Nursing Homes and Guilt Traps in Dementialand

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.

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.

The Hilarious World of…Dementialand?

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.

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?

 

Dementialand and Nursing Homes and Dying OH MY! (A.K.A. When Your Presentation is Postponed Due to Lack of Interest)

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

About a month ago, I was contacted by our university’s honors program and asked to do a program for something called “Pizza with a Prof.” The professor (in this case, me) gets to choose a topic to talk about while the students listen and eat pizza. I was assured the prof would get some pizza, too. And, hey, I rarely turn down free pizza–unless it’s from Domino’s.

I thought I’d talk about some of my favorite gerontology-related topics. And–time to get excited here, folks–I put together a short Powerpoint presentation complete with a few photos of some of my favorite people, Drs. Elisabeth Kubler-Ross and Alois Alzheimer.

I chose a title for my presentation: “Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.”

For some odd reason, I thought this title would draw the interest of quite a few students. It would also show that I had a sense of humor. I anticipated that lots of students would sign up. I was wrong.

The presentation was scheduled for last Thursday. I received an email on Wednesday postponing it due to lack of interest. Only five people were planning to attend.

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

My gerontologist heart broke.

Okay, I’m exaggerating. My feelings weren’t hurt, and I didn’t take it personally. Maybe being confronted with one’s own aging process and mortality during lunch isn’t up everyone’s alley, even if the pizza is free.

My friend, Jessica, who coordinates the honors program, said maybe the day just didn’t work well for students. She said, “Your topic is awesome.” Of course, she’s one of my best friends. What is she supposed to say? Students don’t want to hear about death and nursing homes while they eat? That I only talk about totally depressing things?

I’m thinking a presentation titled “Cute Kittens and Funny Memes” might have garnered more interest. Or maybe a Powerpoint on the history of the Obama-Biden bromance.

My area of work as a gerontologist isn’t usually that interesting to people…until it’s really interesting (and relevant) to people. Dementia is boring. Dementia is sad. It’s something we don’t want to discuss. And then it all changes when someone we love has dementia. That’s when I get late night Facebook messages (which I don’t mind, by the way). That’s when people want to take me out for a glass of wine or a latte and talk dementia. Things become interesting when they matter to us. We care about issues when those issues impact us and the people that we care about.

Many of my college students are not comfortable with discussing death. I’d say it’s because they are 18 to 23 years old, but it’s not. I know people much older who are not comfortable with the topic of death. When I do presentations and cover issues related to dying, I see a certain percentage of my audience become visibly uncomfortable. Over time, I’ve learned to become comfortable with their discomfort.

I once had a lady tell me that the information I discussed on end of life issues was useful, but it was just too early in the day to think about such things. She recommended I not talk about death before 3 pm. I told her I’d take that under consideration. (In my defense, I was speaking at a “Families and End of Life” symposium that she had registered to attend.)

Aging is a topic of irrelevance to many people because they cannot wrap their mind around the idea that they will someday be old. It’s not complicated–we all get older (unless we die, of course, which I think is way worse than getting old). However, it’s difficult for most of us to fully grasp that we may someday be the older person who is limited in movement or cognition. We might be the older person who lives at a memory care community, assisted living, or nursing home.

We relate to kids because we are all former kids. In fact, I once heard a six-year-old tell a four-year-old, “I know what you are going through. I used to be four years old.”

None of us are former old people–save those of you who might have been reincarnated. I know what it’s like to be 10, 16, and 19. I don’t know what it’s like to be 79, 86, or 90. Sometimes it’s easier to pretend I’ll never get there and live in denial of the aging process. (I should add that it’s easier to accept the aging process when I see older adults who are healthy and thriving. Although they are typically not my “target” population, there are a lot of them out there.)

As much as I talk about dementia…as much as I talk to people with dementia…as much as I talk to loved ones of people with dementia…I am in denial that I could at some point have dementia. Logically I know it could happen to me, but it won’t happen to me.

When I chat with someone who has dementia, I’d like to tell you that I’m empathetic because I know that someday I could be that person, but I don’t think I really know I could be that person. If I’m being completely honest, I think a little bit of denial is protective for me in this case. If it were constantly in the back of my mind that I could experience dementia, I’m not sure I could hang out with people who have dementia.

I know that the population of individuals with dementia is a population I could join at any point, but it’s just one of those things that won’t happen to me…even though I know it could happen to me. I push any thoughts of being diagnosed with Alzheimer’s, Lewy-Body, or Frontotemporal dementia out of the realm of possibility, and I’m pretty effective at keeping those thoughts buried. I manage to think about dementia without constantly confronting the possibility that I could have dementia at some point.

I can’t judge college students for not wanting be in an environment that forces them to confront death and dementia. I don’t want to confront my own death and potential dementia either. I’m just really good at pushing it out of my mind at will.

My presentation has been rescheduled for this Wednesday. Maybe the last date happened to be a day that just didn’t work out with people’s schedules. Maybe the students planning the presentation didn’t do enough marketing the event. Or maybe I should change the title to “Who’s Going to Get the Final Rose on This Season of the Bachelor and Some Pics of Pug Puppies.”

And when they show up–BAM–switcharoo.

Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.

Let’s see how fast they can run carrying their free pizza.

 

 

 

Mean Girls in Dementialand

When I was in graduate school, the movie Mean Girls came out. If you haven’t seen it, I don’t recommend putting it on your priority list, but I have to say it was thought-provoking for me–at least as thought-provoking as an American teen comedy can be.

Here’s the premise. The movie, which stars Lindsay Lohan (post-Parent Trap but pre-shoplifting), features a clique of 16-year-old girls called the Plastics, who is–go figure–really mean to other girls. The mean girls are intent on dragging other girls down rather than supporting them. If you are a female who can’t name a few mean girls from your adolescent days, you were probably living under a rock. Or maybe you were homeschooled. Or, worst of all, maybe you were a mean girl.

