My experiences at the Dementia Simulation house so far been fun, interesting, hard, hilarious, sad, hopeful, and everything else. Someone asked me the other day what has been the most challenging.

Regret.

I realized that it’s witnessing the onset of regret in loved ones of those live or lived with dementia.

I had no idea what it is really like for her.

I wish I knew the right way to approach him when he was alive.

I would have done things differently if I knew dementia was like this.

I don’t know why I couldn’t have been more patient.

If their loved one is alive, we help them process what they’ve learned and can use to improve the life of their loved one no matter their stage of dementia. We can’t change the past, but we can change the future, right? This is about education, and the education we (along with other support services) provide often comes too late in the process.

If their loved one is no longer alive, sigh.

We go down a path of reminding them that we do the best we can with what we know in the moment. And we encourage them to be kind to themselves.

We see that regret set for quite a few of our participants, and we tell them not to beat themselves up. I think that’d be placing the responsibility in the wrong place.

We are at fault. By we, I don’t me “you and me.” When I say we, I mean myself and other professionals in my field. I guess I also mean politicians (although I am, to be clear, not any type of politician). We have to find a way to do better. We need to figure out how we can effectively educate those with dementia and their caregivers early in the process. We need to find a way to connect families and individuals with resources at every single diagnosis.

If you are a dementia caregiver who was provided support and resources when your loved one was diagnosed, go buy a lotto ticket. You are part of a fortunate few.

We are trying. Really we are. We are limited by funding, as is everyone and everything in life. But we are trying to do a better job of making life just a little bit better for those with dementia and their caregivers.

Because it bothers me when we see people realize that they could have done better if they’d have known more.

Maybe some of this regret is preventable.

Last week, a caregiver told me something that she considered so horrible that she could only say it in a whisper.

She told me about her husband and his Alzheimer’s journey. He had just moved from a memory care community to a nursing home. She wasn’t pleased with the care he was receiving. Their kids lived across the country and had stopped visiting. He spent most of his waking time agitated and riddled with anxiety. In the past, her presence had decreased the anxiety, but now nothing seemed to control it–except a high dose of a sedative that knocked him out and made him a “zombie.”

She had a sense of dread every time she pulled into the parking lot of the nursing home. She made a deal with herself…30 minutes minimum, but she’d feel better if she stayed 40. She hated seeing how much he was struggling. She felt sick to her stomach before she even walked into the building. She’d lost 25 pounds in the last 6 months.

She asked me how much longer it would be. It took me a moment to process this. She wanted an estimation of how much longer he’d be alive.

“I want him to go soon,” she said in a whisper before I had a chance to answer.

Then she looked around–just to make sure no one else heard.

For lack of a better response, I said “I understand” while putting my hand on her shoulder.

To be fair, I wasn’t sure I could understand. I wasn’t in her shoes…and what I really wanted to convey was that I wasn’t judging.

Then she went into defense mode.

She said that she and her husband had a decade of happy years after he starting showing dementia symptoms. They traveled. They volunteered. And then they couldn’t.

She told me she hadn’t heard his laugh in a year. They hadn’t had a real conversation in at last 18 months.

And she was ready for it to be over. She was sure he was as well.

But it felt awful to say it out loud.

It’s not a great place to be (wishing for your husband to pass away), but she felt he was at peace with his God. She felt it was time.

Although she felt this way, she said to me several times, “I must sound like a horrible person”

No, she didn’t. She didn’t sound like a horrible person, and she certainly wasn’t a horrible person.

Maybe you have a loved one in the end stage of dementia. Maybe you feel this way. Or, more likely, you feel this way sometimes but at other times don’t know how you’ll deal with it when they die. You can’t anticipate what emotions will wash over you when they’re gone. Really gone.

Loving someone with dementia is intense. The feelings that come along with it are intense. Sometimes you want it to be over. Sometimes you never want it to be over. You want to let go but you want to hang on. As a spouse of a man with dementia recently said to me, I want to freeze time and also fast forward time.

And all of that is okay.

It’s raw and it’s real and it’s okay.

If you have dementia or are a care partner to someone with dementia, people tell you a lot of things about dementia.

Perhaps some of those people are educated about dementia. Maybe some of their input is helpful. If so, wonderful.

More likely than not, many of these people are not educated about dementia. I’m sure that a lot of their input is not helpful.

Some of these people are acquaintances, co-workers, or friends. Some of these people are family. Sometimes you can nod politely and end these conversations. You can walk away, literally, from some people. Sometimes it’s more complicated than that.

