My father died of Parkinson's eight years ago and yesterday was the two year anniversary of my mother's death from dementia.
Brunonia Barry's new book The Map of True Places has a character with Parkinson's, who is moving into the end stages of the disease in the book.
David Dosa's Making the Rounds with Oscar chronicles part of his work as a doctor working with elderly patients in a nursing home (and Oscar the cat's ability to sense when people are close to death), many of whom have dementia.
I don't know if I would have picked up either of these books had I known that dementia was such a large part of them. I've generally avoided books that have characters with dementia or Parkinson's as it's been too painful for me to re-experience what I lived through with my parents, even in a book.
There were some passages in The Map of True Places where the character's difficulties from his disease were tough to read. Most of the book, however, focused on his daughter's struggle with her mother's death after living with mental illness (bipolar disorder), brought up by the death of one of her patients (also with bipolar disorder).
That the illness and decline weren't the main part of the story was good for me, reading some of the passages in this book, as well as in Making Rounds with Oscar made me remember some of the struggles my parents had with dementia. I felt as though I remembered them and recognized them from the inside. And it was okay.
I enjoyed The Map of True Places. Zee, the daughter, is a therapist who treats a woman who has bipolar disorder...
Okay, one thing that I didn't like about this book...Julie Fast, author of several books about bipolar disorder, talks about how she doesn't like it when people use the description, 'she's bipolar', as opposed to 'she has bipolar'. To her that first way of describing someone makes bipolar disorder the person's entire identity, rather than one aspect of life that has to be dealt with. We don't say 'she's cancer', we say 'she has cancer'. It seems like a small distinction, but it's an important one. In this book Barry has her psychiatrists and therapists talk about their patients and family members in that first way, "She's bipolar," which I think lessens the book a bit.
As I read over the above paragraphs, the Barry book sounds pretty darn intense...mental illness, Parkinson's...and in some ways it is, but it didn't read so intense to me. Perhaps having the story set in Salem and Boston, using nautical and navigational references (which my dad would have liked, he was a sailor), bringing in the new age and witch-y aspects of Salem, made it less grim. It was also a bit of a mystery, Zee struggling with her own mother's death and her patient's death and wondering if she could have prevented either one. Of course there are a few nefarious characters, but mostly it's about Zee coming to terms with herself as a daughter and a therapist and a lover.
In Making Rounds with Oscar, David Dosa talks about diagnosing a woman with early onset Alzheimer's, asking her questions which required her to use her memory. As I was reading I remembered so many doctor's appointments with my mother where the same questions Dr Dosa asked his patients were asked of my mom, each appointment showing how she was losing her ability to remember. He talked about how devastating it was for this patient and her husband to realize so clearly, because he was the doctor and he was telling them that she really did have a problem.
And it is devastating. My mom had a stroke which resulted in some dementia, which progressed into advanced dementia.
It was awful for her to know she was losing some of her memory, at first it was short term memory, like what had happened that morning. But then she lost more. She'd forget where she was, she forgot her parents had died. As the disease progressed, she forgot so much that she didn't even know she should have remembered. It was just me, every day watching her forget more and more over time, forgetting how to do things, forgetting who I was.
I had to go to the hospital today to deliver something to a lab. I felt anxious while I was there, my body remembering the being there with my mom for countless appointments.
Writing this has been hard, my stomach in knots, my head hurting.
I'm thinking that having the anniversary of my mom's death, going to the hospital, reading these books and writing this all at the same time has been a little hard, there's just been too much remembering stacking up all at once.
Perhaps I shouldn't have chosen to read them at this point in the year, but here I am. Reading, writing and remembering. I think I'll get back to just reading for a while.