Category Archives: dementia

Nursing Homes and Guilt Traps in Dementialand

aging, alzheimer's, caregiver, caregiving, dementia, families, nursing home

If your loved one is living in a nursing home and this makes you feel like an awful person, STOP. Just stop. You are not an awful person. You are a human being who is doing the best that they can.

Let’s face it. We don’t know many people who say, “I hope someday I get to live in a nursing home.” Sure, some nursing homes are better than others. Yet, even the best nursing homes are not home—even if we allow people to move in their own furniture and plaster family pictures everywhere. Bringing a recliner from home doesn’t make a place home.

If you’ve heard someone say, “I could never place my loved one in a nursing home,” and it broke your heart a little bit when you pictured your dad in his nursing home room….please know that this person has not experienced what you have. They’ve never been at a hospital when a social worker told them that their mother absolutely, positively could not go back home but needed to be out of the hospital within 24 hours. They’ve never had to have a talk with their dad about how the money the family had pooled for in-home care was depleted, and there was no way for him to continue living in his own home. They have never been in a position where a nursing home is their best—although not a great—option.

In a perfect world, nursing homes would be unnecessary. We would all live healthy, independent lives until we dropped dead suddenly at the gym at the age of 95. We’d wave goodbye to fellow gym rats as we fell off the treadmill, and that’d be that. I’d love for that to be my farewell to the world. My goal is to die very old and very suddenly—and to inconvenience no one in the process. As a gerontologist, I’m smart enough to know that’s unlikely.

Medical technology can cure us of ailments that used to kill us. We survive acute illnesses but must live with chronic ones. And people, because of this annoying issue of having to earn a living, can’t always quit their jobs to provide 24-7 care to Grandma, Grandpa, Mom, or Dad. (And, to be honest, not everyone is physically and emotionally capable of being a full-time in-home caregiver.)

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

I can’t promise him I will never get in a car accident. I can’t promise him I’ll never lose my job. And I can’t promise him that he will never live in a nursing home.

There are things in life that are out of our control.

So we sometimes must consider a nursing home. Not because we love the idea—but because this is reality and we have limited options. Few of us have the money to pay for round-the-clock home care. And our homes often aren’t equipped to provide the type of environment to keep an individual with Alzheimer’s or related dementia safe. So we check out nursing homes.

And we get a sick feeling in our stomach when we see the people who live there. They are sitting in wheelchairs by the nurses’ station. They are waiting…but for what? For dinner? For bingo? For death? Some of the staff members are smiley, pleasant, and kind. Others seem to hate their jobs. Most are rushing around without time to chat. We identify what we consider to be the best nursing home in our desired area. Maybe it has a bed available; maybe it doesn’t. And that’s the sometimes ugly, often painful process.

We move our loved one with dementia into the nursing home. Sometimes they are aware of where they are and exactly what’s happening…sometimes they aren’t. Maybe they are pleasantly confused; maybe they are terrified. Either way, we feel like the most disgusting scum on the face of the earth.

And what other people say doesn’t help. Maybe someone in your support group says something like, “I’ll never put Harold in a place like that after what a great husband he’s been.” (In fact, this is a direct quote from a support group I once visited—except his name wasn’t Harold.) Maybe if Harold had been a jackass of a husband she’d already have placed him in a nursing home?

Perhaps someone in your own family makes a backhanded comment about how you didn’t invite Mom to live in your basement bedroom. What they don’t understand is that you’d be terrified she’d fall down the steps to the basement and you can’t quit your job—and honestly don’t want to—to be home with her all day. Maybe they don’t understand that her disease will leave her unable to bathe herself and use the toilet on her own. Your own physical health makes you incapable of taking on those challenges. And you didn’t see a line of people volunteering to let her live in their spare bedroom.

Maybe your siblings weren’t anywhere to be found during this process. Maybe they weren’t willing to be involved in making a decision but showed up just in the time to tell you that you made the wrong one. Perhaps they visited Dad once in the last year and he really rose to the occasion. He had the energy of a teenager and mental sharpness he hasn’t possessed in five years…for that one day. (Yeah, that happens a lot when you’re trying to convince someone that your loved one is struggling—just like when your car doesn’t make that clunking noise when you take it to the mechanic.)

Now your siblings can’t figure out why you have turned into such a villain and are insisting on imprisoning your dad in a nursing home. It wouldn’t be so awful that they thought you were a villain if there weren’t this voice in the back of your head echoing the sentiment each time you visit the nursing home.

So stop. Just stop. You aren’t a villain. You aren’t a bad person. You are just a person—doing the best you can under circumstances that aren’t great. And you’re not alone.

Sometimes a nursing home really is the best option. It doesn’t mean we like the idea. It doesn’t mean we’re abandoning our loved one. It means that we had to make a hard decision.

And sometimes the best of our limited options isn’t great.

Impulse Control (Or Lack Thereof) in Dementialand

alzheimer's, dementia, frontotemporal dementia, hospice

When I do presentations and explain how dementia can impact impulse control, I ask groups, “How many of you have ever felt like hitting someone, kicking someone, or verbally berating someone…but didn’t?”

It’s funny. I’ve asked this question to quite a few groups: nursing home administrators, nurses, nursing assistants, social workers, family caregivers, nuns, cops, city bus drivers, college students, and legislators—to name a few. The initial response of most groups is to passively look around to see if anyone else raises their hand. It’s almost like they think it’s a trick question and that I’m setting them up to look like dregs of humanity.

And then I say, “Okay. Only me, then.”

