A Medical Interlude

Lately, Michael's blood pressure has been playing a dangerous game of yo-yo with wild ups and downs. I usually take a reading a few times a month at different times of the day, then take an average of the readings to make sure that overall he is within the normal boundaries.

Michael was diagnosed with hypertension more than thirty years ago, before I met him.  A battery of tests was performed showing no definable cause.  He refused pharmaceutical intervention at the time, but agreed to be monitored closely for a while.  With dietary changes, such as a reduction in his salt intake, things leveled out.  It was decreed that he probably suffered from white-coat syndrome since his blood pressure normalized when he was able to visit the less threatening nurse at work for a few months, rather than the doctor's office.

Over the years of our marriage, Michael was cavalier about his health, rarely visiting a doctor, so the blood pressure went unmonitored.  I was aware of the situation and did my best to provide low sodium, low cholesterol foods. He seemed to be healthy - before the diagnosis of Parkinson's disease in 1994, that is.

Then in 2006 there was the mild stroke.  When his blood cholesterol and blood pressure were assessed, both were found to be high, so medication was prescribed.  It was at this point that we became more serious about monitoring the blood pressure, so a home kit was purchased. Medications were adjusted accordingly, especially after the heart attack in February 2007.  At that time, drugs for angina were added, and medication doses remained stable until recently.

I started noticing a drastic drop in his morning blood pressure readings, so, in consultation with the doctor some months ago, I reduced the diuretic he was on by 50%. Things improved slightly, but orthostatic hypotension was becoming a serious problem.  For somebody with mobility and stability issues already, the added instability caused by this drastic reduction in blood pressure on standing can be serious.

But lately the daily readings have been extremely erratic, occasionally dangerously high (systolic in the low 200's), at other times bottoming out to 75/58 or lower.  The resulting unsteadiness with the very low readings was alarming, not to mention the accompanying risk of dangerous cardiac issues. Another call to the doctor.  My instincts were to eliminate the diuretic and reduce the drug Amlodipine (a hypertensive and angina medication) by 50%.  The doctor concurred.  Immediately, the mild swelling of the feet disappeared, a common side-effect of the Amlodipine, I discovered.  Also the blood pressure readings rose to a more normal and fairly consistent 110/80.

The doctor mentioned that blood pressure (heart functioning) can be impaired with dementia. Curious, I started researching and discovered an interesting study in the Journal of Neurology, Neurosurgery and Psychiatry, vol. 78(7); July 2007, entitled "Autonomic dysfunction in dementia".  In the study, patients with Alzheimer's disease (AD), Parkinson's Disease with dementia (PDD), dementia with Lewy bodies (DLB: a more severe and fast advancing variation of PD), and vascular dementia (VAD: caused by a series of small strokes) were studied.

The results were interesting: In all cases some autonomic dysfunction occurred, but it was particularly common among Parkinson's and Lewy body dementia patients, with the greatest severity seen in those with Parkinson's disease. This means that all of those bodily functions that function "largely below the level of consciousness" (Wikipedia) such as heart rate, blood pressure, digestion, respiration rate, salivation, perspiration, dilation of pupils, urination and sexual arousal, can be severely impaired. The study found PDD and DLB patients had considerable cardiovascular autonomic dysfunction, with PDD showing "significantly more impairment than DLB in some autonomic parameters", and VAD and AD showing limited evidence of autonomic dysfunction. However orthostatic hypotension was common to all.

The autonomic nervous system is divided into two subsystems: parasympathetic and sympathetic. The parasympathetic nervous system (PSNS) controls "rest and digest" activities such as salivation, lacrimation, urination, digestion and defecation. The sympathetic nervous system (SNS) is responsible for the stimulation of the activities surrounding the fight or flight response (Wikipedia).

