Issues in Identifying Dementialand (aka Why I Shouldn’t Be Left Home Alone)

My husband was at a conference all week, and I had a plan. I was going to paint the kitchen and put up a new light fixture.

I sent a text to my friend CJ who lives in Michigan to ask if he thought I was capable of putting up a light fixture. CJ happens to be an electrician. He told me it shouldn’t be that hard. There will be white wires and black wires. I just have to match them up.

Then he texts, “You got this.” And, a few seconds later, “TURN OFF THE POWER.” What he’s really saying here is that he wants to instill confidence in me but doesn’t have quite enough confidence to trust that I will turn off the power, but I appreciate that he doesn’t want me to die.

I buy a light fixture and some paint. I remove the existing light fixture. I lift the new light fixture over my head. I promptly drop it, and it shatters. Not a great start, but I can buy another light fixture the next day.

The next day I go back to Home Depot and buy a new light fixture. I give it another shot. Then I realize that the whole white and black wire deal doesn’t apply if you have a house that is 80 years old. All I have are two cloth covered wires.

I am not exactly a practical hands-on problem solver, so I text CJ (who is a practical hands-on problem solver) a picture of the situation and then call him. He tells me I am going to have to take a guess on the wires and then switch them if the light doesn’t work. After we hang up, I get a text: “YOU TURNED THE POWER OFF, RIGHT?” I appreciate that he cares so much about my personal safety. I follow his instructions but the light doesn’t work.

I get frustrated and quit. I decide to start painting. I am standing on my oven when I realize the top of our oven vent hood needs a coat of paint. Without thinking (obviously), I use the wall paint. Yeah, I know. You can’t do that. But it gets worse. I haven’t hit rock bottom quite yet.

I find some spray paint that says it can be used on metal, so I spray a coat of that over the top. Yeah, I know you can’t do that either.

I realize that this is a fairly large error in judgement. I text CJ a picture. He texts back, “HOLY MOSES.” Yeah, I know.

Then I go into full meltdown mode. I’m on the verge of tears and decide I need some wine. The kitchen is a mess because of my projects, so all I can find is a mug. I pour some wine into it. Then I sit on the kitchen floor, drinking wine out of a mug, and thinking about my weaknesses as a person.

A few weeks after my “incident,” I am visiting with an acquaintance. She has concerns about her grandpa (who she refers to as Grandpa Freddy) and is wondering if he might have dementia. I ask her why she’s concerned. She tells me that he was working on a simple bathroom project, got flustered, and just gave up. When her grandma came home, she found him sitting on the edge of the tub in tears.

This reminds me of my “incident.” Except Grandpa Freddy didn’t seem to do any actual damage and wasn’t drinking wine out of a mug while crying. And her grandpa’s behavior seemed to be more worrisome to family and friends than my behavior. No one wondered if I had dementia when I had a complete home improvement disaster followed by a meltdown.

You might attribute that to age. People are more likely to suspect you have dementia when you are older. However, there are people who are my age diagnosed with dementia everyday.

There’s another factor. We are different people. If I pull something similar when I’m in my 60’s, it’s probably not dementia. It’s just how I roll. Apparently, this wasn’t how her grandpa typically rolled.

He had done dozens of household projects. He was very competent, and this was a simple project that brought him to tears. Could he have dementia? Maybe, because it’s a change in behavior. We really don’t change that much as we age unless we have health issues.

The take-home message here is that when competent home do-it-yourselfers and rational problem-solvers start acting like I do regularly, they might have dementia. As for me, I’m fine. I just have a tendency to turn into an idiot when I attempt home improvement projects.

That’s why it’s so hard to diagnose Alzheimer’s and related dementias. We are all different to start. A doctor gives someone easy math problems. If they can’t do them, they might have dementia. Well, what if that person wasn’t good at math to start with? A person has flat affect and doesn’t show emotion. This could certainly be related to a dementia, but they may have been that way their entire life.

Using the wrong “there” and “their” may be related to dementia if you’re an English teacher, but I see people on Facebook may that mistake everyday. I’m not worried they have dementia. I know of an older woman who yells inappropriate comments at sporting events. A part of me wonders if she has dementia, but maybe she’s just inappropriate. I didn’t know her forty years ago.

And everyone, no matter how competent they are at something, messes up from time to time. Everyone uses poor judgment once in a while. We are talking about patterns of behavior here, not isolated incidents. And if something seems wrong, it could be something other than dementia (e.g., depression, cancer).

Final note on my “incident”… I got the light to work on the third day. As for the oven vent hood, I had to strip all the paint off with some crap that made my eyes burn and then repaint it with some epoxy stuff. It looks passable. CJ said he knew I had it in me all along. He may not have been telling the truth, but I appreciate it anyway.