When I first saw this movie, I was forced to consider every group of mean girls that I considered peers. (To be fair, I don’t think I was ever a mean girl, but I know at times I did show some mean girl-type behaviors. I’m not sure you’ll find a woman who made it through adolescence that can honestly claim she never acted like a mean girl, even if she wasn’t one.) I can think of mean girls from kindergarten. I can think of mean girls from middle school, from high school, from college, from grad school.

Even as an adult, I can think of some women I’d classify as mean girls. I’ve learned to distance myself from them, but there will also be groups of women who I think of as mean girls. They are the judgmental women at the gym. They are moms who make other moms feel like bad moms. They are professionals who try to hold back other women in their careers. Unfortunately, they thrive on making other women feel inadequate, insecure, and awkward. It’s not a great thing for the female race. In fact, women who feel the need to sabotage other women in various aspects of life is–in my opinion–one of the reasons women have not achieved greater success relative to men in the workplace and politics.

As I’ve gotten older, I’ve realized that mean girls come in all types of packages. They aren’t always pretty and they aren’t always young. Just like there are wonderful people of all ages, they are challenging people of all ages. (It’s interesting that people tend to think I like all old people because I’m a gerontologist. I don’t like all old people any more than I like all young people, or all white people, or all disabled people.)

I received an email last week from a former student who now works as a nursing home administrator. She asked me to come do an educational presentation at her nursing home. I read the email twice to make sure I understood what she wanted…she wanted me to do a presentation for residents without dementia to get them to be nicer to residents with dementia. The residents without dementia tend to be annoyed and critical of the residents with dementia. They accuse them of faking confusion to get more attention from staff. They are impatient with those with dementia and even mock their behavior.

I’ve had several professional fields discuss this issue with me recently. One works at an adult day services facility. About half of the participants have dementia, whereas the other half do not. The people without dementia like to play cards during the day. The people with dementia sometimes try to play and often get scolded when they can’t follow the rules of the game. The people without dementia have started telling the people with dementia that they can’t play–and not in a very nice way. One participant recently told another (who has Alzheimer’s) that she needed to get her act together if she was going to play cards with the group.

“It’s like a Mean Girls sequel,” the employee told me. “You could call it Elder Mean Girls.

It’s not that men are immune to this type of behavior. It’s just that the vast majority of individuals in nursing homes, assisted livings, and adult day service settings are female. Also, men who spend time in these settings tend to keep to themselves a bit more.

I recently visited one of my Gerontology majors who is interning at an assisted living. She gave me a tour of the place and pointed at a group of women gathered in a common area drinking coffee.

“That’s the cool club,” she said quietly. “You gotta live here a while and prove yourself before you get an invite. And if you’re not sharp, they don’t want a thing to do with you.”

The cool club. Really? I asked how they treat residents with dementia. The intern told me that the cool club does a lot of eye-rolling around people with dementia. And then they just ignore them until they go away.

“And they asked the activity director if she could not tell the people with dementia about certain activities, like cooking class,” she shared. The cool club doesn’t think people with dementia belong in cooking class. The cool club worries that they will mess up the recipes.

I’d like to think that these people really aren’t mean. I’d like to think it’s a matter of education. If you don’t have a knowledge of dementia, I can understand how it’d be frustrating to live with individuals who have Alzheimer’s or other types of dementia. On some level, there’s probably a need to separate yourself from those individuals–because it’s scary to think you’re like them.

Most of my career centers around two different populations. The first is college students. I’m a college professor. I spend a lot of time with 18 to 23 year olds. Sure, some of them are entitled. Some of them are huge pains. But a lot of them are pretty awesome. The other group I work with is older adults (particularly those with dementia). And, you know, some of them are stubborn and difficult. Some might be set in their ways and inflexible. However, I get to hang out with a lot of really cool older people.

College students and older adults. Over the years, I’ve come to realize they’re really not that different. College students are in a time of transition. They move away from their families. They live in the residence halls. They establish a new sense of identity. New friends. New social network. They have to adjust to assigned roommates and shared living space. They have to eat when the dining center is open.

Older adults are sometimes in a similar time of transition. They may change living situations. Maybe they move to an assisted living or a nursing home. Maybe they downsize and buy a condo that’s part of a retirement community. They adjust to a new living environment. Maybe new roommates. A new routine. And they re-develop their sense of self.

I’d like to say that college students leave their cliques behind. I’d like to say that mean girls are no longer mean girls, but maybe that’s not that case. Maybe mean girls just regroup and form new bully gangs. Maybe sixty years later they will move to nursing homes and the pattern will repeat. I want to think mean girls grow out of being mean girls, but maybe some of them don’t.

When I was younger, I let mean girls make me feel bad about myself. I was too tall. I was too smart. Nerdy. I wore sweatpants and a jersey everyday. I had a mullet which my mother still refers to as “that cute haircut that was short in the front and longer in the back.” I was a teacher’s pet. I liked Bette Midler and listened continuously to the Beaches soundtrack. I looked like a Fraggle from Fraggle Rock. Those are things that middle school and high school mean girls target. Maybe, as I get older, mean girls will target me because I have dementia….because that might make me different from them. We pick on people who are different from us when we don’t make an effort to understand those differences.

I don’t claim to be able to solve the mean girl issue. However, I do think one of the best ways to get people to be nicer to other people is to educate them. It’s hard to be mean to people when you understand where they’re coming from. We tend to be critical of people we don’t understand. We tend to be impatient when we don’t understand what’s causing people’s behavior.

