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In the book, Turn of Mind, Alice Laplante tells the compelling story of a Dr. Jennifer White, a retired orthopedic surgeon, as she gradually disappears into the fog of dementia.  Dr. White’s neighbor and best friend is found murdered with four fingers surgically removed, and Dr. White is the prime suspect.  However, even she does not know if she did it.  On most days, she does not even remember that her dear friend is dead.

Interestingly, the story is told from the point of view of Dr. White in a fragmented, sometimes confusing mosaic.  To write the novel, LaPlante drew on her experience with her mother’s Alzheimer’s.  The book begins with Dr. White in the moderate stage of dementia with an in-home caregiver, depicts the earlier stage and a full, prior life in memories, and follows Dr. White into late dementia.

Realistically, Dr. White physically struggles with her care givers and hurls hurtful remarks at her children and others.  Believing she is still a practicing doctor, Dr. White dons a white coat and sees patients at a clinic being able to convincingly remember the medical skills of her past. In dementia patients, the long term memory may remain functional while the short term memory is impaired.  Dr. White acts inappropriately often, for example, she wanders around Chicago in the middle of a cold night without shoes, squats and pees on a rug in her house, and throws all of her jewelry away.

Having had a serious acquired brain injury (ABI) in 2007, I could particularly relate to Dr. White’s mental states and behavior portrayed in the book.  After my brain injury, I sulked, yelled, and just wanted everybody to leave me the hell alone.  I laughed at the wrong things, hurled hurtful remarks, and dressed inappropriately at times.

While each case of dementia and brain injury are unique, both involve changed functions of the brain and can manifest in significant personality and behavioral changes.  The neural tissue in our head, with its distinctive connection of synapses and communication of neurons, makes each of us the specific human being that we are.  Change the brain, and we change.  A lack of emotion, too much emotion, little impulse control, aggression, self centered attitude, lack of awareness of deficits, and inappropriate behavior can be exhibited in both cases.  Extreme behavior, such as paranoia or hoarding, may also be seen.

In both instances, the physical body of the person is present, but they are no longer fully in it. Spouses, parents, siblings, and friends can experience a real, profound sense of loss, as in a death, yet the person is still there.  There are no acknowledgement rituals to deal with the event, like a funeral for a death, which makes for a complex and confusing, grieving process for those around the brain injured or demented person.

In early dementia, the person may be aware of their situation and the loss of their skills and this can, understandably, cause frustration, depression and pain.  This is often true in a brain injury as well.  As the disease progresses, the person typically degenerates to the point that they are not aware of their condition.

When healing from my brain injury, I went through a similar emotional progression in reverse.  Immediately after the injury, surprisingly, I was not unhappy even though I was seriously impaired and had lost custody of my children because I lived almost completely in the present, not lamenting the past or future.  It was all of which I was capable because I was not aware of  normal  or “out there” for the most part.   As I became more cognizant of my mental and physical deficits, a world beyond me, and a life that I used to know, I seethed with frustration and anger.   With dedicated, almost obsessive, effort to rehabilitation, my brain did heal over the years, and I improved mentally, physically, gained control of my emotions and, went on to become calmer, happier, and more peaceful than before the brain injury.

In the case of a brain injury or dementia, it is important to remember that the changed behaviors of the affected person are not deliberate.  The behavior is out of the person’s control and they, as well as you,  may be quite frightened by it. They need understanding, reassurance, and an environment and persons conducive to coping and managing.

For more information on brain injury see blog: The Invisible Wound.

image source: https://www.flickr.com/photos/buttonup6/

5 Comments

  1. It feels a bit naughty to put it this way, but that sounds like a fun read! As more people live into advanced old age, the rates for all types of dementia are rapidly increasing. It’s becoming a more familiar condition to people in general. I think there will soon be lots more books, movies and TV shows featuring characters with dementia.

    • Debbie Hampton Reply

      Isn’t that what makes for a good read? To vicariously participate in all kinds of experiences that you hope to never encounter in real life. I think you are correct. We are going to see a multitude more media dealing with this subject matter as it is becomes a pervasive part of our society.

  2. Julie Nowlan Reply

    I can particularly relate to this, especially the paragraph, mentioning family members dealing with the sense of loss when their loved one is physically still with them. I have been grieving for my mother for years now, and yet, participate in the shared role of caregiver with my father and brothers. It is truly a process that no one seems to understand unless they’ve had direct contact with a similar situation. Thankfully, Mom’s condition has leveled off for now, and we see glimpses of the Mom we know and love more often than we did for months and months. I continue to wonder what the lesson is that I’m supposed to learn from this….patience? compassion? Perhaps. My other hard question is “then why does MOM have to suffer for me to learn the lesson?” Ahh, the things with no clear answers…I trudge on, one foot in front of the other. Thanks for your insightful writing. It is both informative and inspiring…and helps me know that I’m not alone in “learning lessons.”

    • Debbie Hampton Reply

      Julie, thank you for your comment. I admire your attitude about your Mom and empathize with you. Please know that, unfortunately, there are many going through something similar and the numbers are only increasing shockingly. While I do believe there is a genetic tendency, I also believe that Alzheimer’s is a lifestyle disease which was not known during your Mom’s generation. However, we know and can change to optimize the health of our brain.

      I would encourage you to, as you are, find the meaning in this, but your Mom is not suffering for you to learn the lesson. This experience has meaning for her and everyone in her life and everyone’s life she touches. It is a ripple effect. Please don’t put such a burden on your shoulders.

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