Because the transition into the role of carer seemingly happens overnight, there can be unexpected challenges associated with this life change which often go unrecognised by the carer or people around them.
Experiencing loss and grieving isn't confined to the loss of the person you're caring for. In fact, it's a very common experience amongst carers given the many changes that can go along with providing care. "It was exhausting," Beate confesses, who cared for mother with pancreatic cancer. "So was the anticipatory grief - that sense things are going to change, but you don't know when - and the emotions that come with it."
It is important to acknowledge and accept the challenges that come with caring for a loved one and find a way to process them. Here, experts share some common things you may grieve, and offer advice on how to cope with this.
What might grief look like?
Grief presents differently in different people. It can look like exhaustion, feeling flat, numb, overwhelmed, frustrated, more irritable or angry, wanting to withdraw, or feeling like you don’t have time for yourself.
There may also be a sense of guilt and sometimes shame for feeling this grief or loss, says Dr. Phoebe Lau, a clinical psychologist in Melbourne, Victoria. Or guilt for wanting the whole thing to be over because you’re so tired of it, adds Rose Merifield, a grieve and bereavement counsellor in Point Cook, Victoria.
These emotions can translate physically. For instance, you might experience changes to your appetite or sleep.
What might you grieve as you step into a carer role?
When all you do is look after or think about the wellbeing of your loved one, you may feel like your identity has suddenly morphed into ‘carer’, leaving little room for other aspects of your life to inform your sense of self, says Dr Lau.
Your previous life
How your day-to-day life was like, being able to go out to dinner whenever you like, socialise with friends, go on holidays, all of these have to be altered, says Lau and Merifield. You might also find yourself reducing work hours or quitting a job you loved, and needing to live on less income.
You may experience anticipatory grief around the loss of the future you imagined with this person, says Dr. Aspasia Karageorge, a clinical psychologist in Sydney, NSW. If they are your partner, you might have been planning and anticipating a grand retirement trip or a new home, and now with their illness this may look different.
You lose the way you used to relate with the person, says Karageorge. If you’re caring for a parent, you may grieve being in the role of the child in the relationship, and if you’re looking after your spouse, you grieve just being a spouse and having a spouse, especially if you assume almost a parental role.
Also, friends and family may drift away, not wanting to be confronted with the inevitability of death, says Merifield, so you can be left with a smaller support network.
How can you process grief?
Carers may not realise or wish to acknowledge their own grief, especially when it feels like their losses fail to compare to their loved one losing their health and independence. But your grief is important, too.
Here, experts share a few ways of coping. Remember, “every single person experiences grief in their own unique way, there are tools that you can utilise, but these may not help every single person,” says Merifield.
Every day, reflect on your experience, and choose to step into your role
Check in with yourself for a few minutes each day, noticing what's happening in your body and in your mind, without judgement. Then, do something to redirect your focus onto what matters to you today, who you want to be for the person today. Some people like to listen to an inspiring piece of music to refocus, or read a passage, go for a stroll, or write in a journal.
“It can be useful to acknowledge that this is something that matters to us and we’re choosing to do this today,” says Karageorge. “And that can help bring back a little more of a sense of control.” Even if you feel resentful or apathetic that day, remind yourself it is okay to still make that choice.
Reach out to people you trust
Talk about your experience with a friend or support group, as putting it into words “helps the brain structure that information and process what is going on,” says Lau. You might want to seek a psychologist or counsellor who would be able to provide additional tools to cope.
Carve out time for pleasurable activities
Lau suggests thinking about your non-negotiables, things which bring you pleasure and tell you you’re worthy of care. It might be coffee once a week with a friend or attending a gym class you really love. Determine how you will arrange for these to happen, so it doesn’t end up falling through the cracks. “It’s a way of reminding yourself that you are more than just a carer,” says Karageorge.
Violet exists to change the way we spend our final days, a life stage we call 'the last stage of life'. We help carers with acceptance, preparation and communication by providing support through our Violet Guided Support Program and our growing library of stories and information.