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

When Opportunity Knocks (About Those Upcoming Blog Changes)

Hi friends.

I know I left you in a state of suspense the other day about our big blog changes. I’m guessing some of you haven’t slept since.

Well, I hope you’re sitting down—-because we are changing the name of the blog! This will be the first change in an exciting blog reboot!

I’ll start from the beginning.

Sometimes opportunity knocks on your door, and you look through the peephole. You don’t recognize it as opportunity. In fact, it looks like a pile of garbage.

You don’t let it in at first, but you keep peeking out. And after a few days, you realize that pile of garbage is, in fact, an opportunity. You let it in.

Here’s what happened. I got a cease and desist email. Someone trademarked the term “dementialand” after I started my blog.

And, because I am who I am, I do need to make this clear. IT WAS TRADEMARKED AFTER MY BLOG WAS ESTABLISHED. It’s important to me that people understand this because I teach students to respect intellectual property, avoid plagiarism, and participate in other such ethical behavior.

This individual has a book with “dementialand” in the title and has learned that I am using I am using this term to profit and promote my goods and services.

PROFIT? WHAT PROFIT?

My first thought was that I was willing to send this person a check for every cent I have ever made from using this term. This check would be for $.00. Actually, it would be an invoice. I paid to upgrade my WordPress account so that you see fewer adds. The communication I received also referred to misuse of the term by my “company.” What company? I’m just a woman who frequents local coffee shops and eats way too many baked goods while she writes about dementia.

My second thought was that, sure, I’d change the name of my blog….How about Dementiaville? Dementia County? Dementiaworld? I’LL SHOW THEM. Fortunately, that streak of pettiness was short-lived. BECAUSE I AM AN ADULT.

My third thought….why is someone picking on me? I write this blog without any type of compensation. I do it to help people. It’s not my job (although it’s related what I do at my job). I write with the hope that maybe, just maybe, I can help someone out there in a small way. This blog is my way to, hopefully, make this world a slightly better and kinder place.

I have talked to a couple friends with law degrees, and both indicated a few reasons that perhaps I don’t actually need to change the name of the blog. But….I understand trademarks. I could have trademarked the term, but I had no interest in going through this process and restricting its use.

A few days after that initial notification, that pile of garbage started to look like an opportunity.

Here’s why I am thankful for this push to change the name:

  1. I have mentioned to several friends that if I had known people other than my mother and husband would read this blog, I would have put more thought into the name. I’ve never been 100% sold that this is the perfect name for my work.
  2. I am a lover and not a fighter. I’ve got plenty of battles to fight in my life (we all do), and this one isn’t worth the fight.
  3. I read an excerpt from the book with “dementialand” in the title. Let’s just say that the author sees dementia differently than I do. I don’t want my readers to be confused and think that I wrote this book.
  4. Sometimes you just need a change.
  5. I can do this my way, and I can make it a fun process.

Now, about that fun process.

When I first named the blog, I didn’t have a blog. I mean, I came up with a title when I had not yet written a post. I didn’t have a purpose or a target audience. I just knew I wanted to write.

Now I have content. I have more readers than I ever imagined. That means WE (yes, WE) can come up with a better title.

I really do need your help. I mean, I’m obviously a failure at naming blogs. The title I chose was one I never really liked and got me into potential legal trouble.

So it is YOUR turn.

You are invited to submit a suggested title here: BLOG TITLE CONTEST

I will choose a few of my favorites, and then we will do a poll to choose the new blog title. And, since everyone loves a contest, you will get a prize if your title is eventually chosen.

I have no idea what that prize is yet. But it will be awesome.

Your deadline is Saturday, May 25, at 11:59 CST.

Oh, and doublecheck for me to make sure your proposed title isn’t trademarked.

Onward, friends.

(Wow. Writing that was really therapeutic for me.)

 

 

 

Dementia and Dinner Parties

Human beings continually amaze me.

They amaze me in how inhumane and cruel they can be.

And they amaze me in how wonderful they are.

