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Sunday, August 28, 2011

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.

3 comments:

  1. Claire, this is beautiful and insightful, as I have come to expect from your writing! I think that I will find and read the book of which you write so movingly. It sounds like a book I would benefit from! Good luck carving out some personal time for yourself. It is certainly something you deserve!

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  2. Thanks Bruce. Another worthwhile read is by author Lionel Shriver entitled "So Much for That", about a couple struggling with terminal illness and the associated problems with the American medical insurance system. It is beautifully written from the viewpoint of the sufferer and the caregiving spouse.

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  3. Thanks, Claire, for the recommendation. I could go on and on about the American insurance system from my own wretched experience but will save that for some other day. I'll add it to my reading list!

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