The two notable exceptions are city bus drivers and (get this) nuns. When presenting to both of these groups, hands shot up and heads nodded. Maybe bus drivers admitting that they sometimes suppress angry responses isn’t surprising…but the nuns?

Let’s face it. We all feel that way once in a while—maybe more than once in a while. Even nuns.

When the nuns readily (and honestly) admitted that they have felt like lashing out at people, it reminded me that those passing thoughts are part of being human. And, for most of us most of the time, they are just that–passing thoughts.

It’s not the absence of these urges that make us kind people and upstanding citizens. It’s the decision to take a deep breath, push those thoughts aside, and respond in a different—and more acceptable—manner. Our goodness is not dependent on the absence of frustration (and even rage) with others. It’s more dependent on our choice to respond in a way that doesn’t demand someone call the cops.

For the majority of our population, it is a decision. However, the ability to make that decision depends on the activity in a certain part of our brain: the prefrontal cortex. The prefrontal cortex is responsible for impulse control, emotional regulation, self-regulation, and social skills.

Yeah, it’s pretty important.

When this part of the brain is damaged by dementia, people struggle to control their emotions. They may even become physically aggressive. At the very least, what goes through their head comes right out the mouth (whether it’s kind or not).

We’ve all been told “If you can’t say anything nice, don’t say anything at all.” However, let’s imagine what life is like when you really can’t stop yourself from saying those things that float through your head. I wouldn’t have many friends, I’d probably be divorced, and I’m pretty sure I would’ve lost my job by now.

And I’m not unique. We all have thoughts, urges, and desires that ain’t pretty. It’s seeing someone drop a $100 on the bill while walking down the street and thinking—just for a split second—that you could keep it and no one would know. But you give it back. It’s getting so frustrated with a coworker that you have this moment when you clench your jaw and having the word “asshole” float through your consciousness. But you don’t call them an asshole. It’s seeing a woman you haven’t seen in a year and realizing she’s put on an impressive amount of weight in that time. Thank you, prefrontal cortex, for the ability to notice but say “I love the way you’re wearing your hair,” rather than, “Wow! You’re a lot bigger than you were at the Christmas party!”

If my prefrontal cortex fails me, I’m screwed.

With Alzheimer’s, the prefrontal cortex is eventually impacted, but it is generally not affected until a bit later in the disease process. However, this part of the brain is usually impacted early in the disease process for those with frontotemporal dementia and chronic traumatic encephalopathy (CTE).

When I was in graduate school, I started volunteering for a hospice. My first hospice patient had frontotemporal dementia. I was told by the volunteer coordinator that several volunteers had already visited this guy, but none of them were willing to go back. She wasn’t sure why.

As I entered his house for the first time, I greeted him by saying “Hi! I’m Elaine, the hospice volunteer!”

His response was “Hi, Elaine, the hospice volunteer. Can I get a kiss?”

Except…he didn’t ask for a kiss. It was something a bit more sexually explicit, and I’m trying to keep my blog PG-13 here.

I called the volunteer coordinator that afternoon and said, “I think I know why the other volunteers don’t wanna go back.”

I didn’t know a lot about dementia at the time, but for some reason I was comfortable being around him. His wife worked two mornings a week, and I’d come over and stay with him during that time. I’d sit on the floor with my laptop and work on my thesis. He’d watch movies and pipe up every 15 minutes or so to ask for a sexual favor. I’d tell him I was pretty busy at the moment with my thesis. He seemed to respect that. I’m not sure how my 23-year-old self found normalcy in that routine, but we did it for about four months. Then he moved to a nursing home.

I can’t come across a copy of my thesis without thinking of this guy and wondering how many times I was asked for sexual favors in the process of writing it. And somehow it makes me smile. Despite the weirdness of our situation, I really liked him.

I didn’t know it at the time, but his prefrontal cortex was degenerating. I don’t think he ever had an MRI done, but an image of his brain would have likely shown atrophy of this area. He wasn’t a dirty old pervert harassing a young woman. His brain was broken.

I once heard someone say that the prefrontal cortex is what separates man from beast. When it doesn’t function correctly, we want what we want—and we want it now. We are unable to think ahead to predict the consequences of our words and actions. And we don’t process emotions like guilt and empathy.

For those of us without dementia, our prefrontal cortex is constantly functioning to help us make decisions that preserve our relationships and jobs. And all of us, from nuns to bus drivers to college professors, depend on it to keep us out of trouble.

The Stupid Things We Say to People in Dementialand

dementia

In the spring, I asked for my loyal readers to send me some questions in hopes of finally achieving my adolescent dream of being an advice columnist. I received more questions than I expected. From the bottom of the heart, thank you. You guys really are the best.

Sure, I answered some. Yet many of them I didn’t answer—not because they weren’t great questions. In fact, maybe they were too good. I was left shaking my head, thinking “Wow. That sucks. And I have nothing to offer you.”

Several readers emailed me about something that tends to happen when people “come out” with their dementia to family and friends. It’s an issue I’ve thought about a lot. I’ve wanted to offer advice to the individuals with dementia and their caregivers, but I didn’t know what to say. It finally occurred to me that I was focusing on the wrong group. I want to offer advice to everyone else on behalf of people with dementia and their caregivers.

So here are some things to not say to someone when they tell you they have dementia:

“Oh, I’m super forgetful, too.”

“I lost my keys the other day. Maybe I have dementia as well.”

“I’m right there with you. I didn’t remember pick up milk the other day after my husband reminded me three times.”

“I bet I’m just as bad. You wouldn’t believe the stupid stuff I do sometimes.”