If you have a daughter (or a son) and don’t want them to grow up to be a jerk, make them have conversations with all types of people. (Yeah, I know that sounds like a contradiction to the whole “Don’t talk to strangers” thing.) The more we talk to people who are different, the more we realize that they aren’t that different. The more we realize that people aren’t so different from us inside, the more we are motivated to be accepting.

I don’t know if I can get residents without dementia to be nicer to residents with dementia. My idea is to do a simulation–so they get a small taste of what dementia is like. I have no idea if it will work, but it’s my little contribution to fight mean girls.

On a related note, if you are a tall, smart, nerdy adolescent girl who enjoys wearing sweatpants and looks a bit like a Fraggle, stop listening to mean girls. Don’t apologize for being your teachers’ favorite student. Bette Midler has a fantastic voice, and you are going to be just fine.

 

 

Reflections on Mass Shootings, Good People of the World, and Dementialand

There was another mass shooting last Wednesday. Well, actually two mass shootings. One in Georgia and another in California.

I wish I could tell you that I was irrate when I first heard about the shootings. I wish I could tell you that I was sick to my stomach when I saw the news. The truth is…I wasn’t.

Maybe I’m a horrible and cold person. Perhaps I don’t care about other people–but I don’t think that’s the case. I think there’s another reason I had virtually no reaction to the shootings.

It’s a tolerance effect.

There are a lot of shootings in America. You can argue about why this is happening. You can fight about gun control. Sometimes I feel like there are so many of us who disagree on what we should do that nothing will change, but I’m not here to discuss any of that.

What we can agree on is that this happens too much. And that is exactly the reason that I didn’t have much of an emotional response.

A mass shooting? Just another day in America.

A couple weeks ago I had to go through an active shooter training at the university where I am faculty member. I guess it’s just something you do if you work at a university. To be honest, I didn’t think much of it.

I feel myself getting less and less (rather than more and more) appalled at each mass shooting. I’m ashamed to tell you that. Each and every shooting is absolutely despicable, disgusting, and appalling. It’s horrifying to me that I seem to be, in a sense, getting used to these shootings, even those that occur on college campuses similar to the one on which I spend quite a bit of my life.

On Wednesday night, I started thinking about how bothered I was that I wasn’t more upset about the shootings. And that’s when I got sad. I got sad that I seem to have hit a level of “acceptance” about mass violence.

I was upset at myself for not being more sensitive. I was upset because the world isn’t the place I want it to be. I was upset because, if I’m being honest, I don’t see things getting better any time soon.

Sometimes the most positive moments come just when you need them. Thursday was a pretty good day.

I took five college students with me to hang out at an adult day center for people with dementia and intellectual disabilities.

Sure, I work with a few college students who annoy me. I can’t lie. Some of them are entitled. Some of them aren’t always honest with me. And some of them are only out for themselves.

But a lot of them are pretty awesome. And these five college students? They are the reason I work as a college professor. They come with me to the adult day center because they want to–not because it will be a line on their resume (although it should be a line on their resume). Maybe they are going to ask me to write a letter of recommendation for them someday so they want to impress me, but that’s not why they come either. They come because they are good people and because they honestly, genuinely think it’s fun to spend time with those who have dementia and cognitive challenges.

Let me tell you about my students. One is a Psychology and Gerontology major who is looking for an internship with hospice in the spring. I was at a conference in November during the time we normally visit this group, and she led the activity–and thanked me for trusting her enough to give her the opportunity. Another (a rare guy in the Gerontology major) wants to someday administrate a nursing home. He happened to be wearing a sharp business suit because he had a presentation for a class later in the day. Our friends with dementia loved the suit. Another is a Social Work major with a Gerontology minor who might want to someday be a school counselor. She’s having trouble deciding what to do with her life because she loves everyone and everything. (I’ve told her several times that this is the best problem to have when it comes to career decision-making.)

I had two late additions to the group. I met one a couple of months ago because she works for university relations and wrote a story about our program for the university website. She has a grandpa with Alzheimer’s and was interested in the community service that we did. She happened to randomly email me the night before and I invited her to tag along. She brought a friend, who turned out to be absolutely delightful.

When we arrived, I stepped in to another room to say hi to a staff member. In about 30 seconds, I came back into the main area to find my college students had all struck up conversations with the participants. It was loud. Lots of people were talking about lots of stuff. Some of it made sense. Some of it didn’t. If I were a person who got a tear in my eye in moments of joy, I would’ve had a tear in my eye.

Here is what is fantastic…I don’t have to coach them to spread out and introduce themselves. They don’t clump together in a corner like kids at a middle school dance. They just start talking to people like they’ve known them for years. If people don’t respond verbally, they don’t care. They continue to interact with them. They roll with the punches.

So we sat around for 45 minutes about talked…about chinchillas and how they take dust baths (yes, that’s a thing), about what a pain it is when your roommate beats you to the bathroom in the morning (something that is common for both college students and adults with intellectual disabilities who live in group homes), about whether India is a state (a guy with dementia insisted it was and my students just went with it).

It wasn’t an earth-shattering afternoon by any stretch of the imagination. It was just a bunch of people in different stages of life with different abilities hanging out, talking, and doing a lot of laughing. Now that I think about it…and I really didn’t think about it until right now…we even had some ethnic and religious diversity. It reminded me that this world can be a pretty cool place.

That day something occurred to me. There are lots of people making a positive difference in our world. Most of us make a difference in small increments…a little bit at a time…just by being who we are. Think about it–you will likely make a positive difference to someone today. It will likely be a small thing, or maybe a bunch of small things, rather than a grand gesture. That’s how life works. It takes a lot of dedication and time (and some chance) to make the evening news as someone who makes the world a better place.

