Mental Energy and Dementia: How Do You Choose to Spend Your Limited and Precious Mental Energy?

Mental energy. Why are we not talking more about mental energy in relation to dementia?

A few days ago I listened to an insightful and unexpectedly funny panel of individuals living with dementia talk about their experiences. The entire conference was great, but no other speakers could really compete with the panelists.

As they sat on a stage in front of a decent-sized audience, they talked about the importance of their advocacy on behalf of people living with dementia. A few mentioned that their advocacy work gave them purpose. All of them described events that they had taken part in and, in many cases, organized. They talked about the public speaking that they do. One man described how he and his wife put together a fundraiser on the fly…and it was overwhelming successful.

Then one of the panelists mentioned that it comes with a cost.

It’s tiring.

Individuals with dementia have limited mental energy (which leads to limited physical energy, by the way).

Let’s say I have 100 units of mental energy. (Actually, I know of no metric of mental energy and I’m making this up as I go.) I can put a lot of mental energy into a few things, or I can put a little mental energy into a lot of things. It’s my choice.

But when my mental energy is gone, it’s gone. And you’ve all been there. A long day at work. The day you took your SATs or GREs or LSATs or had to do a test or evaluation for your job. Just a day when nothing went quite right and you had to spend your whole day fixing stuff.

You’re irritable. You’re frustrated. Maybe you have an outburst. Maybe you withdraw. Maybe you just close your eyes are go to sleep at 7:30pm.

As dementia progresses, those units (you know, the ones I made up) decrease. If a person with dementia used to get 100 units a day, they may get 90, 80, 70….but it’s not consistent by the day. One day you may have more units, and the next day your units are depleted.

Oh, and you can often roll over those units. You can rest one day to have a high energy day the next day because maybe your grandkids are coming over. You can also try to steal from the next day. Maybe today’s the 4th of July and you are committed to going to four cookouts and then the fireworks. If you can’t move tomorrow, you don’t care. We have to be careful with that strategy because sometimes we intend to steal a tiny bit from the next day but end up decimating the whole week’s energy units. (These energy units are starting to sound a bit like Weight Watcher points, aren’t they?)

There are other principles for these energy units. You may know some vampires who steal your mental energy. Maybe a co-worker. Or a family member. Or a really disagreeable checker at your local Target. When you try to steal your energy back from the vampires, you end up wasting additional mental energy. You can and should do your best to protect your mental energy from these vampires.

I will add that I am a work in progress when it comes to not spending mental energy on vampires. Today I let a disagreeable Delta gate agent steal about 27 of my mental energy units in the process of getting a seat assignment.

I spent a lot of time thinking about the panelists living with dementia and their commitment to educating us. And I was grateful to them for using their limited energy in this way. When your energy units become limited for any reason, how you use them needs to become even more intentional. And these individuals chose to spend their mental energy educating folks like me.

One of the principles I cling to in this field is that people living with dementia and their care partners have the right to navigate this disease however they choose.

If you want to spend your precious and limited energy on a cross country camping trip, it’s yours to spend. If you want to spend your precious and limited energy on continuing to work at your job, it’s yours to spend. If you want to spend your precious and limited energy on cooking and keeping your house clean, it’s yours to spend.

Just be intentional. And when you find you’re running out of mental energy too often, it’s time to prioritize.

I realize that I’m not just talking about people living with dementia. I’m looking at everyone….including family care partners who often forget that they can’t do everything, be everywhere, and fix everything.

We all have precious and limited energy. When we can’t increase that energy, our only option is to be wise in how we spend it.

I have a challenge for you this week. When you realize something is taking up too much of your mental energy….when you realize that the cost is too high…just walk away. Or maybe run.

Yesterday I considered buying a sweatshirt at SoulCycle. I looked at the price tag. It was almost $200.

I walked away. It was too high of a price to pay. It wasn’t worth it. It just wasn’t in the budget.

If only I could be so intentional with how I spend my mental energy….

When Dementia Knocks: Update

Hi friends! Just a bit of a blog update. You can now find me online at WhenDementiaKnocks.com. Tell your friends.

In addition, I started a Facebook page with the title When Dementia Knocks. This is a place to post my blog as well as provide some other dementia resources. If you’re a Facebook person and you feel compelled to “like” the page, you can find it here: https://business.facebook.com/DementiaKnocks/

If you aren’t a Facebook person because you think it’s catty and are sick of seeing your relatives argue about Trump, I get that. Good for you.