I have known about the all-encompassing effects of this disease on the body, but this study gathered together all of Michael's symptoms under the one umbrella of a dysfunctional autonomic system that the other diseases do not display, at least not as severely. This explains the constipation, the urinary incontinence, the wild blood pressure and heart rate irregularities, and the drastic breathing problems, all seemingly unrelated but now clearly part of a single malfunctioning autonomic system. I am guessing it might even be responsible for much of the anxiety and extreme fight or flight responses Michael experiences at times.  The brain is spinning helter-skelter, with none of its usual controls in place. It makes me wonder if the early blood pressure issues that were maybe caused by anxiety, in fact most of his seemingly unrelated symptoms over the years, might be directly attributable to the Parkinson's disease.  One thing is clear: the more we learn about this disease, the easier it will be to predict as we become aware of early signals.  For example, it is already well known that the loss of sense of smell together with constipation and depression might be an early indication of PD even before any motor degeneration is evident.

I am guessing that as this disease advances, we can have every reasonable expectation that all of the systems that have already shown to be dysfunctional will continue to degenerate, especially as we are seeing fairly rapid cognitive decline now; a new development, for instance, is that he must now be reminded how to take his pills each time.  Careful monitoring of medications is essential, not because we can fix these problems but we might be able to reduce their severity by removing those drugs that will exacerbate the lowering of the blood pressure and the risk of even more severe falls, "a major cause of increased morbidity, institutionalization and mortality" (JNNP, July 2007).

Forewarned is forearmed, I suppose.

High Fidelity

"I'm afraid you will leave me," was the surprising and unusually articulate response to a probing question I posed yesterday to determine whether there was any definable reason for Michael's increased withdrawal and fatigue.  Frankly, I expected a more mundane answer: a virus was lurking or his stomach hurt. But I have learned that, even if it is something as simple as a mild cold, that can be enough to unhinge his thinking and push him into the depths of paranoia and delusions. And render him oddly articulate.

I reassured him, somewhat sourly and not as gently as I should have, that I have no intention of going anywhere. I have stuck it out this far, right? Besides, I'm not the one who is leaving. He is. Has. The Michael I knew and married left me a long time ago for the demanding and unforgiving new mistress that is Parkinson's Disease.  I have simply been relegated to the post of Chief Cook, Nurse, Housekeeper and General Factotum. On occasion the old Michael will emerge, but that person has almost completely gone now and only surfaces unexpectedly, rarely and usually in the company of others, not just for me.

There was one occasion, in the throes of one of his many psychotic crises, that he actually accused me of having an affair. If he hadn't been so ill, I would have been highly offended but instead I let out a loud guffaw at the silliness of such an idea.  Even if I wanted to, when on earth would such an occasion present itself, let alone a willing partner in crime? My thirty-one years of marriage have been devoted to my children and my husband - and happily so - but it has been a busy life, affording no opportunities for clandestine affairs, especially during the past two years of very intensive care.

But his comment, quickly forgotten by him, rattled around in my brain long after.  Michael and I, over the years, have had an uncanny connection; finishing the other's sentences, sensing things before they were articulated. Michael even went into "labour" with me the first time. Most long-married couples experience this, I am sure. I don't think I am particularly good at hiding my feelings either. Perhaps everyone can read me like a book. Nevertheless, I started to think about it and felt twinges of guilt because recently my mind has been stepping out.

Lately, as reported in an earlier post, I must engage my fantasy world to assuage certain longings. During my conscious, waking hours, I can easily summon the ghost of my relationship with Michael. But it is during my nocturnal subconscious wanderings that I am seeing the change. Where, until recently, my dreams only ever involved my husband, now I am summoning other faces and bodies, some achingly familiar. I awaken feeling sad, and though I can in no way control where and with whom my subconscious decides to travel while I sleep, I am still left with a sense of my own betrayal. I miss intimacy terribly, often painfully, but I know in my heart that I would never consciously betray my bonds with my long-suffering Michael. Only in my dreams am I doing that.

So, rather than Michael merely expressing his own dark irrational fears, perhaps he is still finely tuned to me, sensing, at least on a subconscious level, that I have already taken a dangerous step away from him. And maybe I am preparing myself for the ultimate separation.

Midsummer Madness

Bold steps were taken this weekend.  Bold steps out the door and down the highway.