A few weeks ago, someone amazed me in how wonderful they were.

I was doing a presentation at a dementia conference. The vast majority of attendees were professional or family care partners. As I was chatting with people before my presentation, I asked some of the participants what they wanted to learn.

I want to learn to understand my husband better.

I want to understand what my mom is going through.

I want to learn how to calm my residents when they get upset.

I want to have a friend with dementia over for dinner and I need to know how to make it the best possible experience for her.

Wait. Rewind. What was that last one?

An older gentleman was attending a dementia conference for the purpose of learning how to make a dinner party more enjoyable for a friend with dementia.

That’s it. That’s the whole reason he spent an entire day at this conference.

He didn’t have a family member with dementia. He didn’t suspect he had dementia.

He just wanted to make a pleasurable evening for someone living with dementia and happened to see the conference advertised. He signed up.

Here was the story…he and his partner had been friends with another couple for decades. The wife had Alzheimer’s and the disease seemed to be progressing quickly. He still wanted to spend time with them. He still wanted to invite them over. He just wasn’t sure of a few things.

What do I do if she doesn’t know my name?

Does she have any dietary restrictions?

Is it okay if we have music playing?

Do we stop her if she’s telling a story and rambling on and on?

Is it okay for her to have a glass of wine?

All good questions.

We chatted for a bit after my presentation. In short, I told him to keep inviting his friends over. I said he should be prepared to roll with the punches. I said he shouldn’t pressure them to stay too long. I told him that his friend could still enjoy his company even if she couldn’t remember his name. I also suggested he work on getting his friend’s husband out to go fishing or have a few beers without his wife, if possible.

He seemed confident when he left. He seemed excited about the opportunity to have his friends over for dinner when others might be excluding them for social events.

As he walked away, I just shook my head.

People are amazing.

Dementia and Diversity—What Should We Call People with Dementia?

Recently I found myself talking to the daughter of a nursing home resident. We were discussing why nursing home staff should avoid calling residents “sweetie,” “honey,” “dear,” and similar terms. I’ve read quite a few articles arguing that such language can be demeaning when used toward older adults. I mean, you wouldn’t call your boss sweetie, right?

The daughter agreed with me.

Then her mother, who was sitting nearby, piped up.

“I like it when they call me honey. It makes me feel loved,” she said.

And I was reminded of something.

I don’t speak for all people living with dementia. In fact, I don’t speak for any of them. I speak based on my own background and knowledge. My views are shaped by my perspective on the world and my personal experiences. Sure, I listen to people living with dementia and do my best to process their experiences and feelings. But even if I were to be 100% accurate in my perceptions of where someone is at, that’s one person with dementia.

If you’ve met one person with dementia, you’ve met one person with dementia.

I stand in front of groups and talk about what you should and shouldn’t do when you interact with someone who has dementia. But is every person going to agree with my recommendations? Nope.

I recently watched a video of a man with cerebral palsy. He was talking about what annoyed him…being patted on the head, people pushing his wheelchair without asking…but then he said something interesting. He reminded everyone that he’s just one person with cerebral palsy. He doesn’t speak for everyone with cerebral palsy. Something that might be frustrating to him might be welcomed by another person.

An African-American colleague and I were chatting a couple months ago about bias, discrimination, and micro-aggressions. He mentioned that he might perceive a comment made to him as biased, whereas another African-American individual could hear that same comment and think nothing of it. There’s not an official list of what offends every African-American because African-Americans are individuals and do not share a collective brain.

My friend, Drew, has cystic fibrosis. My education would tell me to refer to her as a person living with CF. We call that “person-first” language. She’s a person before anything else. However, she refers to herself as a CFer. And who I am to explain why that’s incorrect? She gets to call herself whatever she wants.

I live in a university culture. I am constantly made aware of preferred language and current trends in political correctness. I follow the tips I’m given. I call students what they prefer to be called. (This was a particular point of emphasis when our university realized we had an increasing number of transgender students. A student whose legal name was Michael preferred to be called Lucinda. And I have no issue with that.)