To be honest, these types of comments make me pretty angry. My first thought is to be judgmental of those who make such comments, but after a bit of reflection I’ve realized that maybe these people aren’t insensitive jackasses. Maybe they are just uneducated. There’s not much I can do to prevent jackassery, but I can make an attempt to educate.

Dementia is a condition caused by a disease such as Alzheimer’s, frontotemporal dementia, Lewy-Body dementia, or vascular issues. It is a medical condition. It’s unfortunately irreversible and ultimately fatal. It’s a big deal.

Let me put this a different way. Let’s say a friend came to you and said they had stage IV lung cancer. What if you responded with one of the following statements?

“I’ve been coughing so much lately. I bet I have lung cancer, too.”

“I’m right there with ya, buddy. I get winded walking up the stairs.”

“I had trouble catching my breath the other day. I know exactly what you’re going through.”

Those comments are ridiculous, right? Well, that’s exactly what we do to people who have dementia. It would be hilarious if it weren’t so infuriating. Comments about how we are going through something similar (when we aren’t) might be well-meaning, but they minimize the severity of a dementia-causing disease. And they say, “I’m not really listening to what you’re telling me.”

If you are a person who has clinical depression or an anxiety disorder, you might have experienced similar comments. I remember when I was going through my first episode of depression in college. I slept about three hours a night for weeks and unintentionally dropped twenty pounds that I couldn’t spare at the time. I threw up when I tried to eat and lived with a feeling of panic that wrapped around me like a boa constrictor. I thought I was destined to live my entire life in this state (please note: I got better).

I am certain my friends knew something was quite wrong but we had avoided the word depression. After my first visit to the student health center, I decided it was time to let a friend in on what was going on. This wasn’t easy for me. Honestly, if I had realized I was a lesbian in college and had to divulge this to my conservative Republican father, I would have dreaded that conversation far less than “coming out” with my depression to a friend. That’s how difficult this was for me. (And I do understand the irony that I am now writing about having depression in a blog. I’m kinda over that whole stigma deal.)

I explained that the doctor told me I had clinical depression and that he recommended anti-depressants. Her response was, “I’ve been in a bad mood, too. You know I didn’t do well on that test Monday.” Um. She didn’t get it.

To be fair, she was 21 years old. I don’t want everything I said at 21 (or before or after for that matter) scrutinized. In fact, I still say a lot of stupid things that are intended to be helpful but miss the mark. To hold this comment against her almost twenty years later would be purposeless. In fact, my point is that she was doing the best that she could. She was well-meaning. If the roles were reversed, I don’t know if I would have done better.

There’s a rule we need to understand in helping those who have health issues, and unfortunately some of us never really get it. We continue to try to make people feel better by saying we know exactly what they’re going through because we’ve done it ourselves—or even that we’re doing it right now. We try to show comraderie. We try to tell people they’re not alone because our own struggles are similar.

It doesn’t work and we need to stop.

Telling someone who has Alzheimer’s that you sometimes lose your sunglasses isn’t helpful. What you are really telling them is “Alzheimer’s is no big deal. We all go through stuff like that.” And you know what? That’s not true at all. Alzheimer’s is not a normal part of aging. In fact, it’s a terminal disease that has tremendous psychological, social, and financial impacts on families. Oh, sorry about your sunglasses.

I’ve talked with many people who have dementia that struggle with how to tell family and friends about their diagnosis. It’s not an easy conversation to have. And, let’s face it, there’s no perfect response.

However, there are some suggested ways to respond when someone tells you they have a serious illness (whether that serious illness is ALS, cancer, or Alzheimer’s).

Remember that it might have been really difficult for them to tell you this news. It sounds silly, but saying “Thank you for letting me know this” can reinforce their decision to include you. You can say something like, “I’m so glad I know now so that I can there for you.”

Forget that anecdote about your Aunt Bertie who had the same disease (or maybe it wasn’t even exactly the same disease but it was kinda the same) and used castor oil or vitamin E or snail semen or maybe it was prayer to treat all her symptoms. Just zip it. This ain’t your Aunt Bertie, and this isn’t the time. Oh, and that study you read on Facebook about how they cure mice with Alzheimer’s by using green tea extract? Just keep it to yourself. (By the way, sometimes I wish I were a mouse. Doctors seem to be able to cure everything for them.)

It’s okay to say, “I don’t know what to say, but I care about you.”

It’s okay to say, “You are important to me, and I’m here for you.”

It’s okay to say, “I want to help and I’ll need some guidance on how to do that.”

It’s not okay to imply that you have similar cognitive issues to someone who has been diagnosed with Alzheimer’s, frontotemporal dementia, dementia with Lewy-Bodies, or another dementia any more than it’s okay to imply that you have similar breathing issues to someone with lung cancer.

If you are a person with dementia and experience this reaction when you tell others about your diagnosis, you have my permission to handle this situation in whatever way you see fit—but try your best to avoid slapping your friends and family.

It’s About More Than Memory in Dementialand

dementia

Sometimes when I do a presentation, I ask people to shout out the first word that comes to mind when I say “dementia.” Without fail, I hear “forgetful” and “memory.”

Sure, people with dementia can be forgetful. And, yes, their memory is impacted. However, the public’s impression of this disease is that it’s all about old people and forgetfulness. First of all, it’s not only old people who are diagnosed. Also, memory loss is one symptom of dementia, and many times it isn’t the symptom that is most challenging for individuals and families.

Let me tell you a few stories that illustrate how memory loss isn’t always the red flag indicating a problem.

