The right to feel tired and have your own needs

With this post, I would like to relieve caregivers of the guilt of feeling tired, of no longer coping mentally and physically, of feeling irritated and frustrated—even toward the loved one they are caring for. It is worth knowing that just as we talk about professional burnout, there is also something called caregiver burnout. And no, there is nothing strange about the fact that long-term care for someone important to you is simply exhausting. I absolutely do not want to burden patients with guilt for needing care, but we must remember that usually the whole family is affected by illness, and it impacts each member to a greater or lesser extent. So instead of blaming ourselves for not being made of steel, it is worth remembering that everyone—even in the situation of a loved one’s illness—has needs, has the right to them, and must take care of regularly restoring their energy. Chronic illness is not like the flu—it does not end after a week or two. It is simply not humanly possible to remain in a constant state of high alert, fight, or flight without harming our physical and mental health.

The burden of daily responsibilities and guilt

A caregiver often takes on an increasing number of responsibilities—household tasks, logistics related to childcare, arranging transport for the patient to appointments, tests, or treatment, scheduling doctors, searching for treatment options, ensuring that the chosen path is the right one, going to the pharmacy, preparing medications. Patients usually try to be involved, but the reality is that, for example, the side effects of treatment can cause significant weakness, making it impossible to fulfill previous responsibilities despite their willingness. And again, there is nothing wrong with this. It is natural that in the face of a loved one’s illness, we want to do everything possible to help them get through this difficult time. But we must remember that this is also a difficult time for the caregiver, who often gives up their own interests, withdraws from social life, eats poorly, sleeps poorly, becomes irritable at work or even partially withdraws from it, and generally puts themselves last. Eventually, there comes a moment when they are simply exhausted, lacking strength and motivation, seeing the world in dark colors—and they too struggle to get out of bed… but they have to… because who will make breakfast for the children? Who will clean and do the shopping? Who will support the patient? What will others think if, instead of sitting with my suffering father, I go to yoga? If, instead of watching TV with my ill wife, I meet friends? Will my family see me as selfish and lacking empathy?

How others can help: an appeal to friends and relatives

And here is an appeal to those around them. If you know a family where someone is chronically ill, think about how you can support the caregiver. Maybe you live nearby and pass their children’s school on your way to work—you could give them a ride, even once a week. Maybe you enjoy cooking and could share meals with them. Or suggest going to the cinema together, remind the caregiver that their rest is essential.

Creating your own support network

I sometimes suggest that caregivers make a list of their daily responsibilities and a list of kind and supportive people around them. Then they can consider whom they could ask for help and in what way. This helps build a personal support network. Of course, each person has the right to refuse, and it is also our role to accept that with understanding. Perhaps they want to help, but in a different way. Do not resist the support of others.