I want to reassure that it’s okay to disregard advice that doesn’t work for you, even if that advice is from someone who is well-meaning and close to you. I don’t recommend a right hook or a left jab, but a simply “thanks for the info” and change of subject might be effective.

People are generally trying to help. They want to be supportive. They want to make your life easier. But sometimes they don’t know what the heck they are talking about.

When your brother-in-law says, “I read on that internet that Alzheimer’s, x, y, and z,” be skeptical. I hate to break it to you but not everything on the internet (especially about Alzheimer’s and related dementias) is accurate. In fact, a quick search on “cures for dementia” drives me to drink. (By the way, there are no cures for dementia–although I await some of you to contact me to start an argument about this.)

Be patient with these people. They are struggling to find something to say or a way to support you. They just got lost somewhere along the way.

There’s also the sibling that flies in once a year from the East Coast or the West Coast or wherever they live. They spend 48 hours with your mom and think she’s doing just fine. They can’t figure out what you’re worried about and why you’d mention a nursing home. Mom, of course, is functioning more effectively than she has in months. She even made a cherry pie. (In the dementia field, there are a lot of terms for this– like “rising to the occasion” or “showtiming”– and it’s not a rare phenomenon.)

Your sibling becomes critical of all you are doing to care for your mom. They don’t understand why you won’t let her drive to her hair appointments. They make an underhanded comment about how you might be exaggerating what’s going on. They ignore the effort you are putting in so that she can stay in her own home.

Then they fly back home. You suggest maybe your mom could stay with them for a few weeks, just to give you a break. But they have work and the kids and the kids have ballgames and they worry that the new puppy will annoy Mom. Also…someone is re-doing the kitchen so company isn’t really a possibility now.

Life continues. They text you once a week to ask how she is. You give brief and non-detailed responses, since long and detailed responses would just lead to them telling you about all the things you are doing wrong.

Let’s be blunt here.

Your sibling is clueless. I don’t care if they are a lawyer or a professor or a CEO or got all A’s in college…right here and right now, they are clueless.

Don’t get me wrong. There are long distance caregivers who are valuable and supportive.

But that sibling who shows up seemingly just to criticize every decision you make? They are clueless.

Of course, it’s not always a sibling. It could be any family member or close friend.

I give you permission to punch them. Just kidding. I really don’t recommend you punch them…because, in the end, I am pretty sure it’s not going to make you feel better and then they will have another thing to criticize you for–aggression.

BUT….I think it’s okay if you aren’t always the nicest. I think it’s okay if you point out that you spend 12 hours a day with your mom and they only check in occasionally. I even think it’s okay for you ask for some money if you are spending what you earn on your mom’s care and they are oblivious to that. Make a dang spreadsheet and show that that dementia care ain’t cheap.

But I need to tell you something about clueless people. You can sit down and give them some knowledge. You can explain where you are at and what you know. You can logically explain the choices you have made and the choices you plan to make. You can even show them legit educational sources on the internet and tell them that essential oils don’t cure dementia.

Will they hear this?

Probably not.

So explain once and then stop wasting your time. You have limited mental energy and this is not where you should be spending it.

You can always learn more about dementia. You can always seek out new perspectives and ideas. You can always become a better care partner.

But maybe your brother-in-law isn’t the best guy to educate you even though he once watched a tik-tok about dementia.

Here’s what I learned recently.

Pickleball is important.

If you don’t know what pickleball is, it’s a combination of tennis, ping-pong, and badminton. You can probably get a better explanation if you google it.

But it our mid-sized Midwestern town, it’s a thing. It’s a big thing. Perhaps it’s a big thing in your area as well. It’s played at our local rec centers, and it can get pretty cut-throat, or so I am told.

The typical pickleball athlete, from what I know, isn’t in their 20s or 30s, but rather in their 50s, 60s, 70s, and even 80s.

I’ve heard more about it recently as I’ve gotten to know some local women who care for their husbands with dementia. I have spoken to some who have done the dementia simulation at the house. I’ve zoomed or talked on the phone with others.

And it often comes up.

They tell me that they play pickleball. They don’t play once a week. It’s typically 5 or so days a week. I’d like to say it’s just for fun–that they don’t care if they win. But they do.

A couple weeks ago a woman in her 80s told me about how she regularly kicks the butt of much younger pickleball players. I want to be her in 40 years.

Why am I telling you this?

These women have spouses with dementia. Some of their husbands are in memory care. Some of them must pay for someone to stay at home with their partner when they play pickleball. Others are comfortable leaving their partners at home when they play.