A while back, I had the privilege of visiting the Motherhouse—the home for retired Catholics nuns. I did a presentation for employees and residents, but the best part of the day was chatting with the sisters who helped to take care of their friends with dementia. Let me tell you that I was blown away by the kindness, humor, and intelligence of the women that I met. I was also impressed with their commitment to equality….and the giant “Refugees Welcome Here” sign I saw as I drove up the hill to their home. In addition, I learned that you don’t refer to a group of retired nuns as “you guys.”

One sister told me about a friend of hers who had served the church since early adulthood. In her early 60’s, her loving and generous personality changed. She became bitter and angry. Her love for the Catholic church faded away. Her sisters knew that there was something wrong, but it wasn’t until years later that doctors settled on an Alzheimer’s diagnosis. How cruel is a disease that takes away a nun’s passion for the church? How powerful is a disease that can make a peace-loving sister bitter and angry? A major change in personality is a symptom of Alzheimer’s and other dementias. Sure, people do change as they age, but significant changes signal a problem.

I once spoke to a local family that was humiliated to find out that their father, a man in his 60’s who earned a six-figure salary, stole some items totaling about $15 from SuperTarget. A spiral notebook. Some wet cat food. A couple of packages of paper plates. His family was especially confused at his attempt to swipe some nail polish remover. When apprehended, he didn’t seem to think it was a big deal. In conversations with his family, he kept saying, “I returned the stuff. Why can’t you guys get over it?”

His wife and children were horrified when he casually mentioned that he had stolen from Hy-Vee (if you’re not an Iowan, this is a grocery store), Casey’s (if you’re not an Iowan, this is a gas station), and Home Depot in the past. He had even stolen from some friends when the family went to their house for Thanksgiving.

“My wealthy and church-going father,” one of his sons told me, “was actually a very accomplished thief.”

His judgement continued to deteriorate over the next couple of years, but he refused to visit a doctor. Finally, he ended up in the emergency room after locking himself out the house and trying to dive through a window to enter. This lead to a diagnosis of frontotemporal dementia. His family was shocked to learn that stealing can signal dementia.

At a conference this summer, I chatted with a woman whose husband has been diagnosed with chronic traumatic encephalopathy (CTE—which you may recognize as the type of dementia common in former NFL players). Her husband, who played college and semi-pro football, was thrilled to become a grandpa for the first time about ten years ago. However, his joy was short-lived.

He soon started getting so annoyed with his grandchildren that he regularly threatened to “whip them” for doing what his wife called “normal kid things” like singing silly songs and jumping around the house. At one point, he even said he’d kill them if they didn’t shut up. His wife knew something was really wrong when he got so frustrated that he went for a walk while babysitting, leaving his 4- and 5-year-old grandsons to fend for themselves. When the CTE diagnosis came, it was a relief. His wife liked the idea of her husband having CTE better than the idea of her husband hating his own grandkids.

Difficulty remembering recent events is often, but not always, an early symptom of dementia. When people around us become forgetful, we think dementia. We don’t think dementia when we see lapses in judgement and personality changes.

But let me end with a (somewhat) happier story…

A woman I met at one of my presentations married a computer engineer. She laughed when she told me that in the first 40 years of their marriage he said “I love you” once a year. The words would always come on their anniversary right after dinner. The statement would come out of his mouth in such an awkward way that she almost felt sorry for the guy.

She explained that she never doubted his love but rather appreciated that he would show it by changing her oil, taking care of the yard, and driving her to appointments. She said his lack of verbal affection didn’t bother her and that she knew it was just part of the agreement when they married. They had, as she put it, a solid marriage.

Imagine her surprise when, at the age of 70, he started saying “I love you” more often. Not only did he say it frequently, he said it publicly—in the grocery store and in line at the post office. She liked it, of course, but it made her uneasy. And sometimes the timing seemed downright inappropriate—like when they were sitting at the bank listening to a loan officer explain interest rates and he interrupted the guy to say “I love you” to his wife. He also started telling their kids that he loved them and that he was proud of them. The kids never doubted his sincerity, but they asked their mom why their dad was acting so weird.  When she told her friends she was concerned, they told her she was crazy.

One day they were working in the yard when she saw her husband and the neighbor woman conversing at the fence. He leaned over the fence to give her a hug. It was so incredibly out of character that his wife almost vomited.

“He doesn’t really hug family or friends, but he’s hugging this neighbor woman that he’s never particularly liked? Something was very wrong,” she told me.

But how do you convince someone to go to the doctor citing “too affectionate” as the primary symptom? It was a year or so later that he began to get in fender benders, and he finally ended up at the doctor to discuss lapses in judgement and confusion. They diagnosed him with Alzheimer’s, although his wife suspects he actually has frontotemporal dementia.

He’s in a nursing home now. She visits every single day, and every single day he tells her that he loves her at least twenty times. He also tells the staff, other residents, other residents’ families, and random visitors. The state surveyors visited the nursing home recently, and he even confessed his love to one of them.

His wife told me that she’s sad he has dementia, but grateful for the way the disease has manifested in her husband. She sees other residents that are aggressive, anxious, and angry. He’s loving.

“He spent most of his life being hesitant to say I love you,” she told me. “He’s making up for lost time, I guess.”

Then she shrugged and told me she’d rather have her non-expressive computer engineer who said “I love you” once a year.

Next she brilliantly sums up dementia by saying this:

“But dementia does as it pleases. I gotta be thankful for small gifts.”

Classes in Dementialand

dementia

Hey y’all…I’m back.

