Chapter 7: Relief

Draft #1

Hello,

I know, it’s been a while. I took a break to recharge at the end of 2025, and it took (a lot) longer than expected to find my way back to writing. As it turned out, instead of writing about other families’ experience of illness, I faced them with my own extended family, and I needed time.

I am back now with the latest instalment of I Wish I Could Tell Mum.

If you’re finding me for the first time…Welcome!

Regular readers will know that this is a serialised book about the emotions and experiences of having a parent with dementia. I’m writing in public because I want to make it accessible to everyone. It’s designed so that you can start anywhere.

If you’d like to start from the beginning, here is the Introduction. If you’d like to look at all the previous chapters in one place, you can access all the chapters here.

Please note that this contains material that is difficult for some readers.

Now, on to the topic at hand…Relief.

---

Heather, 65

She’s gone.

I got the call three Wednesdays ago. 5:13 pm. Walking home from work, through the park as always. I was almost home. Airpods in, chatting with my work friend, Sarah, trying to purge the frustration of another daily instalment of our boss’s indecisiveness before arriving home to our families. A lost cause, really, but we try.

I heard the call waiting beeps in my ear and pulled my phone out of my pocket. It was Mum’s care facility. They call often enough about daily life things that I didn’t panic when I saw the call come through. I just ended the call with Sarah and accepted the new call.

I knew immediately that something was wrong. It was Amanda, one of Mum’s regular carers. I’m not sure whose job it usually is to make “these calls,” but I suspect she volunteered to call me. We first met when Mum moved in 7 years ago, and have seen each other a lot on my visits over the years. I think she probably wanted to be the one to tell me that Mum was gone. I could hear it in her voice immediately. This wasn’t one of “the doctor has made an adjustment to your Mum’s medication” calls.

“Where are you? Are you with someone?”

“I’m almost home. Why? What’s going on?”

“She’s gone. I’m so sorry.”

“Wait…What?”

“Your Mum passed away peacefully during her afternoon nap.”

That’s all I can remember from the conversation. I’m sure there was more, but it’s wiped from my memory. In that moment, my mind went blank.

It feels crazy to say it, but I was genuinely shocked when I got the news. Mum was 91 and had been in this horrible holding pattern for years. Physically, she was there and maintaining a level of health that just didn’t seem fair given the state of her brain. In reality, Mum had been gone for ages. We’d been in this stage for so long; somehow, it felt like she would go on forever. Our rhythm of visits, the weird way our conversations ignored the moments when she reverted to the German language she’d learned as a child. Me prattling on about the mundane details of my week, just to fill the silence. Cousins and friends joined me when they could to help make the conversation go on around Mum. It had all become normal. The thing we did. Nothing had changed for so long that it seemed like it never would. Somehow, over time, the constant rhythm gained a sense of permanence. After the loss that came with Mum’s diagnosis and then the progression of her disease, a different version of our relationship came to be. Now I’ve lost that too.

During all those years of talking and knowing she wasn’t really listening, I told myself I was doing it for her. To keep her entertained. Now that she’s gone, I can see that a big part of it was for me, too. I needed to tell her about my life just like I always did. Now she’s not there to tell, and I really miss it and her. It feels like a hole in my chest that will never be filled again. Who do I tell now?

I thought that I had lost her years ago. But this is different. It’s almost impossible to put words to the difference. Maybe in time I will be able to, but not now. Another part of her, and of me, is gone and can’t get her or it back.

Now Mum is gone. Really gone. We had the funeral last week. It was small and no fuss, just like her, but no one there would have really understood that. It was mostly my friends and a few cousins. There’s no one from her generation left - at least no one capable of attending a funeral. My cousins knew her before, but in reality, most of the people there only knew ‘post-dementia Mum’. I tried to tell stories about before, hoping the memories would make me feel better. In the end, it felt pretty empty when I realised that the memories were mine alone.

People keep telling me that I should take time to grieve. I’m not sure what they picture when they say that. Am I supposed to sit alone in a chair for hours on end while the grief washes over me? It just doesn’t happen like that. At least not for me. I wake up in the morning, and for a brief moment, my mind forgets that she’s gone. I start thinking about what she’ll need today. Then it hits me. She doesn’t need anything today. Not today. Not any day.

My mind seems to bounce all day, unable to focus on a single thing for too long. One moment, I’m trying to process that she’s not here anymore, that I won’t be able to tell her what’s happening in my life ever again. I know that she hasn’t really heard me for years, but I could still tell her. The next minute, I’m on the phone with the bank, sorting out her accounts. Or cancelling her insurance. Or letting the pharmacy know not to send any more prescriptions.

I’ve had power of attorney for over 10 years, and I thought I had everything well organised. Turns out that no matter how organised you are, there’s an unavoidable pile of stuff to do when someone dies. And it’s the same story over and over again. Telling the well-meaning customer service rep that she died. Waiting while they awkwardly give their condolences and then, remembering they’re measured on call times, finding a way to get us back to ‘getting it registered on the system’. It’s hard to know whether you’re better off doing it all at once or doing one a day for however long it takes. You start to sound like a reminder from Alexa that won’t turn off. How many times in one day can you tell a stranger ‘My Mum died’ without going nuts? Up to a point, I can see how it might help me face reality, but after a while, it just feels like unnecessary pain.

