In addition to my full-time job, I sometimes do speaking engagements and family consultations.

I think differently than I used to about “helping” families impacted by dementia.

I used to think I was there to help them fix something.

In the past few years, I’ve come to realize that I can’t fix anything.

And dementia isn’t fixable.

I can support people with dementia and their families in living with joy, humor, and peace. I can suggest ways that families can cope with changes that are difficult. I can assure families that they didn’t cause dementia and they can’t fix it.

Sometimes people want to meet with me to discuss their loved one living with dementia and I decline the opportunity.

If I decline, it’s usually because I realize they are asking me to do something I cannot do. They want me to help them change their loved one into the person they were five years ago. They want to bring back the person that existed before dementia. And I can’t do it.

I have met with families who wanted me to give them daily bootcamp style schedules with structured activities and nutrition. They wanted to know what puzzles to buy and what supplements to order.

They wanted me to help them reverse dementia.

Dementia involves progressive brain cell death. Over time, the loss of these cells causes the brain to shrink and makes thinking, memory, and decision-making permanently harder.

There are now medications that may slow the progress of Alzheimer’s (but not all types of dementia). This breakthrough is incredible, and yet doesn’t bring back the person you knew 10 years ago.

I am honest about something that is hard. And I’ve learned that’s not what everyone is looking for.

Sometimes I doubt that I am helpful at all. I almost stopped doing consultations for a while because I felt like I was letting people down. Over time…I realized I was talking to people who were asking for something that I could not offer.

Dementia can be cruel. I wish I could make it less cruel, but I can’t.

I don’t try to soften that or work around it. What I can do is help families understand what is happening in the brain and how those changes show up in daily life. When hygiene becomes harder, when eating changes, when anger or anxiety surface, when communication breaks down — those shifts are not random. They are neurological.

I spend a lot of time helping people think through decisions. How do you tell extended family about a diagnosis? How do you manage expectations? What happens when siblings disagree? Is someone still safe at home? If staying home is possible, what needs to change in the environment to make that realistic?

I’m not Susie Sunshine, and this is hard stuff.

What I think I am able to do is help families understand that there can be joy found in all of the gray area and unpredictability.

You can love your person with dementia and be frustrated with them.

You can be honored to be their caregiver and also angry when they can’t follow instructions.

You can understand that it’s the dementia talking and still be mad when they are disagreeable.

Joy may show up in small and unexpected spaces. Do not hesitate to be delightful when something actually goes right.

Maybe you make a small change in your home that helps your loved one be more independent and successful. You get to celebrate that.

Perhaps your loved one with dementia starts laughing more. You aren’t sure what they’re laughing at or why, but they’re laughing. And you love it.

Maybe you realize that your person with dementia loves a certain TV show and is more than happy to watch it for hours as you work on housework and paying bills. It’s a win.

I guess that’s the hope that I offer.

There’s joy, humor, hope, life…and there are a few wins along the day. There’s also grief and loss. There are moments of frustration, sadness, anger, and guilt.

All of it exists together.