If the landscape will not change, then one must change the landscape oneself.
"Do you think you could manage a trip to Montreal to visit Laura?" I asked desperately on Sunday morning when it was clear that the expected weekend caregiver wasn't going to show. I had plans to skip down to the river with the dogs for a long, refreshing swim on yet another hot, dry day, an activity that has saved me the past few weeks from certain despair, the controlled breathing of a hard swim a welcome, calming exercise. But in this caregiving business, I cannot count on anything and must be ready to scrap my plans at a moment's notice.
Michael was still seated at the table, his breakfast dishes emptied and scattered around him. His response to my question was to fall instantly asleep. Over the years I have learned to decipher the oddest responses from him. This one was deciphered thus: "I am too overwhelmed by your question and cannot answer you so I'm going to avoid you completely by falling asleep."
It has been almost a year exactly since we last ventured off on a day trip to Montreal ("Midsummer Madness") and Michael's condition has worsened - or my energy has weakened - making me wonder if we would ever manage another such journey together. It is only a two hour drive away, easy on a quiet day, but that can seem overwhelming for both of us if he is anxious. And you never know with Michael. He could be absolutely fine or the whole event could quickly devolve into a nightmare. Because I have dealt with more nightmares than I care to count, I usually err on the side of caution and stay home.
But by Sunday my restless summer madness had reached nearly a peak. I had even been fighting shortness of breath, probably more anxiety than a physical problem. A rare visit to my osteopath last week - who poked painfully and forcefully around my torso all the while emitting intimate noises I hadn't heard from a man in a very long time - seemed to release tension around my diaphragm. I spent the rest of that day yawning and breathing deeply as though I was taking my very first satisfying breath. I had come up for air and the feeling was so very satisfying. But it was short-lived. By Sunday the old feeling of suffocation had returned.
I propped Michael onto the couch for his usual morning snooze after rousing him from the table. I'll call Laura, see if she is home and receiving refugees, then reassess Michael's condition in half an hour, I thought. In the meantime, I loaded up the car with everything I could think of for a day away with a severely disabled man, then took the dogs outside for a playtime before they might be shut in for the rest of the day.
When he awoke, I posed the question again. This time he didn't immediately slump into unconsciousness. He merely looked at me blankly.
Hey, that was an affirmative response if ever I heard one. "Right, we're going," I announced.
It took only the time to direct him to the bathroom for a final emptying, then I tied his shoes and we were off. From the formation of the idea to actual execution of the plan? Forty-five minutes, forty of which was his nap time.
We arrived home eight hours later. It was a wonderfully successful, simple day, thanks to careful reorganization of the medication schedule and allowing no time for anxiety to mount. "Why don't I do this more often?" I wondered, vowing without much conviction to make another attempt soon. We sang loudly and lustily together to old songs. I sang alone to the new ones. Michael's lovely deep voice is long gone and his singing is rather atonal now but I was happy to see he still pitched in occasionally. At one point I looked over to see his air guitar skills being exercised. What is it with guys and the air guitar? Also, since we are analyzing male psyches, what is it with guys - the middle-aged variety, that is - and very expensive top-down sports cars? I would say that ninety percent of such cars that we saw on the road were being driven by older men sporting baseball caps. The young ones, on the other hand, were all driving Batmobiles - or reasonable facsimiles. I took great pleasure in blasting past a bald head in a Mercedes, I in my newly-acquired bright green Accent, dubbed Joyful Joyce after my recently deceased aunt who would have enjoyed a car named after her, I believe. Not that I'm shallow or anything...
On the caffeine-fueled trip home, an old Joan Armatrading song came up on my ipod, a song I first heard the year I met Michael and associate with him, especially the sexy basso profundo who backs Joan up in this recording, a voice that never fails to reach deep down inside and cause shivers of delight. I told him so as we raced down the road (I had kept my speed under control on the way there but couldn't resist zipping home). Unable to speak, he simply put his hand on my thigh, an old gesture that used to speak volumes.
"He loved it," our regular caregiver reported to me upon my return home this morning. The open road had beckoned and I didn't resist the urge despite the risks. And I didn't have a single moment of breathlessness all day.
The landscape has changed.
*Swimmer, personification of the Orontes River, Bronze, 2nd century CE
Wednesday, July 11, 2012
This life as a caregiver is nothing but repetition, day in, day out. It is the same story every day with only minor variations of a theme. Even the days of drama have a sameness to them. It is a waiting game, a race to the finish. Who will get there first? I wonder if I could even exist outside this shackled life, if my feet will fumble the moment I am off my Sisyphean path.
I have tried to stop the daydreams of other things. Of travel. Of love. Of variety. The sameness stretches out before me like a long, well-traveled road I know too intimately. Every curve, hill and bump has been covered countless times with only the timing of the inevitable end shrouded and uncertain in the distance. When I dream of a fork in the road, my way is always blocked. I cannot tear my way through because one of us cannot travel that route and I must not leave my companion behind. The daydreams must stop.
So I am destined to travel back and forth on this rutted path, covering the same ground repeatedly, wheels spinning, the ruts deepening. The few words spoken each day must not vary, the messages must be as simple as possible: "Arms up," as I pull off a sodden nightshirt each morning; "Put the pills in your hand. Now take a drink. Swallow," at the end of the day when even that action can prove too difficult to complete without instruction. I try other words, pretend to converse, but I am almost always alone, always stuck in a monologue.
We live in a circular present. We cannot make plans because there is no future for us together beyond the limbo we live in here and now, to be repeated how many more times. We are both drifting into the past in our heads, he in his choice of movies - old westerns and war movies from his youth - and I into the hazy memories of our past life together before this disease took it all away, those memories the only things that sustain me through the sameness. I travel those old roads daily to remind myself of the warm, devastatingly handsome man I once knew.
It is my dream life that knows no boundaries. It is where I travel. I love. I rage and roar. I laugh. I cry. I dance and scream. But it is of no consequence. It is but a fantasy world that cannot be reached on this road I travel. It is to remain an unwritten story.
So I bid adieu for now. I may be back, but unless the road widens and the landscape changes, I see no point in the travelogue anymore. It is but endless repetition.
It is time for me to write of other things.