When I’ve talked to these women, pickleball glides into the conversation naturally–because it’s part of their lives, and an important part of their lives.

If I could give one piece of advice to these women it would be this: Keep playing pickleball.

Okay, so maybe it doesn’t have to be pickleball. Maybe it’s an art class. Perhaps it’s riding a bike or taking a class at a local community college. Maybe it’s volunteering at the local food bank.

Caregivers….keep doing your thing. What do you enjoy doing? What keeps you healthy mentally and physically? What gives your life meaning? What is fun for you?

That’s your thing.

If it’s pickleball, keep playing.

And I know that’s not easy. What if you can’t leave your loved one at home alone any more? And you can’t afford to pay someone to come in and care for them? What if you were up all night because your partner was having hallucinations? What if you don’t have the energy because you are too stressed to eat?

I know there are challenges. I know you might have to make changes. But make it happen.

You are a better care partner when you do the things that make you the person that you are. Don’t let go of those hobbies.

Maybe you have to do them less often. Maybe you do them in a different way. Perhaps you do a YouTube yoga class rather than going to the studio. Maybe you visit with a book club over Zoom rather than meeting in person. Still…make it happen. Let go of the guilt of making it a priority.

You are still you.

Don’t let go of you.

And if that means being a pickleball butt-kicker, I am behind you 100%.

Today we have a special guest blogger. It’s Drew Dotson, who was a visiting scholar at the University of Northern Iowa this spring. While in town, she had the opportunity to do the dementia simulation house. Here is her review!

Dementia Simulation House: “It was good!”

“How was it?” people asked after learning I’d visited the University of Northern Iowa’s Dementia Simulation House. 

I enthusiastically responded, “It was good!”

What followed were looks of confusion, as though I meant I had a good time experiencing what it’s like living with dementia. However, when I described the simulation as “good,” I meant that it was interesting, eye-opening, and impactful. From my point of view, any opportunity that gives you better insight into another person’s struggle is meaningful — and that’s precisely what the Dementia Simulation House accomplishes.

I won’t get into too much detail about the actual simulation experience because it’s best if participants are unsure what to expect. The experience takes place in what’s designated your house, and it involves some general household upkeep. Therefore, it’s not as though you’re merely sitting around, existing while experiencing certain symptoms of dementia. Instead, you’re actually living a snapshot of daily life with dementia — a much more realistic approach.

During my session, four participants went through the simulation at the same time. After our experience ended, we all sat down together for a post-simulation debrief. This was a revelation in and of itself because I’d been so engrossed in the simulation that I forgot I wasn’t on my own — maybe similar to feelings of isolation among those living with dementia. Though each participant had a unique experience, one theme was common throughout: the anxiety associated with the loss of control.

Interestingly, each of the session’s participants had previously spent time with a family member living with dementia. For me, that person was my paternal grandmother. We all agreed that the dementia simulation provided insight we wished we’d had as we navigated the unfamiliar territory with our loved ones. I wanted to rewind time and have my entire family participate in the simulation so we could have better supported my grandmother as her dementia progressed. We did the best we could at the time, but I now feel better prepared for future interactions with people living with dementia.  

The Dementia Simulation House taught me more than I could ever learn reading or watching videos. Why? Because it made me feel something. Information on dementia is helpful and gives us insight into what we can expect. However, the simulation enabled me to personally experience emotions that might be common among those living with dementia. As a result, I exited the house with an increased level of empathy and compassion for those living with dementia — things that make me a kinder person.

That’s why I answered, “It was good!”

Drew uses her experience with chronic illness, widowhood, and humor to inspire and uplift others through her writing. You can read more about Drew and enjoy her work at drewdotson.com. She has also written a memoir that is in the early stages of the publishing process.

I spoke to a woman recently who lost her husband to frontotemporal dementia. She shared something with me that many people don’t recognize as related to dementia…weight GAIN.

Yes, gain. Weight loss is quite common as well, so when I talk about dementia and weight, I usually say dementia can be related to a change in weight.

Frontotemporal dementia is a type of dementia that impacts impulse control. When she mentioned that one of the first “odd” things she noticed was that he was eating more, I wasn’t surprised it was a sign of frontotemporal dementia. When she told told me how much weight he gained, I was surprised.

He gained over 100 pounds in 9 months. She said that the weight gain didn’t seem to bother him, although he was becoming more irritable overall. She tried to help…they went on Weight Watchers together, but it turned into a fight. He was not about to start counting points or carbs or calories or anything else for that matter. She estimated he was eating 7000-10,000 calories a day. (She did point out that she lost 23 pounds on Weight Watchers but pointed out that some of that was probably just stress.)

