Tag Archives: life

Dementia and Hope and Grief and Joy and Loss

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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.

The People You Don’t See When You Picture Dementia

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What does dementia look like?

Not figuratively—but literally?

When you picture a person with dementia, who do you picture?

Typically, we think of frail old people, looking confused, completely dependent on others, living in nursing homes, unable to carry on a conversation.

We rely on stereotypes to decide what certain groups “look like,” and people living with dementia are no different.

You should know that 10% of those with dementia are under the age of 65. Only about 20% live in a nursing home, assisted living, or memory care at a given time.

Some are in the workplace. Many are serving our communities with purpose and living lives of meaning. Some people with dementia have depression, but others do not.

They are just as diverse as the rest of us.

I remember a holiday season about 25 years ago. We were visiting my grandmother. She was working at a liquor store. She came home from work on Christmas Eve and let us know that–for the first time–she had some gay customers at the liquor store.

My grandmother was open-minded. She was not at all bothered about her gay customers, but she was really convinced that this was the first time she had gay customers.

She had a picture in her mind of how gay people would appear, and apparently this was the first time anyone fit into the box. Statistically, it would have been virtually impossible that these were her first gay customers.

I’ve had people who are waiters in restaurants tell me that they’ve never waited on anyone living with dementia. At one point, I tried to convince the owner of a bookstore to make his business dementia friendly. He told me that no one with dementia had ever been to his bookstore.

And there was the time that I had a conversation with a manager at a hotel about ways to make travel more dementia friendly.

“It’s not like people with dementia actually travel. I’ve never seen one at this hotel,” he said.

We still lack understanding that there are people with dementia living in our communities–just doing their thing. They aren’t wearing special bracelets and they aren’t labeled with tattoos.

They are just people, like the rest of us.

My team is passionate about doing dementia education for those who work in residential senior care.

But it can’t end there.

We need communities to start understanding that people living with dementia are among their residents.

They’re not really unique or special. We should not patronize or underestimate them. A diagnosis does not erase a person’s values or humanity.

When we talk over them or assume incompetence, we create barriers that are as limiting (more limiting) than the condition itself.

I get frustrated with the “before and after” dementia narratives. Those stories reduce a person to a single decline arc and imply that everything meaningful existed only in the past–before the dementia. A more honest approach focuses on adaptation: what has changed, what remains, and what kinds of support are helpful.

That same thinking shows up in how we expect dementia to be visible and obvious. When we rely on decline-based narratives, we also start looking for a certain “look” to confirm our own expectations.

Dementia does not have a look.

The sooner we stop searching for visual markers and start assuming variability, the closer we get to communities that actually know how to include people living with dementia.

When the Holidays are Hard

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If you are in the midst of the holiday season and are impacted by dementia, I see you.

I know a lot of people don’t get that you might be having a difficult time. If you were impacted by cancer, they’d be more likely to check in.

But when it comes to dementia, they either don’t know what to say or (worse) don’t even think about you.

There’s nothing I can say to make that better.

If your holiday season has been a little bit rough and didn’t go as you’d hoped, I can’t make that better either.

Maybe your interactions with family and friends were strained. Or maybe the stress of the holidays exacerbated dementia symptoms. Perhaps the holidays made you think about just how far dementia has progressed in recent months.

The holidays can be disorienting for people living with dementia. Loud rooms, unfamiliar routines, expectations that may seem confusing—all of it can be overwhelming.

If you didn’t have a great holiday, it’s okay to admit that. People will ask about your holidays–and no matter how they were, we usually say something like, “They were good” and smile.

It doesn’t seem acceptable to say that the holidays were hard.

But sometimes the holidays are hard. They are hard for a lot of people. They can be hard for the dementia community.

For many families, the holidays aren’t just emotional difficult—they’re logistically exhausting. Dementia adds layers of planning and decision-making that no one else notices.

Sometimes the hardest part isn’t what happened this holiday, but what didn’t. Grandma didn’t buy presents. Dad didn’t make it to the family party. Your husband didn’t even think about putting up the tree.

Keep in mind that you can be grateful that someone is still here and still grieve what has been lost. Those things can exist at the same time.

And perhaps what you’re feeling isn’t just sadness about what has already changed. It’s grief for what you know is coming. Anticipatory grief.

Anticipatory grief can feel confusing, especially during the holidays, because from the outside everything may look intact. All the decorations are up. The table is set. Presents are opened.

But inside, you may be carrying the weight of noticing things others don’t:

  • A loved one who no longer follows the conversation
  • A tradition that feels overwhelming
  • A moment that should feel joyful, but instead feels heavy

And then you wonder if this is the last holiday for….something. Maybe it’s someone’s last holiday on earth. If it’s not, it could be the last year they live at home. It could be the last year they know it’s Christmas. It could be the last year they recognize the grandkids. Or the last year they can participate in making pie.

Anticipatory grief during the holidays is often invisible. There is no ritual for it. No clear language. No accepted way to say, This season hurts because I know what’s ahead.

So people smile. They say the holidays were fine. They move on.

But if the holidays felt heavier this year—not because something dramatic happened, but because something quietly shifted—you are not imagining that.

If this holiday season left you feeling tired, sad, or unsettled in ways you can’t quite explain, you’re not alone. Many people in the dementia community carry this grief quietly. You don’t have to minimize it.

Dementia doesn’t pause for the holidays. Sometimes the holidays demand more from people who already have little left to give.

If this season felt heavier, it doesn’t mean you failed. It means you are living in a reality that deserves more understanding than it gets.

I see you.

Pain and Joy and Depression and Anxiety and the Party

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Pain and joy can co-exist.

You’d think that intense pain means minimal joy, but that’s not always the case. We are complex beings, folks.

You can feel significant joy while feeling significant pain.

It’s not, “It was hard but it was good.”

It’s “It was hard and good.”

Life is bittersweet, right?

My dad died in May. He had schizophrenia and that made our relationship complicated. It’s Christmas, and my habit lately is to say I miss him but it’s a relief. I caught myself the other day. I miss him and it’s a relief. It’s not a contradiction.

Humans feel lots of things at once. It’s not like we process one feeling and send the next feeling to voicemail. You can’t put your feelings on silent. Sometimes they all ring at once.

You can celebrate and be sad. Every single one of us has stuff to celebrate and stuff to be sad about.

You can celebrate and be angry. You have every right to feel angry but (I mean, and) that doesn’t take away what you deserve to celebrate.

You can celebrate and bring your clinically depressed and anxious selves along for the party. I’ve done that a few times. It’s not like I don’t go to the party. I get all three of us dressed and ready. Maybe I even flat iron my hair and show up with a store-bought cake. Perhaps I don’t have a bad time.

I celebrate and I am depressed and I am on the verge of a panic attack. It can be two or more things and none of them changes the others.

Here’s to you if you are sitting around in the aftermath of a celebration trying to process. If you can’t quite put your finger on what you are feeling, that’s probably because everything you are feeling is tossed around like a giant salad. You don’t feel tomatoes or bacon or croutons–but tomatoes and bacon and croutons create something unique, and we feel uncomfortable because it’s unrecognizable to us and we don’t know if it is what we are supposed to feel.

It’s never all good and it’s never all bad. Nothing in life is all good or all bad, after all. And it’s going to change soon anyway.

And there is no “supposed to.” You aren’t supposed to feel a certain way. You’re not even supposed to do a certain thing. Let go of that. You feel like you feel and then you do what you do. And all of it is okay.

Merry. Happy.

On Christmas Day we got all three of our dogs to wear pajamas.