Here I am. It’s me. I’m back.

I needed a break. I tried to prioritize.

I put some stuff on the back burner. I just couldn’t do it all anymore. You know, increased responsibilities in my career as a professor. More community dementia education. More simulations. More students to oversee. More indoor cycling classes to teach at studio where I work. A new senior dog adopted from San Diego (yes, I do live in Iowa and his name is Ernest and we adore him).

So the blog dropped off my radar for a few months. One less thing to do, right? One less weekly assignment on my plate. More time for teaching. Researching. Putting away laundry. Watching college basketball. Petting our new dog.

The ironic thing is that the less I’ve written the more I’ve thought about what I need to write. I’ve talked with people living with dementia. (The world seems to forget that they are actual human beings sometimes.) I’ve talked with family caregivers. I’ve talked with professional caregivers. I’ve talked to community stakeholders. I’ve talked–because I struggle to shut up even when I need to–but I’ve also done some listening.

And…I state it here for God and my husband and everyone to read…listening is not my strength.

The more I listen, the more I realize I need to listen. The more connections I make, the more connections I realize I need to make. There’s always more to do, isn’t there?

I might have considered for a tiny itty bitty split second that my blog work was done here, but it’s not.

A few caregivers mentioned that at some point my blog had lifted them up when they were low or had given them a unique insights. Flattery will get you everywhere, right? But it’s more than that. It’s that people are getting something here that they aren’t getting elsewhere. And that makes me sad.

I can’t do everything, but I can write.

So I will. I have a few blog post series topics and webinar presentations up my sleeve. (Examples: Dementia and sex, dementia and food, dementia and firearms, dementia and depression–I could go on…oh, and I will….dementia and employment, dementia and pets, dementia and exercise, dementia and friendship, dementia and planning.)

I am thinking about gaps….What do we need to talk about? What are we missing? Where can I start a conversation? What do people living with dementia need and want? What do their caregivers need and want? What policies do professionals need to have in place to support these needs and wants? How do we make that happen?

But I am overwhelmed. There’s always one more obstacle to getting something done. I don’t know if I should work for big changes on a small level or small changes on a big level. There are days I wonder if I am making a difference.

And I’ve made the mistake in the past of being all or nothing. Either I will cure all dementias or do nothing. Well…my chemical engineer dad will tell you I didn’t do well enough in chemistry to cure all dementias, and I am certainly not doing nothing.

So, for today, let me assure that wherever you are and whatever you are feeling, you are not alone. Having dementia can be isolating. Being a caregiver can be lonely.

Isn’t it ironic that so many people going through similar things can feel so alone?

I can’t fix dementia but I want you to feel supported and not so alone. No matter what your challenge is today, I am rooting for you. Be kind to yourself and do something you love doing.

Until next week.

Hi friends!

I am still on a little bit of a hiatus…life is crazy…fill you in later.

I did want to let you know that we just released the February schedule for the Dementia Simulation House in Cedar Falls, Iowa!

If you live close or enjoy a good road trip, feel free to reserve a spot: https://calendly.com/—-248/dementia-simulation-house-experience?month=2023-02&date=2023-02-01

You can learn more about the house here: https://csbs.uni.edu/dementia-simulation-house

If you have questions, email dementia.simulation@uni.edu.

We’d love to see you!

Hi all!

Fair warning…these are our last opportunities to come visit the Dementia Simulation House in 2022!

Ever thought about what it would be like to prepare for the holidays as a person living with dementia?

We’d love to see ya: https://calendly.com/—-248/dementia-simulation-house-homefortheholidays?month=2022-12&date=2022-12-12

What is the one thing that caregivers should keep in mind? Yes, I am back with one more one thing,

The one thing that caregivers should keep in mind is that you will mess up.

I’ve written about this before.

You do something, and you will mess up. There are minor failures, moderate failures, and sometimes you just have a giant crash-and-burn failure.

