I’m not writing a blog this week.

I guess I kind of am because you are reading this.

But my brain is tired.

I talk a lot about mental energy and mental fatigue among those living with dementia. Someone with dementia has limited mental energy, and they should get to decide how to spend it.

My favorite analogy is mental energy pennies. I talk about it so much that I think my team rolls their eyes.

When someone is out of pennies, they withdraw or maybe get irritable.

That’s not just true of people living with dementia. It’s also true of their care partners. It’s true of 40-something college professors who run dementia simulation houses. It’s true of all of us.

My mental energy pennies are not as limited as someone who has dementia, but they are limited all the same.

The weekend has been crazy. Two dementia simulations on Friday night. A fun (but long) day on Saturday at my friend Kevin’s Run to Remember to raise awareness and funds for those who live with dementia. And a really great Dementia Friendly Organization training today at a local church. (We love making faith-based communities dementia friendly.)

It wasn’t a weekend off but it was a weekend doing things I love to do. And I now realize that the combination of events this weekend (although all super-positive events) has stolen most of my mental energy pennies.

Here’s how I plan to spend my last ones tonight. My friend Amy and I are going shopping at Dick’s Sporting Goods and then to grab dinner. My brain is tired, so I will buy things I don’t need because I am too exhausted to remind myself why I don’t need things. I will eat unhealthy fried food–because when my brain is tired I don’t have the energy to consider what might be healthy.

Signing off immediately to preserve mental energy pennies.

A friend of mine who has a husband with dementia asked me a question yesterday….

How do I continue to be a loving wife?

Her husband can no longer hold a conversation. Sometimes he thinks she is his daughter. He’s living in a facility.

She’s backing off a bit on her visits–only going once a day. She’s in great physical shape and even plays pickleball. She has kids and grandkids to visit.

But life is changing.

I have a PhD in Human Development and Family Studies, and I even teach a course titled Family Services. But I am not a counselor. And I’m not an expert on marriage. I struggled to respond to her question.

How do I continue to be a loving wife?

After a bit of thought, I realized that maybe what it means to be a loving wife changes.

Or, more generally, what it means to be a loving partner isn’t always the same throughout the lifespan.

I’ve been married 15 years. I have a wonderful husband. How he loves me has changed over the last two or three years. I used to run a few half marathons a year. Now, due to chronic nerve pain in my back, I can’t walk more than about 1/8 of a mile without pain. (I can ride a bike–but this summer I crashed my bike and am still recovering from a fracture and torn up shoulder.)

My back limits how much stuff I can do around the house. He has to do more. He does it without complaint.

I had three back surgeries in 2021. I now have a permanent spinal cord stimulator in my back. I have no idea how many times my husband has driven me to Mayo Clinic. In fact, he canceled his own knee surgery (yes, we are a hot mess, aren’t we?) so that I could get in to have one of my back surgeries. My pain and limitations have changed our relationship.

If you had asked me when I got married about love….I’m not sure I would have said that love means compensating for your partner when she can’t do chores and driving her to Mayo over a dozen times in a year.

So…being a loving partner might mean something different as you progress through life.

If your partner has dementia—

Your relationship changes. It’s futile to fight this. You will be more successful if you accept those changes. Perhaps you will adjust to these changes and be a loving partner in ways you never would have pictured.

Being a loving partner may mean placing your partner in a nursing home or memory care facility. (This is important; please remember this one.)

Being a loving partner may mean not arguing if your partner thinks you are someone else.

Being a loving partner may mean leaving family gatherings early so they don’t get overwhelmed.

Being a loving partner may mean keeping your conversations shorter because you understand that their brain tires quickly.

Being a loving partner may mean letting them eat cookies for dinner because that’s all that sounds good.

Maybe being a loving partner to someone with dementia means meeting your loved one where they are. And perhaps that’s true for all of us.

When we love people, we meet them where they are.

Hey Caregivers–

I think the world of you, and I have so much confidence in your ability to give care, but let me say this.

You are going to mess this up.

Yeah, I said what I said.

You won’t be a failure at caregiving but you are going to fail.

You will say the wrong thing. You will make the wrong choice. You will do something and later realize it was a mistake. You are going to have some wins, but you’re also going to have some losses.

Maybe you move the furniture and your loved one with dementia freaks out. Perhaps you say something that upsets them for an entire day. Sometimes you respond impatiently when you are answering the question for the 35th time before 10 a.m. Or a trip to watch a parade downtown turns out to be less pleasant than expected because it’s just too much.

A woman I know was cooking and had to use the restroom. When she came back, her husband with Alzheimer’s was pulling a casserole dish out of the oven without a potholder.