I take the summers off from writing, and since it’s the unofficial end of summer (Labor Day) I decided to get back on that proverbial horse. Also, my dad recently emailed me “Where da blog?”

So here I am.

Next week I’ll have a full post, but for now I wanted to let you know about an upcoming course I’m teaching aimed at older adults. Obviously, I don’t expect you to drive across the country for this (nor do I think it would be worth it), so this is aimed at my local readers in northeast Iowa.

If you happen to be in my neck of the woods for three Wednesdays in November, I’d love to see you:

https://llu.uni.edu/

I did notice that the link to my specific course description seems to be down, and I’ve just sent an email about that. Hopefully they’ll get that fixed, but in the meantime I’ll give you the synopsis of the course in my own words:

Elaine will ramble on about Alzheimer’s and dementia. She’ll probably make you do some group activities and partner things, so if you don’t like stuff like that, you’ll curse her under your breath. Oh, and she’ll tell some jokes. They won’t always be funny, but people are nice so they usually laugh anyway.

While you are checking out the website, please notice the other courses as well. You might, in fact, be more interested in learning about cinematic satire or where your food comes from than listening to me. That’s fair, and it will only hurt my feelings a little bit.

See you next week!

 

The Hilarious World of…Dementialand?

aging, alzheimer's, dementia, depression

This is it, guys. My final post before I go on summer break. (To be fair, summer break seems a long way away since it’s about 35 degrees and rainy in Iowa right now.) I’ll be back in the fall. I’ll miss you. Really.

I was on the road for work last week. During this trip, I became very grateful for two things: 1) podcasts, and 2) my friend CJ who recommends the best podcasts.

CJ recently recommended I listen to “The Hilarious World of Depression,” a podcast where comedians talk about their issues with depression. Good call, CJ. I love it. It’s equal parts funny and depressing, as you might expect. I have to admit it’s reassuring in an odd way. (And, to be honest, it’s less depressing than “S-Town,” which I listened to before “The Hilarious World of Depression” and brought me to the verge of tears at least twice somewhere on I-90 in central Illinois. I won’t be a spoiler, but “S-Town” is a real downer.)

Early in the podcast, the host makes a comment about how his life has been full of both comedy and depression. It occurred to me that these are two independent variables which may not always be negatively correlated. Comedy doesn’t mean the absence of depression. Depression doesn’t mean the absence of comedy. They can co-exist.

And it got me thinking….could there be a podcast called “The Hilarious World of Dementia?” (Not that I’m considering starting one. I don’t like my voice when I hear recordings of it, and I might get in trouble for copying the depression podcast anyway.)

Is dementia funny? My answer, I guess, is that it’s no less funny than depression. Dementia kills…then again, so does depression. Two serious issues. In fact, two issues that are public health crises. Where’s the humor in that?

If I have been given a natural gift, it’s that I am almost always able to see the humor in difficult situations. I’ve only recently starting viewing this as a gift. In fact, it’s gotten me in a trouble a few times, usually because I see situations as hilarious when others don’t get the humor. I can come off as insensitive if I’m not careful.

What I’ve realized is that finding humor doesn’t make situations less sad or scary. It just helps me cope with the sadness and the fear. Maybe you can apply that to dementia–or depression. Or just about anything else. Comedy doesn’t take away the bad stuff, but it helps you get through it.

Once I spoke to a woman whose mother had Alzheimer’s. Her mother’s favorite restaurant was Steak and Shake, home of those controversial skinny greasy fries you either love or hate. As her mother’s disease progressed, she thought she’d take her out of the nursing home for an afternoon and head to Steak and Shake.

As they finished eating, her mom said she needed to use the restroom. The woman thought she might need help, so she went with her. Although her mom was physically capable of using the restroom, she needed some prompting.

The woman prompted her mother to pull down her pants, and her mother balked.

“I can’t take off my pants or the man won’t bring me Skittles,” the mother said. The daughter had no idea what “man” she was referring to, and she was surprised to hear her mom talk about a candy she had probably eaten three times in her life. Yet, the mother could not be convinced to pull her pants down. A battle ensued.

The daughter got creative and pulled out her cell phone. She put the phone up to her ear and had a conversation with the “man.”

“Will my mom still be able to have Skittles if she pulls her pants down?” she asked. Then she nodded. “Okay, great, thank you.”

And the mother pulled her pants down and used the restroom. Well-played.

As the daughter told me this story, she explained that there was a moment where she had to make a conscious decision about whether she would find the humor in this.

“I’m standing in the restroom at Steak and Shake making a fake phone call to try to convince my mother that she can still have Skittles if she pulls her pants down,” she recounted. “It was sad. And then I decided I was gonna appreciate how ridiculously funny it was as well. Because if I couldn’t find the humor, I wasn’t gonna survive.”

Dementia isn’t a joke. Dementia is brutal and fatal. And I know you can’t always laugh, but if you have the choice between laughing and crying, go ahead and laugh….because laughing won’t always be an option. And don’t ever apologize for finding humor in the strange world that is dementia. Sometimes things are just funny. You aren’t making fun of your loved one; you are just getting through in the best way you know how.

Caregivers often say to me “I know I shouldn’t find this funny but….” And then comes a story that they feel guilty for finding humorous. Stop feeling guilty, caregivers. It’s okay to laugh. You will be a better caregiver if you can find at least a small amount of humor in your everyday life.