It appears in the “business” section of Facebook but don’t worry–I’m not selling you anything (except some bad humor). As you may have realized, I’m seriously opposed to pushing products and services or even recommending them.

AND (man, I’ve been busy) I know have a Twitter handle (@dementiaknocks) for the blog. You can find that here: https://twitter.com/DementiaKnocks

I am hoping that being more involved in social media will reach some individuals I am currently not reaching. I guess this is how the youngsters do it nowadays.

In other blog news, I have a new favorite coffee shop to write. It has a latte called the Optimist–which is blackberry mocha flavored. I feel like I’m getting more optimistic just by drinking it.

 

Hey Dementia Community: Stop Telling Me Your Challenges Aren’t a Big Deal!

If it wasn’t a big deal, why was she telling me about it?

She said that having to cancel lunch with a friend because her husband (who was living with Alzheimer’s) was having awful anxiety was no big deal.

She said that her friend could stop by later. That she wasn’t that thrilled with the restaurant (Olive Garden) her friend picked anyway. That she had gone out for lunch with another friend a few days ago. She even made a joke about her weight and said maybe not going out for lunch is best.

Again, she said it was no big deal.

But here I am at this conference chatting with a family care partner who sought me out. We probably have about four minutes until I have to get to the next session.

In this limited time, she’s not talking to me about financial care planning or her husband’s diagnosis or her worry that one day he will walk out the front door and be lost forever.

She hasn’t told me about her feeling of disconnectedness within her marriage or how her kids are in denial that their father has a progressive disease.

She’s telling me she had to cancel lunch with her friend.

It’s a big deal.

I said, “I’m so sorry you couldn’t go to lunch with your friend.”

I said it with the sincerity I would say, “I’m sorry your husband died, ” or “I am so sorry to hear about this diagnosis.”

I really was sorry, and I felt for her. She had to give up something that was important to her. We’ve all been there–whether due to dementia or other life circumstances. It’s hard when you aren’t able to do what you want to do. We’re allowed to be upset about that.

She nodded and said, “Thanks but it’s no big deal. I mean, there was worse things.”

Of course there are worse things. There are always worse things. I’d have nothing to talk about in life if we were only allowed to complain about the things that are truly the worst.

Just because something is not the absolute worst thing to ever happen in the history of world does not mean it’s not difficult. And it doesn’t mean it’s not a big deal. As I sit here right now, I am declaring a new life rule–YOU GET TO DECIDE WHAT IS A BIG DEAL IN YOUR OWN LIFE. And you don’t have to apologize for what is a big deal in your life at any particular moment.

People living with dementia and care partners often tell me about some of the challenges in their lives and say then follow up by implying those challenges are small and insignificant.

Sometimes I get confused when I’m getting ready in the morning and trying to figure out what’s the toothpaste and what’s the deodorant and the hairspray. But that’s just a small thing.

I can’t do my crafts downstairs anymore because he comes down and needs my attention a lot. I know people have it worse. At least he’s home. I can deal with not crafting.

I want to make the same stuff I always make for dinner but now stuff tastes different to him and he won’t eat what I make. I am stuck making pasta every night because he says other stuff is gross. But I don’t want to complain. Pasta is okay.

I used to be able to sew but now it’s just frustrating because of Alzheimer’s so I gave up. It’s not the end of the world.

I’m guilty of saying something isn’t a big deal when it is, in fact, a big deal to me. I’ve been known to go on a monologue complaining about a problem or talking about a difficult situation. Then I tell everyone it’s not a big deal and dismiss it.

Elaine, why would you go on diatribe if it’s really no big deal to you?

And I say the same thing to those of you who reach out to tell me about challenges but then downplay those challenges because they are no big deal.

It’s okay for something to be a big deal. And it’s okay to say it’s a big deal. You realize that it is not a big deal to everyone in the world and that maybe it won’t be a big deal forever, but it’s a big deal right now. Sure, maybe you’ll get over it. Maybe you won’t even remember it in a year. That doesn’t mean it’s not a big deal right here in this moment.

It doesn’t make you self-centered or whiny. It just makes you a human being.

So care partners…I know the world expects you to be upset when your loved one is diagnosed, forgets your name, or passes away. Those are big deals, but please know that there are other moments that might seem inconsequential to others that are big deals to you. Stop telling me the things that are bothering you aren’t big deals because those things matter, too. Stop minimizing the loss you feel when you can’t go to Olive Garden with your friend. It’s loss. Loss is a big deal.