You aren’t a massive failure of course. You can massively fail repeatedly and not be a failure.

In fact, I can think of about 3 things I have already failed on today…I said the wrong thing to a student. She interpreted my words in a way that I didn’t intend, and I think I hurt her self-confidence (but I rephrased and recovered). I also spilled a whole mug of coffee on my jeans at the Dementia Simulation House. Then I realized there was a typo on my syllabus—although that’s actually a mistake I made in August.

Messing up and failing are part of life. As my high school basketball coach said to us, “If you’re not making mistakes, you are probably not doing much of anything.”

Caregiving can be a lot of things. It can be rewarding and joyful. Of course, it can be challenging and exhausting. And all those feelings might hit at the same time. It’s a lot. It’s just a lot.

Your stress level makes it more likely that you will make mistakes. As you may have heard me say in presentations, “When anxiety goes up, cognition goes down.”

I usually say that in reference to individuals living with dementia, but it’s true for all of us, including dementia caregivers.

You are stressed. You don’t sleep a lot. Your brain is tired and not top-notch. You mess up more. That’s the way life works.

Maybe you made a poor judgment call. You took Dad to the emergency room when, in the end, the doctor said he was just a bit constipated. Dad was embarrassed and anxious about being there. When you got home, he was agitated and aggressive. You are kicking yourself for taking him to the emergency room, and he’s mad at you because he has to pay the bill.

We do the best we can in the moment. We might get impatient and snap at someone who has dementia. It’s hard when someone asks the same question 11 times in 2 minutes. Then you feel guilty.

Take a deep breath move on.

We mess up at our jobs and while doing our hobbies. We mess up doing tasks like laundry (throwing in clothes with colors might bleed into other clothing; that’s my specialty). We mess up in our social relationships. We say the wrong thing. We make the wrong decision. We mess up.

Caregiving is no difference. You will mess up. And you will move on.

You weren’t looking and your diabetic husband who has Alzheimer’s ate an entire cake. It was a cake you made for an upcoming bridal shower. Now he’s sick and you have to make another cake. (This happened recently to someone I know, and she ended up buying a cake but passing it off as homemade, which makes her my kind of woman.)

You invite some friends over. They bring their grandkids. Your mom used to love these kids, but now it’s just too much for her. She’s getting irritable and they won’t leave. You want to suggest it’s time for them to go, but you feel that’s rude, so you let them hang out until 9 although Mom usually goes to bed at 8. She struggles the next day. She’s exhausted. And you think about how it’s your fault.

I know a woman who made mistake by jumping out of the car to pump gas. Her husband has Frontotemporal dementia and recently gave up his driver’s license. As they pulled up by the pump, she assumed she’d be the one to get gas because now she was the driver, and he wasn’t moving so fast most days. He jumped out of the car and started yelling at her. It was his job to pump gas. How dare she think he was so disabled that he couldn’t pump gas, like he had done his entire life. He didn’t talk to her the rest of the day.

When I talk to caregivers, they often express guilt or shame over something that they believe they messed up.

Is it any different from parenting in this way? Every parent messes up. (I am not a parent but I think most parents would agree with that, right?). There are not perfect parents.

There are no perfect caregivers.

Shake it off and move on.

Hi all…

Yes, you read correctly. Sex.

We’ve been doing dementia caregiver support groups.

And we’ve been talking about sex.

But we want to learn more.

I asked one of our interns, Olivia, to do a deep dive and learn about different perspectives on dementia sex. There’s not enough out there, and it’s such a multi-faceted topic.

Issues with consent.

Challenges with privacy in assisted livings and nursing homes.

Struggling with a partner who is too persistent (for your taste) about sex after diagnosis.

Whatever it is….we want to hear about it. We want to learn from you.

If you have experiences or thoughts that you would be willing to share with us, please email them to dementia.simulation@uni.edu.

Everything you share with us is completely confidential and for the purpose of gaining more perspective on this topic.