The approach of summer had had me worried before the season even got going.  Dread of long, quiet, hot days imprisoned at home stuck in my heart.

Michael's condition has me more alert than usual these days.  There have been some dramatic plunges and peaks in his blood pressure, making me wonder how on earth he functions even the little bit he does. I have no real reason to suspect there is anything wrong, anything more serious than the usual, that is. Just misplaced worry and anxiety perhaps, leaving me feeling mildly manic.

So this week I got tired of my nurse's vigil. When a discussion with the In-laws arose about how to celebrate Michael's mom's 87th birthday, my usual tendency to take a cautious and isolationist approach by offering to have a quiet tea here took a back seat, and I decided I wanted a fast drive, somewhere, anywhere, instead. Michael's brother lives on the other side of town, a 45 minute drive away if the traffic is good. But a pool party was on offer and for once I agreed.  What the heck. Even if the worst thing happened, how much worse could it be away from home and in another province?

Caution was thrown carefully to the wind: wheel chair was stuffed into our tiny car; bathing suits and towels were packed (ensuring that a floatation device existed at our destination so my husband wouldn't drown), drugs for twenty-four hours (you never know), a bottle of water, extra diapers, change of clothes and bandaids.  Sound familiar to any of you who have traveled with children? With all that taken care of I was ready for a wild and wacky time.

Our arrival at the pool party (which was a very small gathering of family) was spectacular, one of Michael's best. He lurched his way down a narrow path to the back of the house, falling hard on the stone and ripping open his knees. Nothing unusual in that. The path ended at a gate that opened to the beautiful patio and pool in the back. Michael negotiated the gate well enough and I gave a premature sigh of relief, thinking we were home-free for this stage at least. With a chair in his sights, he lunged toward it but fell into the small glass-topped table around which everyone had gathered. Sangria-filled glasses flew free and smashed onto the patio with the table wobbling precariously, threatening to tip over. Chairs collapsed as Michael fell to the ground, spreading his blood liberally around.  Shocked faces from family members who never see these displays. I set to work bandaging knees and mopping up blood, quietly satisfied that they were getting a look at how life really is.

We never made it into the pool. Too much effort. Michael's meds ran out quickly so he sat rigidly and silently in a chair, blank-faced and withdrawn. I swilled what I thought was alcohol-free Sangria only to find my head spinning after a sip or two, my first taste of alcohol in a very long time.  I discovered that alcohol makes me very chatty, even tiny amounts, and inhibitions drop away. I do not drink for religious reasons but I suggest that those of you who do should take an extended booze holiday sometime just so you can relive that heady first sip feeling as soon as you resume. I immediately switched to soft drinks, needing to keep all my wits about me.

The rest of the day was incident-free. Feeling emboldened by the relative success of the outing (nobody died), I thought about the possibility of a day-trip to Montreal, a mere 200 kilometres from here. Michael would have no more to do than the previous day: sit in the car there and back, get into his daughter's second storey apartment and stay put till it's time to go home.  No discussion about this embryonic plan with Michael.  I know too well how that works; he'd work himself up into a frenzy and disappointment would prevail.  No, I've learned my lesson. When feasible, last minute attacks are the best. So this morning, while he munched on his cereal, I quietly packed the same bag I had the day before, only this time with enough drugs for a week (you never know) and without swim suits. As his head started it's morning dip into his cereal bowl, signalling the time for a nap, I issued the orders: bathroom, shoes, cane, car. In minutes we were on the road, the hosting daughter hastily informed (she and I had sketched out tentative plans in secret the day before).

I love road trips. I have a healthy collection of music on my ipod which immediately got jacked up. Once the open highway was reached, I let her rip. Now, keep in mind I own a small, rather spineless little Hyundai Accent but I am a master of fantasy. Shades on, music blasting, countryside zipping by.The world was my oyster, as they say, whatever the heck that means.

Michael sat in dazed, slightly panicked silence.  I had anticipated he would sleep all the way but nary a nod either direction. I ignored what looked suspiciously like white knuckles gripping the door. I wasn't driving THAT fast.

