Understanding Caregiver Grief: Anticipatory and Post-Caregiving Grief - Q&A with Zelda Freitas

Where do caregivers turn after their loved one passes on? What support is there when the caregiving team disbands? These are the difficult questions caregivers face at the start of the bereavement process.

To address these overlooked issues, Zelda Freitas, a social worker from Caregiver Grief Connexion and member of the McGill Council on Palliative Care, aims to use her years of work in palliative care, caregiving, and grief to educate.

Together, with research-practitioner and associate professor at the McGill School of Social Work, Professor Pam Orzeck, the Caregiver Grief Connexion will provide insights into the issues of caregiver grief and available resources at Palliative Care McGill’s upcoming National Palliative Care Week.

Left to right: Pam Orzeck, Zelda Freitas

Lexa Frail (LF): Can you tell us a bit about your talk?

Zelda Freitas (ZF): The goal is to explore caregiver grief in a way that focuses on the impact of caregiving on thegrieving process. Caregiving doesn’t occur in isolation; it often goes unseen or overlooked, and we want to bring attention to the fact that it’s happening.

Most people that live with illness, even advanced illness, are either living at home or in a residential setting. Most of the time, there are family members, partners or friends that take on the role of caregiving, and this discussion is centered on caregiver grief and the critical need to provide support to caregivers.

LF: What distinguishes caregiver grief from other forms of grief?

ZF: That is a very good question and one for which we don’t have a lot of research to draw from for answers. We’re working in an area that’s less explored, so we’re looking at the research we do have available.

What we do know is that grief is different for caregivers compared to other family members, partners or significant others experiencing or have experienced the death of that person.

We know that caregivers continue to be impacted by their caregiving. This means there are certain factors that may increase caregivers’ vulnerability during their bereavement.

The impact of the caregiving journey alone has many different factors that come into play. It could also be impacted by their relationship to the bereaved or the timing of the caregiving in their lives. Then, there’s the place that caregiving held: was it an added burden to an already very stressful life? Were they better prepared? Were they prepared at all for caregiving andtheir commitment? All these factors influence the caregiver’s sense of self and their relationships with others, further impacting their grief and then their bereavement.

We can also talk about caregivers transitioning out of caring into a role of no longer being a caregiver, which can impact several factors, including one’s identity.

If someone strongly identified with being a caregiver, that can shape how they grieve. They might also feel exhausted or alone, because caregiving often takes up so much time and energy that other parts of life—like social activities or other roles—get put on hold.

As a result, they may end up feeling more isolated in their grief, just when having support is most important.

LF: Sounds like there’s a lot to explore there. What do you want your audience to take away from your lecture?ZF: Above all, supporting caregivers during their active caregiving can have a crucial impact on their grief process afterwards.

We must ask: what are some of the things that we could do to better support caregivers while they’re caregiving? What are some of the risk factors that could be present, and how could we help mitigate them?

We’re not talking about extraordinary measures. We’re essentially talkingabout helping caregivers find their place and be in the community,with the rest of the care team validating their role and their experience. It’s about helping them prepare for that transition as welland identifying what might be helpful to them after they’re no longerproviding care.

Also, it’s about knowing what existing resources could be helpful to them afterwards, given the fact that when they are caring for someone, there’s usually a team around them. Then, when that person that they’re caring for dies, that team also disappears. This can leave them feeling disconnected. We want to make sure we can bridge them to resources and recognizing themselves as individuals after caregiving.

LF: Is there anything else you want to add that I haven’t mentioned?

ZF: We are getting better at recognizing caregivers and the contribution that they make not only to the lives of the person they’re caring for, but to society.

80% of care that’s provided in the community is provided by caregivers. Caregivers are the backbone of our health and social care system, so making sure that their role is recognized, acknowledged, and that they have access to the support they need.

Luckily, various organizations advocate for and promote support for caregivers, such as the Canadian Centre for Caregiving Excellence and Proche Aidance Quebec.

Society is making progress, but caregiver grief still needs to be more fully acknowledged as an important part of the overall caregiving journey. People are caring for others every single day and that’s been largely invisible. I believe we need to emphasize and fully recognize that this is happening.

Keywords:

palliative care