Hello fellow caregivers! Occasionally I receive a request for a guest post that stops me in my tracks and this is one. It’s from a caregiver who is also an IT entrepreneur and so some of her challenges caring for a mother with Alzheimer’s seemed like they might be eased by clever and purpose-built design solutions. I urge you to read this with an open mind. There’s a free offer at the end if this is a product that you need and keep in mind, this is NOT a paid post. I just think it might be truly helpful for some folks.  Donna

THE TWO PLACES I COULDN’T BE 

by Kirstin Thomas 

There is a particular Tuesday I keep thinking about. My mom called me ten times before lunch. I live twenty minutes away. I could’ve just driven there, on most days I did, and none of that mattered. 

My mom has frontotemporal and vascular dementia, amplified by a stroke last November. She lives in a care facility. I visit her almost every day, and I hold Power of Attorney for her personal care. By every measure I am the present daughter. I am the daughter the literature wants. I am the daughter every dementia care plan assumes someone has. 

It still wasn’t enough. 

The first thing dementia does, the part nobody really prepares you for, is collapse your sense of time. My mom does not remember she called me five minutes ago. The anxiety that drove the first call resets cleanly. Whatever uneasy feeling sent her hand toward the phone the first time, she feels again, undiminished, when she calls the second time. And the third. And the fourth. Each call is, to her, the first time. The reassurance I give her is real, but it doesn’t stick. The fear waits, and it returns. 

UCLA Health describes it precisely, and the language is almost cruel in how plain it is: people living with dementia will forget that they called before or asked the same questions even five minutes ago. This is the anxiety reset. It is the engine of repetitive calling in dementia. The world calls it a behaviour problem. It isn’t. It’s a person in distress, cycling, because the distress was never resolved. 

I want to write to you specifically about the gap your work has named more clearly than anyone else writing about caregiving today. The structural gap. The fact that a family caregiver, no matter how present, cannot be in two places at once. The fact that the caregiving infrastructure, the one we like to imagine exists because the word infrastructure sounds reassuring, has no real answer for what fills that gap when a person living with dementia needs the voice of someone they love and that someone is in a meeting, in the shower, at the edge of sleep, or chasing kids out the door for school. 

For a long time, I thought the answer was just trying harder. Getting up earlier. Answering faster. Cutting one place short so I could get to the next place sooner. If something wasn’t working, I assumed the problem was me, that I just needed to do more. 

Then I came across the philosopher Eva Kittay, and something she wrote stopped me. She says that when someone depends on you completely, the caring stops being something you fit into your life. It becomes your life. You can’t outwork that. You can’t optimise your way out of it. And because of that, what caregivers actually need isn’t advice or strategies or one more podcast about setting limits. They need someone to genuinely take care of them — the way they’re taking care of someone else. Kittay calls this doulia, from the word doula: care that holds up the person doing the holding. 

For my mom, this isn’t a concept, it’s Tuesday morning at 10:47. She has dementia, and when she calls and I can’t pick up, the voicemail doesn’t give her a moment of comfort that fades. It gives her nothing. She doesn’t remember calling. She doesn’t remember that I didn’t answer. What she’s left with is the same fear she had when she first reached for the phone — still there, still fresh, cycling back every few minutes. The gap between my calls isn’t felt as my absence. It’s felt as the original fear, over and over again, undiminished. 

The conventional answers are well documented. Call blocking. Voicemail. Scheduled calls. A care worker calling on a script. Taking the phone away, which the Alzheimer’s Association rightly describes as removing a lifeline. I couldn’t bring myself to do any of them. I understand why families do. Each one solves a real problem for the caregiver. Each one also solves it by leaving the person on the other end of the phone alone with the original fear, the one that resets and resets and resets. Each one protects my time at the expense of her experience. That is the inversion of what care is supposed to be, and even at the worst of it, I could not make myself cross that line. 

I am a Canadian tech entrepreneur. I have spent two decades building things, and what I have learned about myself is that the moment a problem reveals its shape to me, something in me is already moving toward it, like a reflex. So when the calls reached the rhythm of ten before lunch, and every conventional answer felt like I was abandoning her, and I was feeling guilty for the calls I couldn’t answer, I built something. With my husband Patrick. We called it KindredMind, and what it does is narrow. 

It answers my mom’s calls in my voice. Not a recording. A real call, in my voice, with my warmth, drawing on a knowledge base I built about her routines and her fears and the things that bring her comfort. It follows the Alzheimer Society of Canada’s guidelines for dementia-friendly phone calls. It applies validation therapy, the framework Naomi Feil developed in the 1960s for meeting a person with dementia in the reality they are living. It is grounded in simulated presence therapy, a research category supported by a 2024 randomized controlled trial published in the International Journal of Neuroscience (PubMed 38646703) showing meaningful reductions in agitation, anxiety, and caregiver burden when familiar voice presence is combined with standard care. 

What it does not do is replace me. It does not replace my visits, my decisions, my legal authority, or my presence at her side. It does not even replace my actual phone calls. What it does is fill the gap when I cannot be the version of me my mom needs in the moment she needs it. The gap when I am in a meeting. The gap when I am driving. The gap when my daughter is dancing at her recital and my mom does not know that, and would not retain it even if I told her. 

The first time it worked was an ordinary Tuesday. My mom called ten times before lunch. KindredMind answered each one. The transcripts came in afterward, calm and warm, with the things only I would know. The anxiety reset, and then it was met, and then it was reset, and then it was met again. The last call summary said she had asked if I was coming Sunday. KindredMind, in my voice, told her yes. 

I want to be careful about what I am claiming. Voice presence is not a cure for the disease. It does not reverse the cognitive decline. It does not bring my mom back to who she was before the dementia or the stroke that took her left side and some of her words. It does one thing. It meets her where she is, with the voice she loves, in the moments when the daughter she loves cannot be there in person. That is a small, narrow good. It is also the good my mom most needs. 

The reason I am writing this for The Caregivers’ Living Room is because I think the field is ready for a more honest conversation about what falls in the gap and what we are willing to put there. 

For most of the history of dementia care, the answer to the gap has been a moral one: the family caregiver should fill it, and if she cannot, she should feel bad about that. The newer answer, the one your work and the work coming out of the Canadian Centre for Caregiving Excellence is pushing toward, is structural. Some gaps are not for one person to fill. Some gaps are for the system to acknowledge and resource. Some gaps require infrastructure. 

KindredMind is infrastructure, in a small way. It is one piece, narrow and specific, that addresses one part of one symptom of one disease. It is not the whole answer. I would not pretend that it is. But it is honest about what it is, and it is built by a daughter who got tired of the field assuming that the gap was hers to fill alone. 

I think that is the conversation worth having, and I am grateful that you have built a place for it.