Dear Michael

Dear Michael

I know there is little point in writing this.  You won't read it and even if you could, I'm not sure it would sink in. I tried ever so gently to broach the subject last week but I got no response from you. Did you even hear me?

Your daughter is getting married next month. I know you are somewhat aware of that because you often ask if the event is tomorrow or in her home town far away. No, the wedding is in three weeks and it will be here in Chelsea because you cannot travel, remember?

Sometimes you wander around the house in confusion. When I ask you what you are looking for you tell me you need to get dressed for the wedding and you cannot find your clothes. You've forgotten that your good clothes are upstairs in the spare room closet. I'll make sure you have everything you need on the day.

Is your anxiety about this already starting to mount even though I am trying not to breathe around the subject?

It is going to be a busy time the week before with all four kids, most with partners, arriving throughout that week. The house will be filled with their noise and excitement. There will be other family too, none staying with us, but I will want to visit with them before the wedding day: my niece, whom I haven't seen since long before my sister/her mother died last year, and Anna's in-laws whom we haven't met yet. My attention will most definitely be directed away from you much more than usual and I know how difficult that is for you.

I have arranged for our caregiver to be your date for the wedding, to take you the short distance back home so you can relax and be away from the wildness of the day whenever you need to. She will stand in for me and look after you as well as she always does. You can come and go as you wish.  It would be really nice if you can at least see your lovely Anna married, even if you cannot manage the rest.

I am bracing myself for a difficult time, but, oh, how I want it to be okay. I've had to miss so much in our children's lives the past few years because of your extreme sensitivity to change. They are all so understanding and accommodating.  I try really hard not to let it bother me but I am feeling a tiny bit of fury welling up inside that I hope I can suppress. I know it's not your fault but with every single family gathering lately, even very minor ones, you have an inordinately serious reaction. I know this event will be no different. In fact, I am prepared for it to be much worse because it is on a much larger scale than anything else you have had to deal with the past few years. I have kept you very protected.

So here is my request: I want you to try very hard to stay calm, to not spiral into your usual psychotic vortex whenever there is any change in your protected little bubble.  I know the kids are prepared for your insanity and the accompanying mystery ailments. Anna has even arranged with the presiding minister to shift the ceremony to your bedside if necessary, but it would be really nice if she doesn't have to. The list of invited guests is short for your sake, but it will still be bigger than anything you have seen in a few years. Please let her have her day peacefully. Don't let this be a day of Michael Drama. We've had far too many of those.

If you can somehow manage to stay calm and serene through it all (I will have your arsenal of medications at the ready just in case), I promise to be ready and willing to give you my complete and undivided attention right after everything is over and returns to normal. You can fall apart to your heart's content then and I'll mop up the mess as I always do.

I love you no matter what. You know that. But let's both try to enjoy this very significant time in our daughter's life. Let's be normal for just one day. Please?

Love, Claire

P.S. By the way, your son is getting married in September.

*The Interrupted Wedding, Edmund Bristow

Fine Dining

She sits at the table alone.  The call for dinner has been made but when he loses himself in a little project, there is little hope that her call will penetrate quickly. No matter. Mealtime is always spent in silence. She, having long ago given up attempting conversation, has her head buried in a book but more likely a puzzle, which can be abandoned quickly with less frustration than a book when she must inevitably jump up to attend to one of his many needs throughout the meal.

Minutes later, he emerges from the basement where he has been fiddling around on the workbench.  All dangerous tools have been removed. When she checked on him earlier and gave him the dinner call, he was lost in a mysterious task involving duct tape, his walking stick and a screw driver.  Best not to enquire, she has learned.

He falls hard at the top of the stairs. She masks a wince, never having gotten completely used to the many tumbles he takes every day.  Lately they have been harder, more severe, though, miraculously, he still never hurts himself.  His kneecaps are leathery, misshapen and thick. He lunges toward his wheel chair parked at the table. Thankfully, one of them had remembered to put the brakes on it earlier.

Seating him can be a problem some days. Tonight he has perched on the edge of the seat, only one cheek actually making contact. She urges him to adjust himself before he falls. He ignores her. She returns to her seat, long past worrying about the consequences.

