Many caregivers are the information relay point between their loved one, the healthcare team, and the wider family. This can be challenging at any time, but COVID-19 lockdowns and travel restrictions have added another layer of complexity to this task.
We asked three people to share their wisdom: a Violet Guide, a doctor and a caregiver.
Our experts agree asking questions is key to understanding and transferring important information. Janet Foster, who cared for her ex-husband Ian during COVID-19, emphasises there’s no such thing as a silly question when communicating with doctors and nurses. “This is your journey, and they are there to support you,” she says, “so don't feel foolish for any question you want to ask.”
Rose Dillon, Violet’s Experience and Engagement Manager and experienced Guide, suggests preparing questions ahead of time. She recommends Palliative Care Australia’s Asking Questions resource, which groups questions by subject and forms a record you can circulate among family.
She also advises asking questions until you get answers. “You don't want to walk away from a situation carrying all that responsibility and not being clear. People don't mind – it's easier for them if you understand what's happening and can communicate that to others.”
Dr Renee Lim, a locum doctor in palliative care and geriatrics, recommends writing questions down, even if you think you’ll remember them. “What often happens when we're asking questions is we get loaded with anxieties. Have I asked the right question? Will I get the right answer? We get scared we’ll forget something, so that's a useful way to keep everything in mind.”
What to ask
Renee notes the most common question doctors get asked is how much time their loved one has left, which “is almost impossible to answer”. Instead, she suggests talking to the healthcare team – if you haven’t already – about the changes you might see as death approaches. Having an idea about what to expect can give you a greater sense of control.
Rather than querying whether your loved one is okay, she recommends asking specific questions. “This allows us to answer something we may not have realised was your main concern.”
Questions that elicit helpful information about your loved one’s condition include:
- Have they been able to talk to you? This can indicate how your loved one is doing mentally.
- How did they sleep overnight? Nurses are often the best people to ask this.
- Have they needed any extra medication?
- What is your priority for their care?
- Are they suffering?
Our experts also agree that technology can foster effective communication, especially when in-person visits aren’t possible. Rose says many families use things like FaceTime and WhatsApp groups to collect information, gather questions, and stay in touch.
Janet made video calls to distant family, “which was fantastic for helping them feel like part of things.”
Renee suggests dialling family members into bedside consultations, saying, “Most doctors would feel comfortable talking into a speakerphone.”
Furthermore, including others “takes the load off feeling like you have to remember everything”, Renee says.
She emphasises that you don't have to do all the information transfer yourself. “You could pass information on to one other person and get them to share it. Or create a time – maybe once a week – to catch up with family or friends for an update.”
Be kind to yourself and your family
Rose adds the additional weight of responsibility many caregivers currently face makes self-care even more important. This can be simple things, Rose says, “like at the end of the day thinking ‘what's one thing I'm really proud of today that I can celebrate in my own way’. Or thinking about what you've learned from difficult situations you’ve coped with in the past.”
“And be kind to other family members,” Rose adds. ‘When people misinterpret information or don’t completely understand what's happening, it can cause family conflict. Not having access to the person you love heightens everyone’s emotions. Try to take a breath and be kind to other people, because they’re in a stressful situation as well.”
Janet says talking to a Violet Guide was a big help. “Going through everything with COVID, it was good to put things into perspective and know I wasn’t alone carrying the weight of caregiving.”