Missed Potential in Dementialand

We spend too much time thinking about what people can’t do rather than focusing on what they can do. And I am no exception. Sometimes I forget to look for the abilities and strengths of people with dementia. How blind can I be?

Speaking of abilities…My friend Jen Eby is amazingly talented. She made me a beautiful quilt for Christmas. It matches the colors we just painted the living and dining room. I am like Linus from the Peanuts gang with this quilt. I carry it from the couch, to the recliner, to bed…If it were acceptable, I would take it to work. And, considering Iowa’s recent weather, I may consider this even if it’s not acceptable.

I was texting with Jen about how much I love this quilt and how I wish I had a hobby like quilting that I could do at night to unwind. We were talking about how I could learn crocheting. (If you know me, you may be laughing at this thought. I’m not offended.) Jen said there were plenty of online resources, including YouTube tutorials, for people who want to learn to crochet. She said it’s not that hard to teach yourself.

Then she reminded me that I was a gerontologist and asked if I knew any older ladies who might like to teach me.

Wow. I was disappointed in myself that it was so obvious and yet I hadn’t thought of it. I walk in and out of nursing homes, memory care units, and adult day services a few times a week. I see many women knitting or crocheting. Some of them have dementia. They may struggle to tell me what season it is or what they had for breakfast, but they continue making blankets, hats, gloves, you name it….But when thinking about how I could learn to crochet, it never occurred to me to use them as a resource.

Why hadn’t it occurred to me? I am always promoting positive views of dementia (or at least trying to). Yet I hadn’t thought about asking one of my friends with dementia to teach me to crochet until Jen suggested it.

As dementia progresses, affected persons may struggle to learn new things because of compromised short-term memory. But sometimes the ability to teach remains long after the ability to learn heads south.

Just like the rest of us, individuals with dementia are unique. As the saying goes, “If you’ve seen one person with dementia, you’ve seen one person with dementia.” And their skills and capabilities are unique.

We talk a lot about what people with dementia can’t do. We discuss their challenges. We know it’s a struggle.

And, yet, they sometimes amaze me.

I once talked to a woman who was in her 50’s and working on her master’s degree when she was diagnosed with younger-onset Alzheimer’s. She was able to finish up her degree. She got it done faster because she knew it might get harder if she procrastinated and her dementia progressed.

I am continually impressed with those who have dementia but remain involved in advocacy work. They lobby for more money to be put toward research, work to reduce stigma, and talk about their experiences to help the rest of us “get it.” I know a lot of people in the earlier stages of dementia who participate in significant amounts of volunteer work in a variety of settings. Of course, some are in the workplace. Sure, they may have limitations, but really don’t we all have our limitations?

I like to think that every person I come in contact with knows something I don’t know. Everyone has something to teach me–whether or they are aware they are teaching me or not. Dementia doesn’t change this. In fact, over the past few years people with dementia have been some of my best teachers. They’ve taught me historical lessons (about things like flagpole sitting, D-Day, and why we use tinsel on Christmas trees) and life lessons (e.g., the stuff that really matters in life).

And to think it never occurred to me that someone with dementia could teach me to crochet.

P.S. I still haven’t learned to crochet. Not that I don’t have anyone to teach me. Just that I decided it seems kinda boring and tedious. As I said, we all have our strengths. I’ve come to the realization that crocheting might not be one of mine.

Careers in Dementialand (Or What Serial Has to Do with Dementialand)

I was a little slow to the party, but I recently listened to the Serial podcast. It’s a spinoff of This American Life on NPR, in case you haven’t heard of it. If you haven’t listened to it but plan to, there really won’t be any spoilers contained here. Keep reading.

It’s a series of twelve episodes that explores a 1999 murder case. A high school student was arrested for the murder of his ex-girlfriend, but (as you probably expected) there are some who doubt his guilt. My point here is not to discuss his potential guilt or innocence, although if you know me and want to talk about that I’m all in.

My point in this blog is to discuss the defense lawyer entrusted with the case. As I listened to the podcast, I couldn’t help but wonder if she had dementia. Although she was hired because she was well-respected and tenacious, some strange behavior, poor judgment, and lack of follow-through on her part may have played a role in an innocent guy landing in prison. She was having some various health problems, rattled off on the podcast, at least one of which can be linked to dementia. She passed away in 2004.

I’ve heard rumors of the possibility of a new trial because of ineffective assistance of counsel. I would argue that a defense attorney with dementia could be as worthy of a reason for ineffective assistance of counsel as any–keeping in mind, of course, that I know next to nothing about law.

If a person shows poor judgment throughout their lifespan, they are just a person with poor judgment. We all know plenty of individuals who meet that criterion. If a person who previously showed good judgment begins to struggle to make reasonable decisions, there’s a problem that could be health-related. It could be depression, a brain tumor, bioplar disorder, schizophrenia…or dementia. Previously reasonable people do not just begin to behave erratically. Sure, we all make poor decisions from time to time, but conscientious individuals don’t just stop following through on their obligations. Sensible people don’t become unreasonable or illogical.