There’s a risk in associating humor and dementia that I cannot deny. I don’t want people to think dementia itself is funny. As a society, we do have a challenge in getting people to understand that dementia isn’t just about forgetting in old age. It’s so much more than that. The memory loss, as I often say, isn’t the worst part for many individuals and families. Alzheimer’s and related dementia diagnoses are serious and life-altering, but funny things do happen along the way. It’s okay to laugh when those funny things happen.

Now that I think about it, I’d probably say the same thing about life in general. You laugh when you can–because you never know when your next chance to laugh might be.

Another revelation from my new podcast obsession…

A comedian makes the point that having depression is like knowing there’s a magic wand that’s five feet away from you that could make you feel better but not being able to get up of the couch and grab that magic wand–and thinking it wouldn’t work for you anyway. This made me realize that the cruelest illnesses are those that take away your ability to help yourself.

There are things that might make a person with depression feel better. Exercise. Spending time with friends. Going to see a counselor. All of these things take motivation and effort, which depression targets. In a way, depression takes away your ability to fight depression. How do you battle a disease that inflicts symptoms that prevent you from battling that disease?

The more I think about it, the more I realize dementia is similar to depression in this sense.

Dementia makes self-care so difficult. First of all, it saps your energy and makes you unable to follow through with tasks. When I meet someone with dementia symptoms and explain the resources available to them (or even how to get an appointment with a neurologist), I might as well be telling them that they need to run six consecutive marathons and solve a mathematical proof.

In all honestly, there are many individuals who have dementia and are unable to seek or accept assistance because their disease is telling them that they’re just fine…that they don’t need help at all. How do you fight a disease when the disease is telling you that you have don’t have a disease? Sure, I can talk to their family as well, but families are often times so shell-shocked that seeking resources can be overwhelming and challenging. And how does a family member help an individual with dementia when that person doesn’t have the self-insight to realize they have dementia?

Thank you to the creators of “The Hilarious World of Depression” for making my long drives in smoky-smelling rental cars more tolerable. Thank you for giving me something interesting to think about as I drove past cornfields and….well, mostly cornfields.

My next podcast? I’ll have to ask CJ. But how about something a bit more lighthearted?

 

Special Sunday Message From Dementialand

dementia

First of all, my apologies to subscribers who just received a blog post draft before it was ready to be posted. WordPress makes it easy to post when you don’t intend to. I’ve done it a handful of times since I started this blog, and I always beat myself up about it unnecessarily for days.

The second purpose of this Sunday afternoon message is to let you know I will be speaking in the Quad Cities on Wednesday, May 3. You can learn more here:

http://www.alz.org/greateriowa/documents/DAV_Workshop_Brochure_May_2017.pdf

Special thank you to Jerry Schroeder, who always organizes interesting programs for the Alzheimer’s community. He does all the hard work. All I do is show up and talk. And eat the lunch they give me for free. It’s a match made in heaven.

Sometimes when I speak at a conference I get there 15 minutes before my presentation and hustle back to my car when I’m done. I won’t be doing this on Wednesday. I can’t wait to listen to the other speakers, and I’m not sure I could be more excited about the day.

Have an excellent week, friends!

Dementia and Lady Doctors

dementia

A few words as I wade through all of the questions that were submitted to me upon my request… Be careful what you ask for, right?

I received more questions than I will be able to answer. If your question hasn’t appeared, it’s not because it’s not a good question. In fact, it may be too good of a question. I have looked at quite a few readers questions and thought, “No idea how to tackle that one.”

The question I tackle today is one that has taken me several drafts.

Elaine,

My wife has younger-onset Alzheimer’s and has an appointment coming up at the gynecologist. She goes every year for her check up, but this year I would have to go with her because she has declined a lot and no longer drives. I’m not sure if it’s appropriate for me to go with her or if she should go at all. I don’t know what she’ll say or do during the appointment. Any help is appreciated.

Ed

Well, Ed, let me start with this. I got a text from a friend recently telling me that she was headed to the “lady doctor.” And the “lady doctor” is not called the “lady doctor” because she’s a lady. In fact, sometimes she’s a man. My immediate response, of course, was to express empathy to my friend and wish her well. I could be in an awful fight with a female nemesis I despise, but if she mentioned she was headed to the gynecologist, I would halt all of my hatred for a moment to sympathize. If there’s one thing that brings women together to find common ground, it’s the gyno.

My female health practitioner is wonderful. She’s a great listener. She’s pleasant to be around and has a great sense of humor. Her “bedside manner” is second to none. Do I enjoy seeing her? Nope. Not at all.

My point is that even in the best of circumstances going to the gynecologist is no picnic. And going to the gynecologist isn’t the best of circumstances if you have dementia. It’s anxiety-provoking for most women. It can hell for women with dementia.

When I go to the gynecologist, I understand why I’m there. I understand that this unpleasant procedure is something a health care professional must do to help me take care of my body. But what if I didn’t understand that? How frightening would this process be if I didn’t understand what these people (who I may not be able to identify as medical professionals) were doing and why? Stop and think about that for a moment.

I’m not saying she shouldn’t go. I don’t have enough information to make that decision. And, even if I did, it’s not my decision.

If your wife was having a potential gynecological health issue that was causing her pain and impacting her quality of life, it might be necessary to pursue an exam despite any trauma it may cause. If this is just a routine exam prescribed by standard medical protocol, you may want to more closely consider whether it’s worth subjecting her to the appointment. Obviously, you should allow her to participate in the decision-making as much as possible, but as her Alzheimer’s progresses it becomes more and more your call.

If you do decide to keep the appointment, I might recommend calling the office ahead of time to make sure they are aware of her diagnosis. They might want to allow extra time. I would suggest staying with her–which I would assume might make her less stressed. You could also ask a trusted female friend to take her.

