COVID experiences

Module 4: COVID experiences

Overview: This section is intended to provide you with an opportunity to read the experiences of family carers during the Covid-19 pandemic.

What was the COVID-19 pandemic like for carers?

  • The pandemic was a very difficult and challenging time, especially for family carers.
  • Your experiences of the pandemic may have been negative for many different reasons.
  • The wellbeing of family carers was badly affected by the restrictions imposed during lockdown.
  • You may have felt isolated, alone, frustrated, and experienced things like grief, loss and fear about the impact of COVID-19 on you and your family.
  • It’s important to know that lots of others carers felt the same way during the pandemic. As one carer described:

“I think I would say for the first months throughout the first lockdown I must have went through every stress and emotion. I’m a pretty calm person normally but I was really quite stressed because I have total sense of responsibility for two young people.”

  • For family carers, caring during lockdown was more intensive because of the lack of services over this period of time.
  • For many carers, there was extra stress, due to services withdrawing their face to face support:

“So [my son] had just started in nursery before the pandemic kicked in and then that was all took away from us over night. He lost all of his routines and it was just really hard and difficult for him because he didn’t understand why he had to stay at home all the time. It impacted the whole family.”

  • Family carers may have felt lots of different emotions over the COVID-19 pandemic, including, shock, frustration and anger, as one carer describes:

“I have been fighting for 40 years, that’s the reality if you are a family carer of someone with long-term serious health problems. My son requires different but 24/7 care and you have always had to fight but Covid has absolutely magnified the gaps that were already there. I make no apologies in saying that family carers became collateral damage in the services responses. We were thrown under the bus, those of us that have been doing the 24/7 care and surviving on limited respite, the rug was pulled from below us and you were left with nothing.”

  • For some carers they were not able to see their loved one, who may have been in residential or respite care. One carer describes her experience:

“it was incredibly difficult not to be able to visit [daughter]. It was just heart-breaking. [Daughter], she is non-verbal and she very rarely makes eye contact with people. She doesn’t like people in her personal space, she is generally very content but she would be very defensive. With us, particularly with me and her brothers, you would get lovely eye contact, you would get smiles and you would get reaching out to you. Although her staff are wonderful and they just love her to bits she just doesn’t have that connection with them.”

What were some of the positives of the COVID-19 pandemic for carers?

  • While the COVID-19 pandemic was undoubtedly challenging, it was also a time of learning and development of new ways to support carers and families.
  • Many family-focused organisations continued to support family carers during the pandemic, perhaps virtually or over the phone.
  • Some carers enjoyed some aspects of the lockdown, including the reduced home visits from health care professionals and reduced appointments:

“One of the best things that happened to me was bizarrely despite what I said earlier was to stop all of the visits. You have to open up your home to everybody and it becomes a meeting place, it becomes a place where people expect that they can come to you about your son, social workers, there is constant reviews and everything.  A lot of that fell by the wayside which made me think well, are they actually necessary in the first place?”

“It had a bonus that because hospital appointments stopped and they were all done by phone we then weren’t running to the hospital with all of his different appointments every week so we actually had to time to sit down and enjoy these sessions via Zoom. Whereas before we missed out on an awful lot because we were having to run to appointments and times just didn’t always suit.”

  • Additionally, some carers enjoyed the protected family time that lockdown provided. As this mother describes:

“One positive that came out of it for me personally was that I got to spend time with my two youngest children that I would never have got otherwise. My daughter was doing her GCSEs and for a lot of teenagers at that time they locked themselves away for studying but she was downstairs and was around more and so we were able to get some sort of shared interests. Her relationship with her brother built up as well and it’s continuing to because they had some shared interests that they were able to build on to strengthen their relationships. Like I said my 13 year old, well they were 11/12 at the time, and so that was a time again when they were starting to spend more time in their bedroom before Covid and then all of a sudden they were almost forced to be around the family more. So, because we were in that situation we tried to make the best of it and tried to do as much as we could together. So, for me my relationship with them has grown massively and we have developed a bond that I don’t think we would have got if it hadn’t been for that situation.”

Where are we now with Covid-19?

  • COVID-19 measures in the UK and Ireland are now less restrictive, and we can now see people face to face.
  • The majority of adults and young people are now also vaccinated so the threat posed by COVID-19 has dramatically decreased.
  • However, we understand that the virus remains in circulation, and this may make you feel uncertain about the future threat this poses.
  • Many people will be living with the long-term complications of a Covid-19 infection, ‘long Covid’.
  • It is important to recognise that many family carers may have ‘long Covid’ and that this may impact upon their ability to carry out their caregiving tasks in the same way as before.
  • Many more people may be dealing with the long-term impact of living through the pandemic. This might include enduring mental health difficulties, financial worries and uncertainties about the future.
  • Without the efforts of family carers, health and social care systems would have been unable to operate throughout the COVID-19 pandemic.
  • Even as all restrictions have now been lifted, social care and health services may not have returned to pre-pandemic levels, which will be frustrating for carers:

“Now [post-lockdown] it is even worse that everywhere is going to open up and everybody is now; all my friends are talking about booking their holidays, out for coffee and out for meals. Here is all of us carers sitting here tonight and 6 months later we will probably still be sitting here, that’s the hardest part.”

  • Some carers understandably still feel worried that services will not be the same as they used to be pre COVID-19, and they will not get the support they feel they need. As one parent described:

“I would like to get respite but my concern moving forward is the Covid thing obviously which is going to be used as an excuse now for not providing services, that’s the issue.”

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