"Leave It in That Room" By Khadra Awomer
Spring Season Letters From A Caregiver
Hello! If you’re new to Carer Mentor, welcome! Thank you for being here!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.
Letters from a Caregiver.
“Letters from a Caregiver” is a weekly article where a caregiver offers wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!
There are two previous seasons of Twenty-One Letters.
This Spring Season so far
Misunderstood, and everyone has an opinion,” By Victoria
“What It Takes To Embrace the Life He Has “ By Chris B. Writes
“The Long Road Home for a Different Kind of Future” By Haley Haddow
“Grace, belatedly..…Becoming the daughter she needed” By Sarah Bain
“Caring to Love.” A Letter to My Younger Self By Kirbie Earley
“My caregiving journey is a family healing journey” By Viva Mogi, MPA
“Nothing and Everything Will Prepare You for This Moment” By Brittany Carroll
“But You Will: A Letter to My Younger (Suddenly) Caregiver Self.” By Tina Matras.
Today’s ‘Letter from a Caregiver’ is by Khadra Awomer, author of “Dementia Who”
I met Khadra in December 2025. Her mother had passed earlier in the year. I realised she’d been caring for her mother for a long time—a courageous and harsh experience given the cruel realities of Dementia.
Khadra shares her personal experiences of caregiving and dementia research in her publication. Here are a couple of her articles:
Khadra’s letter is not just sharing soulful empathy with her younger self, but also an insightful study of her family dynamics and why she and they behaved as they did.
Thank you, Kat, for voicing what’s hard for some to recognise, let alone articulate. Your compassion and understanding shine, especially in these words —a quote from your letter:
“What you didn’t understand then was that this was the first time you stepped outside what was expected. Not just within the family, but culturally. You were asking people to face something they had been taught to hide.” - Khadra
No spoilers, except to say it’s beautiful to hear how you enabled creative, happy times for your Mum; a liberation from those dynamics and that room! Bravo.
Thank you for sharing your letter with us, Kat.
Author’s Bio: Khadra Awomer spent thirteen years caring for her mother through dementia. She writes about her caregiving experience, grief, and the complicated business of rebuilding life after caregiving. She now translates dementia research and news into plain English alongside personal reflections in her Substack ‘DementiaWho’
Leave It in That Room
Dear Kat
I’m writing to you just after the day everyone stood in Mum’s living room and told you not to take her to the memory clinic. You’d spent two years struggling to get her to this point and that day changed the way you cared for mum for a long time after.
You won’t forget this day, the argument, the shock of how quickly support disappeared, and the look on Mum’s face when the word crazy was said out loud.
You’re wondering whether you pushed too hard, whether you should have handled it differently, and whether being right was worth what it cost. You’re replaying it, trying to work out if there was a way to protect her from the fear she felt that day.
I’m not here to correct you or smooth this over. I just want to explain what you didn’t know yet about fear, and cultural expectations and how they shaped your caregiving journey.
At that point, you were living with mum, watching her closely, tracking small changes, noticing the repetition, the slips, the increasing falls, and seeing her trying to hide her confusion. You weren’t certain it was dementia.
You were scared it could be something else, something worse and more immediate. Luckily, mum allowed you to go with her to the doctors, and that gave you a chance to speak to them privately about your concerns.
Back and forth you went, appointment after appointment.
Eventually she agreed to a basic assessment. The doctor believed it was some form of cognitive decline and needed to escalate it to the memory clinic. Mum wasn’t having any of it. She was fine. There was nothing wrong with her memory. You didn’t know at the time how annoyed she was about some of the things she was asked. She thought she was being treated like a baby.
You were lucky the doctor had known you both for years and could see the changes that mum didn’t want to speak about. Then you did what you do best, researching everything about cognitive decline and looking at all the possibilities.
You thought you were doing the right thing by involving the family early. You laid out what you’d noticed. The same things they had seen, but not in the same way, day in day out as you did living with her.
You explained what a memory clinic was and why an assessment mattered. You believed that if they understood the process, they’d support you. When they agreed, you felt relief.
Because everything you had read said the same thing: bring support.
Months in advance of the appointment, you agreed who would go with you, and you started to drop in reminders to mum so she would get used to the idea rather than being surprised by it on the day. She was still able to retain information for a while back then.
What you didn’t understand yet was how much language shapes fear.
In our culture, there isn’t a word for dementia. The word we have doesn’t describe an illness. It labels a person. It turns something medical into something shameful. Something to hide. Families learn early to manage these things quietly, within the home. Back then you didn’t know of other families going through the same thing because nobody talked about it.
The day before the appointment, a family meeting was called. You thought it was to go over a battle plan for the day. Just logistics. Who would drive, what time you’d leave, how you’d manage the forms.
