Dementia is an energy thief. It steals energy from those living with the condition.

If you have dementia, you have limited energy. And tasks become more tiring. Maybe you can’t clean the whole house in a day. You are exhausted after cleaning the kitchen. Perhaps you don’t have the energy to cook a whole Thanksgiving dinner, but you can do the mashed potatoes.

As dementia progresses, your energy becomes even more limited. A 5 minute conversation might be enjoyable, but you are too tired to pay attention after 10 minutes. You can’t even watch a whole movie because your brain is too exhausted to follow the plot. And you get halfway through a task like putting away laundry when your brain and body quit on you.

That’s part of dementia. We don’t talk about it enough. We focus on memory loss rather than other symptoms that impact quality of life.

If you are a caregiver, you have to adjust to your loved one’s limited energy. You can’t pep talk someone into increasing their energy. When energy is gone, it’s gone—until the person has a chance to rest and renew. Maybe that means a nap. Or some quiet time looking out the window. Sometimes a person living with dementia needs a few days to replenish their energy. You can’t speed up that process; you have to be patient.

Here are some ideas to assist someone living with dementia with the fatigue they may experience:

— Break tasks into smaller parts. Instead of asking a person with dementia to vacuum the house, ask them to vacuum the living room. If they have energy when they are done with this, ask them to vacuum the hallway.

–Always have an exit plan. When you are out and about, be conscious of your loved one’s energy level. If you see it needs replenishment, leave the situation for a more restful place.

–Be realistic. Is a day at the state fair (especially the Iowa State Fair!) a realistic option for your loved one? Can Grandma really sit through the entire dance recital? Is your loud and wild family Christmas a great place for your loved one with dementia?

–Just say no. As a kid growing up in the War on Drugs era, we practiced saying no to drugs. I also think we should have practiced how to say no to social obligations. It’s okay if you and your loved one with dementia don’t go to a holiday party that you’ve gone to every year since the 90’s. It’s okay to skip the homecoming parade. If energy is limited, spend it on the stuff you really enjoy and leave the rest.

–Identify the times of day your loved one has the most energy. For most people living with dementia, that’s the morning. Plan activities in this time frame. If the grandkids come over, make a plan with an ending time. Put it on the schedule as 9-10:30am, or 11-11:30am, or whatever works. The trick is that the kids leave before the energy is gone.

One of our most valuable commodities in life is energy. A significant loss of energy requires a significant adjustment. The goal is to use the energy you have to do the things that are most important to you. And to let go of the things that aren’t as important.

Local(ish) friends: We will be doing a one hour Dementia Friends training at the Dementia Simulation House in Cedar Falls on Nov. 1 at 10:00 am. This is a training for anyone and everyone–community members, college students, high school students, professional caregivers, family caregivers, those in healthcare…did I mention it’s for anyone and everyone?

We have very limited spots because of the space we have available. If you’d like to join us, you can register here: https://calendly.com/—-248/dementia-friends-training-inperson?month=2023-11

Sometimes things work. And then they don’t work anymore.

Because people change.

It’s true outside of the world of dementia as well. Running used to work for me to relieve stress. But three back surgeries (and a spinal cord stimulator) later, running doesn’t work. It’s painful. I had to explore new strategies to keep my level of stress under control.

I tried outdoor cycling. It was great. I even entered a race. Then I crashed. Big time. I broke my humerus and tore my rotator cuff. I was in a sling for 12 weeks. Now I have anxiety about riding a bike outside. Let’s be honest–I even have anxiety when I see someone else riding a bike outside. Outdoor cycling worked—until it didn’t.

There are a lot of things that worked for me in my 20s and 30s that don’t work for me in my 40s. I’ve changed. My life has changed. My needs have changed. I am guessing you can think of what worked for you in the past but no longer works for you. Perhaps it’s yoga, organized religion, a certain medication, a food that no longer agrees with you. You adjust.

People with dementia change—sometimes slowly and sometimes more quickly. Their needs change.

Once you have a strategy that works, you feel good. But then your strategy doesn’t work anymore.

I recently talked to a caregiver who was excited because he’d come up with a strategy to help his wife find the bathroom. It was simple….he put up some signs with arrows. It worked.

For a few months.

