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Super/Normal
Published in Paul A. Rodgers, Design for People Living with Dementia, 2022
The emotional impact of caring can be even more debilitating. Informal carers speak of social isolation and marginalisation, unable to pursue activities that once gave their lives meaning. They are helpless to intervene as the person they care for – who may be a cornerstone of the carer's own self-identity – undergoes significant and irreversible changes in physical state, cognitive ability, and personality. This leads to a “biographical disruption” (Bury, 1982) as people experiencing dementia – and their carers – struggle to make sense of their new circumstances and unexpected limitations forced upon them. The psychological impact of dementia cannot be overstated. We understand our lives as linear paths of experience and accrual. Dementia subverts this, shrouding and then erasing elements of a person. This contributes to an ongoing sense of grief without closure, or “ambiguous loss” (Boss and Yeats, 2014). The cognitive atrophy of dementia affects carers as much as those diagnosed with the condition.
The long-term impact of brain injury
Published in Alyson Norman, Life and Suicide Following Brain Injury, 2020
Ambiguous loss: The sense of grieving never fully goes away. The sensation of living with someone who looks like the person you loved, but who is no longer that person, never goes away. It is exacerbated by those moments of hope, when changes in the person have become apparent and maybe even fleeting glimpses are seen of the former person. These hopes are then dashed by the return of the person who is not the old loved one but the new one. This is often associated with a sense of disappointment and then a sense of guilt for feeling that way (Clark-Wilson & Holloway, 2019; Townshend & Norman, 2018).
The impact of acquired brain injury on the family
Published in Jo Clark-Wilson, Mark Holloway, Family Experience of Brain Injury, 2019
Jo Clark-Wilson, Mark Holloway
Ambiguous loss is when the survivor or family members are experiencing the psychological loss of a person through some event or illness (Boss, 2006). In the case of brain injury, there is no physical death but loss of the person that the family and friends once knew. This type of loss can traumatise the survivor, friend or family member to the point where they lose all coping skills and their ‘resilience’ is ‘lost in a frozen iceberg of grief’ (Boss, 2006, p. 26). There is no closure. This continuing reminder of loss causes confusion, immobilisation and exhaustion, leading to a family member being unable to make decisions, and to make the necessary reorganisation of family roles and rules required to cope. If there is significant change in one family member, then it will impact and change the rest of the family, and this will have an effect on outcome (Maitz and Sachs, 1995).
Making Meaning of Integrated Care during a Pandemic: Learning from Older Adults
Published in Clinical Gerontologist, 2022
Elizabeth A. Beasley, Theresa L. Scott, Nancy A. Pachana
Older adults’ lives have been disproportionately influenced by the pandemic, because of their lowered immunity, increased comorbidities, and consequential increased susceptibility to the virus (Ishikawa, 2020). While many older adults have adapted to the losses and hazards the pandemic has brought, some are experiencing grief, including ambiguous, anticipatory, and complicated grief or loss (Ishikawa, 2020). An ambiguous loss occurs when there is physical absence with psychological presence, or psychological absence with physical presence (Boss, 2010). Many older adults have lost sources of support, freedom, and independence, as well as access to social support and services, and the ability to plan for their future (Bertuccio & Runion, 2020). Anticipatory grief refers to a grief reaction that occurs in anticipation of a significant loss (Bertuccio & Runion, 2020). People around the globe, including older adults, are grieving for losses they anticipate will occur, including the infection and death of family and friends, as well as themselves. Further, many are grieving the anticipated loss of events or milestones, including birthdays, anniversaries, and weddings (Wallace, Wladkowski, Gibson, & White, 2020).
Finding my way home: Ambiguous loss reconceptualized to bridge the conversion from in-person therapy to teletherapy during COVID-19
Published in Journal of Psychosocial Oncology, 2021
The theory of Ambiguous Loss was developed by Dr. Pauline Boss in the 1970s. Boss states that Ambiguous Loss is a traumatic relational loss that involves unimaginable circumstances that defy clarity or closure, resulting in an ongoing search for answers.1 Physical Ambiguous Loss is defined as a physical absence with a psychological, emotional presence, which can happen in a situation when a person you care about goes missing.2(p.8–9) The concept of Physical Ambiguous Loss gave me a framework for my perception that my patients “were here but not here.” The stress of this abrupt conversion at the eruption of the pandemic culminated in a perfect storm, and resulted in what Dr. Boss describes as boundary ambiguity: “not knowing who is in or out of the relationship”3(p.12–13) or, in my case, the therapy room.
“The things that people can’t see” The impact of TBI on relationships: an interpretative phenomenological analysis
Published in Brain Injury, 2020
Fiadhnait O’Keeffe, Johann Dunne, Maeve Nolan, Clodagh Cogley, John Davenport
In an effort to better understand the impact of TBI on relationships, and the healing processes of successful couples following TBI, Godwin, Chappell and Kreutzer (3) also used grounded theory to describe existing personal narratives written by individuals with TBI and their romantic partners who were acting as caregivers. A recurring theme of Ambiguous loss was identified, whereby both caregiving partners and TBI survivors felt the loss of previous selves and relationships without being able to concretely label such feelings as grief. Tenuous stability, described as a pervasive sense of uncertainty regarding all aspects of the post-injury relationship, was also a predominant theme. The term “relational recycling” was used to refer to the process of healing for couples and the way in which couples redefined themselves as “The New Us” following brain injury. While Godwin et al. (3) describe a significant dearth of detailed literature on couple relationships post TBI, they emphasize the importance for clinicians of seeking to understand the relationship changes that occur in order to be better able to support couples post injury.