It started with a minor malfunction of the newly installed water treatment system. Craving a late night snack, I had gone into the basement one night to retrieve a new carton of almond milk stored in my pantry. This machine was making a noise I had never heard from it in the three months since installation. I felt fatigue as I anticipated a new household crisis to be managed but assured myself it was probably quite normal and the best thing was to climb the stairs to bed, eat my cereal and try to forget all about it until morning. I would act then if the noise hadn't stopped. As I approached the system to inspect it I noticed the time piece on the front was flashing and displaying the wrong hour, three hours later than it should be. We had had a minor power outage that afternoon but it had never done this before. My alarm was mounting but it was late. What on earth could I do at 11:30?
So I did climb the stairs to bed and managed to sleep. I have mastered the art of shutting out what I cannot change, whether that is a human tragedy far away or a minor malfunction of machinery in my house in the middle of the night.
The next morning the noise had stopped but the time was still flashing accusingly. I hauled out the manual to reset the time myself but it refused to cooperate. Finally a very kind man at the service department patiently walked me through the steps over the phone. Apparently I just wasn't pressing the button hard enough and the noise was entirely normal, indicating that the machine was "regenerating" itself, a process that normally occurs at 2 a.m. when I never hear it. It was doing exactly what it was supposed to do except that it didn't know that the real time was only 11:30. Regeneration was happening prematurely.
After dealing with that minor problem I slumped over my breakfast tea. I'm tired. Tired of taking care of everything. Tired of holding it together all the time while Hell breaks loose. Tired of the endless repetition of the mundane tasks that keep Michael alive and well. Tired of the past three weeks of intensified care; of getting up in the night to reassure and medicate Michael during an anxiety attack; of staying cheerful and calm all the while dreading how he will react to our son's wedding next weekend so soon after this most recent dip in his condition.
I opened up my computer and for some reason I flipped to a real estate website. What possessed me to do that Heaven only knows, but listed there was a cute little house just around the corner from me, not more than a few hundred yards away.
I scoured the ad, always enjoying the vicarious pleasure of snooping through a neighbour's home and pretending I might live there. But this time I got insanely excited. Here was a quirky little place, 900 square feet of living space with wildly coloured walls, low ceilings and a tiny yard and driveway, features that are nearly unheard of in this town of acre-sized, maintenance-heavy properties.
What a relief that would be to have a small city-sized yard and garden to manage. I could take care of it myself instead of paying someone else to cut my field of weeds and grass. And the driveway. It would mean no more shoveling than I am already having to do around my house while my paid helper clears our field-length driveway.
Suddenly I wanted that house and all it represented: my own manageable space, a hideaway, a new life - regeneration. I began to walk through my house and imagine all the things I might need to fill this little house and was surprised to discover that I was remarkably detached from most of the furniture that fills it. I am detached, that is, in the purely hypothetical. Heck, I could get rid of most of it and start all over again with the exception of a few precious pieces that my dad or Michael made.
I booked an appointment to visit this place, explaining to the agent that I would have no interest in moving into it until I am alone but having no idea when that might be. I reasoned that this house, so much less valuable than our own beautiful home, would free up equity for me when I am widowed and needing more liquid assets at my disposal. Besides, I realized through this entire exercise that I don't want to rattle around in this home all by myself. It is already filled with the ghosts of bygone days of happy children and a happy marriage. And then, with my beloved partner gone, it will feel even more like a mausoleum.
For several days before my appointment I was consumed with excitement. I couldn't sleep. I made lists of things this odd little house might need to have changed - a ghastly blue carpet in the living room that clashes with an even wilder shade of orange on the walls. I made other lists of all the things I would get rid of, that there'd be no room for: the now unused piano, the huge sectional couch, beds, the too-large television. Everything would have to be scaled down to fit my little cave.
The agent/friend I contacted had to pass me on to a colleague; he was in hospital and not very well. But Mr. B will take good care of you, he reassured me. In the meantime, smelling a sale, he made calls to a financial advisor to help me out. We can get this going, he gushed.