It’s in my nature to prefer things to be black and white, so I like to be given rules. Either I’m right or I’m wrong. And I can point to a piece of paper to show someone that they’re wrong. But I’m not sure it’s so simple here.

Recently I wrote about why we shouldn’t refer to people living with dementia as dementia sufferers. Sure enough, I heard from a few people with dementia who preferred to be called dementia sufferers. They felt like saying they were living with dementia rather than suffering from it painted too rosy of a picture. They wanted the world to know how challenging dementia was—and they felt like using the term dementia sufferers was the best choice to really represent dementia.

And that’s their experience. I can’t argue with their experiences.

We make recommendations of what to call individuals and how to interact with them, but we do this at the group level. And people living with dementia are just as diverse as people living without dementia. They have different preferences. They have different likes. They have different needs.

This isn’t about me. It’s about them. So I need to adjust.

I was talking to a woman in early-stage dementia about this a while back. I asked her if she considered herself to be a dementia sufferer or a dementia patient or a person with dementia or a person living with dementia….

She laughed and said, “I don’t know. You can just call me Clara.”

I wasn’t sure what to make of this–because her name was Sue. I wondered if she’d had a cognitive lapse.

“I’ve always wished I were named Clara,” she said.

From then on, I called her Clara.

 

 

Dementia and the Fabric of Life

My name is Elaine and I hate jeans.

I’ve always hated jeans. When I was kid, I never wanted to wear jeans when my mom helped me get dressed. She’d remind me all the other kids would be wearing jeans. I didn’t care. I didn’t want to wear jeans. I wanted to wear sweatpants.

Actually, I wanted to wear sweatpants and a jersey. The jersey had to have a number on the back. And this was my uniform through most of my childhood.

Unless my mom made me wear jeans. I’d ask her why I had to dress up. Yes, I considered jeans dressy. Mostly because they were stiff and uncomfortable and I only had to wear them when sweatpants weren’t appropriate.

I hate the texture of denim. It’s not cozy and soft against my skin. It’s just annoying.

I do wear jeans sometimes now, but I still don’t like them. I’m particular about the texture of the denim–some are better than others. But they just aren’t comfortable to me. Why don’t we just make pants out of sandpaper?

I’m not sure my husband has ever actually seen me wear jeans within the walls of our house. I put them on immediately before I leave the house and take them off about 12 seconds after I get home. I know some people might sit on their couches in jeans and watch TV. Just thinking about that makes me cringe.

About a year ago, a woman told me about her husband who has Alzheimer’s and would continually take off his jeans in the house. She’d find him in the kitchen, the living room, the dining room, even on the deck…in his boxer shorts. He’d worn jeans pretty much every day of his life, but now he didn’t seem to want to wear them.

My first thought was, “Well, yeah, because they’re not comfortable against your skin.”

He obviously would agree. His wife noticed he didn’t do this with pajama pants, sweats, or even dress pants. Just jeans.

She asked why. I explained that sometimes people become more sensitive to textiles against their skin when they have dementia. And their preferences for different fabrics and materials may change.

A woman I know in the early stages of dementia bought all new bedding. She couldn’t figure out how she’d slept on those sheets and with that awful comforter previously. They weren’t soothing. They were abrasive. She went to Bed, Bath, and Beyond to touch bedding before purchasing. Although her husband couldn’t tell the difference between dozens of bedding sets, she would touch some and grumble. It took her a while to find a texture that appealed to her.

A young man recently told me about his grandfather with Alzheimer’s who decided he hated all the blankets in their house because they were “too heavy.” When they reminded him that he’d used these blankets for years, he seemed confused. There was no way he could’ve ever tolerated those heavy blankets.

A woman who always wore pants doesn’t like having anything pressed against the skin on her legs. She prefers skirts now.

A guy doesn’t enjoy sitting in his recliner anymore. He’s suddenly convinced that the fabric is cheap and scratchy.

