Carer Grief - September Newsletter
I have experienced grief in my life and said goodbye to loved ones, but no one as close as my Grandma. Living with someone that you provide daily care for, whose life is completely intertwined with your own is a different kind of loss.
After my Grandpa passed away, people would contact Grandma and say ‘sorry for your loss’. To which she would tell us ‘I don’t know why people say that! He’s not lost, he’s dead.’ So in honour of our beautiful pragmatic Nerida Noon, I’ll avoid saying we ‘lost’ her.
As part of my own processing and in preparation for this newsletter, I went searching for resources related to carer grief and came up short. There really isn’t much information out there about the unique grief associated with losing someone you care for. I thought it may be helpful to combine some general grief resources with my lived experience so that we can improve our grief literacy, specifically in relation to carers.
For this reason, the theme I’ve chosen for September is
‘Carer Grief’.
After Grandma died the four main feelings or effects I experienced were:
Numbness
Immediately after Grandma died, I was able to feel all of the feelings - I cried a lot. The day she died we had our whole extended family (35ish of us) come to our house and we grieved together. It was heartbreaking, but a beautiful immediate comfort having everyone process her death with us.
What surprised me was that in the days that followed I felt less and less. I would walk around our home staring at her arm chair, her tablets, her phone, her tea cup, her hearing aids and feel nothing. It scared me a little.
I quickly booked a session with my amazing counsellor who helped explain to me why I was feeling so numb. He helped me understand that the numbness was my bodies way of coping with the loss. Every day I have endless reminders of Grandma all around me - her belongings, the daily tasks we would do together, checking the blinds in her room every morning at 8am to see if she was up for the day. Our lives were so enmeshed, that it was simply too much grief for my body to handle so numbness took over.
What’s important to note is that there is nothing inherently wrong with feeling numb - it can be a very helpful tool our body gives us to deal with grief. However, it is equally important to still have space to feel and process that grief. If we completely bottle it up without processing or feelings, that isn’t helpful either. But some numbness to soften the immediate heartache is our brains way of protecting us.
Overwhelm
Overwhelm currently infiltrates every aspect of my life. I can’t plan more than a day in advance, sometimes even a few hours. If my husband and four year old ask me a question at the same time, I freeze. Simple tasks like grocery shopping, taking Sammy to a swimming lesson or replying to emails feels challenging. And don’t even start on the patience with my beautiful kids. I know raising young children can be a hard season on its own, but I desperately wish I had more tolerance for the daily battles of parenting.
Brain fog
I usually consider myself a fairly switched on person, but I have been humbled by how poorly my brain is functioning at the moment (I’m sure the 7 months of sleep deprivation isn’t helping the situation either!). I can’t seem to hold thoughts in my head like I was before Grandma died and I certainly can’t forward plan or coordinate tasks like I usually would.
We recently went up to the family shack for a night with the kids, for us to get there and realise I didn’t bring anything for my daughter… I’d left the whole packed bag sitting in her bedroom. Simple daily tasks are near impossible.
I’m also going to use this particular point to excuse myself if this newsletter isn’t particularly eloquent or succinct. Bear with me, I’m doing my best.
Relief
This one surprised me, although it totally makes sense. In the days following Grandma’s death, I felt an instant weight lift off my shoulders. I knew being her primary carer was a big responsibility, but in hindsight I underestimated just how much space it had taken up in my life. I suddenly felt like my weeks were open, getting out of the house in the morning took an hour less and I wasn’t constantly checking in with someone if I was out longer than I expected.
I don’t feel like caring for Grandma was a burden at all. To spend the past two years living with her was genuinely was one of the biggest privileges of my life to date. However, there is also a significant mental load that comes with that and I was shocked by how quickly that lifted and how light I felt.
Grieflink explains that guilt, loneliness, isolation, anger, overwhelm and confusion are all normal responses to the person you care for dying. They say specifically with carer grief it’s important to share how you’re feeling, be patient with the grief, ask for help when needed and slowly build new structures into your life to replace old routines.
What I’ve learnt is that there’s no way to speed up the grief or grieve perfectly - it’s usually a matter of being gentle with yourself and taking things day by day.
HOW TO HELP SOMEONE WHO IS GRIEVING
It can feel confronting to support someone who is grieving, but the first step is simply showing up.
CHECK INS
Every text, phone call or visit from friends or family has meant so much during this time. I haven’t been up for seeing heaps of people, but even a text goes a long way to feel seen and supported by those around me.
Having space from close friends and family for me to ‘brain dump’ all my thoughts and feelings has been incredibly helpful. It’s allowed me to start processing Grandma’s death and working out our new normal.
MEAL DROPS
Meals are such a practical way to help in those early days and weeks of grief. With the grief induced overwhelm I couldn’t think ahead to plan a meal, so having nourishing, comforting food delivered to our door was so incredibly helpful (bonus points if it’s something you can freeze!).
LIFE HELP
This is a broad category, but help with whatever jobs you can take on for that person. This might be doing their grocery shopping, taking their dogs for a walk, helping them reschedule appointments etc. For us, it’s been help with the kids. Having people take the kids for small chunks of time has been wonderful for giving me space to process and grieve (and also keep on top of the household jobs!).
Three days before Grandma died we had SBS Insight come and film at our home. They were doing a story on grandparents caring for grandchildren and wanted to use our intergenerational home as an example of the inverse of that. The episode is airing this Tuesday 8th September and will include a dedication to Grandma.
What I’m so looking forward to seeing is just how ‘her’ she was - she was reading books to the kids, playing boardgames over lunch and out in the garden with Cece. The illness that killed her took over incredibly quickly, which meant we didn’t have time to properly say goodbye and our immediate processing has been hard. However, it was also a blessing in that Grandma was so well right up until 24hrs before she died and I can’t wait to see her smiling face on TV.
My mum took her for a drive the week before she died and asked her to rate her quality of life out of ten. Without missing a beat Grandma said it was a 7 or 8 out of 10. I think for anyone to have a score this high at 92 is incredible and it brings me a lot of comfort knowing how happy she was right before she died.
If anyone else is grieving a loved one at the moment, I’m sending so much love your way. I know people say that ‘grief is the price we pay for love’ and whilst that doesn’t always bring me immediate comfort, I do feel incredibly blessed to love and be loved by Grandma. She was an incredibly special woman and I miss her so damn much.
As always, please feel free to pass this newsletter on to friends or family. If they want to subscribe, they can do so via my website. If you have any questions about the info above, please reply to this email. I’d be happy to discuss!
You can listen to previous episodes of ‘The Truth About Ageing’ in your favourite podcast app (Apple Podcasts, Spotify) or you can stream it at
www.navigateagedcare.com.au/podcast. I do have a few old episodes I recorded with Grandma that have been so lovely to listen back on. She made her debut on episode 7 and then came back on ep 26 and ep 67.
I am also planning on going back to listen to episode 49 & 50 with grief and bereavement social worker, Joanna McIlveen. Jo is incredibly knowledgeable and talks through practical tips for processing grief and loss.
Occasionally I also post updates on socials, which you can find at:
Facebook - @navigateagedcareau
Instagram - @thetruthaboutageing
Thank you again for being part of the Navigate gang.
Big love,
Kate.
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