The morning of the appointment I worked hard at quelling my elation. I know how impulsive I can be about real estate. Michael was always the one quietly cautioning me in the past when I got a harebrained idea to rush out and change our lives. Over the years I learned this was my way of expressing that I needed a change in my life from the tyranny of childrearing, homeschooling, caring for sick parents and now Michael's infirmity. This was probably no different but this time I don't have my Michael's quiet voice letting me just get it out of my system, never squelching my enthusiasm, just being the voice of reason. The two wonderful homes we have owned together were purchased when we were both completely agreed upon the inevitability of them being our own.
My caregiver arrived and I had an hour to walk my dogs before my appointment. I prayed to know whether this was a good idea to plan my life after Michael's departure, to think that far ahead. I want to stay right here in my community but this big house of ours just seems too much some days. I wanted some kind of sign.
I dashed across the road to meet the agent, a man I do not know. We had emailed each other back and forth to set up this time. I climbed the stairs to see if he was already inside even though there was no car in the driveway. Nobody. I walked around the property while I waited checking out the roof, the foundation, the backyard, the windows, the garden, the garage (we've never had a garage before), the front porch. I sat upon the lovely front porch and watched the cars go by on the major road in front wondering if it might be too busy, too noisy. I started to get impatient. Finally, half an hour later, I grabbed my little cart and wandered across the road to do some shopping but not until I had left a note on the door with my cell phone number (why hadn't I given it to him before?), assuring him I was just a few seconds away when he arrived. He didn't.
On returning home I immediately checked my email. There it was: an apology and an excuse. I guess I got my sign.
I was dejected. I had wandered home with a heavy heart but felt uplifted when I saw my own beautiful castle. Not yet time to be thinking about such things. But I am convinced that I will probably move on one day. Maybe I will book another appointment. Maybe not.
In the meantime, I have reset my regeneration button.
*Boris Kustodiev, Blue House, 1920
Tuesday, September 4, 2012
Though I would prefer to engage in an actual conversation with you about Michael’s condition, I thought presenting my concerns on paper might be a more efficient use of our fifteen minute visit. It also shields him from having to hear difficult information about his condition that would only cause anxiety.
Michael’s condition has changed and I have some serious concerns. Dr. G.P. examined him last Friday and discovered that Michael’s oxygen levels are low when seated, lower when lying down. This suggests heart failure, which might explain the purple lips I’ve noticed occasionally over the past couple of months and the lower heart rate (at times as low as 45 beats per minute).
This past week Michael has had many moments of delirium and confusion, more than usual. Last Tuesday he passed out during a coughing fit in the middle of dinner. Since then his mental state has been much worse, though today he seems back to what is normal for him. All of this is also in the wake of my first night off in several years, leaving him at home in the care of our caregiver two weeks ago. He did not respond well to my absence and needed to be medicated with Ativan for several days before and after.
Dr. G.P. would like to pursue the possible cardiac problem. I have said that any invasive technique like an angiogram is out of the question given Michael’s extreme sensitivity to hospitals. I think it could even be dangerous. A simple x-ray or ultrasound might be tolerable for him but only if the procedures can be carried out quickly and without a prolonged wait time beforehand. Going out to any appointments is very difficult now.
I am guessing this apparent heart condition might be a complication of the Parkinson’s disease. Though Michael’s blood pressure on the Domperidone has improved, there are still huge daily fluctuations: his 10 a.m. reading might be 100/50 and his evening reading 183/95. There is, however, no consistency to the readings, no apparent trigger for the highs or lows. He has extreme shortness of breath with exertion, accompanied by the blueness of the lips and low pulse rate. He is sleeping much more.
My goal in caring for Michael has been to keep him as comfortable and happy as possible, and avoid hospitalization to which he has an extreme, psychotic reaction. I feed him healthy, low fat, low salt, mostly plant-based foods; in short a heart-healthy diet though he often refuses certain foods now. His bowels are a constant concern but in general I am, through diet, managing to keep him fairly regular, resorting to medications only occasionally.
We are now at the stage of focusing on the quality of his life, not the quantity. His dementia keeps him blissfully ignorant of the severity of his condition. I prefer to keep it that way, if possible, by not adding anything to his life that will send him into a psychotic meltdown. I want him to die at home whenever God sees fit to call for him. I want all future treatment to be only with an eye to improving or maintaining that quality. I know it is what the old Michael, now long gone, would have wanted.
* The Wounded Man, Gersdorff, 1528.
* The Wounded Man, Gersdorff, 1528.