Another caregiver told me she once gave her spouse the dog’s medication. She couldn’t get ahold of his doctor, but she called the vet. He was fine, but she was horrified she made this mistake.

Caregiving isn’t the type of position you can quit. You can write a letter of resignation but there’s no one to accept it.

Maybe you messed up. You have to keep going.

Caregiving can be a lot. It’s mentally exhausting, anxiety-provoking, and sleep-depriving. (Is sleep-depriving an actual term or did I just make it up?)

Of course you mess up. Of course you make mistakes.

And it’s okay.

Let it go. Move on.

You weren’t a perfect child/spouse/family member before, and you certainly aren’t going to be one now that dementia is in the mix.

Keep doing your imperfect best.

I am a real-life person. I live in Cedar Falls, Iowa. I have a husband, three cats, and two dogs. One of my dogs just started wearing a belly band…he’s 17. I teach about four classes a week at an indoor cycling studio. If you come to my class, you’ll realize quickly that I’m not known for giving adequate recovery between intervals. I am a college professor and run our Dementia Simulation House. I teach Family Relationships, Psych of Aging, and Families, Alzheimer’s, and Related Dementias. I oversee interns who continually impress me as they transition to the professional world. I currently have a broke humerus (insert joke here) after crashing my bike this summer, and I had three back surgeries in 2021. I am obsessed with our Roomba. (Actually we have three Roombas.) I watch the Bachelorette every week with my husband and friends, and I love the musical Hairspray. It’s in town this week. I am seeing it Tuesday and Wednesday night. My nickname (thanks to my friend Drew) is “Full Throttle.” I will let you guess why.

But enough about me.

Why am I talking about me anyway?

Because I am reminding you that I am real person who sits down at her laptop every Sunday–sometimes Saturday if she’s ambitious–and write a blog that’s related to dementia.

I need to tell you something. I’ve stopped reading your comments.

I had to do that for my mental health.

I used to post something and sit anxiously at the computer, waiting for the reactions of my followers.

I would guess the feedback I get is 98% positive. Please don’t think I am having a pity party here. I have about 27,000 blog subscribers. Someone is going to hate something I write each week. I didn’t have this problem when my mom, my husband, one of my grade school teachers, and 6 friends read my blog.

But when someone makes a negative comment, it is often pretty negative.

I am. Mean. Ignorant. Uncaring. Too positive. Too negative. Uneducated. A bitch. An asshole. A liar. I am sure I am missing something here…

I shouldn’t care. I told myself for a few years that I just needed to develop a thicker skin. That I was being a baby by getting upset. That I should have more self-confidence.

But I’d get a mean comment (and I am not referring to something constructive) and ruminate on it all day.

Some guy from a small town in Oklahoma once made a comment that I should consider taking a college class on dementia so I could be more accurate in what I wrote. I carried that one around for a few days. I didn’t lose a whole night’s sleep, but maybe a few hours. Now I think it’s funny. (I should have responded that I wanted to take a college course on dementia but couldn’t find one in my area that I didn’t teach.)

So I stopped.

I just stopped reading the comments.

But I am just confused. I read stuff online all the time that isn’t a fit. It’s not helpful to me. It’s not what I’m looking for. It doesn’t resonate with me. Or I’m just not impressed.

You know what I do?

I move along.

I don’t spend my time trying to convince the author that they are a bad person.

I just move along.

And I encourage you to do that if my blog isn’t helpful for you. People are in difference spaces and have different needs. Maybe I don’t fit where you are at. Maybe my style doesn’t work for you. It’s fine. Move along.

This is the advice I give individuals and families living with dementia.

If it’s not helpful, move along. People will give you lots of advice about dementia. Much of it unsolicited.

By the way, essential oils don’t cure dementia. Not do any supplements you can buy at CVS, Walmart, or Walgreens.

People may judge how you approach caregiving. That’s not helpful. Move along.

You may follow people on social media who make negative comments about those living with dementia. Move along.

You may have friends who fail to be supportive, or — even worse –are critical or dismissive of you. Move along.

Someone I know recently moved along from her church. She loved her church, but it wasn’t dementia friendly and going to services was stressful for her. She moved along….to a different church with services streamed online.

In my life, I feel like I haven’t moved along as quickly as I might have in certain situations. I didn’t want to hurt a relationship. I didn’t want to be assertive. I had already put too much time into something. But I’m not sure I’ve ever regretted moving along.

When something doesn’t work, it’s okay to let it go. If my blog doesn’t work for you, don’t spend your time telling me I’m horrible. Spend your time finding something else to read that works for you.

