Keeping order in a life dictated by an anarchist is challenging. The anarchist does not respect that quiet order I have tried to maintain. The anarchist removes appetite and interferes with meals. The anarchist flaunts wakefulness through sleepless nights. It lies hidden, stealthily awaiting a moment to attack. Lately the anarchist has been getting the upper hand.
Mealtime has been sacrosanct through my life as a mother and now as a caregiver. It was all through my childhood too, a time to connect with family after a busy day, to discuss, or more often argue, about life. I have carefully provided three sit-down meals a day for Michael who until this past year has been a keen food enthusiast even if meals are silent except for the strange noises he now makes while he eats. The routine seemed important if only to suggest I might have some control over this anarchistic disease.
But lately that routine has disintegrated, breakfast being the only meal I can count on him eating fully. I am losing interest too, often grabbing leftovers for myself when I'm hungry, tired and frustrated over the the years of silent meals. Most days I'd rather eat and read or do puzzles alone while Michael languishes in front of the television. He is losing interest in food so I break my rule and ply him with tempting foods while he gazes fixedly at the screen. Sometimes it works though I have to leave the room because the inevitable mess makes me crazy.
Communication has disintegrated even more over the past few days. On Monday night right after his evening medication, I was suddenly aware as I leaned against him watching television that there was something wrong. He was rigid and anxious. Thinking it was simply the anxiety that often accompanies the "off" time of his medication, that usually passes within an hour, I dismissed it, calmly assuring him he was okay. But he tried to articulate something to me and couldn't. I, in turn, painfully and unsuccessfully attempted to elicit a simple yes or no response to specific questions: Is there pain? Is there numbness? Do you need to go to the bathroom? Can you walk? Do you have a headache? Can you see clearly?
I took his blood pressure and it was very high. He was flushed and a bit sweaty. Thinking he might be having a small stroke (he's had one before), I focused on whether he could move both sides of his body. Apart from the normal Parkinson's rigidity he seemed balanced in the little movement he could manage at that moment. I continued to ask questions which he either could not answer or the responses were vague and inarticulate. He started uttering seemingly random single words, then touching each knee, counting "one, two". He touched his nose, then reached out to me. He knew my name but had difficulty naming his children. He was most certainly troubled. At one point he touched and identified his leg. I wondered if there was undue weakness or numbness or pain in the limb, but he couldn't tell me.
Early in the episode, my friend called for a chat. I told her I'd call her back and when I did, she offered to come over. Such a comfort. Michael was now lying down on the couch, very weak and looking more anxious. I had already given him a dose of anti-anxiety medication. At one point he started to shake.
What could it be? A urinary tract infection? Probably not - nothing like the last time which was marked by hyperactivity and deep psychosis, and there didn't seem to be any pain or fever. Was this just a stranger than usual low medication response? Or could it be a reaction to the rather stubborn constipation or mild cold symptoms that manifested this week? Maybe I rattled him by unwisely confessing earlier in the day that I might be reaching the end of my rope (I do that about once every six months and always regret it).
Then all of a sudden, two hours after the Parkinson's meds had been administered and this alarming spell had commenced, he started walking around, apparently okay. My friend went home and the evening continued as it usually does.
I had had a strong sense of dread that this was it, Michael was dying, even though the symptoms were so vague. I knew that a trip to the hospital would be not only useless but also dangerous with all the attendant panic-inducing procedures and general emergency room mayhem. It would have been a futile exercise causing more harm than good, as has been the case in the past. Better that he remain calm and comfortable at home. While my friend was here, I started to cry so I left Michael's side to distract myself in the kitchen cleaning up, my usual technique to keep panic at bay. My friend sat at Michael's side chanting a calming prayer with him.
I spent a fairly vigilant though oddly calm night listening for what I had convinced myself were Michael's last breaths. In fact, on waking in the early hours after a very tender dream about him, and not hearing his heavy breathing, I knew he was gone. I calmly got dressed and ready for the day, putting off the inevitable. Then I heard him clear his throat through the monitor. Awake and normal.
Well, not quite normal. His blood pressure was still dangerously high. All that day his communication was worse, muddled, and has since continued to be so at times. Tonight I offered him a breakfast supper, since he has been even more disorganized about his eating. Or maybe I have been.
"What would you like to eat?"
"We don't have Corn Flakes. We only have the usual stuff, Cheerios and Raisin Bran. Which do you want?"
The conversation went on like this for longer than I could stand and we finally agreed upon Raisin Bran after much coaxing in that direction on my part.
I am on high alert because the anarchist has gained ascendancy, even though Michael's blood pressure has stabilized and everything is seemingly normal, normal at least for a war zone expecting sniper attack at any moment. With Christmas approaching and an anticipated houseful of family, I work to ready the house. In reality I need the order this activity provides to banish the anarchist to the far reaches of the house, to still its insidious undermining of my frantic efforts to maintain calm and normalcy.