We think of this happening with people in their 70’s, 80’s, and 90’s. They start giving their money to causes that are not legitimate or leaving their dog outside in sub-zero temperatures. But dementia (and the related poor judgment) strikes people at younger ages. It strikes people at the peak of their careers.

Last year I was fortunate to listen to a panel of individuals recently diagnosed with Alzheimer’s. (For obvious reasons, people with Alzheimer’s are often hesitant to be on panels.) A 50-year-old gentleman on the panel had been diagnosed six weeks earlier. His diagnosis came as a result of some uncharacteristic behavior at work.

After 25 years with the same company, he started mismanaging money. He had combined his own money with a small amount of the company’s money in a bank account. When this was discovered by other employees, they confronted him. He wasn’t defensive or argumentative. He wasn’t remorseful. He just honestly didn’t grasp why this was such a big deal.

We think of dementia as old people being forgetful. That’s a piece of it. But it can be a middle-aged person who was previously an all-star at their job starting to drop the ball. It can be an executive who used to be quite patient blowing up at inconsequential things in the workplace. Or a male manager who starts saying inappropriate things to younger female employees.

There’s little information available on what you should do if you have a co-worker who may have dementia. I’ve heard it suggested that you should sit down with them and ask a non-judgmental question like, “Have you noticed you’re getting frustrated with some of the simple tasks around the office?” How awkward is that? I’ve also heard that you should consider contacting that person’s family, but is that a violation of privacy? We don’t have policies for how to negotiate dementia in the workplace.

Dementia isn’t just about forgetful little old ladies in the nursing home.

But Is Alzheimer’s the Same Thing As Dementia?

Question: Is Alzheimer’s the same thing as dementia?

Answer: Alzheimer’s is to dementia….as chair is to furniture. Alzheimer’s is to dementia….as orange is to fruit. Alzheimer’s is to dementia….as beagle is to dog.

You got that? If so, stop reading now. You won’t hurt my feelings.

If that doesn’t make sense or you want to learn more, read on.

Dementia is a set of symptoms. These symptoms might include changes in memory and/or personality, poor judgment, inappropriate behavior, impulsiveness, attention problems, and faulty reasoning. Notice I mentioned that dementia is MORE than memory problems. As a society, we tend to think that getting dementia just means we get forgetful. We lose our keys. We call people by the wrong names. We forget what day it is. And that’s a complete underestimation of how dementia can destroy a life.

People with dementia may show inappropriate sexual behavior toward family and friends. They may make racial slurs toward ethnic minorities at the grocery store. They might forget to pay their bills and find that their utilities are disconnected. It is common for people with dementia to wear clothing that is not appropriate for the weather (i.e., shorts in Iowa in the of middle of January). I once got a call from a woman who was horrified that her mother left her infant granddaughter home alone–because she forgot she was babysitting.

But does someone with dementia have Alzheimer’s? The answer is MAYBE. Alzheimer’s can cause dementia, but many other diseases can cause dementia as well. There’s Lewy-Body Dementia, Parkinson’s, vascular dementia (common after a stroke), Frontotemporal Dementia….Although there are many more causes of dementia, these are among the most common. When someone shows signs of dementia, it’s important to get an accurate diagnosis, and this typically comes from a neurologist, a neuropsychologist, or a psychiatrist.

Alzheimer’s is the LEADING CAUSE OF DEMENTIA. What many people don’t know about Alzheimer’s is that it is a terminal disease. Alzheimer’s kills. It kills because is causes total brain failure. Our bodies cannot continue to function after enough of our brain cells die. When I do public speaking, I often mention in far too casual of a manner that Alzheimer’s is fatal. I am working on that. I need to be gentler with this information. I throw it out there assuming that the families of those with Alzheimer’s know that Alzheimer’s is terminal. I should know better.

My grandmother died of pancreatic cancer. We knew it was terminal cancer at the point of diagnosis. She passed away less than a week later. For those days, my family lived in crisis. We struggled to eat. We struggled to sleep. We cried. But we survived. You can live like that for four days. You don’t do permanent damage to your physical or mental health.

But Alzheimer’s is different. You can’t live in survival mode for the duration of the disease. It is not unusual for someone with Alzheimer’s to live ten years after diagnosis. People cannot exist in crisis for the length of the journey. Care partners must take care of their own health, and they must find a way to seek out hope and laughter. Furthermore, they MUST accept help. In our society, we glamorize the person who sacrifices their own life to care for a loved one. But Alzheimer’s is a marathon. Caregiving for someone with Alzheimer’s and not accepting help is like running that marathon and not drinking water.

So does someone with Alzheimer’s have dementia? YES. Does someone with dementia have Alzheimer’s? MAYBE.