And then it didn’t. Perhaps her brain was no longer able to interpret the visual information. Maybe she couldn’t read anymore.

But it didn’t work.

He needed a new strategy. He bought some Depends.

Stuff works until it doesn’t.

Putting mom’s clothes on the bed so that she can dress herself independently works. Until it doesn’t. Then you adjust. You find a new strategy. Perhaps you stay in the room and prompt her with the steps of putting on clothes. That works. And then it doesn’t. Eventually you have to physically help her put on her clothes.

Just when you think you have a problem solved, something changes, and you must search for a new solution. Dementia is like that. Life is like that.

Maybe Alexa is a great solution for your dad. Alexa can remind him to do basic tasks, like emptying the dishwasher and showering. But then he starts wondering why someone snuck into his house. He looks around and can’t find her. He calls the police. Alexa was a great solution until she wasn’t.

Life is about change. Life is about adjustment. Life is about rolling with the punches.

You try something. Maybe it works. You are excited. You are proud. And then it stops working. You didn’t do anything wrong. Your solution was great. But it’s effectiveness expired. Back to the drawing board. You scramble. You come up with something else. And maybe it works.

Such is life.

Such is dementia.

There’s a lot going on at the Dementia Simulation House.

We have some students back from last year. We have some new students on our team.

They are eager. They are smart. They voluntarily come in on Saturday mornings at 8am to do simulations. They are usually a step ahead of me.

But recently they told me something….they want more interaction with those living with dementia.

They work with students, community members, and family caregivers who come for simulations. They do trainings and presentations for businesses and organizations. But, overall, they don’t spend as much time as they’d like with people living with dementia.

We’re working on that.

But it’s something that resonates with me. We have education and support for caregivers. We offer very little for those living with dementia. (We are piloting a program to change this….details to come.)

Nationwide, it’s a problem. I was speaking to someone who works in the field for the state in a high-level position. He said we don’t do enough for people with dementia because we don’t know what to do with people with dementia.

Well, we need to figure it out. I recently met the husband of a woman in our dementia caregiver support group. He lives with dementia, and he voiced to me that he was jealous of wife. Through her group, she’d made friends and developed an outlet. He didn’t have anything similar.

He makes a fair point.

Please don’t get me wrong. I am certainly not saying that we do enough for caregivers; we do not. But we do even less for those living with dementia. We struggle to find counselors who will work with them. We know they often feel lonely and isolated, but we are challenged to find what works to help them connect with others.

We have Memory Cafes and similar programs. There are several wonderful programs in my local community. We are moving in the right direction. Perhaps just not quickly enough. Many people still have the idea that any effort in terms of prevention, intervention, or programming for those with dementia is a waste.

Will they even remember this?

Are they capable of doing this?

What if someone is having a bad day and is disruptive to the group?

Why would we put our resources toward people with a disease that will progress–no matter what we do?

Those aren’t good enough reasons. It’s time we step up our game.

Self-care. Blah. Blah. Blah.

I mean, self-care is great and all. If you want to take a bath and are able to do so, take a bath. If you have the time and money to get a massage, great. Eat a hot fudge sundae. Take a nap. Go to the movies with a friend. Exercise. Write in a journal. Pet a kitten.

All great things to do, of course, but I’m kind of over it.

If you are a caregiver or a person living with dementia, you may not be able to do these things. They take time. They take money. You have to have a quiet space. You have to have a focused mind. You have to have motivation.

Sometimes self-care requires something you don’t have.

And, let’s face it, your life isn’t hard because you aren’t practicing self-care. Your life is hard because dementia is hard. And that’s not your fault. You neglecting self-care isn’t really the root of the problem, is it?

When we preach self-care, we make it the responsibility of the person having a hard time to change things. In other words, it’s on you to make your life better.

There’s some truth to that, of course. In the end, you play a role in your own happiness. Yet, I don’t want to ignore the role that other factors, which may not be controllable, play.

You’ve been diagnosed with Alzheimer’s? Go take a bath.

Your husband has to move to a nursing home? Get a massage.

Sigh.

Maybe instead of focusing on self-care, we should focus on community supports. Maybe instead of telling you to go take a bath, I should work on providing more resources at diagnosis. Perhaps instead of assuming you have the money for a massage, I should work toward financial resources for caregivers.