His meal has cooled. It isn't one he particularly cares for, she knows that, so he probably won't eat. She wonders bitterly why she bothers. He smothers his potatoes, tofu cutlets and carrots in heavy dark HP Sauce that he has mistaken for gravy. If it hadn't already been a foregone conclusion, he most certainly won't eat everything now.  Only fit for the dogs, she sighs resignedly.

She finishes her meal only minutes after he has joined her at the table. She might as well begin cleanup because she cannot leave the room. Lately his needs have escalated. This being his most mobile and distracted time of the day, he frequently jumps up and stumbles toward the kitchen in search of something. He can never find it, nor can he articulate his wishes.  She must guess and not show her frustration. He stumbles back to his seat, fiddles around a bit more with his food then leaves the table for the living room, his meal barely touched. After several falls, he settles on the couch. He grabs the ever-mysterious remote control and makes a few wild stabs at the buttons, peering at it as though he has never seen such a thing.  She glances at the clock, sees that it is time for Jeopardy, then rescues him from Remote Control Purgatory. He possessively snatches the gizmo from her and resumes his study of the buttons. She knows she will be back in moments to help him out again.

She returns to the kitchen to scrape away his meal and finish cleanup.

The dogs are happy at least.

* "Bummer and Lazarus", Edward Jump, c. 1861-1865

An Invasion

No cardiac condition. No spinal stenosis. No nitroglycerine or nitrate patch. No drug reductions. All is well.

At least, as well as things can be under the circumstances.  It was a very stressful week as Michael struggled with extreme pain in his left arm that by yesterday morning was so bad he could not move around under his own steam and had to be lifted into and moved around in his wheelchair.  My back was starting to show signs of strain as were my nerves.  I am as prepared as I can be for Michael to leave us but to watch him suffer while feeling so powerless to help is excruciating.

The home-visit doctor ordered a blood test to rule out cardiac activity because the blood pressure was spiking dangerously by Wednesday and the pain was moving ominously down the left arm. I waited anxiously all day for the call because a positive result for cardiac malaise would mean treatment of some sort, and I needed to brace for the fallout any such action might create.

In the meantime, the neurologist weighed in that Michael's Parkinson's cocktail of Sinemet and Stalevo must be the cause of the dystonia so I was advised to reduce Michael's Sinemet dose by 50%. I refused to take any such action until I had heard the results of the cardiac blood test which came in two hours later. The good and bad news: no cardiac problems.

This is always the way with Michael.  He presents wildly exotic and dramatic symptoms, such as severe breathing problems, chest pains or violent abdominal cramping, but after all the tests are in, there is usually absolutely nothing to point to as a direct cause of his suffering. Except, of course, the complexity of Parkinson's disease. Helplessness and confusion in the face of an untameable force.

After hearing about the cardiac results, which came in over my cell phone while I was trying to relax over coffee with a friend, I decided to follow the neurologist's advice. On returning home, however, our caregiver reported that Michael had been pain-free all afternoon.  He most certainly looked more alert and happy than he had for many days. I wondered if somehow he had telepathically picked up on the news from the doctor and had relaxed his worry. With this positive development, I decided to sit tight and do nothing. I would reassess in the morning.  Why deny Michael the only medication that allows any quality of life for him if we didn't need to.

On thinking it through last night I came to the conclusion that this was probably something quite minor but exaggerated under the Parkinson's magnifier. Every small thing in Michael's life becomes huge whether it is a change in his routine, a houseful of family invading our normally quiet, reclusive life, a cold or a urinary tract infection. All of these things in the normal, healthy person create little disturbance but for Michael they destabilize him completely, causing blood pressure elevations, hallucinations, delusions and panic attacks; all seem to warrant emergency attention. And then, POOF, all is well again when the system sorts itself out, often many anxious days later. To quote Michael's doctor who checked in yet again this afternoon (I could kiss him), "the tincture of time" cures a great deal.

