Every Wednesday, like clockwork, somewhere in the middle of the afternoon, she would get worried. She needed to get home. She needed to start dinner for her husband. He had died several years earlier, and she was already home, in a house her family had covered with signs that said this is your house. So Lori handed her a stack of towels and asked for help folding them. The towels were already folded. Lori had dumped them out so there would be something to do.
Lori Rizzo of Compassionate Crossings is my friend, and she is the person I call when I have a question about dementia. In this episode we say the hard things plainly. Dementia is terminal, and it is so much more than memory loss. We talk about what stigma and silence cost a family, why getting ahead of a diagnosis beats waiting for a crisis, the case for a dementia advance directive, and the grief caregivers carry and rarely say out loud.
How Lori came to dementia work
Lori told me the calling came first. It started with her own family: her mother's illness and death almost ten years ago, then her mother-in-law, then her father. Knowing a death was coming and walking through it with people she loved changed something in her. She describes the work as a vocation, from the Latin for "to call." At some point she restructured her finances and rerouted her life to answer it.
Before that, Lori spent her career in corporate leadership, mostly in learning and development. (I spent two decades in corporate training and consulting myself, so I recognized the path.) She carries that curiosity and communication right to the bedside. As a hospice volunteer and with her first doula clients, she kept running into dementia, so she took a long dementia-specific training and kept learning. One of her earliest clients was a woman living with Alzheimer's, and Lori spent every Wednesday with her, all day.
What Lori wishes people knew about dementia
First, it is not just memory loss. Memory changes may be an early sign for some people, especially with Alzheimer's, but dementia is a terminal illness. At some point it will cause a person's death. Alzheimer's is the most common form of dementia, but it is only one form.
Second, dementia is not a personal failure and it is not shameful. It is a medical condition. When families are too embarrassed or too frightened to talk about it, they delay the diagnosis and the support, and that costs them time to plan and time to talk with the person while the person can still say what they want. Lori knows a loving family that hasn't told friends, or even their religious leader, about the changes in their mom because they want to protect her from embarrassment. You can feel the love in that. But as Lori pointed out, we wouldn't do that to someone with heart disease or cancer.
Third, the person living with dementia is still there. They are still capable of connection, humor, and love. Lori said we tend to make people disappear before they are gone, with phrases like "she's losing it" or "he's in his own world." That's how shame and stigma take root.
Getting ahead of dementia instead of waiting for a crisis
When a family gets ahead of it, the first gift is the person's own voice, while they can still use it. Getting ahead starts with a diagnosis, which means noticing changes that feel off and sometimes advocating loudly with doctors who don't know your person the way you do. Lori was clear that she isn't a medical person, but a diagnosis can open the door to treatments that may help slow progression, with no promises. Knowing the specific type matters too, because caring for someone with Lewy body dementia looks different from caring for someone with Alzheimer's or frontotemporal dementia.
An early diagnosis also means getting support in place before anyone is drowning. I like to say dementia is a group activity, and Lori calls it a circle of care. Too often a caregiver is doing it alone, and the stress can make the caregiver sick too.
Brain health, a cognitive baseline, and the dementia advance directive
Lori wants all of us to talk about brain health the way we talk about cholesterol, colonoscopies, and mammograms. She pointed to the cognitive screening that is part of the Medicare annual wellness visit, which many people skip. Getting a baseline in your 60s is a simple, powerful thing to do, because when something feels off later, you have something to compare it to. She also explained anosognosia, a neurological condition in which a person truly doesn't know that something is happening to them.
Then the part I want to shout from the rooftops: the dementia-specific advance directive. A standard advance directive is built for medical emergencies, not for the long, gradual road of dementia. It doesn't tell your family how to care for you when you're frightened or confused or no longer recognize them. A dementia directive does. Lori has one. I don't know whether I'll ever need a feeding tube, and I've still decided about that. Why wouldn't I plan for dementia too? And remember, you can update an advance directive any time, as long as you have the capacity to do it.
