I'm bored. I'm impatient. I am struggling not to be consumed by this disease. My brain has decided not to function well some days. I find myself making silly mistakes about medication and incapable of even picking up a book for more than a few seconds. It has occurred to me that I may be in the early stages of Alzheimer's disease, having difficulty focusing and sustaining coherent thoughts.
Or it could be that I have spent a week without significant respite. This is our first summer with Michael needing fulltime care and our first summer juggling the inconsistency of caregivers who have lives of their own and cannot commit in the same way they can through the winter months. I spend almost every waking hour, and many wakeful hours throughout the night, alone with a man who is no longer the husband I knew. He is a 62-year-old man with dementia severe enough that he can rarely express his needs and when he does express himself with any clarity of speech I feel as though I have entered the twilight zone; the clarity of words does not extend to his thoughts. But then every once in a while, quite by surprise, the old Michael will emerge to say something so very unexpectedly quick witted that I find myself collapsing with laughter. After I have recovered from my laughter I am left saddened at the reminder of who he used to be. It's like a very small window is opened ever so briefly to look into what used to be and then it is firmly shut again to be reopened I know not when.
It was Monday morning when I was writing the above words. I had silently prayed for some reprieve, some change, anything at all to be different. Our world has closed in recently with another bout of constipation that all came to an alarming climax Monday evening. So my prayer was answered but, of course, one should be careful what one asks for.
After two weeks of Michael becoming weaker, less hungry and less active with the chronic constipation that I struggled to relieve through diet, fluids, increased medications and enemas, nothing seemed to be working well. But Sunday things started happening and I nearly crowed with joy (funny what makes one happy in the throes of chronic disease). At last. Michael seemed to feel a bit better.
Monday morning he complained of right shoulder pain and lower back pain spreading into the pelvis but nothing too severe. He always has minor aches and pains in the morning and usually an hour after administering his Parkinsons medications, all is well and loosened up. Such was the case that morning so I thought nothing more of it. Out of sheer desperation and boredom I suggested a quick trip into town to grab some lunch since my ennui had now morphed into complete inertia and unwillingness to carry on with my usual domestic duties, especially cooking. Besides I have discovered in the past that a good meal of a greasy hamburger can often have the desired effect on the bowels that I was looking for. At least it does for me. So off we went for medicinal junk food. By this time though there had been further happy activity in the bathroom so it seemed that life was looking up. I was a bit puzzled by the fact that the bowel activity was now uncharacteristically loose after no further change in strategy from before. Maybe it was a supremely delayed reaction to the mega-doses of laxatives he has been on. No matter, action was action.
The rest of the afternoon was uneventful. After a late lunch I had given myself the night off cooking supper and announced to our daughter when she came in the door that she was on her own in that department. She was going out for dinner so all was good.
Suddenly Michael was doubled over in pain. I got him onto his bed and gave him a Tums, thinking maybe fast food hadn't been a good idea after all. His agitation increased and sweat collected on his brow. He started talking about going to the hospital. Now hold on, I thought, let's be damned sure this is serious before we go down that rocky road again. But after many minutes had elapsed with no improvement I told Laura that she should cancel her plans because I'd need the car. Michael was unusually lucid; he always is when in pain, yet another curious paradox, and announced he wanted to go in an ambulance. I wasn't convinced this was anything terribly serious yet, thinking it could well be a bowel cramp given the day's heightened activity or perhaps, more seriously, a gall bladder attack, so I suggested we hop in the car and head to the hospital with Laura accompanying us just in case things got out of control during the fifteen minute drive into town. I have made many such drives over the past few years with him in much worse condition and have found I am the epitome of calm in such circumstances, just in case, dear Reader, you are questioning the wisdom of such action.
On arrival at the hospital, things were clearly backed up. It was over an hour before we made it to Triage and by now the pain had subsided which meant Michael was at the bottom of the list with an eight hour wait. Unless, the nurse said, things suddenly worsened. It was then I did a morally questionable thing. I asked Laura to get Dad a snack, thinking that food might just set things off again. I was right. After about two bites of a rather disgusting granola bar (far too healthy, far too tasteless) the pain obligingly set in again. Off to Triage I trotted with Michael who was once again doubled up in pain. We were ushered into the emergency room immediately.
By now the pain was extreme and Michael was hyperventilating and looking wild. People rushed about, vital signs read, and finally morphine was injected. While waiting for the drug to work its magic I was trying hard to calm him down and slow his breathing which was getting more and more shallow the more he panicked. I bent down to his ear and slowly breathed in, and just as slowly breathed out, uttering his favourite bedtime chant "Allah'u'Abha" (God the all Glorious). He picked up on my cue and started nearly yelling out the word, which, at the best of times he has difficulty pronouncing correctly, and now was no exception. So instead of the correct words he was yelling "Allah'u'booby". I was trying hard not to laugh at this most serious moment but all I could think about was how the neighbouring patients probably thought we belonged to some breast-worshipping cult. Never mind. Allah'u'booby got him through to the narcotic-calming of the pain and I'm sure God doesn't care anyway.