To the care partner who had meltdown in front of me because her husband could no longer handle the recycling and had thrown out a lot of plastic silverware. Maybe it’s not entirely about the recycling. Or maybe you’re really environmentally-conscious and it is. Either way, you’re struggling with it and it’s important.

And for my friends living with dementia…I’m looking at you as well. You deal with many challenges. Some of you are thriving. Some of you are struggling. I’d say quite a few of you are thriving and struggling even at the same time. Sometimes when I talk to you I hear you dismissing frustrating pieces of dementia as if they don’t matter. Your friends leave, but you tell me it’s fine because now you know who really cares. Your wife won’t let you mow the yard, but you say it’s okay because it’s too hot out there anyway. You can’t volunteer at the humane society anymore because you don’t have the energy. That’s loss. Loss is a big deal.

If you are struggling with something, that thing matters. Maybe it won’t matter so much tomorrow. Maybe it won’t matter in ten minutes. But right now…it’s a big deal. Stop telling me it’s not.

I don’t believe you anyway.

 

 

 

 

 

 

When Dementia Knocks

We have a winner, folks.

Bill Bass, Cedar Falls, Iowa (should I be inserting his age here as well?), suggested When Dementia Knocks and this title was the runaway winner by vote.

To clarify, I used popular vote and not the electoral college. And it was all online—so no hanging chads. I can’t make any conclusions about Russian collusion at this point.

I can’t speak for all of you who voted but I’ll tell you why I think the new title is a fit.

Dementia knocks…

Dementia knocks quietly on the door. Maybe you ignore it for the moment.

Dementia knocks and you open the door. You adjust to its company.

Dementia knocks and then forces its way when you don’t answer.

Dementia knocks you on your butt. You get up. But sometimes it takes a while.

Sometimes the knock is gentle and even kind.

Sometimes the knock is brutal.

And then it’s gentle again.

But it never really stops knocking.

So here we are…a few years into this blog and still going strong (well, most days). A new name. A new layout (if you use the actual WordPress site).

And an upcoming FREE dementia conference with a FREE lunch–but you have to register in advance. If you are in the vicinity of Northeast Iowa on July 19, check it out:

https://www.eventbrite.com/e/uni-gerontology-conference-building-a-dementia-friendly-community-registration

In closing, I’m going to share–with the permission of the writer– an excerpt from an email I received this week. I’ve read it about 439 times. And I’ve obsessed about my inadequate response.

Here’s what new friend had to say in that email:

I’ve just received a shiny new Alzheimers diag. Sad but relieved. I’m not going crazy it’s my brain that has broken. It’s better to have a name for the enemy. Maybe I can turn him into my buddy. I feel like I have a few years when I can still be me and do my things. After that I hope she can put me in a nursing home and move on with herself But for today I am okay. Just gotta try to be okay tomorrow and the next day and everyday. All I want to do is keep being okay and not be a bother. I think life still can be good. For now anyways But I am so scared.

I’m humbled that someone would reach out to me hours after an official diagnosis. But my response about new challenges, new goals, planning, maintaining relationships, realism, hope, and how it’s okay to not be okay fell short.

How could it not?

I can’t fix dementia and my typed words from 2000 miles away can only be so supportive in such a situation.

But when you find yourself with that “shiny new Alzheimer’s diagnosis,” you should know you’re not alone. Until there’s a cure, there’s education. There’s support. There’s life to be lived. And professionals like myself need to keep working hard to send those messages.

And when there’s a cure, I’ll happily find another way to spend my time. Maybe I’ll start that doggie daycare for senior and disabled pooches. If you think that’s a joke, you don’t know me.

But for now….I’ll keep writing because dementia keeps knocking…. (was that too corny?)

 

Why We Fall

I recently went to Wisconsin for a speaking engagement, and I went out for Chinese food with one of my most ambitious former students. She shares my passion for improving dementia care, and she’s not afraid to be straightforward in her advocacy for residents that live at the nursing home where she works as an assistant administrator.

She said, out of the blue, “You know what you should do? You should do something on falls and dementia.”

When someone tells me I should do something, I’m usually pretty unlikely to do it. However, it occurred to me that I’d never written about dementia and falls before. My former student was onto something. And I credit myself, really, because her brilliance is a direct result of my excellent teaching and advising.

Just kidding, Taya. You were brilliant before you were my student.

