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Revisiting 'The Mother Who Changed: A Story of Dementia'

By The New York Times

This episode of The Daily revisits the story of Diane Norelius, a woman whose life was drastically altered by dementia. Initially depicted as the contented heart of a close-knit family, Diane's personality and relationships underwent a profound transformation as her Alzheimer's disease progressed.

The summary examines the ethical dilemma faced by Diane's family, as they grappled with whether to honor her current desires and perceptions or her past wishes and identity. It explores the complex question of determining the "true self" when cognitive decline reshapes an individual's personality over time. Diane's case highlights the legal and personal challenges surrounding dementia care and the balance between self-determination and protection.

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Revisiting 'The Mother Who Changed: A Story of Dementia'

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Revisiting 'The Mother Who Changed: A Story of Dementia'

1-Page Summary

Diane Norelius Before Dementia

Diane Norelius was the heart of her happy family, managing the household while her husband Bill worked, as Kris Norelius recalls. She was confident, involved in the community, and content as a 1950s housewife. Diane's life centered around supporting Bill and their three children.

The Progression of Diane's Dementia

After Bill's death in 2011, Diane experienced significant losses, including her son Eric's passing. Her personality transformed as dementia set in - she became aggressive and unkempt, as Juli Norelius observed. Diane was ultimately diagnosed with late-stage Alzheimer's.

Conflict Over Diane's Care

Diane's daughters, Chris and Julie, grew concerned about a man named Denzel's increasing influence over their mother, who had added him to her bank accounts. The daughters sought legal guardianship to protect Diane, but she rejected them, insisting she loved Denzel.

As Katie Engelhart explains, the court had to balance Diane's current desires with her prior wishes and cognitive abilities. Her daughters argued for honoring Diane's long-standing instructions, while Denzel pushed for respecting her present self's preferences. Engelhart highlights the lack of consensus on which 'self' to prioritize when dementia alters an individual's identity over time.

1-Page Summary

Additional Materials

Clarifications

  • The legal guardianship process involves a court appointing a guardian to make decisions for someone who is deemed unable to make decisions for themselves. In the case of Diane, her daughters sought guardianship to protect her interests as her cognitive abilities declined due to dementia. The court had to consider Diane's current wishes, her past instructions, and her capacity to make decisions when determining the best course of action. This process can involve complex legal and ethical considerations, especially when there are conflicting opinions about what is in the individual's best interests.
  • When dealing with dementia, individuals may express desires that conflict with their past wishes due to cognitive decline. This creates a challenge in determining which preferences to prioritize - current wishes or previously stated instructions. Legal and ethical dilemmas arise in balancing autonomy, past directives, and the individual's current capacity to make decisions. The evolving nature of dementia can complicate decision-making, requiring a delicate balance between respecting the person's autonomy and ensuring their well-being.
  • When dementia changes a person's identity, there can be conflicts on whether to prioritize their current wishes or their past preferences and cognitive abilities. This dilemma arises when individuals with dementia express desires that differ from their previously stated wishes. Balancing these conflicting aspects of identity can lead to legal and ethical questions regarding decision-making for individuals with dementia.

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Revisiting 'The Mother Who Changed: A Story of Dementia'

Diane Norelius' life and personality before the onset of dementia

Diane Norelius is remembered warmly for her role and personality before dementia impacted her life.

Diane was the backbone and center of her happy, traditional American family

Diane Norelius was the heart and soul of her family, providing a stable and nurturing environment for her children. Kris Norelius fondly recalls how Diane managed the household while her husband, Bill, was often working. She was the one who ensured that everything ran smoothly at home, allowing her children to enjoy a wonderful childhood.

Diane was confident, involved in the community, and happy in her role as a 1950s housewife

Diane's confidence and active participation in community life made her a significant presence beyond her family. Kris highlights Diane's involvement in various community roles, including serving on the school board, driving a school bus, and being a member on the state library board. Her engagement in these activities demonstrated her commitment to her local community and her joy in fulfilling the traditional role of a housewife in the 19 ...

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Diane Norelius' life and personality before the onset of dementia

Additional Materials

Clarifications

  • Diane Norelius played a central role in her family, managing the household while her husband worked. She ensured a stable and nurturing environment for her children, allowing them to have a happy childhood. Diane's life revolved around her husband, Bill, and their three children, and she was deeply committed to supporting her family before her husband's passing in 2011.
  • Diane Norelius transitioned directly from nursing school into marriage in her early twenties, dedicating herself to her husband and family. This shift marked a significant change in her focus from pursuing a nursing career to prioritizing her role as a wife ...

Counterarguments

...

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Revisiting 'The Mother Who Changed: A Story of Dementia'

The progression of Diane's dementia and the changes in her behavior and relationships

Diane's life underwent dramatic changes following her husband Bill's death in 2011, which affected her behavior and relationships due to the onset of dementia.

Diane experienced significant life changes and losses after her husband's death

Diane suffered compounded losses, including the death of her son, Eric, to cancer, which took away her only son and one of her supportive children. Her daughter Julie, who lived next door, also moved to Colorado after getting divorced. These events left Diane feeling alone.

