It’s OK not to be perfectly OK.

What does this topic mean to you?

We’re human. It’s part of life to have emotions that aren’t always positive. Caregivers do not always give themselves permission to experience emotions of this nature. It’s important to address this topic, which corresponds to the reality of caregivers, because they tend to take the back seat.

The people cared for are sick, their condition can deteriorate; caregivers are therefore less aware of their own needs and limits, and therefore withdraw. Caregivers can also go too far and not recognize the signs of burnout. Yes, “not being OK” is a common situation for people who call Caregiver Support.

What conversations does that remind you of?

Sometimes, caregivers tell us bluntly: “I’m at the end of my rope, I’m no longer capable, I would like my loved one to leave.” It happens… These are pretty strong words. There are also people who need more time to come to terms with their feelings. Many have never given themselves the permission or the freedom to take their place and experience some emotions.

You need to help them open the door allowing themselves not being OK. Caregiver Support advisors help them identify things that are uplifting and heartwarming. But sometimes people need their own space to be vulnerable. That, I think, is very valuable.

“Not being OK” can mean “being unwell,” but also “to disagree.” Can you tell us about this range of emotions?

We don’t tell people, “You have the right to be vulnerable.” Not like this. It’s more in the way we communicate with caregivers: we’re open to receiving their emotions, whether it is sadness, distress or anger. People refrain from sharing these emotions with their loved ones, because they don’t want to make the situation worse. They don’t think they have that right because they have to devote all of their energy to their loved one.

Not being OK can manifest in many ways: anger, sadness, guilt, shame, distress. There are many ways of not being OK. I think all the emotions that fall into the category we call negative emotions have their place and need to be experienced. For example, anger is one element that can be essential to grieving.

In our topic of discussion, there are these two words: “not perfectly.” What are your thoughts on them?

It’s human. We’re nuanced beings, never completely black, never entirely white. It’s the same with emotions. For example, the anger that one may feel is often accompanied by other emotions. There are many spheres that influence our life. We can be feeling very good in our family sphere, while in our professional sphere, things are not going well at all!

It’s always a matter of nuance, and the same goes for caregivers who often have multiple roles: spouse, parent, friend, worker. Caregiving is a complex network.

Not being perfectly OK … if you apply that to the end of the year, the holidays and the coming of the new year where, maybe, some tough decisions must be made…

This is a special period during which several themes emerge more in the phone calls made to Caregiver Support. For example, for caregivers who have lost a loved one during the year, it will be more difficult around the holiday season. During this period, there are fewer services: access to certain resources is reduced and there are changes to the routine, which can cause stress.

I also believe that, seeing the new year approaching, people are worried. What will happen if the health of my loved one deteriorates further? In cases where the person being cared for has a degenerative disease, apprehension is common. But this is a way of experiencing stress twice rather than once: before and during.

As clinical coordinator, how do you receive this?

Caregivers often contact Caregiver Support to talk about a situation in which they feel powerless. You always must see with the caregiver how far you can get them to step back from the situation and consider solutions with them that they have not thought of, so that they regain some control. As a clinical coordinator, I offer support to advisors and I do the same with them. They also need to take a step back and “debrief.” How can the advisor distance himself or herself from this phone call? How, if necessary, can the process be changed to prevent it from affecting them personally the next time? How not to stay with that and develop a more appropriate intervention strategy for the next time?

Would you like to add something?

“It’s OK not being perfectly OK” is a topic that needs to be addressed regularly. It is useful for caregivers and advisors. It’s a relevant and thought-provoking topic.

I would invite caregivers who read this article to question themselves. Do they acknowledge their emotions? Do they prevent themselves from experiencing certain emotions? Doing so can have negative repercussions: stress, guilt, shame. I would invite them to carry this with them at the end of the year. They can call Caregiver Support, get help, but also acknowledge their limitations themselves. Do I respect myself in the things I do for my loved one? Am I doing too much? Am I going too far? Have my needs changed since becoming a caregiver?

This is also the time to make sure you’re doing things for yourself. Taking care of yourself doesn’t always mean going to the spa. It can just be doing something that feels good, that brings you happiness and encourage well-being, like drinking hot chocolate on your balcony.

Interview by Karine Cloutier, communications project manager at l’Appui. Thank you, Charlotte, for this wonderful moment of sharing!

Charlotte Beaudet has been clinical coordinator for Caregiver Support since November 2021. Prior to this position, she worked as a caregiver and clinical advisor.