It takes a lot less dedication and time to make the evening news as someone who makes the world a more negative and scary place. It takes less than five minutes with an assault rifle.

 

Welcome to the Real and Non-Perfect Dementialand World (and What to Say if You Want to Make Me Super Angry)

I overheard a bunch of people chatting before a support group meeting. There was a middle-aged guy updating some other family care partners about his wife with dementia. I need to tell you that I am going to change a few details here so this person isn’t as identifiable. It’s pretty typical that I do this, but I’m making a special effort here because I need to tell you about something he said that had me pretty bent out of shape.

The man was well-dressed and handsome. He seemed confident, and I could tell that he was a long-standing member of the group that others looked to for support. I couldn’t help but think he looked a bit like a younger-ish Harrison Ford…think somewhere between Star Wars and The Fugitive. 

He explained that his wife was continuing to live at home, although her condition was progressing. She was now unable to walk without assistance. She needed help with bathing, toileting, and eating. He told the group that his friends and siblings were trying to convince him to considering placing her in a nursing home, but he “could never do anything like that to his wife.”

“I love her too much to put her in a place like that,” he said, shaking his head with a huge emphasis on the word “that.”

I know he loved his wife. I know he was committed to keeping her at home because he cared about her. Yet his comments made me cringe. I cringed because a lot of people love their family members with dementia but are unable to keep them at home. I cringed even more because I knew he was talking directly to some of the people who were unable to keep their loved ones at home, and I worried he was making them feel like crap. Everyone’s situation is different, and his comment came off as judgmental considering his audience.

I do a good job of biting my lip in such situations, but my husband tells me I don’t have much of a poker face. I’m sure I was glaring at this guy. If looks could kill, he would’ve dropped dead before the support group meeting even started.

I have no doubt that this gentleman was a tremendous care partner for his wife. However, he also had some resources that helped him keep her at home; some resources that not all care partners have. First, he was in his late 40’s and in good physical condition. He was able to lift his wife, who happened to be much smaller than he was.

I found out later that he was a successful business owner in the town I was visiting. Although he had a busy career, he could often work at home and had the ability to make his own schedule. In addition, he had the financial resources to hire in-home assistance for a several hours a day. Furthermore, he seemed to have friends and family who were willing and able to come over to give him a break when he needed one.

I give the guy a lot of credit. He had a system in place that allowed him to keep his wife at home at a point when many people with dementia have transitioned to a nursing home. It took organization and dedication, and I have no doubt he did it out of love. He had the option to keep her at home. It’s wonderful he was able to do so, but it isn’t the right decision or a feasible alternative for everyone.

I have to be honest and tell you that his line about “loving her too much to put her in a place like that” really stung. I don’t think he meant to offend, but that doesn’t change the fact that it just plain hurt. It stung professionally because I work with many family care partners who must make the choice to place a loved one with dementia in a facility–not because they don’t love them–but because it is the best option they have with the resources they have available.

It’s a rough choice to make, and I spend a lot of time telling these care partners that they need to let go of the guilt. I care about these people, believe they love their family members, and know how hard they’ve tried to make the right decisions on a difficult road.

Perhaps it also stung me personally. My grandma spent a short time in a nursing home at the end of her life. Although I’m sure he didn’t mean to, this guy had implied that my family didn’t love her enough. We did love her enough. That guy should be glad I didn’t tell all my cousins about his comment.

Love is important. I don’t know what life is without love. Yet, love doesn’t erase our financial, physical, and emotional limitations. We can’t all quit our jobs to care for a loved one 24/7, and not everyone has a flexible work schedule. I talked to a care partner who recently told me that she had exhausted all of her vacation taking her mom back and forth to Mayo Clinic to see a neurologist–before her mom even had an Alzheimer’s diagnosis. Her boss had told her if she had to leave work again due to a crisis with her mom, she’d be fired.

Some care partners have kids. The other day I talked to a stay-at-home mom who takes care of her three young children during the day. It seems as if some members of her family have assumed she can help her mother-in-law with dementia during the day….because she doesn’t work. (I have to be honest in telling you that taking care of three small children seems like more work than what I do at work.) Even the most amazing women have their limits.

Sometimes in our attempts to keep our loved ones with dementia at home, we overlook potentially risky situations. They may be risky to the person with dementia (e.g., wandering, falling down stairs), but they may also be risky to the care partner. It’s no secret that caregiving for someone with dementia can take a toll on a care partner’s heath. I’m talking about both physical and mental health. (No matter how much tiny women love their spouses with dementia, they still can’t lift large men without getting hurt. And people need sleep.)

I can show you research that supports this, but I’ve seen plenty of first-hand evidence as well. Often, it is not a change in the person with dementia’s health that triggers placement in a facility. People with dementia frequently move to nursing homes because their loved ones have increased health concerns and can no longer provide care.

I recently met a school counselor whose husband has Lewy-Body dementia. She knows he will soon need 24/7 care, and she understands that it is not realistic, considering her family situation, that he will stay at home for the duration of his disease. She is struggling with the right time to transition him to an assisted living.

I was livid when I found out that one of her immediate family members had said to her, “If he were my husband, I’d quit my job to keep him at home.” I’m pretty sure she could see the veins in my forehead when she told me this… Sure, if you are financially able to quit your job and this is the right option for you, that’s fantastic. But this is the real world. Who is going to pay the mortgage? And this particular woman said that her job was the only thing keeping her sane on this journey.

Someone I know said something a few weeks ago that has stuck with me. I had what Oprah would call an “aha moment.” This woman told me that her daughter had been raped decades earlier. After the rape, many people made comments that started with “If that were my daughter, I would….” Of course, they would then end the statement with something that she had not done. She promised herself that she’d never make a similar statement to someone who was going through a tough time. After she told me this, I made the same promise to myself.

