Caring for my mum with BPD: Lucy’s story
Lucy was just 10 years old when she first started to realise that her family situation was a bit different to others.
Everyone is facing new challenges with Covid-19. Whether it’s finding a new job, being in constant close quarters with loved ones, or devising creative new ways to use up that panic-bought penne pasta. But Covid-19 has made my life easier in one very unexpected way — as a carer.
Words and wisdoms by Lotti O’Dea
I care for my mother who experiences both delusional disorder and early stage dementia. I‘ve been a carer for 20 years, including when I was a kid and long before I knew what the word carer meant. Caring was challenging enough in person, but then I moved and mum was suddenly 2,500kms away in a different country. Before Covid-19 I would run into constant resistance being a carer at a distance. Social workers don’t understand why you can’t pop by their office, doctors are insulted they need to email you about the result of an appointment because the patient has memory issues, and the question that follows every time I give them my Australian number — “But isn’t there someone here who can do it?”
But now self-isolation and social distancing means there are suddenly a lot of us who have loved ones needing support, and many more people have to quickly adapt to be carers at a distance.
In the last three years I’ve learned a lot about this new way of caring, mostly by trial and error, some of which might be useful to those who suddenly find themselves distanced from their loved ones who need some extra support:
Try to balance your ‘carer’ conversations with lighter chats. Try alternating so that for every conversation you have that is all about doing a task (e.g. setting up a doctor’s appointment, organising food delivery) or talking about their issues, have another call that’s lighter and less task-oriented. Grandma knows you’re worried for her, but she still wants to be treated like Grandma, and not a ‘person at risk’.
Offer to help organise the fundamental support they might need. If you order their groceries online or set up their bills, you can help reassure them the basics are sorted if they stress out or start catastrophising, e.g. If they say “I’m going to starve, I have no food”, you can respond that the order will arrive soon.
Empathise with problems or concerns rather than fix their problems immediately. If they’re nervous, sometimes the best you can do is acknowledge that must be tough. Or talk about whether you also feel nervous and what you do about it.
Help them get creative about their hobbies. Do they like art? Find them a virtual gallery tour. Sports? Try e-sports or an at-home activity.
Think ahead for what support they might need. Check with psychiatrists or GPs about how they’re going to do sessions or assessments, and set up your loved one with what they need so it’s easy for them when they have to do it. Doing this in advance reduces the pressure on your loved one to sort this out at the last minute, especially if they dislike technology or if they might use tech malfunctions as a way to avoid treatment.
If you feel yourself getting frustrated and you know that counting to ten isn’t going to fix it, find a quick exit — get off the call. Then work through your frustration — you’re allowed to feel it — in whatever way works for you. I like to listen to angry music while running, or talk (or rant) to someone I trust. You’re the best carer when you’re in the right headspace, ready to be patient and kind.
Organise social interactions with your loved one. Schedule it so that interactions are staggered over time. In our family, I’m one of three siblings and we each take a day of the week to send Mum a photo, so she gets these as well as calls during the week.
Running out of things to talk about with them? Try watching the same TV show or sending them a video or article and talk about it. There’s only so much covid-19 news we can all handle.
If you’re being contacted all the time by your loved one, set up ‘office hours’ — when you’re available to talk with them about whatever they want. But outside of that you’ll be busy. Mine are in the evening and early morning, so I can have a workday without needing to text Mental Health Services during meetings. Sometimes I break these when it’s urgent, but it’s been a great boundary to let me be present in my roles outside of a carer.
We acknowledge the Traditional Custodians of the land we live, work and create on, and pay our respects to Elders past and present.
We acknowledge that sovereignty was never ceded.
Always was, always will be, Aboriginal land.