Soon it was time for medication: skillful uncapping of the pill bottle while clutching the water bottle between my thighs, one hand on the steering wheel. The madness of Mick Jagger's "Midnight Rambler" pulsed through the car. Drugs successfully administered. There's probably a law against such practices; at least, there should be.

The journey was mercifully uneventful . On arrival in Montreal, there was a moment of panic as I settled him onto our daughter's bed for a snooze but I assured him he would be fine soon.  If not, there was an entire arsenal of drugs at hand if necessary.  The big guns, however, were not needed.

We arrived home eight glorious hours later. What a great weekend.  Michael collapsed in an exhausted heap back on the couch and snored through a replay of the Women's FIFA final game (Oops, I forgot to tell him he'd miss that). It might take all week for him to recover. His breathing on our return home was disturbing but I dismissed my worry. Whatever happens, it was worth it.

Nameless

"What's my name?" has become my fairly constant refrain the last couple of days.  It started two nights ago at the end of a good movie (I won't disclose the title for fear of ruining it for others) where the main character is afflicted with Alzheimer's disease and cannot even manage to figure out what to do with his fork. Though I had been enthralled by this excellent new film, Michael was distracted throughout, concentrating more on making pen squiggles on my bare legs, a favourite activity of late and not altogether unpleasant (except when the ink refuses to flow so Michael then works hard on my tender skin to get it going). At the end I dissolved into tears, the situation in the movie being all too familiar. And maybe a little bit from the pain of the pen nib.

He must have been paying some attention because when I tucked him into bed for the night he felt the need to recite the names of his children. The first two, born well before the onset of any of his Parkinson's symptoms and even longer before the arrival of any of the cognitive decline, were easy to remember, as are all his old memories.  But it took him a few seconds to recall the names of the youngest two. At least he remembered he'd had four.

Then I asked him my name. Blank. Hmmmm. He stared at the ceiling, willing my name to float back into his memory. Nothing.  I waited a minute or two then gave him a hint in the way of another question: "What's your name?"  No trouble there. Michael. And then in the next breath- ah there it is - Claire.

I wasn't terribly disturbed by this.  After all it has happened before. The difference this time was that he had been otherwise untroubled throughout the evening.  In the past when he has forgotten my name, he has been in the throes of some crisis, physical or otherwise, that messes with his grasp on reality and plunges him into delirium where all his brain circuitry gets muddled up.  This was a new development or maybe I had just never asked the question before under these circumstances. Maybe he never knows who I am.

The next morning I quizzed him again.  Another long pause before he could recall my name.  I suggested that he might want to work on that, maybe check the engraving on his wedding ring. It might be important to remember the name of the head nurse, and no, I don't want to kiss you right now.

I don't really mind, I suppose, but it does seem to be a symbol of the all-encompassing nature of this disease.  I sometimes feel as though my whole identity has been sucked into the black pit of Parkinson's, that I only exist in his mind as part of who he is and what his needs are, that whole Adam's rib thing.  I mostly have a pretty good sense of my identity and independence, such as it is, but it has occurred to me that when - if - there is a life beyond Michael and this disease, will I still be able to crawl up out of that deep, dark hole into an existence of Claire or will I have been completely subsumed by all that is Michael?

Floods and Arks

Last December I had a series of dreams involving large amounts of water and violence. The general theme of the water dreams was always that of being swept away in a storm, losing control of whatever situation I was in but always in the most literal way: a house I was in was lifted from its moorings and carried away on a deluge, or in another I was swept to safety from my flooded house on a raft or door down a street that had turned into a river, with people waiting to rescue me and my family at the end. There was another with gunfire from which I was able to hide.

Never was I alarmed by these tempests.  In fact the prevailing emotion I had was of control and a sense of challenge on how to deal with the latest calamity. And never was I trying to resist the tide either; I was controlling what I could, protecting myself and my family successfully in an otherwise uncontrollable scenario.

