Long Covid sucks – we make no bones about it. It is a chronic illness that changes the lives not just of patients, but also for whānau and friends supporting them.

Family members are often thrust into the position of becoming a primary carer and health advocate for their loved one with Kowheori Roa | Long Covid, on top of other roles such as partner/parent/child/worker/student. It can be immensely stressful – especially if the family member with Long Covid was the main income earner and is no longer able to work at all.

With more than 200 symptoms, Long Covid can be a minefield to navigate. After a while, you’ll become semi-fluent in medical jargon and will be on a first-name basis with many medical specialists whose roles you may never have heard of: immunologists, neurologists, respiratory specialists, cardiologists, endocrinologists and psychiatrists.

So, what helps? | He aha ngā āwhina?

Become social

While it may feel like it at times, none of us are alone in this. Long Covid affects millions of people around the world – and for every person with Long Covid, there are whānau and friends supporting them.

Remember, Long Covid is a completely new condition that did not exist before 2020. Unfortunately, despite the research underway, there isn’t yet a magic solution. Internationally, the Long Covid community is on a journey together to find a solution.

There are Long Covid forum, groups and channels across the world and on all social media platforms. These sites all offer helpful advice, including new techniques, medications and supplements. Jump online, watch YouTube videos, read about other people’s experiences and explore as a family what might suit your situation.

Communicate… and be honest with each other

It’s so important to be honest with each other. Kowheori Roa | Long Covid takes a huge emotional toll on individuals and families, and keeping the lines of communication open will help you navigate the turmoil. Discuss the effects it has had on your family, both positive (yes, generally there are a few positives) and negative. There will be days where everyone feels frustrated and in despair about the situation – these are the days where having open lines of communications will particularly āwhina | help.

Although the family member with Long Covid may not be able to participate in the daily functioning of the house, they are still a core member of your household. It’s essential that they are consulted and kept in the loop, for your sanity and theirs.

Become their health advocate and case manager

Long Covid is a multidisciplinary condition; this means it involves a lot of health practitioners. At this stage in New Zealand, there is no single Long Covid clinic or case manager to coordinate care for Long Covid patients. So it’s up to the patients (and whānau and friends supporting them) to take on this role. This can be really daunting when someone is unwell, so supporting your family member in this process is really valuable.

You may even find you need to be in charge of seeking out the support your family member needs.

Start with your GP, request referrals to specialists (in some cases, you may be able to just book in/self-refer), and follow up – it may mean multiple phone calls or emails to ensure your needs are prioritised and actioned.

Becoming their advocate also means dealing with insurance companies and/or WINZ on their behalf. There is support available, but you will need to seek it out.

Get organised, create a care routine

Long Covid has no respect for the patient’s desire for routine. Insomnia, extreme fatigue, muscle weakness, breathlessness and more can all make the effort of just going to the loo seem like a marathon.

If you’re the primary carer, it helps to create a nursing/care routine, and have the other family members take over decision-making on the household’s day-to-day functioning. This might mean family members, both inside and outside the immediate household, take on different roles to what they’re used to.

The ‘running the household’ role may include:

  • childcare duties
  • shopping (online shopping is a great ally!)
  • cooking (keep it simple)
  • cleaning
  • paying the bills.

The nursing role may include:

  • Providing medication/supplements at set times in the day (eg. 8am, noon, 6pm, 10pm). You may need to gently wake up the person with Kowheori Roa | Long Covid to make sure they get their meds.
  • Providing ice packs or heat packs throughout the day, if they find keeping cool/warm helps them.
  • Helping them to bathe – give them bed-baths as necessary (dry shampoo is great).
  • Helping them with physiotherapy – even in-bed physio can help.
  • Massaging sore muscles.
  • Catering for different nutritional needs (eg. low-histamine diet, electrolytes) and bringing meals to them in bed.
  • Coordinating doctor and specialist appointments
  • Driving them to and from appointments
  • Sourcing medical equipment to āwhina | help them, eg. shower chairs, walking sticks, wheelchair, nebuliser, CPAP machine, etc.
  • Keeping a diary to record outings, emotions, bathing, achievements, different medications, and any notable reactions/relapses.

Seek āwhina | help where you can. Don’t wait for family or friends to offer support – tell them what you need them to do. This could include picking up the kids from school/sport, bringing over some dinner, taking the dog for a walk and mowing the lawns.

Manage expectations

If you can master this, you’ll find your world is a lot easier to navigate.

We’re talking about:

  • your own expectations of what you can achieve as a partner/carer/parent/worker
  • the expectations of what the family member with Long Covid can achieve on any given day (which can change from hour to hour)
  • the expectations of others.

Be flexible with your planning, and be open and honest with everyone around you. A dinner invitation may seem innocent and generous to others, but for a person with Long Covid (and those caring for them), this can be an incredibly stressful prospect. Can they manage to get out of bed? Will they be able to shower, get dressed and still have energy to get to the car, let alone sit at a dinner table and converse with others? Does interacting with others expose them to infection? Will they crash for days afterward? Will this mean they can’t make an appointment later in the week? Is it worth it? These are the decisions that people with Long Covid (and their supporting whānau and friends) face on a daily and weekly basis.

Of course, sometimes it may be really hard to gauge what your loved one with Long Covid is capable of. It may help to create a code word so you can all get on the same page quickly when things are going south. For example, if my partner says “Kid gloves” when I give him his morning supplements, it means he’s feeling dreadful – he’s asking me to please tread carefully and not push him to do anything beyond sleep for the day. Later in the day or evening, he may feel up to watching television, but not at that point in time.

Acknowledge your feelings

Managing expectations can also help to manage emotions. Kowheori Roa | Long Covid is an emotional journey for everyone involved. Anger, guilt, frustration, sadness, depression – these emotions are not felt just by those who get Long Covid, but also by those who love that person. It’s okay to not be okay! Acknowledge these feelings and kōrero | talk them through with your loved one who has Long Covid. Be open and honest with others around you about your family’s situation and the emotional support you all need.

Take time out for yourself

Carer fatigue is a real thing. If you don’t take time out for yourself, it’s easy to start feeling resentful. Long Covid is the visitor that no one wanted, let alone to move in with you all. When you can, take time to do something that you really enjoy. It could be away from home (eg. walking, going to the beach, grabbing a coffee, shopping) or within your property (eg. gardening, watching a great TV series, baking). You may find even a short outing can refresh you. Long Covid is a long haul, and looking after yourself means you’ll be better able to look after the one you love.