I knew from past experience that we'd be in for a repeat performance as soon as his head hit the pillow.  The dosage on the pill bottle said I could give as many as six pills a day. Frightening. Peace reigned throughout the night on that single pill with more extreme dopiness than usual all the next morning.

Four more house guests arrived home on Thursday. I held my breath. By way of explaining the houseful, I risked telling him that Anna's wedding was in two days, reassuring him that he could take in as much or as little as he could manage. Our brilliant caregiver would be at his side all evening. I got no response. No emotion. Deadened. At that point I think I could have dropped a bomb on him and he wouldn't have flinched.

The two busiest days leading up to the big day were tranquil and pleasant. The bride was calm, well-organized and unruffled, creating an atmosphere that descended on all of us who were trying so hard to keep Michael's world serene. Through the many calamities that Michael's disease has created over the years,we have all learned to be ready to shift gears in an instant if necessary. This event was no different with various plans of action considered and at the ready if the situation dictated. That flexibility and detachment are strengths and blessings we have all garnered from this experience with Parkinson's disease, that we will carry forth in all that we do.

I can report that the weekend went off without a hitch, except, of course, the obvious one.  After that nightmarish first night, Michael slept heavily thereafter on the single daily dose of Ativan and was pretty oblivious to the excitement throughout the day. Though he seemed almost flatlined emotionally - more than usual - I did witness a rare laugh from him in response to one of his hilarious children. He even participated very briefly in a boisterous game of football in the yard. Miraculous. He could only manage to see his little girl married; he had to return home shortly after and miss the meal and the party. But that was okay. I'd like to think he took in what was happening. When the minister asked us all to stand to pledge our support to this couple, he rose, proud and tall, from his wheelchair. I think everyone suppressed loud applause and tears at that moment.

After the house emptied out, I slowly weaned him off the drug, fearful that to do otherwise might send him into a psychotic episode as we have seen before with other drug withdrawals.  I did have to make a few slight adjustments in the first two days as anxiety crept back in, but as of today, Thursday, he is off the drug completely. And he's calm. I entertained thoughts of keeping him on it permanently but then quickly rejected the idea. I want this drug to work whenever our quiet lives get stirred up in the future. To keep him on it would probably reduce the efficacy of the drug over time.  Better to keep it in reserve for the important events.

The only wedding day calamity was when I tried to dress Michael for the event. The pants that had fit two months ago now needed to be safety-pinned together at the last minute then cinched tightly with a belt. Unlike most Parkinson's patients who are losing weight rapidly by this stage of the disease, Michael has an ample spare tire around his middle.  I hadn't noticed because he always wears elasticized waistbands now for simplicity and comfort. Good thing he wasn't going to be walking anywhere with my hasty, last minute adjustments to his pants. And apparently I don't know how to buy my husband a dress shirt because the white one I picked up three weeks ago was so tight around the neck that, at the last minute, we scrapped the nice new silk tie and went for the open-necked casual look. He's a handsome devil regardless.

The Parkinson's tulip-themed wedding was a huge success.

Breathing Life

I climb the stairs to bed each night and wonder if this will be the night. It's not that I am anxious for this to be over.  I have prepared myself, in fact, for the long haul. Embrace it even. Philosophical. Grateful for purpose.

But I must be equally prepared for Michael's end to come swiftly and soon, instead of this continued slow death.

There are days when I look at his grey countenance, his weakness and anxiety, his halting, shuffling gait, his blank features and his sometimes complete inability to articulate a single thought, and I wonder how this poor man can possibly be long for this world after all he has suffered. Surely there is mercy, reprieve, freedom for him. His roller-coaster blood pressure, his mysterious symptoms, and the ever-present psychosis lurking darkly beneath the surface.

And then I look beyond the illness and see his otherwise strong body, his supreme athleticism still manifest in how he recovers from multiple falls every waking hour, and his often voracious appetite, the most life-affirming sign of them all. He will live for years, I tell myself with a mixture of hope and horror.

I reach my room and turn on the one-way monitor that allows me to hear every breath he takes, every move and gastric eruption, every terrible dream that elicits loud moans and garbled sounds. Most nights I sleep peacefully through all the exaggerated, amplified noises. Other nights I lie awake listening to the odd, stop-and-start breathing pattern. I will myself to keep my own breathing normal through the lulls, a lifetime hanging in his completion of every breath.

"Wilk" by Alfred Wierusz-Kowalski, 1895