Monday, June 12, 2017
Bettyville: A Book Review
Bettyville: A Memoir. George Hodgeman. New York: Viking Penquin, 2015. 278 pp.
Bettyville is an autobiographical story of one man’s navigation through what he refers to as “Bettyville.” “Bettyville” is a place both familiar and foreign to the author, George, that is more so the description of the mental and emotional places George resides through caring for a mother with dementia than a physical place. George begins his journey certain his trip will be short as he plans to sell the family home and place his mother in a facility. A week becomes and year and George soon finds himself a permanent resident of both “Bettyville” and the small town he abandoned years ago. Betty is insistent on being home and out of love and devotion George sets himself about becoming her primary caregiver. The story veers from traditional linear stories and bounces frequently between memories and moments often blurring the lines between the two. The book exhibits great balance between the highlighting the symptoms of dementia and how it affects those involved.
“I’ll Be Your Soldier” was song loved by the author during his time on Fire Island that signified staying or standing with a person through whatever troubles come, and seems to perfectly encapsulate the author’s journey through “Bettyville.” Bettyville’s dance between George’s childhood memories, his time as an adult struggling as a gay man, and the begrudging care of his aging mother covers what seems to be most every emotion from fondness to sadness with an underlying sense of anger at the disease that is slowly taking Betty away from them both.
George is a free lance editor who has spent his life in New York currently caring for his elderly mother suffering from “Dementia and maybe worse.” Betty is a 90-year-old widow who has spent her entire life in the small town of Paris, Missouri certain of who she is and what she wants. In contrast, George was a fifty-year-old gay man who spent his life struggling through broken relationships, feeling alone, and always wondering if his mother truly knew who he was; though he wasn’t quite sure himself. A loss of George’s job and surgery that hindered her caregiver Carol, lands the two reconnected in the home George grew up in, but this time roles were reversed.
Through both sadness and anger George shares moments with his mother that relate strongly to other texts regarding the signs and symptoms of Dementia. Flores and Ahmed (n.d.) report that Dementia has an uncertain beginning and progresses slowly, but is evidenced by a loss of memory and orientation, difficulties with word choices, and in the end impairs all mental functions. George speaks of small events that originally made him feel concerned for his mother, at times feeling that something was off but not being able to place it exactly. This is common with caregivers of those with Dementia, especially those who do not live together (Quadrango, 2014).
Betty was frequently frustrated by an inability to remember everything from words to events and people in her life. At points in the story she seemed almost obsessive over forgetting certain words such as “eggnog” or the names of hymns she played when she was young which is consistent with Quadrango’s (2014) description of Dementia including confusion and repetition. The book reminded me of my own experiences with my great grandmother who suffered from Alzheimer’s and frequently forgot things almost as soon as you said them. I wasn’t very close to her so I could not relate to some of the more intense feelings George describes navigating as Betty’s caregiver, though I believe he did an excellent job describing them.
It is clear that both Betty and George realize that something is wrong, though they never speak about it. This same silence has been the cornerstone of their relationship, as they loved each other “in spite of” the contrast between the person they wanted one another to be and reality. For George, he longed for his mother to be the robust, energetic, and steadfast woman of his childhood instead of the frightened, frail, and ever disappearing old woman she had become. Betty had plans for her son, to marry and live a “normal” life that was squashed when he revealed himself to be a gay man. The lack of communication is something that most every reader can identify with.
As the story progresses dementia both draws them closer as Betty’s needs increase due to cancer, and pulls them farther apart as she struggles with known symptoms of dementia: Personality changes, being withdrawn, physically aggressive, sleep disturbance, fatigue, and obvious depression (Quadrango, 2014). Like many women, Betty has many people in her support network aside from George to help provide her with emotional and instrumental support, though George is her primary provider (Quandrango, 2014).
The book describes many occasions throughout George’s life when his interactions with his mother strengthened his resolve to be her “soldier” through the end rather than place her in a care facility. These support bank deposits allowed George to continue on as he struggled with his own anxiety, depression, and anger related to caregiver fatigue (Quandrango, 2014).
