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Sunday, August 28, 2011


Though I like to think of myself as a quasi-vegetarian, there is no denying the occasional craving for a bloody steak now and again.  This afternoon we were out and I decided I really didn't want to cook - ever again, if I were pressed to admit - so I suggested a meal out.  After laying before Michael all the acceptable options - fast food preferably but I might consider a real meal at a real restaurant if the service was quick - he hesitated for several minutes then uttered one word: Steak.

Poor Michael is not a vegetarian even though he is subjected to tofu-this and soy-that on a regular basis. Many years ago when I served my rather tasty tofu cutlets for the first time, he declared it was akin to eating erasers.  Too bad. All future meals of tofu cutlets were then served with copious amounts of chutney for his sake. I won't say he came to love them but he learned to be a good boy and choke down half a cutlet with gobs of sauce and large glasses of beer in the days when he was still allowed such pleasures.

But when the idea of steak was presented to me, my hungry taste buds went into overdrive.  As we were heading back towards home at this point, I quickly racked my brain for a suitable restaurant. It was only late afternoon (we had skipped lunch) so the crowds would be minimal making our arrival and departure less of a freak show for the assembled diners.

I declared this first meal in a real restaurant in over a year and a half to be a celebration of that anniversary I wrote about a couple of weeks ago. A year ago on August 30 I busted my husband out of hospital, leaving a trail of bloodied floors, wounded nurses and annoyed doctors.  He was not released on good behaviour, I can assure you of that.

We were celebrating something else too, though Michael was unaware of the significance.  We were returning home from a visit with his 87-year-old mother who was rushed into hospital over three days ago with severe pain in her leg, tachycardia and an elevation in her white blood cell count, though the last two symptoms were only discovered at the hospital.  She could not walk and had to be carried out of her home on a stretcher. This poor woman, who has been fiercely independent in her own home until now, was lying frightened and disheartened that nobody could figure out why the pain in her leg is still so bad, rendering her completely unable to walk. Obviously, if the problem doesn't sort itself out, she cannot go home and we will have to make other living arrangements for her.  Like so many of her generation, she has no intention of living anywhere but home, though now she is at least open to the idea of a few days in a convalescent home if necessary once she is discharged.

I have visited her three of the past four days in hospital, the first two with the help of a friend or our caregiver to sit with Michael.  I had little desire to risk taking him in to see his mother while she was languishing in the emergency ward but resolved to take him if and when she is transferred up to a proper room on a ward.  Well, that hasn't happened yet; the hospital she is in is so overcrowded there simply isn't a bed for her. When I spoke to her this morning on the phone, she sounded so unhappy and frightened that I couldn't bear leaving her there all day alone. So early this afternoon when he was finally mobile, I packed Michael and his wheelchair into the car and off we went.

Emergency wards, in fact all things associated with hospitals, are anathema to Michael, as you may remember. Both his mother and I had agreed that he would not visit her there, but since the likelihood of her ever being transferred elsewhere during this stay is slim, I decided to risk it.

We stayed well over an hour with my mother-in-law who seemed genuinely happy to see us and our pile of newspapers and books, despite her frustration, fatigue and fear. Michael was perfect, not the least bit perturbed, so we have promised to try again tomorrow.

A celebration of a thick, juicy steak was definitely in order.

The Agony of Reading

I don't read much anymore. I'm not sure why because it used to be a consuming pastime. I blame the constant babble from the television set. But on the rare occasion when I do get completely absorbed in a book, the drone is easily blocked out. When that delicious moment happens, it is an effort to attend to the frequent interruptions of Michael's needs and the dogs, who are so spoiled by our constant presence that they have me well trained to jump whenever they need to pass through an outer doorway. Maybe I've just partly solved the mystery of why I don't read - frustration.

But today I finished a book that held me in rapt attention for the few days it took to read it, and I am eager to read this author's second novel. "Still Alice", by neuroscientist Lisa Genova, is the story of Harvard professor Alice's rapid descent into the severe dementia of early onset Alzheimer's disease, somewhat mirroring another famous Alice's stepping into the crazy world beyond the looking glass. It is a heart-wrenching but, I believe, accurate account from the patient's perspective of this terrible disease and how it affects all her relationships, professional and personal, but especially the relationship with her husband.

Though Michael is not afflicted with classic Alzheimer's disease, the dementia he experiences is very close to what this woman suffers, though her descent is far more rapid and is not, of course, accompanied by the same mobility issues of a Parkinson's patient. Otherwise, many of Alice's challenges closely mimic my own poor husband's. It was difficult to read the story from Alice's viewpoint and see articulated all the horrors and awareness she possesses through it all, at least in the early stages.  It made me wonder, if Michael had been able to articulate his own experience, would he have expressed the same devastation?

As well as my sadness at reading about Alice's plight and inserting my own husband's unspoken pain into her words, I came away feeling very angry.

