I’d been anxious to read “Still Alice” since I learned about it from publicity surrounding the film it inspired. I’d hoped to get some insights from the book, which describes a fictional linguistics professor’s diagnosis of early-onset Alzheimer’s disease.

A member of my family has dementia, you see.

It’s heartbreaking and stomach-churning – both the book and my family’s reality.

Lisa Genova, who earned a doctorate in neuroscience from Harvard and knows intimately the neural processes of which she writes, totally nailed the atmosphere of confusion and frustration and anger and sadness and fear that infuses the lives of people with dementia, and those who care for them.

In many aspects, “Still Alice” was all too familiar: the unpredictable swings between functionality and impairment, the anxiety and repeated questions about dates/times/appointments, the snappishness or withdrawal that happens when social interactions are too fast for a damaged brain to process.

Neurology appointments and diagnosis

I recognized that intense focus Alice put into the neurology exams she was given, the desperate desire to “pass.” I was never present at the neuro exams my family member took, but they would tell me with pride days later in a phone conversation the words they were asked to remember at their appointment. Those random words were a talisman – proof that all was still well.

But it wasn’t.

Those in-office memory tests always seemed to lag behind day-to-day reality. Caretakers were aware of my family member’s cognitive decline well before the formal diagnosis. I wonder if this was in part due to the physicians’ discomfort at making the diagnosis.

I was reminded of a recent piece a doctor wrote for NPR “When A Patient Says ‘Everything’s Fine,’ A Doctor Should Be Wary”:

In retrospect, I realize that my patient was adroit at masking his dementia. He was still capable of small talk. Since I didn’t probe very hard, I wasn’t going to find out the degree of memory loss that he’d already suffered. … Labeling patients with Alzheimer’s can be devastating. It’s telling them that they have an incurable, progressive illness that won’t only destroy their mind but in all likelihood ravage the lives of their caregivers as well.

Loss of independence in health/safety decisions

In the book, Alice’s neurologist is very keen on getting her family’s perspective on how well Alice is functioning in her daily life. Much to her humiliation, the neurologist says, “You may not be the most reliable source of what’s been going on.”

I was not there for most of the doctor appointments, but it seemed like there was a constant tension between my family member and the caretakers who would accompany them to appointments. My family member would say something that was blatantly untrue, and the caretaker would have to correct that statement, in front of them.

My family member was, of course, distressed about all this. It could have been them sitting there, in Alice’s place in a scene in her neurologist’s office, when the doctor says that he wants Alice’s husband to accompany her if she goes out for a run, because the damage to her brain renders her unable to go out safely by herself. Alice feels persecuted by them having conversations about her, in front of her, and by this truncation of her freedom for her safety – “They were ganging up on her.”

This feeling of being “ganged up on” is a huge source of conflict between a person with dementia and the people who care for them. Dementia can utterly destroy a relationship, both because the person with dementia slowly dissolves away from being the “self” they have always been, thus removing the foundations of relationships they have built (the shakier the foundations were to begin with, the faster the relationships collapse), and because of clashes between a person’s desire for independence and the need to put limits on that independence for safety’s sake.

Which is worse – fighting with a person to get them to use a walker when their sense of balance fails and they are unwilling/unable to accept their new “disabled” status, or letting them have the freedom to leave the walker behind and then watching them crash to the ground and bleed profusely from a head wound?

Driving

One beef I have with “Still Alice” is that it sidesteps a hugely important and emotionally-charged issue in the lives of many families dealing with dementia: driving.

Conveniently, Alice lives close to where she works, on a college campus where walking is a well-accepted form of transportation. She is not depicted driving in the book, before or after her diagnosis. When she goes out for a walk by herself, she might be endangering herself, but she is not necessarily putting the lives of other people at risk. Getting behind the wheel of a car changes that calculus.

I was upset when my family member was given a formal diagnosis of dementia without any followups on the practical implications of that diagnosis on daily activities like driving. For months, caregivers had been fighting with my family member over access to car keys. With the unpredictable nature of the cognitive impairment and the frequent inability to focus on more than one task at a time, let alone the increasing physical impairments, driving just did not seem safe. And the family member seemed unable to judge the extent of their impairment from one moment to the next. “I’ve not had an accident,” they said. I always mentally filled in the word “yet.”

Lane positioning was becoming problematic, “curb checks” more frequent. Once, the police were called late at night when the family member failed to return home hours after running an errand – their GPS device had failed, and they had gotten utterly lost. Another time, the family member called caretakers because they were lost, hours away from home, and unable to navigate back even with GPS.

A side note on technology: it can greatly help a person with dementia continue to function independently – until it can’t. In the book, Alice uses her Blackberry to maintain her grip on her sense of time, until she accidentally destroys the device. My family member has been relying on a smartphone to remind them when to take their meds and to navigate to and from home while driving. Unfortunately, as the dementia has progressed, they are losing the ability to use the device. They often wind up completely messing up the medication reminder schedule when, say, trying to change the alarm sound, or they forget how to charge the device, or lose it altogether.