Sometimes we think these people are just being difficult. They’re like the Princess and the Pea. They’re too sensitive. Finicky divas.

But those changes in sensitivity to texture are real. And, as dramatic as sounds, they can impact quality of life.

I mean, if I had to sleep in jeans, that would impact my quality of life. Honestly, I can’t even think about it without my contorting my face into some weird expression.

There are a lot of reasons that people with dementia might take their clothes off (and be perceived as “inappropriate”). Sometimes it’s because the fabric is abrasive to them. Someone might throw off all the blankets at night because they’re warm–or because the blankets are “too rough” or “too prickly” or “too heavy.” Maybe a leather recliner doesn’t work anymore because the feeling of the back of your thighs on the leather when you’re wearing shorts is just “too sticky” or “too suction-y.”

As for me, it’s late Friday afternoon and I’m writing at my favorite local coffee shop. I’m wearing jeans and thinking about fabrics has made them even more annoying than usual. I’m going home to put on sweatpants.

True story.

Dementia and Toxic Positivity Mongers

I was recently introduced to the term “toxic positivity.”

I instantly knew what the term referred to, and I could relate.

I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day.

And I can remember times when I was struggling and someone shot that toxic positivity crap at me.

Years ago I was dealing with ongoing anxiety issues when a friend told me, “Just go to your happy place.” I wanted to respond, “Just go to hell.”

Then she wanted to remind me of all the blessings in my life. She was trying to help, but the message I received was that I was a failure for struggling when I had so many good things in my life.

Yes, I have a million positive things in my life, and I’m grateful for those things. I still have bad days. I shouldn’t have to feel guilty for that.

Positive thinking is great. But it’s human to feel a wide range of emotions—and not all of them are going to be positive. You are not doing something wrong if you can’t see the silver lining. Maybe your situation really does suck. And maybe in time a positive lining will come into focus, but perhaps you don’t see it now. And that’s okay.

The problem with toxic positivity is that it makes us feel like failures if we can’t maintain a smile in the face of adversity. Guess what? You don’t HAVE to smile through adversity.

A woman I know told a friend that her husband had been diagnosed with Alzheimer’s. Her friend’s response was “At least it’s not cancer.”

Way to look on the bright side….except the bright side sometimes fails to acknowledge that humans experience loss, and we are allowed to grieve those losses.

You are allowed to cry in your car in the Target parking lot. You’re allowed to yell as loud as you like in the shower. You’re also allowed to do these things in public for that matter. Maybe it will make others uncomfortable. So what.

Let’s talk about death and toxic positivity.

You should be thankful he lived such a long life.

We should all be grateful he’s in a better place.

You should be glad he’s not suffering anymore.

Sure. But someone you love is dead and that’s hard. Comments like this minimize loss. I don’t care if the person was 98 years old and the happiest son-of-a-gun you’ll ever meet. You get to experience that loss without someone telling you how grateful you should be.

Sometimes we all feel sad. We feel cheated by the universe. We get pissed off. That doesn’t mean we have a bad attitude. It means we are human.

I overheard this conversation at a nursing home recently:

Woman 1: It’s so hard that Dad’s here.

Woman 2 (Woman 1’s sister, I assume): But there are much worse nursing homes.

Woman 1: I know, but it’s so sad seeing him here.

Woman 2: Yeah, but we should be grateful the nursing home is so close to Mom.

Woman 1: Yes, but it doesn’t make it any easier.

Woman 2: I’m just saying we should look on the bright side. We are blessed.

Spoiler alert—Woman 2 is one of those toxic positivity mongers.

The bright side. The silver lining. There’s always someone worse off.

It’s okay to not focus on the bright side. It’s okay to not look for the silver lining. It’s okay to be sad.

And feeling sad doesn’t mean you aren’t blessed. It doesn’t mean you’re not grateful for those blessings. It doesn’t mean you’re ungrateful or unappreciative or that you lack empathy for other people’s struggles.

It just means you’re sad.

You’re allowed to be sad.