Alice's husband is also a well-respected Harvard professor who, upon hearing of his wife's unbelievable diagnosis, throws himself into learning everything he can about the disease to advocate for her. He does this very well at first.  He loves his wife and wants to do all he can to help her.  But his life is a busy one with many hours spent at his university lab conducting research experiments and weeks away at conferences.  His work, of course, is very important, as was his wife's.  They had even collaborated on a significant book together.

As the novel progresses and Alice's disease moves forward with terrifying speed, John becomes more frustrated dealing with her developing idiosyncrasies. He is even disgusted by an episode where she collapses laughing on discovering she cannot get her sports bra over her head because, as John points out, it's a pair of underwear instead. He spends more and more time away from his wife whose sense of abandonment is palpable. Finally, John is offered an important job in New York that he decides to take even though his wife's stability depends on her familiar surroundings. She, while still able to, argues her case, but he has made up his mind. In the end (***spoiler alert***), he goes, leaving his wife in the care of his three very busy adult children and a weekday caregiver. Alice is able to remain at home.

This is when my blood boiled and I had to put the book down.  Not that I blamed John for pursuing his career. On the contrary, I envied him. He had three adult offspring unrealistically ready to jump in despite busy careers and families of their own. As well he had ample financial resources for expensive outside care. And apparently little guilt or concern for the others who had to shoulder the burden for him. That was the sticking point for me.

Is it guilt that makes me so reluctant to hand over Michael's care to an institution, given the limited options for homecare?  My social worker is offering more weekend respite since well-meaning volunteers have nearly completely dried up over the past several months.  Understandable. They're tired, busy and have lost interest. Like John, it's time to move on.  But I now realize I absolutely must have at least one day per weekend when I can count on getting out for a walk with the dogs. So, in the middle of yet another silent weekend, I have resolved that I will call her back on Monday morning to get that set up.

If that is not enough, she is also offering temporary or permanent institutional care for Michael.  I am baulking. I cannot do it. Not yet. That's when I get angry at this fictitious John, or is it with myself for not having even an iota of John's determination to carry on without his wife?  Is this a gender issue, where women are more likely to give up everything for their mates? Perhaps it is. I am fairly certain that if the tables were turned in our family and I were the sufferer, my husband would NOT give up everything to take care of me.  Our early days of childrearing taught me that; Michael's life, apart from giving up a few parties and enduring a few sleepless nights, changed far less than my own. No, if he were still physically and mentally well, he would no doubt be working and fully immersed in his sports, his defining activities. In fact, during those most rigorous years of childrearing, Michael actually travelled far more for business, something not altogether coincidental, I suspect.

On analyzing my motives, I believe they are pure. I cannot bear to think of Michael suffering in institutional care which has only been his experience thus far.  In recent years there have been no positive moments of separation from me, except for those spent at home with a caregiver, so I can only believe that would continue to be the case. Some have wondered if he might "get used to it" but past experience has taught me that his condition of extreme psychosis worsens with time. Part of my reluctance is an unwillingness to knowingly subject others, albeit professionals, to his inevitable violence and irascibility when I know he is calm and happy at home with me.  It would be a cruelty to all concerned, including me who would undoubtedly be called upon frequently to calm the wild beast.  At least, that's how it has played out every other time.

Perhaps my anger was just an expression of the injustice of this disease, of any disease that affects an entire family so completely and mercilessly. I was angry that John could walk away and I cannot. I was angry at Michael's complete and utter dependence on me alone. I was angry because it's Saturday and another long quiet weekend with the television blaring.  I was angry and wondered if I should give up the sometimes painful stimulation of reading and just succumb to the numbing boredom.

Thursday, August 18, 2011

Mirth and Meditation

The bedtime ritual at our house is immutable. That is the secret to a successful, peaceful night, as all parents and caregivers well know.  To change a single step can spell disaster or at least supreme annoyance and frustration.

Tonight was a usual night.  At ten o'clock Michael shuffled into the bathroom to perform his nightly ablutions. Only a few falls on his way this time. Then a short shuffle into the dining room where his bedtime medications await, another essential component of the peaceful night.  Usually he needs to be helped through this process, his tired mind unable to remember the few steps required to take his pills. Then it's off to bed.

I have pared down the nightly ritual considerably from when I first started all this a couple of years ago. By bedtime I am restless or tired and ready for some much needed time alone. So I have dispensed with the book reading and now only recite a couple of prayers, trying hard to focus on meditation and not bolting impatiently out the door.

All was going smoothly until a loud bang echoed through the night.  A local had decided to let off a few firecrackers or else someone was discharging a firearm (not unheard of around these parts, especially from bedroom windows during hunting season). I was betting on the former. It's a fairly common occurrence in our neighbourhood but usually the immediate locals are too impatient to wait until dark, somehow finding daylight explosions more fun.

Now, my dogs are terrified of this particular noisemaker, especially if it's dark.  I had just gotten Michael into bed and was about to cover him lightly for the warm night when the bang occurred. The dogs, who sleep just outside Michael's room, started madly scratching at his door.  Oh, all right, tonight you can come in, but just for a while.

Both dogs charged in, momentarily forgetting their fear in favour of sheer joy at being allowed into hallowed territory, not believing their good fortune. Much dancing and hopping about, with tails wagging madly.