Sundowning, folding towels, and prayer
Lori said dementia care is not instinctive. Nobody would hand you car keys without driving lessons, yet families take on dementia care every day with no training and no roadmap. How you speak, approach, and respond shapes whether the person feels calm or distressed.
That Wednesday afternoon worry was sundowning, a late afternoon and early evening agitation that is very common, though it doesn't happen to everyone. What helped was a consistent routine, natural sunlight in the room for as long as possible, and the right kind of presence. Lori didn't correct her or argue that her husband had died. She validated the worry and reassured her that she was safe, sometimes saying things like "he's not home from work yet." She was a homemaker, so folding towels let her feel useful. Another doula who cared for her thought to ask if she wanted to pray. She was Catholic, and when they prayed quietly together, her lips would move, and it often calmed her.
The grief caregivers carry in private
Caregivers are grieving someone who is still alive. The person is here, but not the same. Lori works with a memory cafe in her county where people living with dementia and their care partners come together for a social hour, and she hears spouses talk about the retirement plans that are gone now. They grieve their own future and their identity, and there is no ritual for it and no funeral.
Lori wants caregivers to know that grief is real and deserves to be named, along with the resentment, the anger, and the lost patience. It's okay to have those feelings. The work is not taking them out on the person, because it isn't their fault. Every caregiver I have ever worked with has told me, in a low, guilty voice, some version of "I lose patience" or "I want this to be over." You are not alone in that.
How to show up for a dementia caregiver, and hope that changes shape
Not everyone has a doula, so Lori asked the rest of us to step up for the friends, neighbors, and coworkers caring for someone with dementia. Listen. Run an errand. Be the person they can be honest with when it's awful. You can't fix it, and you don't have to. Presence, not perfection.
For the person in the thick of it, Lori said this: you're not failing. This is hard because it's hard. The fact that you're exhausted and still showing up is love. If you can no longer care for your person at home and need to find another place for them to live, that's okay, even if you once promised you wouldn't. You don't have to carry it quietly. Lori facilitates support groups for dementia caregivers through Daughterhood, and she sees how much relief people find in not being alone.
Hope can change shape along the way. We may no longer hope for a cure, but we can hope for moments of joy, and look for them, and create them. People living with dementia still feel love, and they can still feel our frustration, too. Lori shared that the way a person feels is one of the last things to change.
About Lori Rizzo
Lori Rizzo of Compassionate Crossings is an end-of-life doula, dementia specialist, and grief companion. She supports people when a serious illness is diagnosed, when dementia reshapes everything, and when death is close, offering steady guidance, education, and a calming presence. She is also a community lead for Dementia Friendly Montgomery County, a volunteer grassroots initiative working to change how communities understand, talk about, and show up for people living with dementia.
Compassionate Crossings · Lori's Daughterhood Circle Leader page · Daughterhood
In this episode
- 00:00 Why dementia is more than memory loss
- 01:34 The calling came first: Lori's slow path from corporate life into death work
- 03:59 How a career in learning, leadership, and communication carries into the work
- 06:18 How dementia became central to Lori's practice
- 08:15 Three things Lori wishes people knew
- 11:11 What stigma and silence cost a family
- 12:51 What becomes possible when you get ahead of it instead of waiting for a crisis
- 16:42 Brain health, cognitive baselines, and the case for a dementia advance directive
- 21:07 Dementia care is not instinctive, and nobody hands you a roadmap
- 23:51 Story time: sundowning, folding the towels, and prayer
- 27:42 The grief caregivers carry in private, and the guilt they rarely say out loud
- 30:47 How to show up for a caregiver: presence, not perfection
- 32:50 A message for the person in the thick of it, plus placement guilt and support groups
- 34:42 Hope that changes shape, and finding joy in what remains
- 36:13 Where to find Lori
Caring for someone near the end? You don't have to figure out the last days alone. Book a Guided Care Planning Call and we'll talk through what's ahead.
Feeling the pull to do this work? Pay attention to that. I teach it at Compass Doula Academy.
Listen: Spotify · Apple Podcasts · 39 minutes
If there's anything else you're dying to ask, let me know: christy@christybraun.com