I’ve heard many people say that they would never place a loved one in a long term care facility. If you want to see the veins in my neck pop out, say that to me. In a perfect world, we could confidently say we’d never make that choice. If this were a perfect world, I could say that my love would keep my family members from living in a nursing home. But this is not a perfect world. Love doesn’t keep people from getting sick or make them better, and it certainly doesn’t prevent nursing home admittance.

Here’s the take home message…You may have had to make the hard decision to transition your loved one to an assisted living, nursing home, or memory care community. (And if you aren’t there yet, this may be in your future, whether or not you realize it.) You probably struggled with it. You hoped the timing was right, but you’ll never know for sure. Some members of your family may have even disagreed with you on some aspects of this decision, and you had to defend your thinking…when you weren’t so sure yourself. There were probably moments where you felt like an awful person.

Don’t let anyone make you feel like you made the wrong call because it’s not the one they made or because they claim it’s not the one they would make if they were in your shoes. Maybe they made a different call, but they are a different person in a different situation. And if they haven’t had to make that call, they should shut up about what they would do–because they really don’t know.

You are not less of a care partner because your loved one lives at a facility. Your responsibilities may be a different than if your loved one lived with you, but you are not less competent, less caring, or less worthy. Don’t feel like a failure. Stop second-guessing yourself. Stop feeling guilty. Stop worrying you’re not a good wife, husband, sibling, daughter, son….

You did the best you could with the options that were available to you. Sometimes life presents us with a bunch of alternatives, and they all suck. (I’ve tried to rephrase that last sentence about ten times but I can’t come up with anything better. Sorry.) You have to pick the one that sucks the least, for you and for the people you love. And then you move on and make the best of it.

Welcome to the real and non-perfect world.

Habits of Sane Caregivers in Dementialand

Sometimes I write for people with dementia. Sometimes I write for people who have no experience in Dementialand. But today…today I am writing for dementia caregivers. And, really, for all caregivers.

If you are a caregiver, things can get pretty rough. I can show you research studies on the rates of clinical depression among caregivers. Spoiler alert–they’re astronomical. (They’re high among caregivers and higher among caregivers of those with dementia.)

Your life has to be lived one day at a time…maybe even one minute at a time. You get angry. You want to say that you’re angry at the disease and not the person, but I know that sometimes it’s not always easy to separate a person and a disease when you’re living on a couple hours of sleep a night.

All caregivers struggle. Some struggle outwardly; others seems strong on the outside but bury their struggles inwardly. You are not alone in your struggle–but I know it seems that way sometimes. Maybe your family is supportive, but it’s likely some of them make your life more difficult rather than easier. I’m guessing some of them make you crazy. Maybe you’ve got some friends…but some of them probably just don’t get it, even if they try.

I’ve put together a list of habits that I typically see in caregivers that maintain their sanity. [And–let me state for the record–a caregiver that stays sane might sometimes feel like they are losing their mind. They might cry. They might get angry. Maybe they sometimes make poor decisions. They mess up (we all do, right?). They could be on Lexapro or another anti-depressant. But they get through…day by day…minute by minute.]

Habits of Sane Caregivers

1. They sleep. Sure, maybe some nights are better than others. But they find a way to sleep. And, when they start getting an unacceptable amount of sleep each night on a regular basis, they find a solution. Maybe this means having someone watch their loved one a few afternoons a week so they can take a nap. If anxiety keeps them from sleeping, they go to a doctor or a counselor. They understand that they can’t caregive without sleep.

2. They leave the house. I know a guy who cared for his grandma who had Alzheimer’s. At one point, he went over a week without leaving the house except to shovel and take the trash out. When other people heard about this, they thought of him as a hero. Staying in the confines on your home doesn’t make you a hero. It sets you up for depression and stress–which sets you up for sub-par caregiving. Get the heck out of the house once in a while.

3. They understand that others can give care, too. A husband I once talked to loved his wife so much that he wouldn’t leave her side….24/7. He didn’t trust anyone else to take care of her. He thought he was the only one capable. He had plenty of people volunteering to come over and stay with his wife for a bit, but he declined their help. Let go of the idea that you are the only one that can provide care. Maybe someone else isn’t going to do things exactly the way you do them. That’s okay. Accept help.

4. They have a sense of humor. I don’t know what makes you laugh. Funny movies. Videos of cute cats on YouTube. Conversations with friends. Comic books. The Ellen Show. Sports bloopers. South Park.  Figure out what makes you laugh and actively seek that out. And don’t feel guilty for laughing.

5. They go to the doctor. The people who are the best about getting their loved one to the doctor when needed are often the worst at seeing the doctor themselves. And if you aren’t healthy, you can’t provide care. So go to the doctor for small health issues…so you don’t end up with big ones. I talked to a guy once who had a sinus infection but wouldn’t go to the doctor because his wife was dying from cancer. His sinus infection didn’t seem important when he thought about what his wife was going through. Ironically, it was his wife who finally told him that he needed to get his butt to the doctor to get some antibiotics–because he was getting increasingly irritable (or “pissy” as she said) since he didn’t feel well. You do the people around you a favor when you take care of your health.

6. They don’t feel guilty. As a caregiver, you mess up. Maybe you thought your wife only needed one pain pill, but in retrospect you should have given her two. Perhaps you tried to make dinner and it was a flop. Or you messed up the time of your grandma’s appointment and she was 30 minutes late. You gotta move on. Consider it a learning experience. Caregiving involves a set of practical skills, and we get better at those skills over time. When you make a mistake, don’t beat yourself up. Learn from it and move on. You have a limited amount of energy. Guilt is a complete waste of energy.

