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?)

 

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?

 

 

 

 

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!

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