A Conversation

"We need to talk about what we're going to do with all our stuff when we leave." His voice was anxious. He had lurched into the kitchen to make this unusually coherent statement.

"Okay. Where are we going?" she asked, nonchalantly flipping through a new cookbook.

Pause. A slight flicker of panic. "I don't know."

"Well, when you know, then we'll talk about it."

"Okay...do you want to stay with me?"

"Yup." Eye contact. "I'm not going anywhere. Are you?"

"No."

"So, do you want to stay with me?"

Twinkle in the eye and the hint of a smile. "Yes."

"Good, then it's settled."

"Good." He leaned in for a hug then shuffled and stumbled back to the couch.

* Aigen Kirche window, Wolfgang Sauber

Vincent and Me

I communed with a great man today. A friend and I paid a visit to the National Gallery to take in the exhibit entitled "Van Gogh Up Close." It focuses on his years in France, the last four years of his life as it happens and, it seems, his most productive. But it was also the time when mental illness most overwhelmed him, killing him in 1890 through what appeared to have been a messy suicide. He was only 37. He spent much time in hospitals and then an asylum after a breakdown in 1888 when he famously chopped off an earlobe, all this in the wake of a nasty argument with Paul Gauguin. These final years of his life were spent fighting despair, depression, paranoia and hallucinations.

And yet, as I wandered through the exhibit humming Don McLean's "Starry, Starry Night," I was uplifted. Such light amid the torment. There is a sense of peace and serenity emanating from these masterpieces; obviously Vincent's art was a soothing balm to a tortured soul. As I inspected the details in some paintings, I was struck by a seemingly random splash of colour that had no discernible shape or meaning or, in another, a very unusual choice of colour. They almost seemed like mistakes but it was more likely that my strong sense of order and sanity wouldn't let me see their meaning.

I eschewed the headphone tutorial. I didn't want to be distracted from my own response to the paintings. I may go back and use the aid, but for my first visit I wanted no one else's perspective or interpretation to influence me. I knew enough of his life to just drift through the exhibit unaided.

Halfway through my wanderings I was hit by an intense sadness, especially after reading some quotations from his letters where he admits to his madness and his efforts to hang on to sanity through his art and his connection to nature. Clearly he failed, ending his life so violently. The demons overtook him.

But what a testimony to the breathtaking brilliance of his mind he left behind. What wonderful proof of the sanity deep within him even though his life was spinning out of control. What a soothing balm for me to recognize that no matter how wild and crazy a person might seem on the surface, deep inside there is a soul that is anchored and safe and untouched by the maelstrom.

All this is comforting as I contemplate a road trip I am planning to take next week. It will be my first overnight journey away from Michael in many years.  I informed him - perhaps unwisely - of my plan a few days ago but will not mention it again until the day I leave. Already the madness is quietly manifesting, though, of course, he cannot articulate his worries. Telling him or not telling him, I've learned, makes no difference to his reaction when the day comes. He might go over the edge, inflicting his own internal damage upon his person, his own symbolic disfigurement. But deep within I must trust there is still a little place where the real Michael hides untouched, creating his own spiritual masterpieces.

I have realized finally that this disease will probably hold Michael in its clutches for many years to come and I must take a night off if I can. Up until now I have kept going believing that this could not possibly continue much longer, that I could hold on until the end, sparing him the further agony of even brief abandonment. But recently a switch has gone off in my brain with the understanding that I must go if I am to survive this long-term sentence bestowed upon both of us. I am blessed with a gifted and competent caregiver in whose hands Michael will be lovingly looked after. She may have a big job; the worst may happen. But come what may, I must hang on to the notion that despite all the madness and confusion, Michael's soul will remain unscathed.

I took Michael up to the local soccer field tonight where his old buddies were playing a game. He arrived with a spring in his step and walked without falling once. He tossed down his cane, announcing he was going to warm up to play. I quietly told him he could not participate in the game. He glared at me, refusing at first to believe me, but he gave in and watched from the sidelines instead, running competently for the ball when it was kicked out of bounds. A masterpiece of movement. The air was crisp and clean, nearly autumnal. But it was the sky that amazed me. It was truly a starry night with a paintbox of deep blues. I felt as though Vincent himself were reassuring me that all would be well.

Vincent Van Gogh, "Starry Night," 1889.

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.

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?

Good News, Bad News

Michael returned home from hospital last Monday afternoon. No fanfare, nothing dramatic, no tunnelling out, just a quiet uneventful departure from his prison cell to the relative freedom of home.

I was able to spring Michael out a few hours earlier than the usual morning discharge time. I had been keeping a pretty constant daytime vigil at his bedside during his eight day stay but especially the last three days when his mental state was spiralling out of control and only my presence seemed to calm him. I did, however, need an occasional break so a few good friends spelled me off over mealtimes. On Monday afternoon I was awaiting one such friend to sit the dinnertime shift when I caught sight of the elusive doctor. I resolved to stay put until I had pinned this guy down, my first direct contact with a doctor in seven days. All medical information during that time had had to be filtered through the nursing staff, some of whose English was not good enough to impart the necessary details with any clarity. Added to that was my lack of essential medical vocabulary in French but I think we all did pretty well considering our various linguistic shortcomings. However, I still had a lot of unanswered questions and was impatient to get my husband home and away from enemy lines.