Ultimately, a wrangled appointment with an occupational therapist resulted in a recommendation to revoke driving privileges based on cognitive deficits. My family member says they will appeal this decision. I suspect driving will continue to be a source of anger and frustration for as long as my family member is able to remember the freedom and habit of driving.

Confused thinking, isolation, boredom

“Still Alice” does an exceptional job of describing the confused thinking of a person with dementia. I found my own thinking muddled when I would come up for air while reading this book.

The strange thing about being around a person with dementia is that their skewed perception of reality can rub off on you after awhile. You can begin to doubt your own sanity and need to turn to others for a reality check. A recent post on the Iowa Book Facebook page, inspired by the death of writer Terry Pratchett from Alzheimer’s disease, mentioned this feeling:

Driving over to my dad’s house in western Illinois on Saturday morning, the snow had melted to highlight the branches and twigs littering his front yard, a scandal in his coiffed suburban neighborhood. Inside, my ninety-year-old father greeted me with the news, delivered in an enthusiastic tone, that there were “Too many birds flying in the house.” How many? “Oh, two, maybe three.” A moment later, he added a squirrel. . . . I busied myself before my eldest brother could arrive to rescue me, to verify that what I was hearing was madness, providing a reality check to what seemed to be Wonderland.

A word in the preceding passage – “scandal” – speaks volumes, too. Mental health problems, dementia included, are not well accepted in our society. A very telling passage from “Still Alice”:

And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. Those with cancer could expect to be supported by their community. Alice expected to be cast out. Even the well-intentioned and educated tended to keep a fearful distance from the mentally ill. She didn’t want to become someone people avoided and feared.

Alice loses her ability to work, and she loses her professional social networks and identity. As her disease progresses, she begins to lose the ability to keep herself occupied. She can no longer read or watch a movie because she can’t follow a plot anymore.

She sat in her living room armchair and tried to think of what to do. Nothing meaningful enough came to her. She tried to imagine tomorrow, next week, the coming winter. Nothing meaningful enough came to her. She felt bored, ignored, and alienated in her living room armchair.

This same thing is happening to my family member. They can no longer keep themselves occupied because they can no longer do the things they used to do. Even watching TV is difficult because they can’t always remember how to work the controls.

They call me because they are bored, but sustaining a phone conversation with them is difficult because they have little they can contribute to a conversation anymore. They often seem to expect caretakers to drop everything to come rescue them from their boredom.

I tried to search online for some solutions for dementia-related boredom, but many of the suggested activities assume the caretaker can be right there, all the time, to assist and suggest and redirect. This hardly seems fair to ask of a person. It’s exhausting, and impossible when the caretaker has other work and family responsibilities to attend to.

Fixing the body, but not the mind

“Still Alice” adroitly walks the reader through dementia’s effects and implications. It’s an important book to read, because the number of people living with dementia will only increase. Modern medicine has gotten really good at patch-fixing the human body to keep it going, but damage to the mind remains unrepairable.

My family member’s health has prompted me to do a lot of reading, in addition to “Still Alice.”

“Knocking on Heaven’s Door” by Katy Butler describes the author’s experience of dealing with the ends of her parents’ lives, and the thorny issues raised when her father is fitted with a pacemaker that winds up keeping his body going long after his mind has deteriorated.

“Being Mortal” by surgeon Atul Gawande outlines the struggles he faces when treating patients with incurable illnesses, and how the American medical system is failing in its focus on technology and treatments over the well-being of the patient as a whole.

These are both excellent, thought-provoking books that came to mind numerous times while I was reading “Still Alice.” There was one passage in particular that reflected a major point from “Being Mortal” –  that patients should be asked what really matters to them when setting health care goals.

Alice evaluates her life, to determine what is most important for her to accomplish in her remaining time. To her surprise, she leaves her career behind entirely. Most of what she wants involves family – holding a grandbaby, seeing a child succeed in a career, seeing another child fall in love, spending a year on sabbatical with her husband.

What bothered me about her goals is that they involved actions by other people. Her definition of happiness could only be fulfilled through others.

A highly emotional scene in the book is one in which Alice and her husband discuss a career opportunity for John, which would derail her plans for a sabbatical to spend time with him.

Alice: “I can’t do this anymore! Please! I can’t keep holding on without you! You can take the year off. If you wanted to, you could. I need you to.”

John: “I don’t think I can do it, Alice. I’m sorry, I just don’t think I can take being home for a whole year, just sitting and watching what this disease is stealing from you. I can’t take watching you not knowing how to get dressed and not knowing how to work the television. If I’m in lab, I don’t have to watch you sticking Post-it notes on all the cabinets and doors. I can’t just stay home and watch you get worse. It kills me.”

I’m afraid of what the future will bring – for my family member, for the caretakers, for me, and for our relationships. I can’t fix this. Can’t make things better. Dementia is a horror in which I see no happy endings.