Instead, it became an argument. In front of mum.
You didn’t know yet how easily they would use her fears against you. You knew mum’s fear of scans, and that was pulled into the argument. Someone repeated something mum had said privately to them about the doctor’s questions she’d been asked before, how they felt small and embarrassing. All of this was used as proof that you were pushing her into something she didn’t need.
No one had bothered to learn what an assessment involved.
Then the memory clinic’s location became the focus. They’d moved from the main hospital to the other side of town, to a hospital with its own history. You tried to explain that it didn’t matter that it was in a separate building on the same grounds. You had worked so hard not to use the word everyone else used for that place.
But then someone said it.
“Mum, you’re going to the crazy hospital.”
And that was it.
You didn’t need her to say anything. You could see it. Her face changed. You knew you had lost that moment. Still, you didn’t stop. You said you would take her on your own, hoping she would still come with you.
But what stayed with her wasn’t your reassurance. It was that word. What you learn later about her fear of being left there will stay with you for a long time.
That night, she was frightened. You tried to calm her, but you were shaken too, and lay awake thinking about how easily fear could undo all those years of preparation to get to this point.
You replayed everything. The shouting. The words. You wished you’d pulled back. You worried about how much damage it had done to mum’s trust in you.
That was the moment you realised that family support was conditional. That when it came down to doing the hard stuff, you’d be alone.
What you didn’t understand then was that this was the first time you stepped outside what was expected. Not just within the family, but culturally. You were asking people to face something they had been taught to hide.
You weren’t wrong for insisting. You weren’t cruel for pushing forward. But Mum was hurt in the process, and that’s the part that kills you.
You will replay that day more times than you expect. You will wonder if there was another way to say it, another way to handle it. You will question whether advocating for her came at the cost of her trust, especially when you later learn how deeply she feared being left alone, locked up in that hospital.
That’s not on you. That was them making it all about their fears and using that to try to scare her into not going.
But what you didn’t see then was how much that moment shaped you.
You’ll see this pattern repeat over the years. Them stepping in, showing disapproval, saying outright that something shouldn’t happen when it was about mum’s care.
You didn’t become cautious later by accident. You learned it here. You learned to be careful about what you shared and with whom. You learned that they could step in with strong opinions, blanket judgments, without ever taking on the responsibility themselves.
And for a long time, that made you hesitate, held you back from doing things that were outside our family & cultural norms.
Until it didn’t.
You reached a point where the cost of holding back became too much. You could see what staying within those boundaries was doing, how much it was limiting her world, and yours. And once you saw it clearly, it became harder to keep justifying it.
You didn’t ask for permission. You didn’t tell anyone. You just started to change things, and you did it sneakily, some might say.
You made sure Mum did something outside what was expected every day. You found ways to get her out, to engage her, to give her moments that weren’t defined by fear or decline. Art classes. Singing sessions. Small trips. Places and mixed activities that would have been dismissed, disapproved of as ‘not culturally appropriate’, if you had told them about it. What we did might sound like hardly anything to others, but it was so much more to us.
And those moments mattered more than you realised at the time.
Her laughter. Her concentration. The way she created something from nothing with one hand in art class. The parts of her that were still there, still responding, still present.
None of that came from doing what was expected. It came from choosing her over what other people thought should happen.
You’ve carried that day for a long time. The guilt, the second-guessing, the feeling that you got it wrong for far too long. But you didn’t, you changed things. You were trying to do something that went against fear, to face the truth and move forward while everyone else was against it. That was always going to come at a cost. What matters is that you kept going anyway.
So leave the guilt where it belongs, in that room, on that day.
Because everything that came after shows you were never wrong about what she needed.
Kat 💜
The Closing Rapid Fire Questions from Victoria:
1. In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving... ’
Research has been my main tool helping calm my fears by gathering a well-rounded perspective on each situation. I also rely on morning pages, where I pour out everything that’s on my mind, then tear the pages and let them go to reset for the day ahead.
2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics
There are people in my life whose courage just astounds me. I also admire one relative who is a fantastic peacemaker and has an amazing ability to build bridges. And finally positivity, that infectious optimism that inspires action and makes the hard work worthwhile.
3. What’s one quote/movie/book that’s inspired you? [Author answer] A prompt for comment discussion
Everything will be okay in the end. If it’s not okay, it’s not the end.
Prompt for discussion:
What did caregiving teach you about the people you thought would show up?
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Thank you. I needed this tonight "You’re wondering whether you pushed too hard, whether you should have handled it differently, and whether being right was worth what it cost. You’re replaying it, trying to work out if there was a way to protect her from the fear she felt that day."
The rapid-fire questions and answers are so helpful. Well done, women.