Author: Dr Irene Hartigan, University College Cork
Date of Publication: February 2021
Keywords: restricted visiting, long-term care environments, separation, anticipatory grief, loss, anticipatory mourning.
In 2019 the world was catapulted into a situation that impacted on all generations across the globe. As we approach the one-year anniversary of the COVID-19 pandemic, we are still struggling with intermittent lockdowns and witnessing human suffering and loss. In the Republic of Ireland, we have confronted three waves of the pandemic (March-June 2020, September-November 2020, January-March 2021). During the first wave, the Irish Government introduced stringent lockdown restrictions, during which time, nursing homes prohibited all visitors. Across Europe, many countries, including Germany, the Netherlands, Belgium, and France, forbid all visitors to nursing homes as obliged by law (Verbeek et al, 2020).
It is well known that the risk of COVID-19 infection is higher for older adults with underlying conditions who live in long-term care facilities, aged care homes, nursing homes and similar facilities (Lloyd-Sherlock et al., 2020; Wang et al.,2020, Garnier-Crussard et al., 2020; Roland & Markus, 2020). Unfortunately, nursing homes can act as a breeding ground for infections (Armitage & Nellums, 2020; Berger et al., 2020) which lead to the difficult and heart-breaking decision to prohibit all visitors. The consequence of imposing a blanket restriction meant families were unable to play an active role in the ongoing wellbeing and resilience of residents, e.g., “providing emotional support, reminiscing, preserving identity and continuity, as well as acting as advocates, communicators, and allies” (Dept of Health, 2020 p.6). This meant that residents were left isolated, without being able to see their family, only intensifying their vulnerability (Faghanipour et al., 2020). Healthcare workers did support creative ways to connect families. However, this produced its own challenges for residents with cognitive impairment.
Meanwhile the Health Service Executive was responding to the COVID-19 crisis and issuing guidance for persons who are not suspected or confirmed cases of COVID-19 in nursing homes. The National Public Health Emergency Team (NPHET) was established in January 2020 and provided direction on the implementation of a strategy to respond to COVID-19. In May 2020, a COVID-19 Nursing Homes Expert Panel was established and reported on the complex issues surrounding the management of COVID-19 in nursing homes among this particularly vulnerable cohort. The abundance of challenges faced by health care workers were documented, which related to access to PPE, visitor restrictions, staff shortages, infection control, palliative care and the lack of ability to provide bereavement support amongst others.
Following the first wave of the pandemic, visitors could resume visits to residents in nursing homes albeit in a different way. The ‘new normal’ stipulated several preconditions for visitors such as one designated visitor per resident, personal hygiene measures and COVID-19 symptom checker to determine COVID-19 symptoms. Other logistics’ were applied to the actual visit which included booking an appointment with the nursing home staff to see their loved one, a time bound visit within a special room with a perspex screen and in some instances an intercom. Nonetheless, this gave residents and families a chance to connect with each other after months of not being able to see one another.
Initially the visiting restrictions were difficult to process, however the safety and protection of older adults was paramount. As the weeks and months of not being able to visit family or friends in long term care continued, emotions surfaced such as loneliness, anxiety, confusion, worry and sadness. Residents and visitors all have felt these emotions during these unprecedented times and whether consciously or subconsciously, this has had an impact on residents’ behaviour and well-being. In Malaysia, older adults described the profound disconnect from the outside world and were scrambling with feelings of fear and uncertainty (Chee et al., 2020). Similarly, evidence from Ireland and the Netherlands emerged that relatives experienced low psychosocial and emotional well-being during the COVID-19 lockdown (O’Caoimh et al., 2020; Wammes et al., 2020). Feelings of loss and disconnect caused grief for residents and families.
Different kinds of grief
Grief is a natural response to loss, however, the grief that families and residents were experiencing is different to conventional grief. Unbeknownst to themselves, residents and families were experiencing anticipatory grief. This is described by Wallace et al., (2020) as a result from uncertainty as well as trying to make sense of what is coming. Anticipatory grief is the experience of grief symptomatology prior to loss (Patinadan et al., 2020). Anticipatory grief has reached acceptance as a valid clinical phenomenon and this concept is commonly referred to in the literature (Aldrich, 1974; Knott & Wild, 1986; Lebow, 1976; Rando, 1984). However, conventional grief draws more attention.