The story ends not with an explanation of how things ended with Betty but an imagined account of George’s own struggle with dementia in his last days. I really wish that there had been a conclusion to Betty’s story. I have a lot of questions like: Did George stay in Missouri or return to New York? Was Betty able to finish out her last days at home or did her cancer make her so sick she died in the hospital? Did Betty’s acknowledgement of his good care of her and her joking about him having a gay relationship with his doctor bring George any comfort in his final days or did he attribute the change to her Dementia?
Bettyville is an excellent depiction of the struggle to care for someone with Dementia. It summarizes both the joy and struggles of being able to help someone navigate their illness with tinges of sadness about what that illness steals. The signs and symptoms of dementia are accurately depicted while including their emotional and psychological impact on both the sufferer and their caregiver. The story is heartwarming and heartbreaking at the same time yet never fails to convey the author’s intense devotion to his mother.
Flores, R., & Ahmed, N. (n.d.). Dementia: A brief overview. Retrieved from Houston Geriatric Education Center website: http://www.houstongec.org
Quadango, J. (2014). Aging and the life course: An introduction to social gerontology (6th ed.). New York, New York: McGraw-Hill Companies, Inc.
Making Gray Gold: A Book Review
Making Gray Gold: Narratives of Nursing Home Care. Timothy Diamond. Chicago and London: The University of Chicago Press. 1992. 280 pp.
The plight of the elderly in America is wrought with failures and a lack of concern and focus on their wants and needs. In Making Gray Gold, Diamond paints a tragic picture of the lives of those who live and work in a nursing home based on his personal experiences as a nursing assistant and his educational background as a sociologist. In a project that took over ten years time Diamond worked as a nursing assistant while carefully documenting his experiences through his ties to Northwestern University’s Program on Women. The University, the Midwest Council for Social Research in Aging, The Retirement Research Foundation, California State University, and many colleagues, coworkers, and fellow ethnographers also supported him over this ten-year journey.
Diamond’s book is based on many years worth of experience as a sociologist and nursing assistant in multiple types of nursing home settings; from those who cater to the wealthy to those dependent on Medicaid because they were or have become destitute. It is important to note that while Making Gray Gold is a narrative; it is far more than Diamond’s story. Making Gray Gold is a compilation of the complex and interwoven story of the nursing home industry and the colorful tapestry of those under its rule.
Diamond collected data and wrote about his findings through unconventional methods. As he worked as a nursing assistant he wrote notes on scraps of paper that he later assembled. The assembled writings were studied for patterns and written about in a narrative format. While he utilized multiple outside resources in the formation of his theories, he cites them as endnotes rather than including them directly in the book. Diamond believes this helps with the continuity of his story. I must say this was on of my favorite features of this text. Many times when reading research based information it is easy to get distracted and lost in all of the citations. The format Diamond used allows readers to get immersed in the story without getting bogged down outside citation information that can easily be found in the back.
Through sharing personal narratives Diamond defines the problems currently plaguing the nursing home industry. The nursing home industry turns people into patients and the “complex act of caretaking into quantifiable tasks” (p.170). While the nursing home industry works to turn people into patients and caretaking tasks into something quantifiable, Diamond’s storytelling draws the personhood back out of a quagmire of bed numbers and bottom lines.
Concerns from the staff were met with severe admonishment that their job was to care for patients, not criticize. There were very strict boundaries between management and those who provided direct care. This often left Diamond, his colleagues, and patients filling in the gaps left by a system where money is the bottom line. While bureaucracy reigned over the nursing home facilities, it failed to keep the staff and patients from maintaining small pieces of their independence and humanity. From clients helping one another get up to staff accepting tips to help residents feel a sense of autonomy, they all worked together in a give and take fashion. This undercurrent of caring and fights for autonomy bleed through the lines of Diamond’s narrative and left me feeling compassion for those involved. There were moments throughout the story when I felt myself cheering Diamond or other clients on as they fought against the bureaucratic system.