Diane's personality and appearance began to change, becoming more aggressive and unkempt

Juli Norelius noticed a stark transformation in Diane's behavior; the once joyful and joyous woman grew sour and began to behave aggressively and meanly towards people. Around this time, Diane, recognizing her mind was faltering, began rearranging her affairs, striving to be her own person and make her own decisions.

The changes in Diane extended further as she exhibited physical aggression; during a car ride, she became upset and cla ...

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The progression of Diane's dementia and the changes in her behavior and relationships

Additional Materials

Clarifications

  • Diane's relationships with her family members were strained due to the losses she experienced, leading to increased feelings of loneliness and isolation. Her daughter Julie moving away and her son's passing contributed to her sense of being alone. Diane's behavior changes, like becoming more aggressive, further impacted her relationships with her daughters.
  • Alzheimer's disease progresses through several stages: mild, moderate, and severe. In the mild stage, memory loss and cognitive decline begin to ma ...

Counterarguments

...

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Revisiting 'The Mother Who Changed: A Story of Dementia'

The conflict between Diane's family members (her daughters and Denzel) over her care and decision-making abilities

A complex and heart-wrenching situation unfolds as Diane's cognitive decline places her at the center of a dispute between her two daughters and a man named Denzel over her care and autonomy.

Diane's daughters, Chris and Julie, became concerned about Denzel's increasing influence over their mother

Chris and Julie Norelius began to worry about their mother Diane's wellbeing and her increasingly restricted accessibility. Denzel seemed to be coaching Diane during their less frequent phone conversations. The daughters felt a sense of gradual isolation from their mother.

Denzel was added to Diane's bank accounts and granted financial power of attorney. Diane also redrafted her will to give Denzel the right to live on her property after her death, and she dissolved her financial trust, which Julie had managed, with large cash withdrawals causing further concerns.

Michael Barbaro discusses the implications of Diane's dementia diagnosis and her actions, like giving Denzel power of attorney. Meanwhile, Katie Engelhart points out that Diane’s daughters only realized the extent of their mother’s impairment after being concealed from them.

Denzil Nelson believed Chris and Julie sought to control Diane's life, whereas Chris was especially concerned about Denzel living in the house she still associated with her late father.

Julie reminisces about how Denzel, once her father-in-law, became a significant part of her mother’s life after Diane's support group had seemingly abandoned her. Denzel appeared as a rough-around-the-edges cowboy figure, quite a contrast to Diane's late husband.

Denzel expressed surprise upon learning that Diane’s financial matters, including her social security check, were managed by Julie through a trust. Diane also spoke about wanting to handle her own money and be her own person before dying. Yet, the intense conflict led to a restraining order against Denzel, prohibiting further actions of elder abuse.

Despite the legal turmoil, Diane insisted she loved Denzel and wanted nothing further to do with her daughters. After the removal of Denzel from the home, Diane repeatedly asked fo ...

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The conflict between Diane's family members (her daughters and Denzel) over her care and decision-making abilities

Additional Materials

Clarifications

  • Denzel was a man who became involved in Diane's life and gained significant influence over her decisions, including financial matters and her will. He was seen as a controversial figure by Diane's daughters, who were concerned about his intentions and his impact on their mother's well-being. Despite the conflict and legal battles that ensued, Diane expressed a strong attachment to Denzel and chose to maintain her relationship with him over her daughters' objections.
  • Diane had a financial trust managed by her daughter Julie. She made significant cash withdrawals from this trust, causing concern for her daughters. Diane's actions, like dissolving the trust and giving financial power of attorney to Denzel, raised suspicions about her financial decision-making abilities.
  • Guardianship is a legal process where a guardian is appointed to make decisions for someone who is unable to make decisions for themselves due to incapacity. The guardian can make decisions regarding the person's personal affairs, medical care, and financial matters. Obtaining guardianship involves a court process where evidence of the individual's incapacity is presented, and the court determines if guardianship is necessary and who the most suitable guardian would be. The guardian has a legal duty to act in the best interests of the incapacitated person and must report to the court regularly on the person's well-being and any major decisions made on their behalf.
  • The philosophical debate about prioritizing Diane's expressed wishes versus her dementia revolves around the ethical dilemma of honoring a person's auton ...

Counterarguments

  • Diane's cognitive decline may have impaired her judgment, but it is also possible that her decisions to involve Denzel were made during moments of lucidity.
  • Granting Denzel financial power of attorney and the right to live on her property could be seen as Diane exercising her autonomy and making choices about her own life and assets.
  • The daughters' concerns about Denzel's influence might be perceived as protective, but could also be interpreted as them not respecting Diane's right to form new relationships and make her own decisions.
  • The dissolution of the financial trust and the large cash withdrawals could have been Diane's way of asserting control over her finances, rather than a sign of undue influence.
  • The daughters' attempt to gain legal guardianship could be seen as an act of care, but it could also be viewed as them not honoring Diane's expressed desire to maintain her independence and relationship with Denzel.
  • The restraining order against Denzel was based on allegations of elder abuse, but without clear evidence, it could be argued that this was a drastic measure that may not have been justified.
  • The appointment of Marsha Losh as guardian might have been a neutral solution, but it could also be argue ...