The doctor arrived just before my friend did. He told me that the results from an angiogram done a couple of days before revealed some very good news: There had been NO pulmonary embolism after all. The week of heavy doses of blood thinners had been a precaution only and in the end, redundant. That treatment had been stopped abruptly that morning. I convinced him to let me take Michael home right away, there being no reason that I could see to keep him any longer.

Pulmonary embolisms are difficult to detect, many being detected only during autopsy as the cause of sudden death. The symptoms Michael experienced - extreme shortness of breath, light-headedness, weakness, increased confusion over a period of about a month - all pointed in that direction. It was a logical conclusion to draw and wise to treat promptly even before a definite diagnosis because to do otherwise could have been deadly if there had been one lurking dangerously. This insidious condition can kill instantly if not detected and is more likely to affect those who are immobile. There is even evidence that Parkinson's sufferers are more prone to pulmonary embolisms than the general population perhaps because of decreased mobility as the disease progresses or even because of drug therapy as one website suggests: "Pulmonary embolism is reported as a possible adverse reaction to levodopa therapy and a frequent, but under-recognized cause of death in patients with parkinsonism. Clinicians should think of pulmonary embolism, a common yet difficult diagnosis when a parkinsonian patient presents with chest pain and dyspnea (shortness of breath)" (www.ncbi.nim.nih.gov/pubmed/10925540).

On some level, I had been relieved to receive the initial, cautious diagnosis of pulmonary embolism because I had thought the dreadful episodes of shortness of breath through which Michael had recently suffered were just another strange development in this nasty disease and were probably untreatable. But embolisms, if caught in time, are treatable with blood thinners, namely Coumadin, a course of which Michael had begun at the hospital. Better the devil you know than the devil you don't, I think is how the saying goes.

So the good news morphed into bad news: Michael did NOT have a pulmonary embolism and the doctors were unsure of the exact cause of his frightening breathing issues. On visiting the neurologist a few days after Michael's discharge from hospital, the doctor simply said that this is not an uncommon development in advanced Parkinson's patients, especially those who were diagnosed at an early age, and the way they try to treat it is through more anti-anxiety medication.

At home that night I did a further google search on Parkinson's disease plus shortness of breath but found very little except an acknowledgement that breathing issues exist, which I already knew, but no insight into the kind of dramatic event Michael had experienced. It was only when I googled Alzheimer's disease and shortness of breath together that I seemed to find entries that described what we had been through. Michael is not officially an Alzheimer's patient but he does suffer from fairly advanced dementia that often mimics classic Alzheimer's disease.

I remember a few years ago when his father, who suffered from Alzheimer's before his death in February 2009, had an unexplained fall one day. I was summoned to assist and make the 911 call for my mother-in-law. When the paramedics came, picked him up and did an assessment to determine that he was physically fine, they said that advanced Alzheimer's patients can actually forget how to do some automatic motor functions like walking, causing them to collapse and fall for no apparent reason. It seems that breathing could be one of those forgettable functions.

The day of our visit to the doctor I witnessed something interesting that might confirm this theory. In the morning, Michael started to breathe rapidly, for no reason that I could ascertain, and his face started to contort in the same way it had that night a bad episode sent him to hospital. As soon as I noticed, I said very firmly to him, "Stop it. Breathe normally." And he did, just like that. Whether this little episode would have escalated into anything more severe is anybody's guess but it did show me that, at least in the early stages of a mild attack, he can be jolted into breathing normally. I told the doctor about it and explained that Michael's bad attacks were like a switch being turned on in his brain, the switch to start the rapid breathing, and then getting stuck in the "on" position. The doctor, who is not particularly forthcoming with explanations or information, simply nodded in apparent agreement of my simplistic analysis and prescribed Ativan, an anti-anxiety medication, to be administered in the event of another attack.

Clonazepam is another drug used to treat breathing abnormalities in Alzheimer's patients, a drug that Michael already takes regularly. In fact, it is the drug I have used with both serious breathing attacks he has had so far and I suppose it worked with the first attack but not with the second. I think one thing I have learned is to act much more quickly and administer the drug (I'll start with Clonazepam and switch to Ativan if the first doesn't work) within the first few minutes if my reminder to breathe normally doesn't derail the dyspnea train successfully.

I will most certainly use the medication Ativan if all else fails - anything to avoid a trip to the hospital if we can - but, on reading the warnings about the drug, I can't help but think it could exacerbate this and other existing problems he has: "Before taking Ativan, tell your doctor if you have any breathing problems, glaucoma, kidney or liver disease, or a history of depression, suicidal thoughts, or addiction to drugs or alcohol " (www.drugs.com/ativan). I just need to take a deep breath and not think about that.

Michael has "forgotten" how to do a lot of things over the past couple of years. I need to remind him daily how to carry out simple tasks such as how to put on a shirt, how the toilet works, how to make a simple sandwich, how to turn on the TV and yet on rare occasions he is bewilderingly competent, throwing me off my guard. But breathing is an autonomic bodily function, impossible to forget I would think. This will mean even more vigilance now; I have become his breathing buddy.

If we weren't already inextricably joined before this, there is no doubting it now.