Nursing home patients come in from various levels of social standing, cultures, and backgrounds, yet they end up enmeshed under social policies that “abstract two common characteristics of their lives, disability and impoverishment, and corralled them into the same living space” (p.67). While some who started their time in a nursing home may have had assets and wealth, the structure of the system quickly drained those resources and left the person dependent on Medicaid. Medicare and Medicaid are described as the “twin pillars of long term health care policy” (p.56). A person entering nursing home care is first covered by their private insurance, private pay, or for short-term stays, Medicare. The high cost of care quickly depletes those resources. Patients are eligible for Medicaid only when they have reached the poverty level. Patients are required to “spend down” their assets before they can have any assistance (p.59). By the time patients reach this level; they have become dependent on the care. Many have had to sell their homes and have no other resources to rely on. They come in because they need assistance with their daily living and stay because they have no other place to go.
While Quadango (2014) reports that people who have resources earlier in life continue to have opportunities to accumulate more, the Cumulative Disadvantage Theory is contrary to the experiences reported by Diamond. While some residents in nursing homes may start in private homes where they receive greater care, he reports that many quickly deplete those resources and are moved into homes where resources are few and care is strained. What is important it note is that the quality of care is not at all related to those providing the care, but to the bureaucratic nightmare that governs the home. Overworked staff given too many patients and not enough time simply cannot provide the same level of care as those with lesser patients and more resources.
Making Gray Gold was consistent with other resources reporting about the differences in the gender ratio in nursing homes Both Diamond and Quandrango (2014) report that there are far more female residents in nursing homes than males. Quandrango (2014) reports that this difference is due to the fact that women live longer than men and typically are the caregivers so when they need someone to care for them, there is no one.
Diamond has many lofty suggestions for reformation. He believes that nursing assistants should form unions so that they have the ability to fight against their working conditions. According to Diamond the residents should be involved in planning how the home operates it’s daily schedule. He points to many occasions where the current system fails to meets residents needs such as residents being forced to wake up at 7 am, take showers whether or not warm water was available, and meal times that left them hungry for hours at a time.
Making Gray Gold is a sympathetic portrayal of the lives of those involved in the nursing home care system. From patients to direct care staff, stories encapsulate the struggle between the needs of patients to the resources available, both of which at the mercy of a money driven bureaucracy. This is the most informational and easily read book that I have ever read concerning the care of the elderly. The resources cited allowed me to research any additional information when a question arose. I would highly recommend anyone working with the elderly or their families be required to read this text, especially those in management.
Diamond, T. (1992). Making gray gold: Narratives of nursing home care. Chicago and London, IL: The University of Chicago Press.
Quadango, J. (2014). Aging and the life course: An introduction to social gerontology (6th ed.). New York, New York: McGraw-Hill Companies, Inc.
Abuse of Persons with Disabilities
The abuse of persons with disabilities is defined as the physical, sexual, emotional abuse or exploitation of any person with developmental, physical or intellectual disabilities (Baladerian, Coleman, and Stream, 2013). Abuse of persons with disabilities is often underreported and unrecognized despite the fact that they are more than three times likely to be abused than a person without disabilities (Baladerian et al., 2013). Being disabled makes people vulnerable to abuse regardless of what category of disability they fit in; though there are some disabilities that appear more likely to experience abuse and also fail to report it.
Prevalence of Abuse
Baladerian et al., (2013) surveyed over 7000 persons with disabilities, family members, service providers, professionals, response personnel, and advocates in an effort to determine the types and frequency of abuse suffered by people with disabilities. While others were included, most of the people who took the survey were directly connected to disability issues either as a person with a disability or having an immediate family member with a disability (Baladerian et al., 013).
Of those surveyed with disabilities, over 70% reported being a victim of abuse at some point in their lives, with more than 63% of parents or family members reporting their relative had experienced abuse (Baladerian et al., 2013).
The survey conducted by Baladerian et al. (2013) found that the type of disability was related to the number of abuse incidents: Mental health conditions (74.8%), speech disability (67.1), autism (66.5%), intellectual or developmental disability (62.5%) and a mobility disability (55.2%).