While this all could have been precipitated by a happy houseful of family last weekend, my layperson's theory is this: Michael has a tendency to list heavily to his left side whenever he is sitting upright. It is a huge problem in our tiny car. My driving style is, while shifting gears, to give him an occasional sharp poke with my elbow to remind him to sit up. Otherwise I have him sleeping in my lap. Whenever he is on the couch, I often find him completely tipped over, sound asleep, wire-frame glasses horribly twisted. I think it is possible that after several years of this he has injured that muscle in his upper arm, causing a temporary muscle cramping. It is also, by the way, the arm I hook with my own every morning to haul him up to a sitting position on the bed, perhaps causing strain.  Given that almost all of his medications have, somewhere in their long lists of side-effects, dystonia or some kind of muscle pain, even if very rare, I think it is possible that with the toxic chemical mix in his system, a small muscle injury can suddenly morph into a seriously painful event. This pain has lasted seven days now with finally nearly no pain today.

While it is warranted to suggest cutting back on any one of these many drugs, whether it is the Motillium, the Sinemet, the Clozapine or even the Crestor, the bottom line is that these drugs not only cause a great deal of suffering from side effects that might ultimately kill him, they, on the other hand, are the only things keeping him alive. A Catch-22 situation if ever I saw one.  So, despite the advice of two doctors to reduce his drugs, Michael is now back to full dosage. I will experiment with the Sinemet reduction if this problem ever resurfaces, but in the meantime, Michael needs to have as much freedom and mobility as these drugs provide. It is the least that he deserves.

My response yesterday to his improved condition was not unlike a person awaiting news of a loved one who hasn't returned home at the appointed hour, only to stroll in nonchalantly hours later. I simultaneously wanted to hug him to pieces and punch him in the chest. The latter response I managed to control. It would serve no purpose because he emerged from the crisis completely oblivious to the concern he had created.

The murder and mayhem in my kitchen cupboard as I reluctantly took action against an invasion of mice seemed an appropriate undercurrent to our tempestuous week. I felt that I was battling forces over which I can only take temporary, illusory control but which ultimately threaten to overtake my home.

* Kuroneko Yamato, 1808, Samurai and Mice.

Playing House

I am in love with Michael's doctor. No, not that kind of love. I barely know this guy, Michael's home-visit doctor, whom we see at most twice a year with occasional phone consultations between visits.

I rarely make direct contact with this fine fellow when I call. Usually a message must be left, then I wait anxiously by the phone, sometimes days, while some new, often mysterious development in Michael's condition unfurls. I only ever call when it is something serious. Otherwise I'd be on the phone daily which wouldn't be right, as much as I would love to have someone to bounce off my theories and concerns all the time.

The anticipation I feel over that awaited call is akin to the nervousness one might feel listening for some adored boy or girl to finally call. I get nervous. I want to choose my words well and get my message across clearly.

Lately, Michael has stumped us again.  After early weekend bouts of heightened anxiety and lunacy that saw him parading around the house naked, brandishing a magnifying glass with which to shave his face, he then developed an odd pain. On Saturday morning he started grimacing wildly and grabbing his left arm, very obviously in extreme pain.

Of course, my first thought was heart attack so I battered him with questions, most of which got no more than a garbled, uncertain response: Is there chest pain? Are you anxious? Do you feel any discomfort in your neck or jaw? As always I had to rely on the visual clues alone and they were minimal. From what I could observe there was no increased anxiety; blood pressure was usually normal throughout the frequent attacks; no sweating; no chest pain; no shortness of breath. It seemed to be simply a violent muscle cramp that occurred randomly throughout the day, even waking him on occasion from a nap. In general, I dismissed a cardiac event and favoured a sore muscle from an unwitnessed injury, perhaps a fall.

But as the days wore on and the pain increased, starting to interfere severely with what little mobility and balance he has, I began to formulate more theories.

Could this be something like spinal stenosis, a condition I watched my poor mother suffer through that caused her much pain in the left arm, then finally the total paralysis of the once useful limb?

Perhaps this was a side effect of the new drug Motillium. Dystonia, the term for severe muscle spasms, is a rare but not unheard of complication with this drug. The pharmacist I consulted yesterday even suggested that the combination of this drug and the neuroleptic drug Clozapine might be the culprit. I gave one extra dose of Clonazepam, the anti-anxiety/muscle relaxant drug Michael takes nightly and when needed. This was a strategy recommended for dystonia on one website I consulted. I also gave a dose of Tylenol on another occasion, hoping to alleviate his pain.

But when things were worsening yesterday, now the fourth day, and nothing seemed to be working, I placed two calls, one to the neurologist who had prescribed this drug, the other to Michael's home-visit doctor.