Now that he was calm, the testing began. Blood tests and x-rays came first. Nothing. The doctor said it was probably a gall stone but Michael would have to stay overnight as the ultrasound lab was closed till morning. Great. A night of hell awaited. Michael was already in a bit of a delirium from the morphine and succumbing to hallucinations. Nothing new and at least so far they weren't the usual terrifying variety he normally suffers through. I decided I'd better stay with him all night. Besides, with all that morphine and his usual anti-anxiety (clonazepam) and anti-psychotic (Clozaril) medications, surely he'd conk out soon and snore peacefully all night. I couldn't have been more wrong. I find it quite amazing how, when in the throes of extreme anxiety and delusional paranoia, Michael's fight or flight response must be at full throttle and gives him remarkable strength, physical wellness (even if his PD meds have long worn off) and alertness. It turned out to be a very long night with me curled up on the narrow gurney with him, my arm over his chest to calm him and keep him restrained because he was intent on bolting. Even if he had slept and given me a moment's peace the woman in the next cot a mere two feet away seemed to have every ailment under the sun afflicting her lungs and digestive system, resulting in a very noisy night. On top of that Michael's constant wriggling seemed to deactivate his intravenous drip, which then activated the alarm on the machine every few minutes. After summoning the nursing staff the first ten times, I finally got them to show me how to reset the wretched machine. In desperation half-way through this sleepless night I gave him another dose of his anti-anxiety medication hoping it would put him to sleep (Did I mention that the nursing staff let me manage all his medications while I was there?) By six in the morning I was less than congenial and was barking at my delirious husband to shut up as he ranted and raved about who knows what.
Daylight began to creep through the few small windows and Michael's only really coherent utterance all night was "Oh look, it's snowing". He then promptly fell into a deep and peaceful sleep. It was now 6:30 am and I nearly hit him in frustration but then realized I might have a few minutes to myself while he snored happily. I pulled my stiffened body off the bed and set off to find the canteen and a cup of coffee. Only a few more hours to get through. Surely this is a gall stone and as soon as the ultrasound is done, diagnosis rendered, I could leave him in the capable hands of the surgical staff even though I had very strong concerns about his physical stamina for a serious operation. It all pointed to gall stones: acute, extreme pain in the upper right abdominal quadrant with referred pain in the right shoulder, triggered by a greasy (hamburger) meal and preceded by weeks of belching and bloating. The doctors were almost confirming what I and the Merck Manual had figured out.
I ate my Spartan breakfast in the hospital lobby relishing physical freedom from the imprisonment of the night. I bought a paper and went back. By 7:45 am we were sitting outside the ultrasound clinic. Things were looking very promising for an early diagnosis. But I forgot that the clinics at that hospital book all their in- and outpatients for 8 am so there we sat, or should I say I stood and Michael slept peacefully on his gurney. We waited and waited and even after the procedure, we waited and waited again for an orderly to transport Michael back to the Emergency ward. Apparently three orderlies had called in sick that morning, explaining the frustrating delay.
It was now 10:45, we were back where we started and there we sat some more. Michael was starting to come round and with a second dose of PD meds now in his system I could see that his mania was kicking in. A short time later a nurse came to offer me a small cup for Michael to urinate into, but by now I was feeling uncooperative and refused to perform the task for them. They could deal with my increasingly agitated husband, hooked up to his IV, in the small confined space of the washroom. I had taken him the night before and wasn't about to again. Besides he was in a diaper and hadn't needed to make the trip again. Off they went, two of them to manage him, and apparently were successful.
We sat again, or at least I tried to while Michael in full-blown mania was out of bed insisting he was leaving, attempting to dress himself, trying to "fix" his IV machine, tangling himself up in the tubing, walking away forgetting he was attached and becoming generally very argumentative. I was trying in vain to convince him to sit down and be calm but I could tell by the glassy look in his eyes that he was no longer hearing me. I threatened to leave but it had no impact.
Finally, at 1 pm with still no sign of a single doctor, I approached the nursing station to ask what was happening. "Oh" was the calm reply, "his urine sample exploded so we have to repeat it". My stack blew. What I read from this announcement was that they still had no clue what was wrong. Why hadn't they performed a second urine sample after the explosive one two hours ago? And how does urine explode anyway? I returned to Michael who was by now completely uncontrollable. I uttered my final threat that I was going to leave if he didn't settle down and when he was obviously not the least bit perturbed, I knew it was time to follow through. I stormed over to the nurses station again, stated my intention and warned them that they might want to grab that nice young security guard over there because they were going to need him as soon as I walked out that door.
It took all my resolve to leave. I fled to the car and wept. Guilt hammered at me that my parting words to my very sick husband were spoken in anger and frustration. I drove home in a sad and exhausted fog. On returning home I called the kids all of whom were supportive of my decision to leave. Our visiting nurse called about something quite unrelated and she said I did the right thing, assuring me he would be fine. I knew he might not be but he had long since passed the point where I could calm and control him. I had to let things unfold without me.
An hour or so later a social worker called me from the hospital to see if I was okay and did I need help at home, as she was seeing him now in full blown psychosis. We discussed more help but I assured her that what she was seeing was behaviour he usually only reserved for the hospital and that at home he was mostly manageable.
I had a long nap and resisted the urge to call the hospital until late in the evening when they told me he had been sent for a CT scan. Clearly they were still groping for an explanation. I went to bed with cell and home phone by my side but slept without moving for a solid eight hours, the best sleep I'd had in months. On waking, I again resisted the urge to call, having been informed there would be no information about the patients until later in the morning. I went out for breakfast with my friend trying to be normal and to forget about things for a couple of hours; it was a lovely, therapeutic, fun time. I have learned to shift gears well.
Just as I was climbing into my friend's car to return home, my cell phone rang. It was the doctor informing me that Michael could come home. The problem was a bowel obstruction, in other words extreme constipation. They had administered the super enema and to quote the doctor, "I've never seen anything like it". Welcome to my world.
Michael came home with absolutely no recollection of any of the past forty hours, collapsed into bed immediately and slept most of the rest of the day, happy and grateful to be home.
Me too. And I'm embracing boredom.