“Post-caregiving” or understanding what happens after caregiving

The research interests of Isabelle Van Pevenage are related to post-caregiving and revolve around - among other subjects - caregiving, grief and the relationship with death, and palliative and end-of-life care.

What is post-caregiving? Is it an official term?

“Post-caregiving” is not an official term, nor is it generally recognized by caregivers or workers. In a very factual way, it is the period that follows a shorter or longer period of caregiving. I emphasize this notion of length, because this can greatly influence the post-caregiving experience. Caregivers’ daily role may take up all of their time and they may not look far ahead into the future. Some do, but it’s quite rare. And very often, they know what will happen, but thinking about post-caregiving, about “after,” after the death, after the move into long-term care is difficult, we don’t want to prepare ourselves for that. To some extent, it’s an end – the end of the relationship with the care receiver. The popular expression in a caregiving situation might be “we’ll shovel when it snows.” And, at the end of the day, this may prove to be a very good defence mechanism.

For the support workers, there is always the problem of a lack of resources, but beyond that, post-caregiving is beyond the scope of their work. When the care receiver dies, their file is closed. Unless the caregiver themselves has needs, they are no longer part of the process, unfortunately.

What are the physical and emotional consequences for the caregiver?

The consequences are closely linked to the length of the caregiving period, as I mentioned earlier. If this stage is relatively short, the caregiver will experience their grief. In the case of post-caregiving, the consequences can show up much later, but the grief is added to the post-caregiving, with all the sadness it implies. Physically, the defences may collapse, the person may finally allow themselves to feel extremely fatigued, depressed... The person may also experience some relief about the idea that the situation is over.  And that’s where guilt can arise, for feeling relief when the care receiver is gone.

What resources are available to get through this period?

There is little psychosocial support available in the health network, especially if caregivers are not identified as such. So, we can turn to the community sector and seek out social activities that will counter isolation, such as community kitchens for example. These resources are not directly related, but they may be quite useful. The other problem is accessibility to information: if we don’t know that the problem exists, we’re not going to try to resolve it.

Can post-caregiving be an opportunity for the person to “take stock” of their experience, to bring out the positive elements?

Yes, and the best example can be seen in palliative care homes, where the volunteers are often former caregivers. They may have received good support and want to give back in some way for what they received. Depending on their experience, they might have developed skills that allow them to bounce back, even to return to the labour market for example. And they may also feel pleasure in having given their time, being able to convey their knowledge and take some pride in this.

What means are available to the caregiver to prepare for this stage ahead of time?

The best thing to do would be to not isolate themselves, to try not to exhaust themselves and to surround themselves with people and find support. Very important as well: do not stop investing in other “identities”: continue to be a grandparent, a spouse, a friend ... in short, don’t let caregiving be the only thing they do.

Are you going through a post-caregiving period? The Caregiver Support is still available for you for informing you about the resources available to support you. Do not hesitate to contact our counsellors at1 855 852-7784 or by email, at info-aidant@lappui.org.