I’m back again with the one thing caregivers should know (except, yeah, this is the 3rd one thing). But here goes…

The One Thing…

…the one thing caregivers should keep in mind…

…is that you can’t fix dementia.

It sounds simple, right. Dementia is not something you can cure. It is, by definition, progressive.

As a caregiver, you can’t stop the progress.

I know some caregivers who are superheroes. They can name the nine medications their loved one is on (and correctly pronounce them) and tell you the dosages of each off the top of their head. They can get by on minimal sleep. They can juggle various medical appointments and make sure their loved one is in the right place at the right time. They can, at midnight, put out the clothes their loved one will wear in the morning. They accompany their loved ones to the bathroom; maybe they even change Depends.

It’s a lot. They break down sometimes, but they are amazing. Loving. Kind. Committed. Loyal. I could go on…

But they can’t fix dementia.

Love doesn’t fix dementia. (Repeat that to yourself.)

If you see dementia progression in your loved one, you are not doing something wrong. This is how the disease works. No matter how many puzzles you’ve put together, no matter how many books you’ve read to her, no matter the healthy diet you put her on.

Dementia progresses.

It’s hard to watch, I know. But please know that you are not responsible when dementia progresses. Dementia can be a beast. And you can’t do anything about that. Do not beat yourself up when dementia progresses. That what dementia does. It gets worse. Sometimes it progresses slowly and sometimes it progresses quickly, but you are on dementia’s timeline.

That’s not to say what you do doesn’t matter. It absolutely matters. You work hard to give your loved one the best possible quality of life. That doesn’t mean dementia goes away. It means that we do the best we can to exist and work within the life dementia allows us.

We live our best lives and try to give the same to our loved ones with dementia. That’s the best we’ve got. We don’t have reliable treatment or medication to cure dementia. We just have care. And care matters. Love matters.

You do the best you can to love and live through dementia.

And that’s enough. It’s all we can do, and it’s enough.

I don’t usually do stuff like this, but how about a little exercise for caregivers? Fill in the blank: I can’t fix dementia but I can __________.

What can you do?

Love? Be there? Give the person dignity and respect? Work to communicate in a dementia-friendly way?

Now, you make one up.

I can’t fix dementia but I can ________________.

And that’s enough.

This is a continuation from last week….

What is the one thing that dementia caregivers should always keep in mind?

Of course, it’s the 2nd one thing, so it’s more than one thing. But hang with me here.

The one thing that caregivers should always keep in mind is to have an exit plan.

Yes, an exit plan.

I mean this in a few different ways.

Holidays. Parties. Gatherings. Church services. Social outings.

Maybe Grandma can’t stay at family Thanksgiving from 11am to 5pm. Maybe she’s done at 12. Make it possible for her to leave at 12. Have an exit plan.

Perhaps the church service is about 10 minutes too long for your husband with dementia. Sit close to the door. Duck out. Have an exit plan.

Warn friends that, although you’d love to come for dinner, it’s likely you can’t stay for dessert. Have an exit plan.

Social interaction is great until it isn’t great. And then you’re done.

In another way…have an exit plan as a care partner. Maybe it’s a physical exit plan. You visit your mom and her repeated questions make are unbearable for you. When you get to a point where you are frustrated and being less than kind, leave. Have an exit plan.

But I get it. Not every caregiver has the option to leave and come back later. Is it an option to call a friend or family member to cover for you? Is it an option to find a chore to do in another room? Is it an option to take a bath? Is it an option to walk into another room and take 10 deep breaths? Have an exit plan.

I know it’s not always that simple, but when you are stressed about an upcoming situation, ask yourself what your exit strategy is. And don’t second guess yourself when it’s time to put it into action.

No long goodbyes to a dozen relatives. Just slip out the backdoor.

I was asked a final question as I ended a presentation. It was this:

What is one thing that all caregivers should always keep in mind?

I didn’t have a clear and concise answer….because I couldn’t come up with one thing.