She refused to keep junk food in the house. He started ordering pizza and buying snacks at the gas station. She’d find empty packages of family-sized Oreos in his car.

She forced him to go to the doctor a few times. They didn’t suspect dementia; they shrugged and said he was gaining weight because he was eating too much. The doctor said he’d die if he kept eating like that. He shrugged. He even bullied his wife into stopping at Arby’s on the way home so he could get a shake.

The diagnosis came after he had gained well over 100 pounds. What finally made doctors suspect dementia had nothing to do with weight; he had pretty much stopped talking by that point. And when he did talk, he wasn’t saying anything nice.

His wife told me she felt dumb that she had never considered that weight gain could be part of dementia. But why would she? We think dementia equals memory loss, and if there’s no memory loss, we don’t think dementia.

Many people tell me that their loved one’s dementia started with something other than memory loss. Weight changes. Irritability. Depression. Anxiety. Issues with balance. Sensory changes. Personality changes. Obsessive behavior.

Later on, they look back and realize that’s when dementia started, and they had no idea. They didn’t know this was dementia.

100 pounds in 9 months. It could be something else, but it could be dementia.

I write a lot about the challenges of dementia caregivers…their high rates of clinical depression and anxiety…their loneliness…their daily stressors. This post doesn’t change anything I’ve written in the past, but I do want to acknowledge something.

Some caregivers are doing okay. Some caregivers are happy. Some caregivers are enjoying life and thriving.

That doesn’t mean every day is great. But is every day really great for anyone?

When I talk to caregivers, I make an effort to ask how they are doing–not just as a caregiver but as a person.

Sometimes I am probably more invasive than I should be when I ask, but I want to know.

How are YOU?

Caregivers are a diverse gang. Some are doing okay, and some aren’t. In all honesty, most are okay sometimes and not okay at other times. Others are trying to redefine what “okay” even means in their life at this point.

But then there are some that report that they are….happy. Or even very happy. Their world has changed, and they’ve accepted that, and they are living.

They write poetry. They participate in zoom book clubs. They go to tai chi. They play pickleball and ride their bikes around town. They paint and do crafts and enjoy working on household projects. Or, like a 90 year old caregiving friend of mine, they crochet potholders for friends.

Please don’t accuse me of naivety. I know that many caregivers don’t have the time or mental energy to do these things. I know that some caregivers can pay for weekly in-home respite care, and others cannot. An assisted living that specializes in memory care is an option for some, but not for others. Some caregivers are more privileged. I get that.

It’s easier to be a caregiver when you aren’t worried about finances. Just like any other stage of life, more money means more options.

And that helps.

Other things help, too.

Social support–sometimes from family. Or perhaps from others if family isn’t around or isn’t helpful. Maybe they make friends with the other wives whose spouses are in memory care.

With the opening of the dementia simulation house, I have gotten to visit with more caregivers, particularly individuals caring for their spouses.

And I have learned a lot.

This spring, a man who cares for his wife who has dementia said to me, “It sucks, but it’s happening. And I’m not unhappy. I am still a happy person.”

Sometimes caregivers tell me what they enjoy doing. Cycling. Going to dinner with friends. Watching movies. Oh, and my 80-ish year old friend who still likes to kick some butt at pickleball. I love hearing them talk about something that is not dementia. Even more, I love hearing them get excited about something.

A woman recently told me that her husband’s dementia wasn’t in the plan, but life was still good.

Why am I telling you this?

I write a lot about struggles of caregiving, and there is no shortage of struggle. Caregiving often negatively impacts the health of the caregiver. Rates of depression and anxiety are high, and we don’t provide enough resources and supports for caregivers.

But…if you are entering this journey…I want you to know that it’s possible to be happy as a dementia caregiver. I talk to caregivers who tell me that life isn’t what they expected, know that dementia can be a beast, and somehow in spite of it all find a sense of acceptance.

And even happiness.

A blessing of having a few days of bed rest due to back pain is that I got caught up on Grey’s Anatomy and This is Us.

Both of these shows have used Alzheimer’s as major story lines.

Today I am focusing on This is Us, which has portrayed Alzheimer’s in a more realistic way than Grey’s Anatomy (and the movie The Notebook…don’t get my started on the Notebook).

