Changes to caring roles regarding Long Covid

Here we outline how Long Covid has caused changes to caring roles, as families have had to adapt to the changing care needs of family members. This section will explore:

  • Support and proximity of family members
  • Other caring responsibilities
  • Support from parents and emotional impact

Support and proximity of family members

Many families have turned to wider family members to help share caring responsibilities for people with Long Covid. Grandparents, siblings, in-laws and friends have all been called upon to help ease the pressure of providing full-time care for a family member with Long Covid. However, the levels of support available have differed depending on family circumstances. Living close to family members has been a big factor in accessing wider support. Vonnie explained that her family ‘are all carers now’.

Vonnie’s family all pitched in to care for her. Her middle daughter had to ‘step up into the motherly role’, and her grandson learned to cook.

Parents Lily and Catherine both said that they received support from family members to help with increased care needs. When Lily was struggling with her Long Covid symptoms, her mother and mother-law both helped with childcare. Their help, alongside the help of her husband, allowed Lily time to rest. Catherine’s eldest son helped care for his brother through the summer so she could work. He chose to help instead of getting a summer internship.

Lily’s mother and mother-law helped provide childcare for her daughter.

Catherine’s eldest son helped care for her younger son so she could work during the summer.

Hina stressed the importance of helping her sister, who had Long Covid, when she is experiencing heart problems. Mehjabin and her sisters learned to help their dad to care for their mum, who has Long Covid. She says, “we’ve grown a better attitude to how to care for each other.”

After her mother was diagnosed with Long Covid, Mehjabin and her sisters shared the household chores with their father.

Not everyone was lucky enough to have family close by and available to help. Parents Lindsey and Beth lived too far from their families to be able to get regular support and had to manage without these networks.

Lindsey and her partner are unable to receive family support because of where they live.

To hear more about daily family life, see ‘Daily Family Life and Long Covid’.

Other caring responsibilities

Many of the adults we spoke to reported having pre-existing caring responsibilities for elderly or sick relatives. This led to struggles to continue caring for these relatives while having Long Covid themselves, or while they were also caring for their child with Long Covid.

Zubair, Shakila and Lucy B have Long Covid themselves and also provide support and care for their parents. Despite having Long Covid, Zubair reported that “there are things, shopping, you know and whatnot, appointments” that he helps his parents with because they are elderly. Lucy B who has Long Covid symptoms has had to arrange assisted living for her sick father. She has had to return to her mother’s home to be cared for during her own illness.

Lucy B had to arrange assisted living for her father while ill with Long Covid symptoms.

Managing these pre-existing caring responsibilities has been an added struggle for many, especially when outside support has been unavailable. Emma A’s parents are unable to help her care for her child with Long Covid, due to them living over an hour away and her father having cancer.

Emma A has to juggle helping her parents, caring for her child with Long Covid, and work.

The added demand of these caring responsibilities was also a source of concern for Lindsey, whose wife has Long Covid. She worried that her wife’s focus on caring for her mother meant she forgets to look after herself. They found this to be an especially difficult situation as their child also has Long Covid.

Lindsey worries her wife forgets to look after herself when she focuses on caring for sick mother.

Support from parents and emotional impact

For many young people and children with Long Covid symptoms, support and care from parents has been essential. They are increasingly reliant on help with completing tasks they would have otherwise done independently. For some young people in their 20s and early 30s, like Lucy and Callum, their illness has resulted in them having to return home to have their parents help care for them. This has caused feelings of sadness and uncertainty over altered life plans and loss of independence.

Callum had to move back home with his parents so they could care for him.

Xanthe had planned to move out of her parents’ house after getting a great job and saving money over the years but is no longer able to care for herself due to her symptoms. She is now 100% reliant on her family for care and is disappointed not to be able to experience the independence she had been looking forward to.

Xanthe is no longer able to move out of her parents’ house as she now relies on their care.

Lucy B recalled that although she wanted to “keep the flat and wanted to keep my independence” her symptoms meant that she was unable to leave home, shop and cook for herself. Her family were concerned she would get stuck in the flat, which is up three flights of stairs. Upon returning home her mother cared for her.

Lucy B had to move out of her shared flat when her symptoms made it difficult to remain living there.

These changes in circumstance have been emotionally distressing for both young people and their parents. Felix found returning home to live with his parents and being unable to complete his degree extremely upsetting, because he was no longer able to study. He recognised his parents likely found it equally stressful as they “want to see me succeed” and he’s no longer able to continue his education.

Felix found it difficult returning home because he was no longer able to study his passion.

20-year-old Hannah and 14-year old Daisy also recognised the emotional impact that caring for them had on their parents. Hannah found that her mum had become “super anxious” about her Long Covid symptoms. Daisy felt her parents’ mental health had been affected by having to witness how much pain she was in.

Hannah’s mum has become “super anxious” about her Long Covid symptoms.

For more material on similar topics, see ‘Impact on Relationships’ and ‘Emotional and psychological impact of Long Covid on the family’.