Book Review: Where the Light Gets In

Reviewed by Julie Keefe
Graduate Student, Speech Language Pathology, Nazareth College

Where the Light Gets In by Kimberly Williams-Paisley is a heart-wrenching account from a young woman whose mother is diagnosed with primary progressive aphasia at the early-onset age of sixty-two. Unlike most types of aphasia caused by stroke, PPA is actually a form of dementia which, as its name would indicate, progressively worsens over time. Spoken language is affected prior to cognitive functioning, differentiating it from Alzheimer’s Disease. Like any form of dementia, PPA ultimately leaves the affected individual unable to think, speak, or function as they once did. From the moment a diagnosis is given, the journey of living with PPA is not easy for the one diagnosed nor his/her immediate family and caretakers.

Williams-Paisley paints a picture of her relationship with her mother prior to her diagnosis, highlighting many moments when their equally strong-willed personalities caused them to butt heads, as well as the special bond that they shared. Throughout the book she makes connections and distinctions between “Old Mom” and “New Mom,” explaining how she struggled for a long time to accept the changes in personality and functioning that her mother underwent as her disease progressed. Some of the most difficult moments occurred when her mother acted least like her old self, becoming frustrated and, at times, aggressive toward people who were usually trying to help. Not surprisingly, the most frequent victim of this behavior was the author’s father, her mother’s primary caretaker.

Because the book is not written from the point of view of the person with the disease, readers gain an insight as to how the disease takes a toll not only on the affected person, but also on her husband, children, and grandchildren. Williams-Paisley writes about how she struggled with guilt over not spending enough time with her mother post-diagnosis and not being there to help her father, but also needing to live her own life as a young mother and wife. She felt this guilt especially when she would visit her parents after not seeing them for a period of time, as her father would sugar-coat how things were going when she spoke with him over the phone, but when she arrived she saw for herself how much her mother had declined and how much stress it was putting on her father. For a long time her father bore the weight of acting as the primary caretaker without accepting help from anyone within or outside of the family, and Williams-Paisley tells of what kind of toll this took on his own health.

One piece of advice that Williams-Paisley has for families of loved ones with dementia is to refrain from hiding the diagnosis. As she shares in the book, upon her mother’s wishes the family kept her PPA diagnosis a secret for as long as they could, telling only immediate family members. Eventually it had to be shared with the company her mother worked for and her coworkers, when she could no longer keep her job. Williams-Paisley discusses how uncomfortable it could be to share the diagnosis with people who were unsuspecting, especially with the early-onset nature of her mother’s disease. She compares it to a disease like cancer, where the diagnosis is devastating but people can always offer hope in the treatment the person receives. Sharing a dementia diagnosis makes for a heavy conversation because everyone knows there is no silver lining in the progressive disease, with no solid treatment options currently available. However, the author explains how she opened up with more people about her mother’s condition as it progressed, and in hindsight she wishes that her and her family had done so sooner.

Speech language pathologists and any other health professionals who work with patients and families experiencing dementia have an important role to play in the process of the disease. All related health professionals should be cognizant of how the diagnosis affects both the patient and the family, and offer the appropriate level of counseling alongside their own treatment methods. Additionally, referrals to other professionals such as mental health counselors should be encouraged and discussed early on in the treatment process. Often, family members and caretakers don’t realize the effect that the diagnosis has or will have on their own well-being, so making these suggestions from the start can be preventative and beneficial. Furthermore, health professionals should work with families to encourage them to communicate with each other about the diagnosis, as well as to communicate with those outside of their family. This can result in a support system for the family, and an overall increased awareness of dementia, especially early-onset types.