7. They understand that the goal is to have a good day. They understand that their loved one will not “get better.” They are realistic in understanding that decline is inevitable in the case of Alzheimer’s, Frontotemporal dementia, or a terminal cancer. Yet they get that tomorrow can be a better day, even when their loved one isn’t improving.

8. They forget about people who aren’t supportive. They don’t continue to count on people who don’t come through. It doesn’t matter if those people are family or friends. It doesn’t matter if they have known they for decades. They stop letting those people disappoint them. They find new people to support them. Sane caregivers make a conscious effort to surround themselves with people who don’t screw them over time and time again. And when people do screw them over, they don’t spend a lot of time calling them out on it. They don’t have the time to waste on that type of thing. In short, they don’t do drama. 

And a few final notes. If you are a caregiver, listen to me here. It is okay to eat frozen pizza a couple nights a week. It is fine if sometimes you don’t return a phone call. Your neighbors will just have to deal with it if you don’t cut your lawn for ten days. Don’t be too hard on yourself if your flowers die because you forget to water them. (Tip: Buy hanging baskets of flowers. If they die, throw them away and buy new ones. It’s what I do.)

I once overheard two women who were caring for their husbands with Alzheimer’s having a conversation about the demands of their everyday lives.

“You know what we need to do?” one said to the other. “We need to stop feeling bad about all this stupid shit.”

Exactly. 

Passion in Dementialand (A Post About What Gets Us Excited)

A little passion goes a long way.

I’m not talking about relationships here. I’m talking about life. No one has passion for everything they do. We all have to do things that we don’t like doing. That’s part of living in the real world. But we gotta have passion for something or we’re sunk.

My passion is dementia. I don’t like dementia itself. In fact, I really don’t like dementia at all, but I get excited (maybe I should say “fired up”) about educating people about dementia and raising awareness. I cannot count the number of times I have been at a party and was engaged in an intriguing conversation about dementia with someone I had just met–except I was the only one “engaged” and probably the only one who found it “intriguing.”

My husband once joked that we might get invited to more social gatherings if I talked less about dementia. Or maybe he wasn’t joking. Someone once told me that everyone should be passionate enough about something to talk about it enthusiastically for a ridiculous amount of time at a party while boring everyone else in the room. Yep. I can do that.

When someone stops me at Target to ask a question about dementia and I don’t abandon my cart immediately to chat, there is a problem. You should worry about me. Maybe you should even considering planning an intervention of some type–because something’s not right.

I get excited about things other than talking about dementia. A part of me wants to tell you I’m passionate about classical music, art history, and expensive red wine, but I’m not. I’m passionate about college basketball, perfecting recipes for low-cal margaritas, and cheap white wine. (I’m known for buying wine on a clearance end cap at Walgreens. In my defense, our Walgreens has an underappreciated selection of alcohol.) And although these passions may seem less than refined to some, there’s no reason they are less valid.

Maybe you get the same feeling from listening to a full symphony that I do when someone on my team makes a three-pointer or takes a charge. It doesn’t really matter what triggers that feeling, as long as something does.

You may not be as passionate about this dementia stuff as I am (or maybe you are because you are reading this blog) and maybe you don’t like college basketball or cheap wine, but my wish for you is that you are passionate about something. For my stepfather who is a retired forester, it’s trees. If he ever shows up at our house and doesn’t sniff our trees to assess their health within an hour of arrival, I’m worried. One of my mom’s most interesting and notable hobbies is tie-dyeing. If you’ve seen pictures of her, you should know she tie-dyed those t-shirts herself. If I ever get out her tie-dye supplies and she says she’s not really interested in tie-dying, there’s an issue. I’m not saying that issue is dementia, although it could be. It might also be depression or perhaps another medical issue–or maybe just a simple rut. But I’m gonna wonder what’s going on.

When we think of dementia, we think of loss of memory. However, the more time I spend with people who have dementia, the more I realize that loss of passion (more than loss of memory) triggers hopelessness. If you wake up in the morning and have something to be excited about–no matter how big or small it is–there’s hope.

When I think about the individuals I know with dementia, I see many that have held onto a passion or developed a new passion. I know a guy who struggles to remember his wife’s name, but when he’s told that the St. Louis Cardinals play tonight, he’s excited. There’s a woman with Alzheimer’s who used to be a master gardener. She still finds joy in watering the flowers at the adult day center she goes to five days a week. And then there’s the family that tried to stop their grandma from reorganizing her closet every single day–because she had just done it the day before. However, organizing was her passion. It’s what she was excited to do when she woke up in the morning.

I find that families sometimes try to shut down the passions of their loved ones with dementia. Maybe they don’t seem purposeful or legitimate. Maybe they aren’t the same passions that the person had ten years ago. But here’s the thing…and this is advice that works both in and out of Dementialand…

We are not qualified to judge the validity of someone else’s passion. 

I have a friend who is a member of what we call the “sandwich generation.” She is sandwiched in caring for her mother with Alzheimer’s and her young children. One day she noticed her daughter and her mother playing together in the sandbox at a park. At first, she thought about how it looked like a typical grandmother-grandchild interaction. Then her young daughter left the sandbox, and grandma stayed there–playing like a child. My friend sat sitting on a bench, watching her own mother play in a sandbox all alone. She wasn’t quite sure what to think. Then she realized her mother was smiling as she sculpted pictures and designs in the sand with a rake.

You rarely see adults playing alone in sandboxes at city parks, so my friend was not entirely comfortable with this. However, as she thought about it more, she realized it really wasn’t all that different from a monk in a Zen garden raking sand as a part of their meditation. The more I thought about it, the more I realized that playing in a sandbox is no less valuable than how I spend my free time–watching college kids try to put a ball through a hoop.