Prayers are the next step in a peaceful preparation for sleep.  I pull up a chair next to the bed, recite the prayers, then slip out for the night.  Here's how successfully that went tonight:

"I bear witness, O my God"-snort, snort, snuffle, a giggle from Claire - "that Thou hast created" -LOUD horking of nasty hairball  - "me to know" - pant, pant, pant, whine - "Thee and to worship Thee." - Claire's shoulders shake with laughter, trying hard to concentrate on the solemnity of the moment - "I testify, at this moment" -scratch, scratch, scratch - "to my powerlessness" - loud guffaws of laughter from Claire who must breathe deeply for about a minute to refocus, and then VERY quickly - "andtoThymight/tomypovertyandtoThywealth/ThereisnoneotherGodbutThee/theHelpinPeril/theSelf-Subsisting" - PHEW - then Claire's total riotous collapse.

The dogs take this mirth as their cue for general silliness.  The smaller one tries to leap onto Michael's bed but has miscalculated with the security bars in place for the night and finds himself dangling then falling backwards onto the floor. He retreats under the bed, feelings and stomach no doubt bruised. The bigger one continues his anxious heavy breathing at my side, gradually settling as I stroke him with my foot.

The ninety-five meditative Allah-u-abha's I recite each night, which have become Michael's calming lullaby, I managed to get through by sheer willpower and no further explosive laughter. Finally I was able to lure the dogs back out to their own beds with the promise of a cookie and left Michael somehow settled for the night.

God loves a good laugh, I figure. Besides, it was the first moment of wild, silly mirth since my meltdown a week ago. It felt like the veil had been lifted.

Tuesday, August 16, 2011


A few unexpected shudders of tears, nothing I couldn't control, only the usual quiet murmuring of sadness. I locked eyes on the television screen banality to banish the now increasing babble of my brain.

Rolling waves rushed in, washing rhythmically over the shore. Still controllable, a nice rainy day feel.
But that was just the warm-up for the storm, a violent, unexpected, pummelling gust. A howling, moaning wind tore through me. A roiling, merciless ocean poured out of me. All life around me trembled from the force of the outburst; a wild horse kicking, bucking, running amok.

Then a gentle hand of God lay on my body to still the torrent. The storm weakened, the waves ebbed,
my body left ravaged and beaten, emptied and cleansed.

Sunday, August 7, 2011

An Anniversary

We are marking a significant anniversary this month; at least, I am. I realize I may be jinxing it by announcing it a bit early - by announcing it at all - but the end of this month will be a year since Michael was released from hospital the last time. Now this may not seem that important to the casual observer, and I'm fairly certain Michael has absolutely no awareness of its significance, but to me it is huge. An entire year without a single visit to the hospital is a record for Michael over the past several years. And I intend to keep him out.

As you are no doubt aware from your patient reading of my accounts, the past six or seven years have been defined by our hospital visits. And there have been many: a heart attack, suspected heart attacks, a mini-stroke, a kidney stone (affectionately dubbed Pierre), bowel obstruction, weird breathing issues, psychotic melt-downs. That's not counting the many trips to Montreal hospitals for those dastardly consultations for Deep Brain Stimulation. In short, rarely did a couple of months go by without a visit to our friendly healthcare professionals whose gentle natures and kind smiles turned brittle and wary over repeated visits as they came to recognize my dear husband, knowing that his arrival guaranteed a turbulent shift.

It is thanks to the support of a wonderful team of nurses and a doctor assigned to Michael's home-care that we have been able to keep him safely out of hospital.  It is also a recognition on the part of all those concerned that my husband's wellbeing is seriously endangered the moment he crosses the threshold of these institutions and that, no matter what befalls him from now on, he is far better being treated at home than abroad. Of course, if he were to break a limb, heaven forbid, I will have no choice but to take him back, but for almost everything else - and I mean everything else - we have all agreed to keep him comfortable and happy at home, no matter what the consequences might be.  With someone whose mental state is now so very fragile, I have come to realize there are worse things than dying comfortably - and perhaps prematurely -  at home. I have become a firm believer that Quality is now preferable to Quantity.

This past year, as you know, has not been without its challenges even without the hospital visits. Many times I have had to phone the on-call nurse to consult on urinary tract and breathing issues, but each time, if required, a prescription has been dispensed with a nurse sent out to check Michael, then report to the doctor.  Have I said yet how grateful I am to these kind souls who brave nasty weather and late hours to come to our door, always with a smile and a soft manner? Never has Michael lashed out at one of these valiant home-visit nurses and yet the same cannot be said of their hospital counterparts who may still bear the wounds from physical and verbal attacks thrown by my normally gentle husband.

I pray that Michael will one night just slip away in his sleep with only calmness and serenity in his soul. I have seen too many of his nightmarish delusional attacks accompanied by devilish hallucinations to wish that kind of fear on anyone at their end. And I know that is exactly how he would leave this world if he were to spend his last hours in a hospital.  I pray, too, that I can hang on long enough to grant him that kind of peaceful departure whenever it might come.