As you might know, dementia increases a person’s risk of falling. And falling is a big deal. A person can break a hip or get a concussion. Nursing homes and hospitals have an incentive to minimize falls…they don’t want bad press and they don’t want to get sued.

I have said for years that I could run a nursing home and guarantee zero falls. I’d just keep people in bed on sedatives all day. It’s a great solution, right?

Obviously not.

Here’s the thing about caregiving–and it’s not so different from parenting in a way. We want to minimize risk and maximize independence. But where is that balance? How can we encourage as much autonomy as possible while limiting risk?

Well…let’s start with talking about why people with dementia fall.

First of all, balance is a brain function. Dementia is a condition of the brain. In fact, it’s the cerebellum that controls balance, fine muscle movement, and coordination. When dementia impacts that part of the brain, it’s no surprise than balance is affected.

So, yes, dementia itself brings challenges with balance. Once again–louder–for the people in the back….DEMENTIA ISN’T JUST ABOUT MEMORY LOSS. (Should I make t-shirts that say that? I’m sick of saying it, and people still aren’t getting it.)

There are other ways in which dementia increases a person’s risk of falls.

I talk a lot about how dementia changes how an individual experiences the world. Dementia literally changes how you see the world. It’s not that someone is wrong with your eyes if you have dementia, but your brain may be less effective in interpreting what your eyes see.

Someone with dementia might not interpret stairs correctly, leading to a fall. Perhaps their brain doesn’t correctly interpret food that has fallen on the floor, and they slip. Maybe they don’t notice the guide bar on the wall because it’s the same color as the wall, so they don’t use it, which increases the risk of a fall. Hey–interior designers–you can help reduce falls by making some small changes to homes and facilities. Seriously, we need so much help in this area.

Fatigue among those living with dementia increases falls. It’s tiring having dementia, and we are all more likely to fall if we are exhausted. I don’t have dementia (that I am aware of), but I have a bad habit of stumbling at night because I’m too tired to pick my feet up.

People with dementia may be more tired during certain times of day, and–no surprise–falls increase during these times of day. A person with dementia who is allowed adequate time for rest is less likely to fall. In addition, falls are minimized when we allow a person with dementia to create their own daily rest and wake patterns rather than dictating these patterns. If your loved one struggles with fatigue in the afternoon, try to structure their day so they can nap or at least rest quietly during that time.

People with dementia, just like the rest of us, need to eat, to drink, and to use the restroom. If people are hungry, thirsty, or need to relieve themselves, they are likely to try to get up and meet that need solo when perhaps a little bit of help might be useful. If we regularly ask people if they need to use the restroom, for example, they might be less likely when they try to get up to do this without assistance. If we keep water nearby so they don’t have to get up and find water when they are thirsty, they might be less likely to fall.

Memory impairment itself can result in falls. Sometimes dementia (or another condition) takes away the ability of someone to walk without assistance, but if they don’t remember this they may get up and try to walk anyway. Someone once told me that she didn’t know why her dad kept trying to get up after he had knee replacement surgery. In fact, he didn’t remember that he had undergone the procedure. People forget they have walkers or canes. I once met a guy who was a lower limb amputee. He couldn’t remember why he was in a wheelchair. He was surprised every time he tried to stand up and realized he only had one leg.

“What’d they do with the other one?” he’d ask.

Sometimes poor judgement leads to falls for people with dementia. I know that I’m not stable when I walk on ice, so I avoid walking on ice. If there’s a slick floor, I walk a different way so I don’t slip. I’m a relatively clumsy being, so I try to set myself up for success. (In this case, success means not ending up on my read end on the ground.) I may be a klutz, but my good judgement keeps me from frequent trips to the emergency room.

But what if my judgement became compromised? What if I lost that inner voice that told me it’s likely I will end up on the ground if I try to walk across ice? Well, that’s what can happen with dementia. People with dementia might lose the ability to instantaneous assess the risk of a situation and therefore put themselves in environments that can be risky.

A guy recently told me how he recently took his father who had Alzheimer’s on a fishing trip. He looked over at one point and saw his father standing of the edge of a cliff, inches from a fall that would have certainly ended his life. When he was told to back up, he shrugged and told his son to stop trying to control him.

I would be negligent if I didn’t mention the role of medications in falls. I would argue that many individuals with dementia are over-medicated. There are times when residents in nursing homes and assisted livings are given medications when a change of environment, a modification of caregiving strategy, or a simply friendly conversation might have done the trick. Medications should absolutely be an option in treatment of the symptoms of dementia, but I promote the idea that medication shouldn’t be the first intervention strategy.