People deserve to care for themselves, and they should absolutely do so. But we can’t use our suggestions of self-care as a substitute for making societal changes. I can’t tell you it’s your job to care for yourself when we continue to make policies that don’t care for you.

An overemphasis on self-care can have negative consequences. It places the burden of well-being on people living with dementia and their caregivers, which can lead to guilt when they can’t prioritize self-care due to life circumstances.

And sometimes, even when you are capable of self-care, it’s just not enough.

A friend of mine took her mother (who has dementia) bra shopping. She happened to tell me when she was leaving for the store. And she happened to call me to tell me about it upon her return. It seemed like she had been gone a really long time. Seems like the adventure was a marathon rather than a sprint.

Spoiler alert…bra shopping is not a dementia-friendly outing.

Bra shopping isn’t a walk in the park in general. I don’t remember anyone ever telling me they were excited to go bra shopping.

Are you a 34, a 38, a 42? Once you figure that out, what’s your cup size? There’s a good chance one or both of these numbers/letters has changed since the last time you did some serious bra shopping. And dementia often impacts a person’s weight, which impacts bra size.

There’s often a need to try on bras before you buy, which isn’t all that much fun. And perhaps less fun if you have dementia.

Bras aren’t easy to put on. I don’t know why we don’t talk about this more. About once I month I get strangely tangled in a bra. It surprises me that more women don’t choke themselves while putting on and taking off bras. I’ve probably wasted a few hours of my life trying to take off a sweaty sports bra after spin class.

Bras are different in terms of back and front closure, whether the straps cross, etc. It is not just people with dementia who might struggle with this, but for someone with dementia putting on a bra that might be a bit different than the last one could be quite frustrating.

Let’s talk about the fitting room. Much like most public restrooms, fitting rooms are likely gendered. This means that a man can’t assist a woman once she enters the fitting room.

A couple of years ago, I was at Target. An older gentleman was helping a woman (likely his partner) try on shirts over her shirt. I was looking at clothing in close proximity to them, and he apologized for being in the way (which they weren’t). He mentioned that it wasn’t a good idea for her to go into the fitting room without him. I didn’t ask why, but I assumed she had dementia. Trying on clothes over your clothes doesn’t really work, especially for bras. It’s not an accurate representation of size, and people will look at you like you are a weirdo.

Let’s talk about the hangers that bras are on at the store. Think about the way the straps are folded. It’s not easy to take them off the hanger, and it’s even harder to put them back on. The changes that occurs to a person’s senses as dementia progress could make this all but impossible.

And the mirrors…I have written about mirrors elsewhere on this blog…but mirrors can be confusing and anxiety-provoking for those living with dementia, especially when there are mirrors on multiple walls in a room. Who is that topless woman looking at me? Wait, is that me?

A man once told me that the most challenging aspects of his wife having dementia were deciding what to eat for dinner each night and buying undergarments for her. He said her inability to figure out how to put on those undergarments made him realize how much her dementia had progressed.

He shared that he had walked into their bedroom many times to see her tangled up in a bra, sometimes with the cups in the back rather than the front. And she resisted his help. I get it…it has to be difficult to realize that your husband needs to help you put on a bra. Oftentimes, he noticed the bra wasn’t quite right but allowed her to put on a shirt anyway. But then he realized she had forgotten that she needed to wear a bra altogether. He stressed about whether he should push the issue.

Sigh.

Living with dementia is a constant dance with the unexpected, isn’t it?

I don’t have all the answers. But sometimes talking about the challenges is helpful. Let’s keep doing that.

Hi, I’m tired.

Lately I do the bare minimum in pretty much all areas of my life. I am getting by, but I am doing nothing extra.

I am tired. I sleep a lot, and I want to sleep more. When I wake up, I am still tired.

My dad has been gone two months now. He left me a mess of a condo that I (along with my amazing team of three brave people who volunteered to take this on) am working on renovating to sell. One of most challenging issues was the resistant smell of cigarette smoke. The day we walked in and couldn’t smell cigarette smoke we almost cried tears of joy.

There’s some irony there since my dad (a lifelong smoker) died of respiratory failure and his wife died of lung cancer three weeks earlier.