On analyzing these vivid, unforgettable dreams I was puzzled at first, thinking they were just an indication of an emotional flood I needed to experience.  Then a terrible tragedy occurred where a dear friend was killed in circumstances that mirrored the events in the trilogy of dreams, at least symbolically. At first I thought the dreams had been prophetic, preparing me somewhat for what did happen a few days later. And these dreams did comfort me, seeming to point out the inevitability of the tragedy that befell my friend. You might think I was "dreaming" about the meaning of these visions and well I might have been. I don't think it matters whether or not they were prophetic; their purpose was perhaps only to give me some comfort at a difficult time.

But lately I have been thinking about them again as we faced a literal flood of our own this weekend, indeed as many people the world over have been experiencing. We had the rainstorm of the century over a twenty-four hour period that left many houses if not completely destroyed, as in one case I heard about, then at least severely damaged.  Very few people in the swath of this storm were left untouched.  At the very least, most of us dealt with badly flooded basements. Many were left feeling unhinged and overwhelmed by the deluge, struggling with the physical demands of cleaning up a huge, soaking mess in the aftermath.  Roads were swept away in the torrents that roared down streets and driveways, including our own, though ours mercifully remained intact. At one point I looked out and our entire acreage was nearly underwater. A lake had formed where there had been lawns, roads and ditches.  My neighbour wryly noted that if she had been quick about it, she could have stuck up a "For Sale" sign, claiming waterfront property. I noted that if the rains had continued she'd have had a houseboat for sale instead.

The flood, of course, was nothing on the scale of those suffered by others this year, such as in North Dakota or along the Richelieu River in Quebec to name just a couple.  But it took us all by surprise since the forecasts I heard were calling for "thunder showers" and "drizzle", not the 120-160 mm of water that fell over a couple of hours in parts of the region.  More along the lines of "monsoon" I would think.

We were mercifully lightly touched compared to many, but there were some anxious moments as the water poured into my house through a basement doorway the first night, and on the second day, the power failed for two and a half hours, rendering the sump pump in our basement useless.  With the water table so high, it was only a matter of minutes before the water rose up and spilled onto the basement floor.  My son (who had rushed home early from work) and I made a futile attempt to bail out the sump pit, hauling buckets of water well away from the house, but the effort was like a scene from the "Sorcerer's Apprentice". The water rose up faster than we could manage.  Finally I declared it was useless to continue and sent my son out to find a generator at a hardware store, thinking that, otherwise, the entire basement might fill with water before the power came back on. William drove into the city during another heavy bout of rain, tackled dreadful traffic, all the while wondering if the roads might be washed out upon his return, but he did successfully snag a generator for us.  As it happened, the power came on before he returned and the sump pump resumed the heavy task of pumping out what was now a couple of inches of water covering the entire basement floor, far less than I had prepared myself for. It took us hours to push the water toward the hole, vacuum up the residue, then set about drying the floors with an assortment of old sheets, towels and blankets I had kept for just such occasions (we've had various water mishaps in the past involving broken sump pumps and a malfunctioning washing machine).  In total, with the two days of flooding and subsequent clean-up, we put in over three days of hard work. But, having had a few smaller water calamities in the basement before, I had flood-proofed it as well as I could so that nothing of value lay close to the floor. Since our basement is unfinished, the clean-up was fairly quick compared to neighbours whose carpeting and belongings are still being dragged out of their homes and insurance claims are being made.

Apart from a few moments of despair, I remained calm, just as I did in my dreams about floods, not that the danger in real life came anywhere close to the frightening scenes of my subconscious.  It helped that our very competent son was on hand for most of the mess and without whom I would have had a far more difficult time of it. Not the least of my worries was Michael who, in the past, has had emotional washouts over similar calamities. I needed to keep him calm and reassured that all was under control. Perhaps it is a sign of how advanced his cognitive degeneration is that he was singularly unperturbed and seemed to approach it like a young boy splashing in the water. At one point I found him outside digging trenches in the mud and I decided that since he was neither doing himself nor our situation any harm, he could carry on.  At other times, he quietly sat watching television (when we had power), as always. The only alarming thing for me was hearing his falls from my position in the basement beneath him.  I hadn't realized how thunderous it is when he tumbles, and each time I held my breath to hear him get up safely again.