It is sometimes tricky to make decisions about whether people with dementia should pursue “routine” medical tests and appointments. Should Mom get her mammogram? Does Grandpa really need a colonoscopy? And what about the dentist?

If someone with dementia is in pain and we must determine (and hopefully fix) the cause of that pain, we may need to support them in enduring situations that are stressful and confusion at best–and horrifying at worst. We hope that our medical practitioners will be well-versed in dementia and patient with our loved one. Sometimes they are; sometimes they aren’t.

We should also keep in mind that medical appointments typically require us to follow instructions. Turn your head and cough. Put your feet in the stir-ups. Open your mouth. These seemingly simple directions, especially in an unfamiliar environment, can be overwhelming for someone with dementia. And then, of course, there’s the question of what you do with the information you gain from the appointment. If you find a problem, do you treat it? Is it cruel to not treat it? Is it cruel to treat it?

I’m sorry, Ed, that I can’t tell you what to do. What I can do, however, is give you permission to do whatever you think works best for your wife, even if it goes against the recommendations of the medical field.

Fatigue in Dementialand (aka Why the Dementia Brain is So Tired)

alzheimer's, dementia

Today we are back to Q’s and A’s. Today’s question is from Carole…

My husband is very fatigued, and sleeps way more than he used to. There are no medication changes, and he is on the same medications he has been for years (low dose ramipril, Lipitor, and hydrochlorthiazide). If we go for a very short walk, he is “exhausted” and will complain of his leg muscles being sore. All labs are within a normal range. Does anyone know the cause of increased fatigue associated with dementia?

Carole

Dear Carole,

Because I have to do my due diligence, I’ll go through some things that can cause fatigue in someone with dementia–medications (and he might react to some medications differently as he progresses), sleep issues (it’s likely he’s not sleeping as well as he used to), poor nutrition (people with dementia sometimes crave less healthy food like sugary treats), and depression (which is not surprisingly common among those with dementia). Kudos to you for making sure those labs are in the normal range.

But you know what? Even if none of the above factors are in play, dementia makes people tired. In short, it is exhausting to have dementia.

We often look at people with dementia, and it seems like they’re not trying. Let me assure you they are actually working really hard to do things that us folks without dementia do quite effortlessly.

I’m going to give you an analogy here, and it’s a really awful one. I played several sports in high school. I looked pretty athletic. However, I was–and still am–a very slow sprinter. When we ran sprints in sports, I always got in trouble for not hustling. My coaches thought I wasn’t trying when I was running my heart out. I was just really slow. I’d look at my teammates, who were effortlessly running 100 yards in the time it took me to run 60. And it was frustrating as heck. I remember telling a basketball coach in high school, “I know I look fit and it seems like I should be able to run fast, but I’m trying my best and I’m just super slow.”

No, high school basketball and dementia are not the same. Yet we can all think of a time when we were putting a lot of effort into something that was difficult for us (but easy for others) and another person accused us of not trying. It’s maddening.

You probably see where I’m going here. People with dementia are often perceived as not trying when in fact they are working extremely hard. The dementia brain must work constantly to make sense of the world. It is struggling to interpret one’s environment in the way that the non-dementia brain might struggle to understand a calculus problem when one never took a calculus class.

And, Carole, when you mention a walk, I think of all the changing sights, smells, and sounds your husband’s brain must constantly interpret. An effortless chat (on your part) is probably quite challenging for him as he must filter all the stimuli he encounters to focus on your voice and interpret what you say. And that’s tiring.

I have a friend with dementia who told me she’d meet with friends that would say something like, “You don’t seem like you have dementia. You just seem normal.”

What they didn’t realize, she conveyed to me, was how hard her brain was working to carry on a “normal” conversation while they were together–and how tired she would be after their visit. The longer the visit lasted, the less likely she was able to be “normal.” Her brain just got too tired.

(Notice I put “normal” in quotes. I don’t like when we allude to people without dementia as normal and those with dementia as not normal. We’re all weird, anyway. It’s what I like about people.)

Mental energy is a precious resource for all of us, especially those with dementia, and mental energy isn’t independent of physical energy. Think about….When you are mentally exhausted from a long and stressful day at work, it’s hard to get yourself to the gym for a workout.

People with dementia often have high levels of anxiety. Here is the tricky thing about anxiety–being keyed up all the time makes you tired but makes it hard to sleep well. Then you end up exhausted but jittery and tense, which is an uncomfortable feeling that leads to more fatigue and more anxiety.

Sometimes my brain gets tired. Maybe I’ve been grading too long. Maybe I’ve been working on a tedious report for the university. Perhaps I’m looking at data for a research study. My brain, just like every brain, needs a break sometimes. And I can give it a break. In fact, I have to give my brain a break at some point or my productivity suffers.

It’s harder to give the dementia brain a break. I can stop doing something that is mentally strenuous and do something that is mindless. Unfortunately, for someone with dementia, it becomes harder to find something mindless. Even doing something seemingly simple (like watching TV, having a conversation, listening to the birds), isn’t a break for the advanced dementia brain. The person may feel an urge to sleep in an effort to protect their brain from being overwhelmed.

Carole, I hope that’s somewhat helpful. If you ask someone else, they might conceptualize the association between dementia and fatigue differently. My answer, really, is pretty simple.

Your husband is tired because having dementia is tiring.