The condo is over two hours away, so driving around to various hospitals and nursing homes to visit my dad has been replaced with trips to the condo.

I am not tired from working on the condo. Sure, it’s tiring, but it’s not why I’m tired.

I am also not tired from the various estate tasks I need to accomplish or the bills of my father that I am paying. (Side note: I am perplexed that his morphine in the last three days of his life was not covered by insurance. But morphine is cheap and I’m too tired to fight.)

It’s just that I’m tired.

I talk a lot about mental energy pennies. We all have limited mental energy pennies. You spend a small amount to watch a TV show or brush your teeth. It costs more to do a presentation, attend a work meeting, care for a loved one, or write a blog post. Hence, there was no blog last week. I was out of mental energy pennies.

We talk about this concept in terms of dementia. People living with dementia have decreasing mental energy as their disease progresses. However, the concept applies to all of us. And I find it’s particularly useful for caregivers.

I usually talk about mental energy pennies as a daily concept, as in “You wake up every morning and only have so many mental energy pennies.”

But I am now realizing that I was over-simplifying–because mental energy can roll over…as can a lack of mental energy.

Is it possible that I spent such a tremendous amount of mental energy in the spring that I borrowed against my summer mental energy? Maybe it’s like a credit card rather than pennies. Now I am paying back the mental energy I borrowed but with interest.

I am not telling you this for sympathy. I am telling you this because you can relate. Maybe you haven’t conceptualized it as mental energy pennies (or a mental energy VISA) but you get it.

I bought a book on productivity, but I haven’t been motivated enough to pick it up often. Yeah, I know. In the first couple of chapters, I was reminded of a trick….write down three tasks you will accomplish each day. Only three. I started by writing tasks like “clean house” but realized I needed to write more manageable tasks, “like clean bathroom.” Then I decided having a bathroom wasn’t that important and decided to take a nap.

It takes some mental energy to write a blog post, but I am realizing that it’s a good investment. I like to write. I like to share what I’ve written. Today I planted seven day lilies. It took some mental energy but the pennies I invested brought a return as I looked at the front of our house and thought, “Wow. That looks so much better.”

There are other ways I could spend my mental energy pennies that perhaps wouldn’t bring me a good return on my investment (like cleaning the bathroom). For now, I am choosing to opt out on those and respect that I am tired.

I won’t always be tired. I keep reminding myself that this is not the new normal. I will, gradually, feel like myself again.

If you are in the same boat, I see you. Dementia and caregiving steal mental energy pennies. If you have limited pennies, you get to choose where to spend them.

Maybe it’s not on having a clean bathroom (or maybe it is).

I could talk about nutrition, sleep quality, hydration, stress management, and exercise. There are strategies for increasing mental energy.

But sometimes it just takes time and patience to recover.

Tonight I spoke with a caregiver. His mother has dementia and lives in a local nursing home. Previously she had been in assisted living, but it was obvious she needed more care. And it’s obvious she is progressing.

He doesn’t know what to do.

I get it. Many of us are programmed to take action. We want to fix. We want to solve. And we take pride in fixing and solving.

But sometimes there is nothing to fix or solve.

You didn’t cause dementia, and you can’t cure it. If you are like me, you think you must be missing something. Maybe there’s some puzzle to solve and you haven’t cracked it yet. There has to be answer. Perhaps if you read more books. Or look at more Facebook pages (please don’t do this).

I want to tell you it’s okay to stop. It’s okay to stop and be. Just be. You don’t have to do. It’s fine to be.

Once someone said to me when I was a hospice volunteer, “Stop thinking you’re a human doing. You’re a human being.” And somehow that struck me and gave me permission to be and not do when I was with my hospice patients.

It is not giving up if you are a human being and focus on being with your loved one as dementia progresses. Sometimes all we can do is be. And being there matters. Loving someone doesn’t mean fixing them. There are situations that are not fixable. But you love people and you be with them. And that’s enough.

You are not a failure if dementia progresses. Let me say that again….you are not a failure if dementia progresses. It sounds obvious, right? But I have talked to many caregivers who feel guilty as dementia progresses. They feel like they are doing something wrong or perhaps they aren’t working hard enough.