What struck me about the entire calamity was how good I felt when the sun finally emerged and I could declare there was nothing further to be done beyond keeping the dehumidifiers going non-stop to dry things out.  In the process of the clean-up, every nook and cranny of the basement was exposed and dried out, and sometimes a problem was revealed that needed fixing, such as my discovery that the dryer hose was broken. All kinds of soul-cleansing metaphors and images of bringing light to dark places sprang to mind during my rigorous clean-out.  The increased isolation I felt for those few days of all-consuming work evoked thoughts of the Biblical family isolated on an Ark and the joy one must feel at the end of such an ordeal, upon hitting solid ground.  It felt like we had emerged from some spiritual darkness swept away by the drying sun. If nothing else, I at least now have a cleaner basement floor and maybe even a slightly stronger spirit.

These Hands

My hands have served me well and continue to do so. But they are stiff and are becoming gnarled and enlarged. I have one that holds my witch's finger, so bent at the knuckle. Arthritis, I'm told. I'll just have to live with it. The pain is manageable, just annoying. Mild medication helps if I need them to be reliable and not give out on me, not feel like shattering glass if I bump them. On an otherwise strong and healthy body, these hands, which were once my strength, are becoming my weakness.

These hands are my history.

These hands let me play as a child, turn my jump rope, dress my dolls, toss knuckle bones and jacks. They have grasped the chains of the swing that carried me high so I could leap off into the sand below, my hands cushioning the fall. They climbed trees and shinnied up a playground pole. They landed on the hard gravel from a wobbly bicycle and brushed off my torn knees. My hands knew only blissful childhood freedom.

Before computers, when all had to be written in a neat schoolgirl hand, my right middle finger developed a large calloused bump from the pressure of the pen. These hands have felt the heft of many books.

These hands have always wanted to work. They have hauled heavy loads. They have shoveled driveways and skating rinks, dug deeply into garden dirt, planted flowers, vegetables and trees; they have pulled millions of weeds, raked and mowed lawns, pruned trees. They have carried and stacked huge piles of wood for winter burning, then rubbed sore backs. They have been speckled with paint and have assembled and taken apart many things. They have knitted sweaters, socks, toys, blankets; they have sewn a multitude of small clothes. They have hauled and sorted seemingly limitless bags of used clothes for charity work.

They have held and been held. They have gripped in ecstasy.

These hands have held four babies at the breast, mourning a lost fifth. They have dressed small children, changed diapers, built tall block towers, laced skates, lifted small bodies. They have taught the three R's. They learned to do many things at once during busy years. They have cuddled and stroked while holding the story book. They have comforted one while wagging admonishment at another, and sometimes, regrettably, they have smacked a small bottom.  They have cooked countless meals, washed dishes, floors and windows, and enough clothes, bedding and diapers to make a mountain. They have cut wispy hair and twisted many braids; they have bathed and towelled dry little people. They have bandaged injured elbows and knees, then wiped away tears. They have nursed through many a night of sickness. They have carried the heavy belongings of now grown children into new lives.

They have trained four cats (not well) and two dogs (more successfully). They have sunk into soft fur.

These hands have helped me glide across the river during solitary swims. They have gripped bicycle handlebars and ski poles and racquets, lifted weights, stretched in yoga and Tai Chi, thrown a crooked bowling ball, slugged a baseball bat, bounced on a trampoline with joyful children. They have laced my own skates as well as those of smaller feet.

As adult hands, they learned to drive, to shift the gears of the car and of life.  They learned the new technologies, at least a little bit, allowing me to write, to listen to music in my own little space, to learn about the world and stay connected to it.

Untalented hands that recognize and appreciate talent in others, they have applauded loudly and enthusiastically.

These hands have clasped and consoled the hands of the dying.

