Abstract
In this recent memoir, licensed psychologist Phyllis W. Palm, PhD, details her journey as a spousal caregiver to her husband with dementia. The author poignantly depicts the stages and symptoms of dementia. Unlike other literature on Alzheimer’s disease, Palm refrains from protecting the reader from the realities of difficult behaviors that can be displayed such as unprovoked violence, paranoia, and inappropriate sexual behaviors. Palm earned a doctorate in psychology from New York University. She went on to receive a postdoctoral certificate in child and adolescent psychotherapy from Adelphi University. She successfully practiced as a psychologist in her private practice for 15 years until retiring to become a full-time caregiver to her husband. As an advocate for caregivers struggling with the challenges of dementia and a facilitator of an Alzheimer’s Association support group, Palm applies her professional skills in a new way. This project began as a diary to help her cope but morphed into a candid description and guide for dementia caregivers. The final product examines Palm’s experience caring for a progressive and degenerative brain disease, taking into consideration the effects on the caregiver every step of the way. Palm states, “No one can tell me what to do, no one knows. We caregivers are, each one of us, on our own handling each emotional upheaval as it arrives.”(p 132)
With the exception of chapters 1, 30, and 32, the book is written as a chronological time line of one family’s journey of dementia. Chapter 1 portrays the first display of alarming, out-of-character behavior in which the author was forced to face reality that something is very wrong with her husband. Chapters 30 and 32 provide summaries of 2 more caregivers’ experiences. Additional caregivers are an important addition to the book. However, integrating a greater number of caregiver experiences would increase the validity of the book as a caregiver guide. The remaining chapters naturally categorize themselves into early-, middle-, and late-stage dementia, starting with initial symptoms of memory loss ending with the inevitable severe cognitive deficiencies.
Chapters 2 through 11 encompass the very early stages of dementia. Initially, Palm reflects back to a time when she began to notice her husband making changes that did not make sense. Chapter 3 takes place 3 years later as the search for a diagnosis begins when both the caregiver and the symptomatic individual begin to question what is happening. Chapters 5 through 11 provide greater detail into the many symptoms such as short-term memory loss, difficulty with word finding, changes in sleep patterns, and changes in behavior including loss of inhibitions. These chapters illustrate how the symptoms begin to take a greater toll on the caregiver and the confusion that comes with treatment options. Family and professional caregivers may find these chapters helpful in understanding the perspective of those on the front lines of caregiving. In addition, individuals worried about dementia-like symptoms and their families who are yet to receive a diagnosis could benefit from these chapters’ description of the early stages of dementia.
The next chapters, 12 to 19, explore life as a dementia caregiver with increased negative behaviors often requiring additional help. Primary caregivers of individuals with dementia can relate to this part of the book as daily struggles intensify. To the author’s credit, Palm does an excellent job accurately describing that every person with dementia presents differently but that the emotional rollercoaster most caregivers experience is comparable. The inconsistencies and unpredictability of dementia are explored in detail with emotions such as embarrassment, sadness, and loneliness being connected to the experience. At this stage, inappropriate sexual behaviors can become common. Sexual advances toward relatives and complete strangers can become frequent, while intimacy and sexual needs of the caregiving spouse are forgotten. Palm describes coping mechanisms including speaking to the patient’s emotions rather than their words, caring for the caregiver, lowering expectations, and finding support. These chapters address the importance and the difficulties of utilization of hired help. However, the author neglects to discuss in any detail the financial burden of seeking outside help and that these services are not financially viable for all caregivers. The author’s lifestyle that allows her luxuries such as 2 homes may make it difficult for caregivers with limited financial means to relate. Palm explains that even with outside help, the best laid plan can result in disaster. The path of the disease changes often while acceptance and resistance to particular caregivers can change by the minute.
Chapter 20 begins the description of the experience of severe cognitive decline. The author mentions an incident in which her husband is unrecognizable as he becomes violent and uncontrollable resulting in the police being called. This section of the book not only is useful to caregivers dealing with these behaviors but could also provide insight to law enforcement personnel responding to individuals with dementia. The subsequent chapters, 21 through 29, continue to describe difficult to manage behaviors and paranoia, which leads to increased fears of being around the demented person. The author details experiences of trying to cope with these behaviors, allowing minivacations from the burdens of caregiving.
As the book proceeds, chapters 31 and 33 through 45 illustrate how dementia can take an unexpected and uncontrollable turn as caregivers make desperate attempts to continue caring for their loved ones at home. In a powerful reenactment, Palm describes the moment her husband pulled a knife on her. She no longer felt safe to shower or sleep without a lock on the door. In a brief moment of clarity, the author’s husband admitted that he needs help. Negative behaviors that can no longer be controlled with environmental adaptations and outpatient treatment often require inpatient hospitalizations for individuals with dementia. When Palm’s husband reaches this point, it is recommended that he not return home. Like many caregivers, she desperately holds on for a plan to keep him home until her husband’s physician steps in, “Don’t do this to yourself. You deserve a life and not to be sick yourself. I cannot guarantee your safety or his if you return home.” (p264) The conclusion of the book takes the reader through the plethora of emotions attached to placing a loved one in a long-term care facility and adjusting to a new way of life. Most importantly, Palm is able to model for other caregivers a release of guilt as she realizes despite her husband’s placement, she is still his biggest advocate and full-time caregiver.
While Palm’s book portrays her experience as a spousal caregiver of dementia, it can be a useful guide for many primary caregivers living with a person with the disease. Her story reflects how a mind-stealing disease affects relationships of individuals tormented with dementia. Throughout the book, it becomes clear that the author’s professional skills and insight as a psychologist benefit her in the caregiving experience. This is both a strength and limitation of the book. Palm’s education contributes to her understanding of the disease, allowing her to clearly articulate her experience.
It is important, however, to remember that many caregivers do not have an education based on human behavior and the importance of developing coping skills. Each family’s experience is different. Varying skills and knowledge are brought to the caregiving experience. Not every individual with dementia experiences negative behaviors. This book meets its goals, emphasizing the importance of obtaining a dementia diagnosis in the early stage of the disease and ultimately finding healthy ways for both the person with dementia and their caregiver to cope with a very long and difficult journey. Because this book is a memoir, it is not research based and is limited to the author’s experience. It is written specifically for the struggles related to Alzheimer’s disease and related dementias and would not be recommended as a guide to readers caring for other chronic illnesses. Despite the fact that the book is not research based, it could be a valuable addition in an academic setting as it exposes information not often learned in a textbook. “Put That Knife Away” is an authentic representation of the caregiving experience that does not deny the reader the often taboo topics of violent behavior and inappropriate sexual behaviors. This is an important addition to dementia caregiver guides.