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Wednesday, September 15, 2010

Saturday Night Fever

"You look grey," I said to my husband while bending to kiss him goodnight last night.

"I'm getting old."

"You're still the most handsome man on the planet," and I climbed onto the narrow hospital bed next to Michael.

I could hear his heart beating through his thin ribcage. Still strong. He stroked my back. I wanted to say that I'm afraid he's leaving me but I didn't because the tears started to flow. Not a flood, just a small, gentle rain shower. The raging deluge would probably come sometime later when I'm all alone in my room with no one else in the house but a sleeping husband and unconcerned dogs. As soon as Michael's breathing settled into slumber I climbed out and went to bed.

Michael's latest calamity befell him Saturday, or at least that was when I finally figured out something else was terribly wrong. It seems we cannot go more than a couple of weeks now without a new layer being added to his terrible affliction. That worries me.

For a day or two before, I was aware that Michael's mental health was declining again. There were more confused nighttime wakings than usual, a spike in his restlessness and an even more severe lack of focus during the day. It is an odd anomaly that when Michael's physical condition worsens, a kind of frenzied, feverish energy takes hold of him.

On Saturday things reached a head. He was clearly in a paranoid delirium and losing a grip on his closest human relationships: he didn't know his own son and he was very vague about his relationship to me.  He did, at least, know my name but not our son's. I could tell he must be hallucinating as he yelled out to some invisible visitor. When I touched him he was burning up with fever and he was becoming argumentative, accusing me of being his jailer. I was becoming the enemy.

I called my neighbour and good friend who happens to be a nurse. She trotted over immediately with stethoscope in hand and listened to his lungs. He had momentarily fallen into a coma-like sleep making her job easier and regulating his breathing which had been my primary concern earlier in the day. Lungs were clear. She suggested he might have a respiratory infection or perhaps a urinary tract infection (UTI). Michael is almost never felled by viral respiratory infections, one of the small mercies of this battle with PD, so I doubted that was the problem. It could be the latter.

When Michael came to a few minutes later, I asked if he had been suffering any pain on urination. Having had a couple of UTI's myself in the past, I know they are impossible to ignore and be discreet about so I doubted it. Since I have to monitor his bowel activity so closely, surely I would have noticed that. But no, apparently he had been suffering with pain for a few days, though his grasp of time is so muddled it's difficult to assess how accurate his response was. However he was remarkably lucid when responding about the pain. How could I possibly have missed that? I suppose with my complete preoccupation with all things associated with his bowel and breathing activities lately, I had failed to interpret the grimaces he made as anything but bowel problems. I have to rely on his body to give me messages since he is now well beyond being able to articulate any problems he is having, unless, of course, it has to do with his paranoid concern over covert military operations.

I jumped into action and called the hotline number I have for home-care patients. A kind switchboard nurse asked pertinent questions related to my layman's diagnosis of a UTI. Keeping in mind this is Saturday evening by now, imagine my surprise when Michael's doctor called less than half an hour later from his home. He agreed that my diagnosis was probably correct and asked for pharmacy information so he could call in a prescription for an antibiotic. In the meantime, he said, he would send down the on-call nurse to take a urine sample for analysis so they could fine-tune the medication later if necessary. He asked if Michael was suffering any back pain. Apparently not, but his pelvic area was very distended, I reported. The doctor suspected a kidney infection.

By 8 pm, not three hours after the call to my neighbour, Michael had been seen by the nurse and I had an antibiotic in hand, thanks to a good friend who made the trip to the pharmacy for me. I started the course of treatment immediately. He was so restless by now that I was having difficulty managing him. He was bouncing around the house, rushing upstairs to look for our machine gun stash, checking under beds for intruders, generally winding himself up into a serious frenzy. I announced it was bedtime, earlier than usual, but I needed a break. I gave him his nighttime sedatives, manhandled him into bed whereupon he promptly fell into a deep, but temporary sleep. Despite a restless first few hours, he did have a fairly calm night.

His fever came down in the night perhaps because of fast acting medication. The next few days were an enormous challenge because of the delirium and hyperactivity during the afternoon and early evening. On Monday afternoon it was bad enough to prompt me to suggest a drive; the car always seems to soothe him. It reminded me of when our kids were little and absolutely refusing to settle down for a nap. Michael would load the child into the car and drive for ages, if necessary, to give everyone a break from the screaming, over-tired bundle of energy. And it always worked.

I grabbed my ipod with hours of music loaded onto it and off we went, music blaring. I donned my sunglasses and tried to pretend I was driving a very expensive sports car instead of my powerless little Hyundai Accent, a game I used to play when the kids were little and I needed to escape reality for a while. Cars and music are a magic combination for soothing wildness. We drove through the countryside for 90 minutes.

Things have settled down somewhat, I am happy to report. Michael is sleeping nearly all day today; I think the medication is working. The doctor called yesterday to report that the lab results were back, confirming what we all suspected, an infection, but it will be a few more days until the culture reveals the exact bacteria. In the meantime I am to stay the course with the current medication and report any changes. The doctor rattled on in medical jargon that I had trouble keeping up with. He seems to think I know a lot more than I really do but I hastily scribbled down words like pyelonephritis, misspelled, of course, and hit the computer immediately on hanging up.

Pyelonephritis is urinary tract infection which has migrated to the kidneys. I have learned that UTI's are very common in advanced Parkinson's patients. Because all the muscles of the body are implicated in this nasty disease, it is very difficult for sufferers to completely empty their bladders, always leaving behind some urine. This creates a perfect breeding ground for bacteria. In Michael's case the infection seems to have migrated up to his kidneys. The doctor said under normal circumstances he would admit Michael into hospital but being acutely aware of how disastrous that would be, he is leaving him in my care, at least for now. I will try very hard not to miss the next infection when it hits because it is very likely that poor Michael will be plagued with this problem for the rest of his life.

So our feverish dance of the last few days seems to have settled down, thanks, once again, to drug therapy. Watching my husband so weakened and ill from this latest calamity, my fear is that this might become our last waltz.



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