Grief and loss in residential aged care

Moving into residential aged care can be one of life’s most difficult adjustments. Some older Australians decide to move into residential care because they find themselves needing more company and support. For others, the transition may become inevitable as their health deteriorates and care at home becomes unsustainable. It can be hard to face the loss of freedom and independence associated with placement in aged care. For many people, leaving the familiar home environment can lead to feelings of intense grief. When the person needing care is someone with dementia, decisions and losses can be even more complex.

When someone you care for moves into residential aged care

Feelings of guilt and relief

For a partner, parent, child or friend, the decision to place a loved one in residential aged care can be a time of mixed emotions. For example, when the decision comes after a health crisis, the transition can be a time of shock and confusion. When the move comes after a long period of caring at home, there may be feelings of sadness and frustration that they cannot continue to care for their loved one at home. At the same time, carers may experience a sense of relief from the stress and exhaustion of their caring responsibilities.

For many family carers there is a sense of guilt around the decision to move a loved one into aged care. They may feel they have ‘abandoned’ the person they care for, or feel a sense of shame that they have ‘failed their responsibilities’.  If other family members do not agree with the placement decision, this can fuel arguments and resentment that may add to feelings of guilt, and lead to disconnection from relationships that were previously a source of support.

If you have been providing at-home care for your loved one, remember that caring can be overwhelming. It is natural to feel a sense of relief when these responsibilities end. Be gentle with yourself if you are feeling guilty. It may help to think that you are now able to spend time with your loved one in their new setting without feeling stressed and exhausted by all the tasks their care involves, so you can enjoy your time together.

Feelings of disconnection and loneliness

Sometimes the demands of caring mean that carers become isolated from their own friendships, community groups and other social supports. This can leave them especially disconnected when their loved one moves into aged care. When full-time caring responsibilities end, it is common to feel lost, lonely and out of routine.

When a member of a couple moves into aged care, the partner who remains at home may be particularly at risk of social isolation. They may need extra support as they confront the loss of companionship and their sense of identity as a partner and carer.

The COVID-19 pandemic has made this sense of isolation particularly acute for families and their loved ones. Limits on visitations and distancing requirements can be devastating for families unable to be together and disconnected from their usual supports.

Feelings of powerlessness and anxiety

After being responsible for providing  care at home, it can be hard to hand over control to staff at an aged care facility. Many family members feel anxious that their loved one will not receive compassionate and high quality care. They may worry that they will find it hard to cope watching their relative experience the distress and lack of independence involved in the move.

It may help to get to know the staff so that you can work with them and continue to play a part in your loved one’s care. It can help with the sense of loss if you stay involved, and increase your confidence in the care team if you establish good lines of communication and trust.

Getting to know carers and the other residents at the facility can also help ease the transition for both yourself and the person you care for, so the new setting can begin to feel like home.

Anticipatory grief

Carers may grieve for the loss of their loved one who moves into aged care and feel a similar sense of mourning as if the person had died. They can grieve for the loss of a future they imagined that has now been changed by the move. They may grieve for the relationship as it was, for the person’s day-to-day companionship or, in the case of dementia, for the person’s former self. Talking to a family member, trusted friend or counsellor can be an important support in coping with this grief.

Conversations about the end of life

For many carers, having conversations about death and dying with their loved one and the staff who care for them can be an important means of preparing for the end of life. While these conversations can be difficult, many carers appreciate the opportunity to talk openly about their loved one’s preferences, and to learn about ways they can be involved in their end of life care.

Loss and grief among aged care residents

There are many losses that may be experienced during the move into aged care. Individuals can experience loss of

  • independence
  • freedom
  • social connections with family members, friends and neighbours
  • valued routines, and
  • the comforts and familiarity of home.

The first few weeks after moving into aged care can be a difficult period. New residents may feel anxious, uncertain and lonely in their new environment as they become familiar with new routines.  If they continue to experience sadness and helplessness, it may help to raise these feelings with a member of their care team.

Bereavement in aged care

Residents of aged care facilities may find their grief after the death of someone close to them is particularly strong. It can cause them to reflect on their own life and sense of meaning, and can make feelings of loneliness and vulnerability feel all the more intense. Older people experiencing grief may notice changes to their sleep and eating patterns. They may also experience symptoms such as headaches, nausea, fatigue or a flare-up of existing health conditions.

The impact of COVID-19 can make it harder to include aged care residents in funerals or memorial rituals for people who have died. This may leave them feeling isolated in their grief. If available, technology that enables residents to attend funerals remotely can provide comfort and connection.

When a loved one dies in residential aged care

When someone we care about dies in a residential aged care facility, we may experience complex emotions. There may be intense feelings of grief and sadness mixed with a sense of relief that the person is no longer suffering, or that the burden of care is now over. For some, the death of their loved one may bring back feelings of guilt related to their placement in residential care.

Some carers appreciate the opportunity to be with their loved one at the end of their life, and to be involved in care tasks that provide comfort and support. However, not all will want to, and it may not be possible to be with a dying resident at the time of their death.

Some facilities can support families to hold a ‘room blessing’ after the resident has died and to spend time packing up their things. Some family members appreciate the opportunity to visit the facility to say goodbye to valued caring staff and other residents. They may also wish to maintain their connection to the facility after the death of their loved one by visiting, volunteering or joining a support group for bereaved family members. Where COVID-19 limits visiting options, letters, emails or video calls can also provide comfort.

Grief among staff in residential aged care

For staff who work in aged care settings, forming warm relationships with residents can be a meaningful and fulfilling part of their work. When a resident dies, staff may feel a deep sense of loss, and grief can accumulate as they experience the deaths of  many residents over time.

Aged care staff can find the experience of grief after a resident’s death more intense if:

  • they were particularly close to the person
  • they have limited confidence in caring for people at the end of life, or in talking about death
  • they are facing other stressors, such as heavy workload demands or conflicts and pressures at home.

The impact of COVID-19 can also add to the grief experienced by aged care staff, putting them under increased pressure to provide end of life care when family and volunteer visits are limited.

If may be helpful for aged care staff to

  • acknowledge feelings of grief
  • talk to a supervisor or colleague
  • engage in self-care strategies including relaxation, spending time with friends and family, and maintaining a healthy diet and lifestyle, or
  • seek the support of a professional counsellor.

Aged care staff can support their colleagues after a resident dies by making time for them to talk about their feelings following the death, listening in a non-judgemental way or supporting them to attend the resident’s funeral if they wish to do so.

It can be useful to provide time and a private space for staff to debrief after a resident’s death, to honour the loss, and to share information about the end of life caring experience.

 

References

Tieman J, Chakraborty A, Vandersman P, Hammond S (2021). Supporting the grief, loss and bereavement needs of families of older people living in residential aged care: a systematic review. Flinders University, Adelaide, South Australia

Vandersman, Chakraborty A, Rowley G, Tieman J (2021). Exploring the perspectives of family and professional caregivers in relation to grief, loss, and bereavement support and information needs in South Australian residential aged care setting: A qualitative study. Flinders University, Adelaide, South Australia

 

Page last updated: 23 March, 2021