So here we go.

Over the next few weeks, I will focus on a different one thing each week. Obviously, I know that defeats the purpose of the one thing. But I don’t care.

This week: The one thing caregivers should always keep in mind is that you have to focus on the support.

I said focus on the support. There will be people who you think should be supportive who aren’t supportive. Some friends will disappear. Some family members will be ignorant and critical. Not everyone is going to get it.

But some people will. They might not be the people you expect. Perhaps they are people you didn’t know six months or a year ago. They may be new in your life, or maybe they are people who you’ve known for a while but haven’t been close to.

There might not be that many. Be prepared for that. But stop talking about those who aren’t supportive but should be. Don’t waste your time or mental energy.

Those people who show up? Focus on them…even if they are showing up in small ways.

The brother who lives across the country but makes an effort to call you every Sunday so you can vent.

The sister of your sister-in-law’s cousin’s brother’s uncle….or something like that…who you never knew well but always checks in with you to see how things are going.

The grocery store clerk who takes a moment to talk to your loved one with dementia even though she knows the response won’t make sense.

The neighbor who sends over dinner once a week. (It doesn’t matter if it’s too spicy or too bland or something you’d never really eat.)

The church congregation who says they are praying for you.

The friend who texts you before they go to the store to see if you need anything.

Focus on them.

It doesn’t help to focus on the sister who you never hear from, the step-daughter who visits and spends most of her time out on the town, the friends you never see anymore….stop focusing on the people who aren’t supportive.

Right now, they are not your people. Let it go.

The people who are supportive even in the smallest of ways–they are your people. They are your tribe. They are your team.

It takes a village to raise a child. Maybe it also takes a village to support you on this dementia adventure. Stop focusing on those people who aren’t in your village.

Focus on those who are in your village.

Focus on the support.

One thing about being at the Dementia Simulation House…we hear a lot of stories from caregivers. I am fortunate to have a job that allows me to learn each day.

I thought I’d share a few interesting things I’ve heard recently. I often get this question…. “Is this normal for someone with dementia?”

I haven’t figured out a great way to respond to this question. There is really no normal from person to person. Every person with dementia is unique with unique symptoms.

Recently a woman confided in me that her husband, who has dementia, wants to have sex with her at the assisted living where he now lives. He won’t leave her alone about it and can’t be diverted. She visits less because she doesn’t know how to respond.

A man told me that his wife stopped eating. He would put a plate of food in front of her, and he couldn’t draw her attention to it. He figured out a few days later that she would eat–if he turned the TV off. She couldn’t focus on TV and eating at the same time.

A woman with dementia was convinced that her daughter was a dentist. Anytime the daughter would visit, her mom would yell, “You aren’t getting me to open my mouth!” and chase her out of the room. The daughter had no idea of anything in her mom’s past that might be related to this perception. In fact, her mom never minded going to the dentist.

I met with someone whose mother has younger-onset Alzheimer’s. Her mom calls her repeatedly throughout the work day. She always answers because she fears it could be an emergency, but her mom forgets that she is the one who initiated the phone call. She usually says something like, “Well, if you have nothing to say, I don’t know why you called,” and hangs up. Recently her mom sent her a text and told her to stop calling her because she was wasting her time.

Are these things normal?

Yes. No. I don’t know.

Dementia itself isn’t normal. It’s not a normal part of aging.

Among those who live with dementia, there really isn’t a normal. Keep in mind that dementia means cognitive decline. It means the brain is changing. The symptoms that come along with that depend on quite a few factors: type of dementia, part of the brain impacted, personal background, level of progression, to name a few.

There are stages, but they are so unpredictable that I sometimes wonder if they are helpful to families at all.

Sometimes, if nothing is really normal, everything becomes normal.

People with dementia were unique individuals before they become people with dementia. They remain unique individuals with unique disease progression.

As we say, if you’ve met one person with dementia, you’ve met one person with dementia.