If you don’t watch This is Us, the matriarch of the family, Rebecca Pearson, has Alzheimer’s, and she passed away in last week’s episode. Was it a perfect portrayal of Alzheimer’s? Of course not. But it was pretty dang good. The writers did their homework.

One aspect of their story that should be noted is that they are a family of privilege at the point when Rebecca is diagnosed. They are able to move Rebecca and her husband into a beautiful home that was built at the cost of their son, who is a famous actor. She seems to have access to top-notch medical care. All three of Rebecca’s children visit frequently. The cost of travel is never mentioned, and their jobs appear to be flexible enough to accommodate these trips.

They hire a caregiver who seems to be present most of the time. In the end, the son who is an actor and his wife are able to stop working to move in with Rebecca and care for her.

No story line is going to represent all families and individuals living with dementia. And there are families who have the money and privilege to negotiate Alzheimer’s in the way that the Pearsons did.

But are most families able to negotiate dementia with this level of money and privilege?

Nah.

Here is what’s left out.

–Struggling to get into see a neurologist and get an accurate diagnosis

–Trying to find a memory care community that is affordable and close enough for family to visit

–Telling a loved one with dementia that it is time for them to move to a nursing home

–Filing the complicated paperwork to apply for Medicaid when your loved one is out of money to pay for nursing home care

–Considering whether or not hiring an in-home caregiver is a financial option and finding the “right fit”

–Discussing whether it’s affordable to visit a parent with dementia across the country

–Struggling to take time off work and talking to human resources about FMLA in order to visit a parent with dementia

This list is not all-inclusive. I am certain that, if you have dementia or have a loved one with dementia, you could add many more.

And this is not to fault the producers and writers of This is Us. They did well.

It’s just to point out that the Pearson were protected from some of the struggles of dementia due to their status and money.

Will I be tuning in Tuesday night for the finale?

Absolutely.

Q: What is the biggest risk factor for dementia?

A: Age.

The chance of a person having dementia increases as they age.

But it is NOT just old people who have dementia.

It’s people in their 50’s and early 60’s. I even know a few who were diagnosed in their 40’s, and one who was diagnosed at age 38.

Are there specific challenges to having dementia when you are younger?

Yep.

Recently a young woman came through the dementia simulation. She was the daughter of a woman who had dementia in her early 50’s. She showed me a recent picture of her mom.

I wouldn’t say her mom looked like a woman in her early 50’s. In fact, she looked younger. Maybe 45-ish. Her blonde hair was cut into an adorable shoulder-length bob, and she was wearing hip glasses. In the photo, she was out at restaurant with family and looked to be enjoying a colorful mixed drink.

“This is the problem,” her daughter told me. “She doesn’t look like she has dementia.”

Which brings me to this question….what does dementia look like?

What this woman means, of course, is that people have a picture of dementia in their head. And when people with dementia don’t fit this picture, they struggle to accept that a person could actually have dementia.

They think family members are exaggerating the person’s symptoms. They think maybe the person is just going through a rough time or intentionally being difficult. The situation is so incongruent with what they think dementia is that they create an alternative explanation.

Health care providers do this, too. It’s hard to get a correct diagnosis when you’re younger. The misdiagnoses can be numerous–depression, anxiety, restless leg syndrome, ALS, attention-deficit disorder, obsessive-compulsive disorder, menopause/hormonal imbalance, medication side effects…shall I go on?

My favorite (yeah, that’s sarcasm) is the “mid-life crisis” diagnosis. A woman I know who sought out help for what I would consider classic dementia symptoms was told by her doctor that she was going through a “mid-life crisis.” When symptoms got worse, she went back and was told she probably needed a counselor and some hormone therapy. Oh, and yoga. Things would probably get better if she did some yoga.

A man once told me that his wife, who was 50 years old with younger-onset Alzheimer’s, was often assumed to be drunk, high, or just plain weird. If he mentioned she had dementia, people seemed doubtful. Some would even tell him that he shouldn’t jump to conclusions or be so negative.

He got so frustrated that he hesitated to take her out in the community. At one point, she confronted him about being embarrassed of her.

We need to flip the script on what people think dementia is….we need people to know this isn’t just about old people.

We need people to understand that there is no specific way that dementia looks.

I was going to write a blog post tonight, but it’s past 9:00pm and I’m still at the Dementia Simulation House…. I talk a lot about mental energy, and I just don’t have any left tonight.

Instead, I am leaving you with this video about our house. Credit goes to Paul Pease, a senior at the University of Northern Iowa, who produced this video for us:

An Inside Look at UNI’s Dementia Simulation House