Initially, the outlook from the pandemic was very bleak for residents in long-term care with a substantial number of deaths occurring in nursing homes. Individuals felt the loss of a loved one, irrespective of the reason for loss, whether due to death or separation. Dual agent (patient and family) anticipatory grief ensued in many cases. It is difficult for health care professionals to identify anticipatory grief. There is no standardised measure and no specific tool to differentiate between normal and pathological anticipatory grieving processes (Shore et al., 2016). This makes it difficult for health professionals to support residents and families to process their discomfort and feelings.
A close friend described the visitor restrictions as ‘not human’ as she tried to understand why she could not see her husband who was admitted to long-term care, secondary to advanced stages of dementia. People need people and the restrictions imposed had a deep and profound impact which became more evident when she saw her husband. An intermittent admission to the acute hospital allowed her the opportunity to be with and hold her husband, a face mask was all that separated them now. She was not behind perspex screen and luckily, she was able to touch him, hold his hand and laugh together and intermittently it seemed like they were never apart. The chance to reunite erupted feelings of loss and joy. On the journey home that evening she explained to me, how she had been mourning her husband since she was not able to visit him and she was torn with the right thing to do. She was conscious that this virus knows no boundaries, yet her parting words that night were that human contact is better than any medicine. She was sad and happy in the one moment and acknowledging that her feelings were real and healthy provided her with some ease. The growing tension of not been able to visit had evoked feelings of loss yet she had the support of her family to cope and strength to carry on. A moment of being with her husband gave her hope and allowed her to make sense of the situation despite knowing that things may never be normal again. This is typical of anticipatory grief as it morphs into shifting anxieties and apocalypses. In hindsight, her expression of emotions that evening allowed her the opportunity to acknowledge the changes encountered and recognise that there was further change or upheaval in the future beyond her control.
This transformation is difficult to come to terms with so families experiencing loss need to be kind to themselves and develop resilience yet be creative in how they can improvise to cope into the future. Taking time to reflect and address feelings of helplessness enables the opportunity to make sense of grief. Throughout the COVID-19 pandemic, families and long-term care residents and staff all have experienced an array of emotions, which will have a long-lasting impact due to the loss and/or separation from loved ones. The feelings of discomfort related to anticipatory grief dissipate and move to feelings of exhaustion (Kübler-Ross, & Kessler, 2005). As we witness the rollout of a vaccine programme across the globe some people can regain what was lost and others seek to find acceptance of loss.
The COVID-19 pandemic has brought a disproportionate threat to humanity, especially to the older vulnerable adults lives and well-being (Chee et al., 2020). The process of grief is experienced differently by everyone and the intensity of feelings are impacted by the visitor restrictions. The kindness shown by staff to families during this pandemic has been immense despite the constraints imposed. Grief is an overwhelming experience and will take time to pass, practising compassion to one’s self and others may aid physical and emotional well-being. Learning how to mitigate grief and engage in self-care is important for residents, families, carers and staff.
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Meet the author: Dr Irene Hartigan
Dr Irene Hartigan is a Lecturer at the Catherine McAuley School of Nursing and Midwifery, University College Cork. Over the last 5 years, Irene has been involved in several research projects on dementia and more recently, Irene and her colleague, Dr Nicola Cornally, lead a study on the Impact of COVID-19 visitor restrictions on family of people living in Nursing Homes during wave one of the pandemic. This study was known as ERiC (Engaging Remotely in Care) and the results of this study indicated that many nursing home visitors experienced low psychological and emotional well-being during this pandemic. This along with a personal reflection, encouraged Irene to write about grief. This overwhelming emotion can be paralysing, it was an opportunity to reflect and write about grief and consider how families of residents in nursing homes might be coping with loss. ‘Everyone’s experience and ways of coping are different, and I hope this blog, in some small way, can help ease the feelings of loss for those who have encountered grief.’.
Click on the link to access more information on ERiC (Engaging Remotely in Care): Link