She kept bringing her mom and her kids back to that same park. She learned to ignore the people who stared at the smiling woman raking alone in the sandbox.

We are not qualified to judge the validity of someone else’s passion. 

I have a lot of friends (both with and without dementia) who have passions that I don’t really get. I don’t have to get their passions to support them in pursuing their passions. And it doesn’t matter what they get excited about as long as they get excited about something. And who am I to say what they get excited about doing is any less valid than what I get excited about doing?

Because of the impact dementia has on the brain, people with Alzheimer’s and related diseases may become apathetic. Often we say someone has “given up,” but that’s not really the case. It’s an actual symptom. The less scientific explanation is that the part of the brain that control motivation and excitement is damaged. Sometimes I will see someone who has “dimmed.” They can’t get interested in stuff that used to interest them–and they can’t find anything to replace those interests.

People who struggle to remember and understand their surroundings may find it hard to be excited about much of anything as dementia progresses, but there are cases when passion remains although memory may have declined. And when that happens, there is a sort of beauty that amazes me.

I often think of a woman who told me about her mother with dementia that didn’t remember she had grandchildren. Her mother eventually moved in with her family and every single morning would seem a little bit surprised to see a couple of small children in the kitchen. When the kids would call her grandma, she would be over the moon–as excited as, well, a new grandma.

“Oh my goodness!” she would exclaimed. “Are these my beautiful grandchildren?”

She didn’t remember she was a grandma, but she still managed to be pretty passionate about it. The most amazing part of this is that her family chose to focus on her passion for being a grandma rather than her need to be reminded everyday that she was a grandma. Rather than being sad that she didn’t remember her grandchildren, they focused on the look of excitement on her face when she realized those grandkids were her grandkids. It was her enthusiasm that allowed them to cope with her loss of memory.

A little passion goes a long way.

Why Dementialand Needs an Orientation

There’s a lot people don’t tell you about dementia.

The doctor says your loved one has dementia. Maybe it’s Alzheimer’s. Maybe it’s Vascular Dementia, Lewy-Body, or Frontotemporal Dementia.

The doctor only has a limited amount of time because that’s how our medical system works. You go home. No one teaches you how to live with dementia. No one tells you what challenges might lie ahead. You think it’s about forgetfulness, but you will learn that it’s much more than that. It’s about brain failure, and your brain is the control center for your body. Dementia can cause a person to be unable to swallow and control motion. If it progresses far enough, a person isn’t able to eat, talk, or walk. Maybe no one told you that.

No one tells you what to do when your loved one forgets they can’t drive anymore or when they insist that they have to go to work when they haven’t worked in 15 years. No one teaches you how to deal with a previously mild mannered mother who is screaming obscenities you didn’t know she knew. What do you do when you have to buy Depends for your dad and he takes them off and tries to flush them down the toilet? How do you make sure Grandpa doesn’t leave the house and get lost when he gets up at 3 am?

When your mom starts saying she doesn’t have any kids, should you tell her she actually has three? Should you explain to her that your dad passed away years ago when she asks when he’s coming home? And if your grandma starts slapping you when you tell her she has to take a bath, should you push the issue? How often does she really need to bathe, anyway? No one told you how to deal with this.

I spoke to a woman this week whose mother has dementia. Her mother constantly apologizes to her, making statements like, “I’m sorry I’m not the mother I used to be. I’m sorry I can’t be there for you.” And then they both cry.

After a few years of this, she finally came up with a response. Now she says, “You may be a little different than you were. I loved the person you were, and I love the person you are now.” She says she regrets that it took her years to learn how to figure out the right thing to say.

No one tells you how to help your loved one through the extreme anxiety that may come with navigating an unfamiliar world. No one tells you what to do when they cry but can’t tell you why they are sad. And what do you do when they get really pissed about something that never even happened? What if they think another family member is stealing from them?

You promised them you’d never put them in a nursing home. But what do you do when someone needs to be with them 24/7 and you have a full-time job? How can you break that promise without feeling guilty for the rest of your life? And how do you figure out which nursing homes are best for people who have dementia anyway? Also, you can’t figure out how you’re going to get your 250 pound father in the car and to the nursing home when he says he’d kill himself before moving there.

And when is it okay to laugh? A woman once asked me if she had done the right thing when her husband forgot to pull up his pants and waddled out of the bathroom with his Dockers around his ankles in front of company. I asked what her response was. She said, “I laughed, but I don’t know if I’m supposed to.”

No one tells you if it’s okay if you aren’t always completely honest with someone who has dementia. I recently talked to a man whose dad died of Alzheimer’s. He said, “I wish I have known it was okay to lie sometimes. That would’ve made it a lot easier.”

Although I’ve referred to how a family is unprepared for the challenges they might encounter, the same is true for individuals who have been diagnosed. How do I cope with changing abilities? How do I tell other people about my diagnosis? Am I able to handle my own finances? What can I do to make sure I remember to take my medication each day? (Once someone with Alzheimer’s said to me, “I’m on some meds for my Alzheimer’s, but I don’t always remember if I’ve taken them. Maybe if I remembered to take it, I’d remember to take it.” How’s that for irony?)

There’s a recent research study by the Alzheimer’s Association that suggests less than 50% of people with Alzheimer’s are even told of their diagnosis. How can you prepare for something when you’re not given all of the information?

According to the Alzheimer’s Association, one out of three older adults dies with Alzheimer’s or a related dementia. In a nation where dementia is so common, how can we be so unprepared? Sure, we wait and hope for a cure…but in the meantime, how can we neglect to provide the education and support so many families need? And why can’t we talk about dementia without embarrassment or stigma?