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Revisiting 'The Mother Who Changed: A Story of Dementia'

The legal and ethical questions surrounding Diane's autonomy and the right to make her own choices as her dementia advances

As Diane’s dementia progresses, the legal system grapples with the challenging task of balancing her current expressed desires against her historical wishes and her cognitive abilities.

The court had to balance Diane's current desires with her previous stated wishes and her cognitive abilities

The court is faced with a difficult decision: what Diane really wants—what she is saying she wants now, or what she stated consistently for years before her cognitive decline. The guardianship trial for Diane has sparked intense debate over which version of Diane should be granted precedence. The court's approach acknowledges the complexities involved in preserving autonomy for dementia patients. It involves considering the patient's current statements in relation to their past expressed wishes, in light of the fact that a dementia diagnosis does not automatically strip someone of all decision-making capabilities as it might have in the past.

Katie Engelhart clarifies that the diagnosis of dementia does not automatically render a person incapable of making all decisions. She articulates that it is a gradual process, where the capacity for decision-making can diminish over time. The court, recognizing this nuanced progression, has decided to appoint a guardian who is neither Diane's daughters nor Denzel, but instead a third party. Engelhart notes the inherent difficulty in deciding when a person with dementia no longer has the ability or legal right to make decisions for themselves and that there's no distinct threshold for this.

Diane's daughters and Denzel each argued for different versions of Diane's 'true self' to be prioritized

Diane's daughters, Chris and Julie, have argued that they should care for their mother based on her long-standing instructions in case she ever developed dementia. Denzel, on the other hand, has argued that the current expressions of Diane should be taken as most significant, even if they conflict with her earlier stated desires.

This guardianship trial turns into a philosophical debate about which version of Diane should be listened to, highlighting the issue of maintaining autonomy in the face of mental deterioration. The daughters are committed to fulfilling the wishes expressed by Diane before her decline, while Denzel believes in prioritizing the present wishes of Diane, as she currently expresses love and a seeming clearness of ...

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The legal and ethical questions surrounding Diane's autonomy and the right to make her own choices as her dementia advances

Additional Materials

Clarifications

  • Guardianship in legal proceedings involves appointing a guardian to make decisions for someone who is deemed unable to make decisions for themselves, often due to incapacity or disability. The guardian is typically tasked with making decisions related to the individual's personal welfare, finances, or both. The process aims to protect the individual's best interests and ensure their well-being when they are unable to do so themselves. Guardianship can be temporary or permanent, depending on the circumstances and the individual's needs.
  • The progression of decision-making capacity in individuals with dementia is a gradual process where cognitive abilities decline over time. Dementia affects decision-making abilities differently in each person, with some retaining certain capacities longer than others. This decline can vary from simple decisions to more complex ones, impacting autonomy gradually. Understanding this progression is crucial in legal and ethical discussions surrounding decision-making for individuals with dementia.
  • The debate over prioritizing past vs. present wishes of individuals with dementia revolves around the challenge of determining whose preferences should hold more weight as the disease progresses. It involves balancing the desires expressed by the individual before dementia onset with their current wishes, which may differ due to cognitive decline. This debate raises complex ethical and legal questions about autonomy, decision-making capacity, and the evolving nature of personal identity in the context of dementia. The struggle lies in reconciling conflicting expressions of self over time and deciding how to best respect the autonomy and well-being of individuals with dementia.
  • In cases of dementia, ethical dilemmas arise when individuals express conflicting desires due to cognitive decline. This complexity stems from the challenge of determining which version of the person's wishes should be prioritized—current expressions or past instructions. Balancing autonomy and decision-making capacity becomes intricate when considering how dementia alters preferences and behaviors over time. The ethical deb ...

Counterarguments

  • The legal system may not always be the best equipped to understand the nuances of an individual's cognitive state and personal history, potentially leading to decisions that don't fully align with the individual's best interests.
  • Appointing a neutral guardian can be seen as a failure to honor the individual's previously expressed wishes, especially if those wishes were clear and documented.
  • The assumption that dementia does not immediately strip decision-making capabilities might overlook the fact that the ability to make informed decisions can be compromised early in the disease process for some individuals.
  • There might be a risk of oversimplifying the determination of when a person with dementia loses decision-making ability, as it can vary greatly between individuals and is not always a linear process.
  • The argument that prioritizes Diane's past wishes may not take into account the possibility that individuals can change their minds, and that even with dementia, their current wishes could be a reflection of their true self.
  • The debate between past vs. present wishes might not fully consider the potential for manipulation or misunderstanding of a person with dementia's current expressions, which could be influenced by their condition or external factors.
  • The ethical complexity of honoring conflicting expressions might not ...

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