Lessons from a Violet Guide: supporting someone who's a caregiver

Amanda's story

When I first spoke with Laura, she was struggling. Her brother had just received a terminal prognosis with months to live and there were family dynamic issues surrounding his care. She also worked full time, was trying to arrange care for her father, was caring for her daughter and husband who had injuries and illnesses, all while grieving the loss of her two best friends who she cared for the year before. 

I could feel the weight of what she was juggling through the phone. Laura needed to unpack everything she was living through and feeling. She was very easy to listen to and connect with. She let me know in a later conversation that our scheduled phone calls kept her going.

It became apparent very quickly that Laura has a huge heart and would do anything to help people if she had the means. To say I was inspired by Laura's spirit and acts of care and love is an understatement. Just one example of how she shows up to life was when she shaved her hair off in solidarity with her brother.

Being such a doer and giver, I often focussed on Laura’s self care, personal boundaries and how necessary they were for her overall wellbeing.

In 2020, Laura was beside her two best friends in the lead up to and when they both died. However, as her brother’s death grew closer, Laura was surprised at how different the anticipatory grief felt. We spoke about that and I reassured her that no matter how she felt, it was ok - there is no right or wrong - and it certainly wasn’t taking anything away from how she felt about her friends or what she had done for them.

Laura was adamant on fulfilling her brother’s wishes and giving him a “beautiful death”. 

As fate would have it we had a scheduled call the last night of her brother’s life. We spoke briefly about how she was managing with administering breakthrough medication and her exhaustion. She mentioned that her brother’s best friend was on FaceTime so he could be in the room with them as he was interstate. There  was a full moon and Laura opened the blinds so the moonlight could pour into the room. He was surrounded with Laura’s family and his mum - just as he had wanted - and a lot of love. I told her how proud of her I was, how respectful she was of her brother’s wishes and that she had given him a precious gift.... Laura had given him a beautiful death. 

To hear how far Laura had come and that she was able to be with her brother right to the end was incredible. Being able to support Laura and have her invite me into her world with such vulnerability, honesty and heart was such an incredible privilege. It is difficult to articulate.

Amanda’s advice on supporting someone whose loved one is dying:

• Ask your friend for a list of things that you can do to provide practical support, without them feeling overwhelmed or like it's 'another thing' they need to do. Things like school pick ups, groceries, home made meals, mowing lawns, offering to sit with your friend's loved one so they can have a break (or shower), child-minding, being an ear and shoulder, coordinating rosters for things that need to be done amongst friendship circles, being a point of contact or creating a group chat to relay information on behalf of your friend, so they don't have to repeat themselves amongst multiple conversations .
• Remember, this is a very overwhelming, emotional and vulnerable time for your friend which won't end until long after their loved one dies. Your friend will be exhausted, most likely be experiencing anticipatory grief and will not feel like showing up to life or have the capacity to maintain friendships as they once would have. Be patient and don't take this personally - it is by no means a reflection of how they feel about you or your friendship! Your friend truly won't have the bandwidth or energy for much else outside their role as caregiver, daily life management, anticipating and preparing for what is ahead and grieving whilst readjusting to life without their loved one afterwards.
• Send simple texts like "thinking of you" "sending love" or even a heart emoji to let them know you are thinking of them and are at the other end of the phone should they need you. It seems like nothing, but really can make a difference to their day

Laura on the advice that helped her the most:

• Amanda encouraged me to journal, which I still do, the best and worst thing of the day
• Amanda sent me videos to help me understand what to expect and how to prepare which were confronting but really useful
• She also explained what Mum and I were 'allowed' to do if my brother died at home and that we didn't need to rush or make calls immediately to have him taken away which I didn't know anything about and was extremely helpful

If you think the support of a Violet Guide might help you or someone you know click here to fill out an enquiry form of call 1800 846 538. Violet is a national not-for-profit and all our services are free.