Long COVID is not only hard on those suffering from it directly – it’s also a challenge for relatives. They also need to adapt to the new situation. Particularly at the beginning, there is lot of uncertainty “because you simply don’t know that to expect,” says Ineke Irniger, who heads a support group for relatives offered by FRAGILE Suisse. The organization supports people with brain injuries and their relatives, so it already has many years of experience in the area of self-help – which can also be beneficial for Long COVID.
The FOPH has launched a three-year support program to address the matter of family caregivers, including evaluating the needs of these relatives. According to the synthesis report (French, German and Italian available; see pp. 47–49), there is a progression of separate stages, although not all these stages always occur:
The six phases of caring for loved ones. Source: Figure prepared by Altea based on Figure 8: The six phases of assistance by Kaspar et al. 2019, according to Doherty and McCubbin (B04) published in the “Summary report Promotion program ‘Offers aimed at relieving caregivers’”, page 49.
Relatives are often (too) hesitant to seek help. This also explains why the need for support in the case of many relatives of people with Long COVID has only now surfaced – more than two years after the outbreak of the pandemic. At first, a person tries to tough it out, push aside their own needs and simply get on with things. At a certain point, however, the burden becomes too much, and they admit that they need help.
“It’s a give and take”
Self-help can play an important role here. According to the “Promotion of self-management for family caregivers” (French) reports, it provides “psychosocial relief, useful everyday tips and an environment where people feel heard, without having to explain themselves.”
Michelle Guggenbühl from the Selbsthilfe Zürich foundation describes the primary goals of community-based support: “It’s about supporting each other and showing solidarity. By joining a support group, a person is taking responsibility for themselves and their own well-being – and for the group as a whole. It’s a give and take. In many cases, it only takes a few words to share one’s story and to be understood.” Another main objective is to improve people’s skills in managing their own health, such as by helping them become better at navigating the large variety of support resources.
“By joining a support group, a person is taking responsibility for their own well-being – and for the group as a whole.”
Similar experiences create a bond
Relatives “primarily have the need to talk to someone about the situation,” explains Ineke Irniger from FRAGILE Suisse. She, too, became one of these relatives after her husband suffered a brain injury. Among a person’s family and friends, talking is often difficult, and they may downplay their problems or feel little empathy from others. Talking in a safe setting with others who are in similar situations and faced with similar challenges is often easier. “You can simply blow off some steam,” Irniger explains.
This is why it makes sense to focus on specific topics when talking with other relatives, which is one reason why support groups for relatives and for affected people are frequently organized separately. “When the affected people are in the same room, it is not possible to speak as openly and without inhibitions,” explains Irniger.
She adds: “Moaning and complaining is easy. And that’s important too. But taking the step to actually make a change is extremely difficult for many people.” She believes what makes this so tough is that relatives basically accept the situation, withdraw, and do not have the energy to consider possible changes.
“The step of actually changing something is extremely difficult for many people.”
Support group for relatives of people affected by Long COVID
The FOPH reports that there are around 2,500 support groups with around 43,000 participants in Switzerland: 344 groups are for affected people and their relatives, 518 groups are exclusively for relatives. A self-help group specifically for relatives of people affected by Long COVID does not currently exist. “But one is in the works,” says Guggenbühl from the Selbsthilfe Zürich foundation. People start support groups when affected people or relatives express a need for them – as was the case here after one affected person’s relative requested that such a group be started.
Together with the organizer of the group, they defined the mission and created a flyer (German). There is currently a waiting list. Once enough interested people have signed up, Selbsthilfe Zürich will help the group get started. A group normally has between eight and twelve participants.
Many support groups continue to meet in person. In the case of the Long COVID support group for relatives, the plan is to organize a virtual group. “Because this is currently the only support group for relatives of people with Long COVID, we want to ensure that people all across Switzerland have access to it,” explains Guggenbühl. After a guided start phase, the group will then be self-organized. The participants will be in charge of picking the focus topics and planning the meetings.
“It’s important that you still have your own life and don’t always plan everything around the affected person.”
“Take care of yourself”
Ineke Irniger says that one thing is particularly important when dealing with being a caregiver: “It’s important that you still have your own life and don’t always plan everything around the affected person.” This includes seeking out activities that have a positive impact on you. It is also the only way to recharge your batteries in order to manage your caregiving duties.
Michelle Guggenbühl also recommends “simply giving a support group a try sometime.” Many relatives might not even be thinking about this as an option. Talking with other people in similar situations is a good way to complement other offerings like one-on-one support or therapy.
External support resources
“Support groups can complement people’s own support networks and provide new perspectives,” explains Guggenbühl. She is consistently impressed when she sees people meet for the first time in the group. “The sense of relief is palpable when people in similar situations get to know each other, and people often become emotional,” she says.
But it is equally important to notice when you are no longer able to manage on your own. Because when someone takes on too much on their own, the quality of the care they provide, as well as their relationship to the affected person, may suffer. In these cases, there are various outside resources that provide support and relief, help adapt to the new daily reality of affected persons and their relatives and make this transition as smooth as possible for everyone involved. These resources are organized on a cantonal level and, as the Canton of Aargau writes, range “from a transport service through to individual advice services, daytime care facilities or financial support services.” The infobox below contains more information and starting points.
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