Just when the distraction of administration to keep your mind busy would be helpful, you’re forced to wait. And wait. And wait. There is just so much waiting…waiting for a death certificate, waiting for probate…maybe there’s something about the universe conspiring in these moments so that you don’t rush through. It definitely feels that way sometimes. Like you’re being forced to sit and dwell on what’s happened, rather than distract yourself with all of the mundane paperwork. Maybe this is a way to force the grieving process to start, even if you’re not ready for it.

There was certainly no waiting when it came to packing up her stuff. I think we had about 3 days to get everything organised and removed from the home. I get it, they need the space, and so many people need care, it just feels so jarring compared to all of the other waiting around. It’s not like Mum had that much stuff in the end. Just some clothes and books and a few things we’d put in her room to make it feel nicer. So there wasn’t really that much to do; it just felt strange. Sort of like we were sweeping things away in a hurry. Time moves quickly and slowly all at the same time. It feels opposite to how it should be. The paperwork should be quick and easy. It’s all the other stuff that needs more time.

This doesn’t feel like any other kind of loss. The unique bond that I had with Mum, which in some ways has been gone for years and in other ways hung on by a thread until she finally died. That same bond was clouded by all of the challenges we’ve been through over the last 7 years. The changes in her behaviour, not recognising me any more, not knowing where she was…I keep struggling to explain it, and I just can’t. It’s different, and on one level, it should be. It’s my Mum. On the other hand, I thought that other experiences of death might help me cope with this one. That maybe I’d have learned something or have some helpful perspective, but there’s nothing I’ve seen before that helps with this. It’s something else entirely.

As the weekend approaches, I catch myself thinking about things I need to pick up to take to Mum. Then it hits me again. When I go to the pharmacy and the supermarket, I don’t need to check my ‘for Mum’ list. I don’t need to make sure her scripts are up to date. No more making sure there is enough money in the account for her few remaining payments. I won’t be going to visit her on Saturday afternoon. Not this week or any week. There’s now a gaping hole in my weekend. The harsh reality of losing Mum also means gaining time back. Time I don’t yet know what to do with.

I’ve been thinking about the other things you lose when this happens. Over the years of being at the Care Home, I got to know people like Amanda and the other amazing team members. They became part of our weekly rhythm, important for Mum’s physical care but also such a relief for me knowing that she was in their hands. They were great at helping me hold a conversation when I visited alone. If you’ve ever had to deliver a one-hour monologue, you’ll know how helpful that is. And through that, you can’t help but get to know each other. Then, with Mum’s death, we all moved on. Overnight, those conversations disappeared. I know it was always going to happen that way, but it’s like the feeling when a big, intense work project ends. You go from being joined at the hip to nothing, and it’s weird. That saying that “people come into your life for a reason, a season or a lifetime” keeps running through my head. It was a long season, but now it’s over.

‘You must be so relieved’

I’ve heard that many times from close friends since Mum died. I know they mean well, but it sounds awful when they say it. I suspect they are trying to find a way to make it OK for me to admit that, amongst all the grief, there is an element of relief. They want me to know that they won’t think badly of me if I do say it. I want to say it, because it’s true, but it’s not quite that simple. It’s not grief or relief. It’s both. All the time. In different measures at different times, depending on where I am, what I am doing and who I am with. When I am by myself, in the quiet moments, the relief shows up, sometimes only for a split second. I can’t tell whether the relief is for her, because she would have hated how she ended up. Or relief for me, that I don’t have to witness her disease or be a servant to it any more. Other times, the grief is overwhelming. I know that it’s natural. It’s only been a few weeks, but the way I swing between the two makes me feel guilty, and that’s why I haven’t really spoken to friends about it.

I’ve noticed a change in how I talk about Mum since she died. For some reason, it feels easier to talk about how she used to be. Before the dementia. Over the last few years, it’s almost felt like a betrayal to talk about what she was like before. I didn’t want to act like she was dead before she actually died. Now that she’s gone, it’s different. I can be more open and free in the way I talk about her, even though it hurts when I do. Now it feels like I can openly miss the person she was, not the version the disease turned her into.

---

Your thoughts and reactions are invaluable as I endeavour to reflect the reality of having a parent with dementia.

I tried something new with this chapter. Previous chapters have included an ‘authorial framing’ at the beginning and the end. In this case, it felt unnatural and unnecessary, so I decided to let the perspective stand alone. The other difference here is that the chapter is a single perspective, rather than the views of the 3 different characters.

I’d love to know what you think!

I’m also keen to understand your thoughts on questions like:

1. Does this portrayal feel authentic to experiences you’ve witnessed or lived?

2. Which moments resonated most strongly with you, and why?

I welcome your comments, whether public or private. Your public comments help open up the conversation, but please be mindful that this may be very difficult material for some readers.

Thank you.