The second doctor so far is the only one to have checked in. My relief when we finally made a connection today was huge. We chatted like colleagues for about fifteen minutes, throwing theories around. I appreciate being able to discuss Michael's case with someone who knows what I am talking about but who is, at the same time, quite willing to admit to head-scratching puzzlement while listening respectfully to my input. Together we worked out an initial strategy to gradually reduce, but not yet eliminate, the Motillium to see if that helps. If not, then part two of the plan is to embark on a very low-dose, slow-release nitrate patch just in case this is a bizarre manifestation of angina that is not following the text book description. Rapid plummets in blood pressure, as you know, are already a dangerous complication of this disease for Michael so we must be careful not to exacerbate that problem.  The doctor asked if a trip to Emergency might be in order, but when I reminded him of the serious consequences of the inevitable long wait for treatment only to be dismissed after perhaps days of tests, all with Michael rapidly and wildly spinning out of control, he agreed to keep him home for the time being.

The phone call buoyed my spirits. It felt like we were playing House. Not the domestic variety but more that insanely implausible television show "House" with Hugh Laurie (whose zaniness as the aristocratic British twit Bertie Wooster still looms large in my head) as the crusty, irascible Dr. House. Every week this character faces a complicated medical mystery, then spends much of the episode consulting with a team of about six doctors, even sending out sleuthing hospital residents to a patient's home to uncover medical clues, finally revealing a miraculous solution within sixty minutes. AS IF. Our version of collaboration is almost as implausible to some, I suppose, though, unlike the fiction, we have no guarantee of ever gaining any insight

I am feeling very supported and only realize how lonely this job is when I do finally have someone to talk to frankly about my husband's mysterious and complicated condition. This doctor/caregiver/patient relationship feels more like a comfortable partnership, a rarity in our otherwise top-down medical approach to patient care. I love this doctor.

*Hugh Laurie as Bertie Wooster and Stephen Fry as Jeeves in P.G. Wodehouse's "Jeeves and Wooster".

Springtime, Submission, Serenity

An emergency car purchase. Wedding plans. Our first offspring to be purchasing a house. Mild family tensions. A normal week.

I've forgotten Michael's regular doses of medication twice recently. He nearly escaped on me once WITH the keys to the new car in hand.

He has responded well to the new medication. Blood pressure seems to have normalized and the bowels are working well. In fact, all round he is physically better, thanks to Motillium, with more energy and more mobility. A great success so far except in the cognitive department. If anything, that has worsened which makes the increased mobility a bigger concern; with the nicer spring weather, get-away is that much easier and that much more enticing. And I'm out of practise after his winter of nearly complete immobility and lethargy. My Michael-sensors are dulled.

But on quiet reflection, I am happy, despite slightly diminished attentiveness. I think, after two-and-a-half years of this intensive care, I have finally reached a level of contentment with this job. No longer am I bristling for a sign - any sign - to indicate the future path of Michael's disease.  I have learned to be content with and submissive to whatever might reveal itself, however long it takes to play out. I have accepted that this is my job for the foreseeable future; I am no longer wishing otherwise.

I am very lucky: I am healthy. No financial worries. A beautiful home and community. A loving and concerned family and group of friends. Tremendous support from the social and medical services that allow fourteen hours of respite per week and medical care for Michael at home when I need it, all at no cost to me. Friends drop by regularly for cups of tea. The telephone rings and laughter often fills my day. I have even summoned the courage to take Michael out to visit my brother one afternoon recently, an activity I could not have attempted a mere month ago. I am entertaining thoughts of taking him farther.

I am my husband's keeper but when his time comes to leave us, whenever that might be, my sister appeared in a dream two nights ago as if to reassure me that the burden will be taken from me and Michael will be in good hands.  She stood before me, arms outstretched for an embrace, my husband standing behind her, protected, awaiting her. Every time before now that I have worried about a dying family member, my dad vividly appears with that person in a dream to assuage my concern. Though I awaken saddened, I am always comforted just as I was this time, my sister taking his place.

We approach the anniversary of my sister's passing coinciding with my mother's birthday, then the next day a Nearly New Sale weekend along with the most holy time in the Baha'i community. It will soon be Ridvan, a time for joy, reflection and celebration.