It’s okay.

No hard feelings.

I was recently at a nursing home to do a dementia training. As I walked down a hallway, I passed a woman in a wheelchair. Her wheelchair was being pushed by an employee. The employee seemed to have a sense of urgency and the speed at which she was pushing the wheelchair seemed excessive.

“Wow, you’re really moving,” I said.

“I don’t know where I am going but I am really going there, aren’t I?” she said. I laughed.

“Sounds like my life lately,” I said, without much thought.

On the way home, I thought more about her comment, and I realized that it really was a pretty accurate representative of my work life.

Creating the dementia simulation house has been quite a journey. It was never my goal to have a dementia simulation house. In fact, the possibility that we could have a dementia simulation house had never crossed my mind. I was working with my very supportive dean and department head to find a space that would be appropriate for dementia simulation.

And then someone said, “What about this house?”

It’s not on campus, but it’s owned by the university. It’s been married student housing. It’s been a rental. It’s hosted its share of house parties.

(It is not uncommon for someone to come to do the simulation, step into the house, and say, “Oh, I’ve been to a party here.”)

I fell in love with this very ordinary house.

So we had a dementia simulation house. I didn’t know where this house would take us, but I was excited for the journey.

I had no idea if anyone would be interested in coming. I set up an online booking system. And people booked. And more people booked. And then people complained that we were full and they couldn’t book.

My amazing team fell into place. I didn’t seek them out. They just kinda showed up. And they are absolutely the best.

My original teammate on this project was Megan Zimmerman, the Dementia Friendly Iowa Coordinator. Then Dr. Eran Hanke, a professor in the mental health counseling program, stepped forward and took an interest in the project. Both of them brought skills and knowledge that I didn’t have.

We have two student interns. They are both Gerontology majors. I remember telling one of them, “I feel like you’re my right hand,” because of how much I depend on them. Then in July I crashed my bike and broke my right arm. So that became literally true. (I am still in a sling for another week or two.)

Working with these women has been incredibly rewarding and really fun. We laugh a lot. Interesting things happen at the house….and we improv our way through them.

Somehow, we were in USA Today, the BCC, and MSN.

This is not what I planned. I just thought it would be cool to do some dementia simulations, and this amazing environment and team showed up to make this the incredible journey it has been.

We don’t know where we are going but we are really going there, aren’t we?

Let’s get rid of the shame and the guilt.

Your loved one lives in a nursing home. They need extra care and you aren’t equipped to provide it.

And you made a difficult decision. You didn’t just drop them off at the door. You visit as frequently as possible. Perhaps you know, at some level, it was the choice you had to make.

But still. You feel shame. You feel guilt. You feel like a failure as spouse or adult child.

Let go of the shame. Let go of the guilt. You aren’t a failure.

You are just a human being doing the best that you can.

If you have a loved one with dementia, there may be a time when a nursing home is your best option. Is it a great option? Perhaps not. But is there a better choice?

Many of us have homes that are not equipped for caregiving someone who has mobility issues. Most of us can’t quit our job for someone who needs full-time care. And home care is an expensive option that comes with its own challenges.

And some of us aren’t equipped physically or emotionally to provide in home care.

Sometimes people jokingly threaten that they will put their parents in a nursing home –because we see it as a punishment.

If you don’t do what I like, you’re going to a home.

But it’s not a punishment.

The need for nursing homes is an effect of our society. In societies where women typically are not employed, there is less need for nursing homes. Those caregiving responsibilities are generally given to women–who may be already caring for several children.

But this America. And it’s 2022.

80% of people living with dementia reside at home in the community, whether that be with their spouse, their children, alone, or with friends. Generally, most of the dementia journey is not spent in a nursing home. It is spent in the community.

For some individuals, it can work for someone with dementia to live at home as the disease progresses into end stage. For many others, it isn’t a possibility.

But joking about punishing loved ones by putting them in a nursing home does a disservice to all those who have had to make that decision.

We don’t put people in nursing homes because we hate them.

Sometimes we run out of other options.

A women once told me that she took her husband to a follow-up visit with a neurologist. They were planning to stop at Target on the way home to grab a few things, including toothpaste.

At the neurologist, they received life-changing news that she did not expect. Her husband, the doctor strongly suspected, had frontotemporal dementia. She didn’t know much about it but the doctor gave her a few resources, which she found more frightening than supportive.

As they left the office, she looked at her husband and asked, “Should we still stop at Target?”

He responded, “We still need toothpaste, don’t we?”

She stopped for a moment and realized that people with frontotemporal dementia and their spouses should probably still pursue some level of oral hygiene.