Types and Frequency of Abuse
Baladerian et al. (2013) found that the prevalence of abuse varied with the type of abuse experienced. Dixon, Biggs, Stephens, and Tinker (2013) found that abuse could occur in singlular or multiple acts and could be:
Physical, verbal or psychological, it may be an act of neglect or omission to act, or it may be when a vulnerable person is persuaded to enter into a financial or sexual transaction to which he or she has not consented or cannot consent.
The most common form of abuse experienced was verbal or emotional abuse at 87.2% (Baladerian et al., 2013). Physical and sexual abuse accounted for 50.6% and 41.6% of abuse reports respectively (Baladerian et al., 2013). Neglect accounts for 37.7% of abuse incidents (Baladerian et al., 2013). Of those surveyed, 31.5% reported experiencing some type of financial abuse (Baladerian et al., 2013). It is also important to note that the statistics related to the abuse of disabled persons is considered to be very unreliable due to a failure to report (Sin, Sheikh, & Hohini, 2012).
Baladerian et al. (2013) report that sexual abuse showed the most varied responses according to the type of disability the victim had: mental health conditions (47.4%), intellectual or developmental disabilities (34.2%), mobility disabilities (31.6%), and autism (24.9%). More research needs to be conducted to determine if it is the type of disability or the sensitive nature of sexual abuse that has resulted in such vast differences in reporting prevalence. It is curious that minor abuse is the most often reported.
The frequency of abuse experienced by persons with disabilities is stunning. Over 90% report being abused multiple times with 57% of them stating they had been abused more than 20 times, and 46% reporting it had occurred on countless occasions (Baladerian et al., 2013). The abuse can occur in any setting and in any type of relationship (Dixon et al., 2013)
Perpetrators of Abuse
Abuse can occur in many settings, from a home or school environment to community and residential settings. Dixon, Biggs, Stephens, and Tinker (2013) report that current definitions of both abuse and perpetrators vary widely and include content that is both imprecise and subjective. The lack of concise and comprehensive definitions leads to random and subjective awareness, prevention, and interventions of abuse situations (Brammer & Biggs, 1998).
Dixon, Biggs, Stephens, and Tinker (2013) highlight the many ways in which current definitions of a perpetrator fail to recognize the complexities of abuse and neglect and the relationships involved therein. There is often is a lack of balance between concerns about the experience of the victim and what the perpetrator intended (Brandl et al., 2007). There is also a problem with the generally accepted idea that perpetrators of abuse must be in a position of trust. Dixon et al., (2013) point out that there are many instances in which abuse occurs that a trust relationship does not exist because they have not “assumed a duty of care.”
One consistent characteristic of an abuser is the desire or need for power and control (Brandl et al., 2007). For them, a person who is in some way disabled is the perfect target (Brandl et al., 2007). A physically disabled person may not be able to defend himself or herself from physical or sexual assault or remove themselves from neglectful situations (Brammer & Biggs, 1998). A person who is mentally disabled may not know or understand that abuse is happening to them or have the capacity to report their abuse (Brandl et al., 2007). Having a disability can also change the power dynamics in such a way that the victim is dependent on their abuser, which also makes getting out of the situation difficult (Brandl et al., 2007).
There are many cases in which social and economic pressures along with a caregiver’s inability to cope can lead to a person becoming a perpetrator (Brinig, 2012). Many relationships are based on reciprocity in some form or fashion but when caring for a person who is disabled, especially if those disabilities are severe, there is little compensation for the effort they put forth and the person who is disabled becomes a scapegoat (Brinig, 2012). This is also known as caregiver fatigue or stress (Brandl et al., 2007).
Systemic Responses to Abuse
A lack of information, fear, and the belief that nothing would happen are the primary reasons that persons with disabilities and their loved ones fail to report abuse (Baladerian et al., 2013). These numbers fail to improve regardless of the seriousness of the abuse and only slightly improve with family member involvement (Baladerian et al., 2013).