Elaine

 

 

When Dementialand meets CFland (A Guest Blog from a Friend)

alzheimer's, alzheimers, dementia, dying

Today we take a break from Q’s and their corresponding A’s for a special guest blog post from my thoughtful friend, Drew Dotson. You might remember Drew as the woman who teaches improv classes and helped me see that some of the same skills and perspectives that can be used in improv theater can also be used with individuals who have dementia.

She was also one of my cheerleaders in the early stages of this blog when I was wondering if anyone would even be interested in reading what I had to say. I was surprised when she could relate to some of my blog posts on the basis of her own diagnosis, which is very different from Alzheimer’s and related dementias. 

You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40 years. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited? How do you appreciate what you’ve got right in front of you when (as Drew puts it) it’s a one-way street heading in the less-than-fortunate direction?

So here is the adorable and incredibly insightful Drew on her thoughts on living in the moment without fear of the future….

I was 8 years old. I went to the doctor for a routine appointment, and I left there a changed person. I guess, by most standards, having cystic fibrosis isn’t routine, but this appointment wasn’t out of the ordinary. CF is a genetic disease primarily affecting the lungs and digestive system due to an excess of thick mucus. I knew I had CF, did breathing treatments every day, took pills to aid in digestion, etc. However, I didn’t realize that CF was anything more than a part of my day-to-day routine.

Then, as my mom stood at the front desk to schedule my next appointment, I browsed the bulletin boards hanging in the clinic. I glanced at a feel-good article about a man who had run a long-distance race, which was “remarkable considering he was 31 years old, which is beyond the life expectancy for someone with cystic fibrosis.” I froze. I reread the line: “beyond the life expectancy for someone with cystic fibrosis.” I began to process. Beyond the life expectancy? At 31 years old? But 31 is so young. And, if 31 is beyond the life expectancy, what is the life expectancy?

Sometimes, in our lives, it can be difficult to pinpoint the exact moment when things change. Some changes happen gradually and, before you know it, things are different. Other times, there is a specific event – a diagnosis, an important loss, surprising news – when you can say, in that moment, “This changes everything.”

Having simply considered CF to be something I handled every day, learning its fatality was heartbreaking. I felt so sad. I felt so hopeless. The third grade should be a happy, carefree time, with homework being the only thing to slow a child down. But I’d learned devastating news that would impact the rest of my life. There was no turning back; there was no undoing it.

From this distinct moment on, I began living a life centered on fear. It may not have always shown outwardly, but it was always there, lingering. I remember crying a lot, particularly at nights, knowing that I would never get to grow old. I had a lot of career aspirations, like most kids, but the future suddenly became a source of anxiety. I should have been looking forward to things, but instead began living with an awful feeling of dread.

This future was always weighing heavily on my heart. The fact of the matter is that CF is progressive. CF is irreversible. CF is fatal. Knowing this information, it’s unrealistic to think, ‘Well, maybe things will get better!’ As blunt as it sounds, it’s a one-way street heading in the less-than-fortunate direction. There may be medical advancements – maybe even a cure one day – but those are the maybes; they aren’t the current reality.

Growing older was always a struggle for me because it brought me closer and closer to the inevitable.  I realized I was more afraid of dying than I was afraid of not living. Yes, I will repeat that. I was more afraid to die than to not live. I was more afraid of the time I wouldn’t have than failing to use the time I did have. I was concerned about being robbed of life instead of appreciating the opportunities right before me.

Yes, CF is progressive. It is irreversible. It is fatal. I couldn’t change any of these things, but I could work to change my perspective. If I focused on the darkest parts – the struggle, the decline, the end – I might miss the sources of light – feeling loved, sharing a laugh, experiencing joy. Although the future carried with it a lot of uncertainty, I could no longer allow myself to overlook the precious moment that is today.

This wasn’t easy. It wasn’t like, ‘Okay, starting tomorrow, I’m going to be grateful. Done.’ It has been a process, and it will continue to be. Each day is different. On days when CF is front and center – like when I’m sick, when I see doctor after doctor, etc. – it can be especially challenging. However, I realized that the end could truly only interfere with the now if I let it. The present is this moment alone. If I can be in a moment without spiraling into thoughts of what used to be or what will come, I can find peace.

Although dementia and CF are not scientifically similar, there are many parallels. We have unpredictable lives due to our conditions. We know we can’t undo the damage that has already been done, but we can hope that things progress slowly and that we’re one of the best-case scenarios. Likewise, we longingly wish for a cure, knowing that we may not benefit from it, but maybe, one day, nobody will go through this.

In Dementialand and CFland alike, the future is a source of anxiety. While we don’t know the exact timeline, we know that there will be a decline. We redefine what “normal” means based on the current situation. We reminisce about how things used to be, and we worry about what things will come to be. The progression, for the most part, is beyond our control. However, we can do our best to keep “the end” from completely overshadowing the beauty in “the now.”

It can be hard to maintain a positive perspective when dealing with so much uncertainty. It takes conscious work, but it can be done. With so many factors beyond our control, the best way we can take charge is by being present. Imagine seeing your loved one with dementia smile and feeling joy rush into your heart. It may not be the smile it used to be. You may have fears of that smile going away. But that smile is still a smile, and it is joyous. When those moments of anxiety begin to creep in, remember that the feelings are only there because you care so deeply about someone. If that thought can be cycled back into something positive – love for someone – then you can resume your time in “the now.”

We may not be able to change the prognosis, but we can keep our focus on the present. By honing in on moments of delight, we can continue to live in the light.

Drew Dotson
To help Drew cure CF, visit: http://fightcf.cff.org/goto/drewdotson.