Intellectually, caregivers know they aren’t in control of the progress of dementia. But, somehow, we think if we love someone enough, we can do something. Love doesn’t stop terminal disease.

Dementia progresses. We have our wins. We have our moments of joy. We sometimes win the day. We are there and we show our love and that makes a difference.

And dementia progresses.

I am not intending to be negative. I am intending to reassure caregivers that what you are doing is enough. You don’t have to power to stop or reverse dementia. I consider you a superhero. You do not disappoint me or anyone else by not being able to cure incurable diseases.

When you don’t know what else to do, just be. Being is enough.

Hey all! I am doing an online Q&A on Tuesday, August 1, at 7:00pm.

You will have an opportunity to use the chat function to submit questions during the presentation. Or you can just hang out and listen.

You can register here: REGISTER FOR Q & A

Spots are limited. You will received a Zoom link via email before the event.

I would love to see you!

How are you? I mean, really, how are you?

We often use “How are you?” as a greeting rather than a question to be answered.

You see a friend walking down the street. They say “Hi. How are you?” They don’t stop walking or even slow down. They obviously don’t want to hear how you are doing. You are expected to say something like, “Good, and you?” or “I’m hanging in there.”

You are not expected to talk about how you are doing. In fact, talking about how you are really doing in this context can be a social faux paus.

In a meeting a couple of weeks ago, we conversed about how few people stop to look a caregiver in the eye and ask, “How are you doing?” The emphasis is on the you.

I am not asking how your loved one with dementia is doing. Maybe I already asked that, or maybe I will ask that later, but for now…it’s about you. I’ve learned I need to stress that I am asking about the caregiver or they will respond only with information about their loved one. (Caregivers are like that, right?)

What are ways we can ask people how they are and let them know we really do want to know how they are?

A few ideas:

How are you, really?

Tell me how you’ve been since the last time we talked.

What’s going well for you now and what’s not going well?

How have you been feeling about (insert issue, i.e. John’s transition to the nursing home, your dad’s diagnosis, having to take early retirement)?

When my dad was ill, I realized that many people who asked how I was didn’t really care about how I was (at least at that moment). I started to distinguish the conversations and texts from those who were really asking from those who weren’t really asking–despite using the words, “How are you?”

Sometimes I would think someone was really asking how I was and start telling them, and they’d jump in with some feeling or experience that they thought was related. Perhaps they were trying to connect with me, but it told me that they weren’t ready and willing to listen to how I was doing.

Someone who wants to know how are you stops moving (literally), makes eye contact, and doesn’t interrupt with information about their own life. They don’t look at their phone. They act like you are the most important person in the world at that moment.

When you find these people, hold onto them. They aren’t fixing anything. They aren’t giving unsolicited advice. They want to know how you are really doing, and that’s important.

In the last few days of my Dad’s life, I got a text from a friend. She asked how I was doing. I don’t remember my response. Her follow-up question is something I am filing away for future use.

What do you need right now?

Hmmmm. Sleep came to my mind first. But my response was:

A half-diet half-regular fountain Coke from a gas station.

15 minutes later, she showed up in the reception area of the nursing home with my soda.

It was the best soda I had ever had.

Asking someone what they need right now is an open-ended question that can lead the respondent in a variety of directions.

What do you need right now? A soda. A counselor. Someone to let the dog out. Someone to talk to. Something to punch. A friend to stay with my loved one for a bit. A yoga class. Kinder nurses. More competent doctors. More compassion from my kids. All valid needs.

Maybe this is a need you can meet, and maybe it’s not. But either way, you get valuable information on where the person is at.

If I greet someone in passing, I try not to say, “Hi. How are you?” unless I have the desire and time to stop and listen to how they are doing.

Instead, I say, “Hi! Great to see you,” or “Hey. Hope you’re having a great day.”

(Although I will admit, I do feel rude not asking in return if the other person asks me first.)

My thought is that if I ask how someone is doing, I should be committed to listening to the answer rather than rushing off to a meeting or appointment.

If I ask someone in the grocery store how they are, I’d better have 10 minutes to stand in the freezer aisle and listen.

I’m not a fan of how we use “How are you?” as a greeting rather than a real question.