Many of those tasked with reporting, investigating, and prosecuting those who have perpetrated abuse against a person who is disabled are ill prepared for that task. Sin, Sheikh, and Hohini (2012) report that there is poor accountability and a lack of training and support for professionals. There are limited policies and procedures that are specifically designed to meet the needs of those in the community who are disabled (Sin, Sheikh, & Hohini, 2012). For the most part the agencies who are tasked with handling the abuse do not have the experience or training necessary to create effective intervention and
Those within the disabled community see how the authorities treat other victims and come to believe that their attempts to hold the abuser accountable are futile. Statistics related to prosecution and conviction of abuse strongly support those fears. In 52.9% of cases where someone with a disability reported abuse, nothing happened and only 9.8% of the perpetrators were ever arrested (Baladerian et al., 2013). Numbers diminished when family members made the reports with nothing happening in 42.8% of cases and only 7.8% of alleged perpetrators being arrested (Baladerian et al., 2013).
A lack of information and understanding about what abuse is and the importance of reporting is the primary hindrance for the arrest and prosecution of those responsible for abusing person with disabilities (Baladerian et al., 2013). Family members, community members, and services providers should also be educated about indicators of abuse and proper reporting and intervention methods to ensure they are able to protect those who are unable to protect themselves (Baladerian et al., 2013).
Even when a disabled person reports their abuse and either the perpetrator is punished or they are removed from the situation, the extreme lack of services and placements make it so that the victim doesn’t have a place to go (Baladerian et al., 2013).
With only 37.3% of abuse victims reporting abuse to authorities, it is no wonder that so few perpetrators ever face arrest or prosecution (Baladerian et al., 2013). Family member involvement improves these numbers only slightly to 51.7% (Baladerian et al., 2013).
Many states offer victim compensation programs, yet less than 5% of disabled persons benefit from these type of programs (Baladerian et al., 2013). Victim compensation programs often include therapy and other support services that could be highly beneficial to the person who has been abused. Despite this, over 65.4% of abuse victims who have a form of disability never receive any type of counseling or therapy (Baladerian et al., 2013). This is tragic because when those who have received therapy have found that it was helpful.
The population of disabled persons is in great need of change to the way abuse is determined, reported, and handled. Even with disabled persons being three times more likely to be abused, there is yet to be a single federal employee who is tasked with handling abuse (Brandl et al., 2007). A lack of organization and information oftentimes lead to a failure of victims and their families to report as well as anything to be done when they do. Our most vulnerable members of society have little to no protection; remaining at the mercy of the negligent, overwhelmed, or cruel.
Baladerian, N. J., Coleman, T. F., & Stream, J. (2013). Abuse of people with disabilities: Victims and their families speak out. A Report on the 2012 National Survey on Abuse of People with Disabilities, , 1-39. Retrieved from http://disability-abuse.com/survey/survey-report.pdf
Brammer, A., & Biggs, S. (1998). Defining elder abuse. Journal of Social Welfare and Family Law, 20(3), 285-305. doi:10.1080/09649069808410253
Brandl, B., Dyer, C. B., Heisler, C. J., Otto, J. M., Stiegal, L. A., & Thomas, R. W. (2007). Elder Abuse Detection and Intervention. New York, New York: Springer Publishing Company, LLC.
Brinig, M. F. (2012). Explaining abuse of the disabled child. Family Law Quarterly, 46(2), 269-296. Retrieved from https://ezproxy.shsu.edu/login?url=http://search.proquest.com/docview/1272443428?accountid=7065
Dixon, J., Biggs, S., Stephens, M., & Tinker, A. (2013). Defining the "perpetrator": Abuse, neglect and dignity in care. The Journal of Adult Protection, 15(1), 5-14. doi:http://dx.doi.org/10.1108/14668201311299872
Sin, C. H., Sheikh, S., & Hohini, K. (2012). Police readiness for tacklling hate crime against people with learning disabilities-areas for improvement and examples of good practice. Safer Communities, 11(3), 145-153. doi:http://dx.doi.org/10.1108/17578041211244058
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