And although I am confident we will someday find a cure, it will not be today. I’m not a pessimist, but I am a realist. Medical technology has increased our lifespan–which has in turn increased the likelihood that we will experience dementia. In other words, we can save you from all this other stuff so you’ll live long enough to get dementia. Yet, we are completely unprepared for the challenges dementia brings.

And it’s not just about old people. I know several people who were diagnosed in their 30’s. And I don’t think I fully understood this tragedy of this disease until I stood face to face with someone who was my age and had just been diagnosed. She even looked a little like me…I went from knowing ‘this could be me someday’ to ‘this could be me.’ There’s a difference.

Alzheimer’s is a fatal disease. Lewy-Body Dementia and Frontotemporal Dementia are terminal illnesses. Dementia kills people. I hate to be this blunt, but I think society’s lack of understanding of the terminal nature of dementia stagnated research for many years. We think it’s just about old people becoming forgetful, but it’s not just about old people and it’s not just about forgetfulness. It’s about total brain failure. Alzheimer’s has no survivors. You will die from it or with it.

I have to be careful when I mention that dementia is fatal. Many individuals and families impacted by dementia don’t realize this. In the past, I have stated this in a very matter-of-fact way, but sometimes it’s the first time that people are hearing it. No one tells them.

There are also positive things that no one told you about. You might smile because your mom laughs at something that she sees…but no one else sees. You don’t care that she’s having visual hallucinations or has issues interpreting what she sees. You’re just grateful she finds humor in something.

It might make your day that your dad thinks he is a New York City subway station as he wanders around the nursing home. After all, he loved the subway and New York was his favorite city. Grandma has been retired as a teacher for many years, but she conducts class in her memory care unit using dolls as her pupils. She finally has a sense of purpose again, and it makes you happy. No one told you that you that such things would make you happy. You didn’t realize the challenges of caregiving for someone with dementia, but you also didn’t know about these unexpected moments in which you would find joy.

No one told you that some friends and family would abandoned you. Sure, maybe they say that they pray for you and think of you all the time, but they aren’t there offering to run to the grocery story or stay with dad so you can go out to lunch. On the other hand, no one told you that some people would step in and amaze you. Maybe they’re not the support system you expected, but they get you through the day.

I advise incoming college freshmen at summer orientation each year. When young people graduate high school and progress to college, they must adapt to a new set of norms, an entirely different culture, and different goals. What worked in high school may not work in college. For that reason, there is an extensive two-day orientation to Collegeland. It includes sessions on financial issues and tips for success. There is no such orientation to Dementialand.

I wish there were an orientation because there are a lot of things about Dementialand that no one told you.

Small Victories in Dementialand

I try to respect people’s privacy. Within my blog, I change names and identifying details of individuals. And, when possible, I ask for permission to tell stories.

Almost without exception, people want their stories told. They are excited about the possibility they have had an insight or experience that others might find interesting or useful. They may not want their names given, but they want their stories out there. They want their stories told not because they want attention or credit, but because their story might help someone in a similar situation. And I love that most people are like this. When it is possible, they want to use their own struggles to make life a little easier for someone else, even if they’ve never met that someone.

I had a “first” of sorts this week. I was out running errands wearing bleach-stained sweats and a baseball hat. It was one of those days when you hope you don’t see anyone you know, but I did. I happened to run into an acquaintance, Shirley, who reads my blog, and she told me a story.

After she finished the story and was walking away, she said, “If you think this story could help someone else, please feel free to repeat.” I do think it could help someone else, so I will repeat.

Shirley’s mom has Alzheimer’s and lives in a nursing home. At this point, she rarely remembers family members, and Shirley has started calling her by her first name because “Mom” doesn’t make sense to someone who doesn’t remember she has kids.

A while back, Shirley and a family friend were visiting the nursing home. They had brought in some Blizzards from Dairy Queen and were helping Shirley eat hers.

With a mouthful of Oreo Blizzard, Shirley’s mom said to Shirley, “Honey, you make good food. Is there a comment box here? I want to write a comment about how nice you are. Maybe you’ll get a raise.”

As Shirley told me this story, tears welled up in her eyes. She explained that as a kid she had always sought her mom’s approval but never felt like her mom was able to express admiration or pride. She never felt quite good enough for her mom. Despite her mom identifying her as a nursing home staff member, Shirley had this overwhelming feeling of satisfaction that she had done something that met her mom’s approval.

As they left the nursing home, the family friend said to Shirley, “It’s so hard for me to watch how your mom doesn’t even recognize you. I feel so bad for you.”

I talked with Shirley about how two people can perceive the same situation very differently. Although the friend saw this interaction as sad, Shirley left the nursing home with a sense of peace and contentment she hadn’t felt in a long time. What her mom had said was so meaningful that it took her breath away. And her friend simply saw a woman with dementia who no longer recognized her own daughter.

Dementia is not a “look on the bright side” type of thing. It’s a fatal disease that leads to emotional and physical pain. It gradually robs us of our friends and family members. We can’t prevent it, and we can’t slow its progress. I would never tell a family or individual to see the glass as half full after there is a diagnosis of Alzheimer’s or a related dementia.

And, yet, sometimes there are these poignant moments, and you have a choice about how you interpret them. When you are able to find a positive way to interpret an interaction with someone who has dementia (when you could interpret it negatively), you win. It’s absolutely a victory.

Sometimes you don’t get a lot of victories with dementia. So you gotta grab them when you can.

In that moment, it was Shirley 1, Alzheimer’s 0. Maybe the score would be different the next day, or even in 10 minutes. But you only focus on the game you’re playing right now.

Thank you for sharing that story with me, Shirley. I rarely cry, but you almost made me tear up in the snack aisle at Walgreens.