And so they stopped at Target.

As they checked out with their toothpaste and a couple of other items, the woman kept thinking—this cashier has no idea this is the worst day of my life.

It’s something I, perhaps oddly, have thought about a lot the past couple years. I was referred to Mayo Clinic in Rochester for nerve pain in my back in late 2020. After three surgeries and a multitude of appointments, I feel like a regular here.

I say “here” because I am in Rochester right now for an appointment in the morning.

When I am hustling around (and sometimes killing time) at Mayo, I look around and see others doing the same. And I often think–some of these people are having the worst day of their lives.

I’m not sure which ones they are, of course, but I probably cross the path of at least 500 patients and family members/friends when I am there for an appointment. What percentage of those individuals are having the worst day of their lives?

I remember a several years ago I was having a day that I would’ve called one of the worst days on my life…or at least top (bottom?) ten. I pulled up at a stoplight and glanced to the right. I made eye contact with the guy in the truck next to me. Much like the woman in Target, I realized that he had no idea what space I was in. He would’ve assumed this was a normal day for me.

He gave me a quick but pleasant smile…like you do sometimes when you make awkward eye contact. I remember thinking–how can you smile at me on a day like today?

In my job, I regularly interact with people living with dementia and their families. I know dementia can be pretty rough, obviously. And I never know when I interact with people what type of day they are having. People living with dementia have good days. Bad days. In-between days. Their families might feel like they are on a rollercoaster, but roller coasters go up as well as down, right?

I don’t think “Are you having the worst day of your life?” is a great way to start a conversation.

When a conversation begins, I just have to be aware that it might be a possibility.

But, really, I should be aware that’s a possibility with everyone I interact with.

A guest blog by Mary Fogarty

When my husband, who has dementia, gets agitated, and the weather’s not too bad, we go out looking for swans. Unless he’s also feeling what the social workers might call “unpleasantly confused,” and I might call something less polite, depending on who I’m with. Since I’m with you, let me just say that, at such times, all I want to do is send him back to the factory for a new model. But when his personal weather is only agitated, and not storming with thunder and lightning, we go out. 

In February, we saw a family of swans on a small local lake, and later in the month, we saw some on  the river. We haven’t seen any since, but suggesting that we go look for them takes less time, and is a  whole lot safer, than saying, “Let’s go drive around until you’re distracted enough to forget the ugly  mood you’re in.” Or “Let’s go drive around until you forget that you want to go home.”  

It would probably also work to say, “Let’s go looking for home.” But I’m afraid he might find one.  

The home he wants to go to is even more elusive than the swans. He doesn’t seem to mean any of the houses I’ve known him to live in, or any of the ones he grew up in. He seems to mean a house in a neighborhood he recognizes, furnished with things he recognizes, inhabited by people he recognizes —  a place that is just around the corner, and always out of reach. 

So we look for swans, which not only can be found on occasion, but also, when you do find them, look pretty much like they did the last time you found them. White, with feathers, a swan-like neck, and a black beak. Not a lot of change going on with the appearance of swans. Unlike the appearance of  people or houses or, for that matter, wives. Looking for them — the swans, not the wives — is a way into nature, a place that calms my husband’s anxiety and improves his mood. People wax poetic about the healing power of nature, but in spite of that, it works. Maybe it mutes the brain’s clamor.  

I’ve got to admit, I’m pretty clueless about what goes on inside my husband’s head. So I speculate.  Like one does with the family pet — well, like I do with the family pet. Maybe you have more sense.  Right now the family pet is a cat. It used to be two dogs and a cat, providing even more opportunity for erroneous speculation. I can’t understand what my cat is telling me most of the time, except for a few really, really obvious things, like when he stands over his food bowl, yowling. It’s much the same with my husband, only his food plate’s not on the floor and he doesn’t have to stand over it. Oh, and unlike the cat, he’s usually demanding less food, not more. 

Still, I try to understand what he’s thinking and feeling. Maybe nature is calming because it provides him with something more interesting to think about than his own confusion. Or maybe nature says, “Shut up and listen,” and he does. I kind of like this second explanation, so I think I’ll stick with it.  When you do shut up and listen, something nice happens, even if you don’t have dementia, and even when there aren’t any swans. 

So what do we do when it’s too bad to go out, either because of his personal weather or the stuff outside? We stay in and stream nature shows. Hopefully, ones without a lot of ripping of throats and such. The less bloodthirsty ones are usually pretty good. So is “Seinfeld.” Neither is as effective as being in nature. But, on the plus side, you almost never have to put up with people waxing poetic about the healing power of shows.