They have loved, comforted, shaken in anger, caressed in tenderness and passion. They have held my tearful face and that of my husband; they have pounded the floor; they have railed at God; they have been pressed together in prayer, gratitude and submission. They have held my stricken husband and calmed his terror. They have steadied his lurching Parkinson's body, lifted him from the floor when he falls, propelled him in a wheelchair when he finally submits. They have cleaned him in ways I thought I'd only have to do for my children. They have bathed him, dressed him and tied his shoes and skates. They now attend to his every need.

These hands are tired, in need of rest. But I fear the cessation of busyness. I fear they will seize up completely when no longer needed.

I would rather endure the pain.

Stone walls and iron bars

Stone walls do not a prison make,

 Nor iron bars a cage;

Minds innocent and quiet take

 That for an hermitage;

If I have freedom in my love

 And in my soul am free,

Angels alone, that soar above,

 Enjoy such liberty.

Last stanza of "To Althea, from Prison" - Richard Lovelace


Moving day. Daughter number three, who has been living away for a few years, has moved into a new apartment in Montreal and has taken the rest of her possessions from home with her.  A great big van was booked for the occasion. We packed up in the morning, leaving Michael behind for the day with his caregiver, then drove off to Montreal.

We have done this before, she and I, to and from university. In fact I've repeated this job several times with all but the youngest so far.  It is an expedition I rather enjoy, a special bonding time with the child who is leaving.  When the move is complete and good-byes are being said, there are usually more than a few tears as yet another one flies away to independence. With this daughter already well launched into her life in Montreal - three years of university and now a full-time job - there was only happiness this time for this independent young woman. I have shed my tears for her already as I have for her sisters.

At the end of the month comes the last move.  Alas, I cannot assist much with this one because our son is moving to Toronto for a job promotion, and where a move to Montreal is an easy day-trip from here, not so a trip to Toronto.  I've done it twice before for the others and it requires at least an overnight commitment, something I can no longer do. I will have to content myself with assisting all I can from this end to make his departure as smooth as possible.

This is my baby who is leaving.  Though we rarely see him with his busy life, it is the idea of his never being here that I struggle with.  And the knowledge that this is the last. The nest will be well and truly empty.

I'm imagining all the vacant rooms we will have, two of them already only filled on holiday visits.  I am trying to envision other uses for them, but it is a relatively large house and Michael and I need only a few rooms.  Michael's life is confined to the main floor which has been fully adapted to his needs.  I occupy my sanctuary on the second floor but only really use three rooms: bedroom, bathroom, office.  That leaves three others, large gaping holes.

Will we stay here? Is it worth keeping a large house for the rare occasions that all the kids are home together? These are questions I do not need to answer yet. A move for Michael now would be catastrophic. Even slight change can be life-altering for him, so it is impossible to consider such a thing, unless, of course, something happens to me and I can no longer manage the work.

He loves our home, as do I.  We have lived here twenty-two years and have truly made it our own. Besides, it is now so well adapted to his needs, it would be difficult to find anything comparable. It is our own small paradise, nestled in a little village between the Gatineau hills and the river. Over the past year, with little else to do, I have been able to cast my gaze farther than my indoor domestic duties, which were always my chief concern, still are. I have been able to focus on the outside, restoring it to the sanctuary it was before the years of adapting to the harsh new reality of Michael's illness left it sadly neglected.

Financial constraints might be a deciding factor for a move but for now we are secure.  Michael collects a decent pension from a full career with the federal government, and, though it isn't a princely sum, we have always lived frugally and continue to do so.  I am grateful I do not have to concern myself too seriously with money matters, one less thing to worry about.  I manage all our finances, of course, and I am confident and secure that I can take care of my husband in the comfort we now enjoy for the foreseeable future.

With the long-term financial concerns under control, what worries me more are the short-term issues. With a long summer ahead and both of the youngest truly gone, I am thinking of the increasing isolation and quiet.  Laura has always been home for summer jobs, William has always just been here.  The walls are starting to feel closer already, highlighting the prison sentence this disease has imposed on us both. At least it is summer and the large yard allows us to expand our living space.  So, though we are confined to our property most days, it is a prison-paradise for Michael to wander through and enjoy when his medications allow.  I believe it gives him a sense of peace and stability that I too enjoy.