Why? Medications have side effects. Those side effects can include dizziness. They can include orthostatic hypotension. What is orthostatic hypotension? You know that feeling of lightheadedness when you stand up after sitting or lying down for a while? It’s due to low blood pressure. I recently learned that this is called orthostatic hypotension. It’s a common side effect for many medications, including anti-psychotics. It’s also what happens if you stand up too quickly after a 90 minute massage, get dizzy, and accidentally knock over a vase–not that I’d know.

I recently visited a nursing home and met a man with Parkinson’s who told me his hobby was going outside in his wheelchair and collecting rocks. I told him that I thought this was fantastic way to spend his time and encouraged him to keep at it. He mentioned that the nursing home staff wasn’t fond of his rock collecting. I was puzzled.

Later, someone who worked in the nursing home told me that his rock collecting often resulted in him falling out of his wheelchair. In addition, he was bringing dirty rocks inside the nursing home–not exactly a great thing for a setting where staff worked hard to create a sanitized environment.

That’s the hard thing.

We want people to be able to make their own decisions. We want them to be independent and to participate in their own self-care. We want them to feel like human beings rather than caged animals. We want people to do what makes them happy.

But we don’t want them to fall. And falling here is meant both literally and figuratively.

So we try to find that balance. And sometimes we make the wrong call.

We think Dad can take a shower without help and he falls. He breaks a hip.

We think Grandma can still go up and down the stairs to do laundry. She tumbles down the steps and is on the ground for over 24 hours before someone stops by.

We think our friend is still okay to drive but he gets into a fender bender. We think our wife can go to the dinner party she wants to attend but she leaves in tears because it’s so overwhelming. We think Grandma can make the potato salad for the 4th of July Celebration, but we realize later that she made it a week in advance and let it sit out. And the whole family celebrated the 4th by fighting over the bathroom.

These are real stories of care partners who errored on the side of autonomy. And later felt so guilty, so dumb, so ineffective.

We sometimes get burned when we try to maximize independence.

Yet when we try to maximize safety people living with dementia feel limited and argue that their quality of life is being compromised.

When do we step in?

When do we step back?

 

 

 

 

Help Me–Vote on Potential Blog Titles

Because I don’t think I can get away with calling my blog “The Blog Formerly Known as Welcome to Dementialand” (a la the Artist Formerly Known as Prince), it’s time to focus on a new title.

Thanks to everyone who submitted suggestions in the contest. You can rate the finalists here: https://www.surveymonkey.com/r/blog_title_ratings

There are several titles I really like, so I need your help. Please submit your ratings by Friday, June 1, at 11:59pm (Iowa corn time…aka Central Standard Time).

Please note there were a few suggestions that didn’t make the cut for various reasons. These include:

  1. Anything with zone, land, or ville in the title. I just decided I needed to go in a different direction and not try to come up with something similar to my old title.
  2. The Best Dementia Blog on the Planet. Also The Only Dementia Blog You’ll Actually Read. I appreciate the compliments. But I just can’t. The same goes for Elaine’s Kick Ass Blog. And I don’t think mom would like that one because it has the “A” word. You all are too kind, though.
  3. Anything that already has a presence online or in book form, even if it’s not trademarked. We are looking for something unique. Ain’t nobody gonna be harassing me for trademark infringement. (Then again, dementialand wasn’t trademarked when I started this blog.)
  4. Anything that implies the blog focuses exclusively on caregiving. Sure, we talk a lot about caregiving, but I know plenty of people living with dementia read this blog as well. I also want it to be appealing to those outside the world of dementia–because educating the general public is how we build dementia-friendly communities.
  5. Anything that mentions memory. I think that we overemphasize memory loss as a part of dementia when it is only a part of a constellation of symptoms. I don’t want to contribute to the message we give to society that dementia equals memory loss and only memory loss.

Don’t forget to help me out by rating the title options. It’ll only take a minute of your day, I promise!

Memorial Day

Dear Friends,

There will be no blog post today due to the Memorial Day holiday.

I am overwhelmed by your support and your suggestions for new blog titles. I’m not sure I can explain how much it means to me.

I started this blog with a hope of supporting those living with dementia and their care partners. I had no idea how much support would come back to me.

I appreciate you more than you know.

XOXOXO,

E