Caregiving Heroes and Saints

Doris is a hero. That’s what people tell her anyway.

When her sister’s Alzheimer’s disease progressed enough that she could no longer live alone, Doris moved her into the spare room. After all, she had experience as a caregiver. Her husband had passed from cancer the year before.

Doris had already given up a lot to care for her husband. She took early retirement from a job she loved. She quit volunteering at the hospital. She stopped paying for her gym membership and gave up her passion for yoga.

When her sister moved in, Doris found a routine that focused on the essentials. Grocery shopping. Errands. Meal planning. Doctor’s appointments.

As time progressed….Medications. Baths. Toileting.

Doris’s sister starting getting up in the middle of the night, and sleeping most of the day. Doris slept enough. But not really enough. She stopped scheduling herself appointments at the dentist and the doctor. She stopped going for her daily walk. Her interactions with friends and neighbors became limited.

Her family calls her a hero. Or a saint. They act like she’s Mother Theresa.

But the problem, according to Doris, is that they forget that she is a freaking human being. They seem to think she has magical super powers that make her an amazing caregiver.

But she doesn’t. She’s just a 55-year-old Midwestern widow who is doing her best.

And she’s tired.

She didn’t want to quit her job. She misses yoga class and her friends. She wishes her sister could carry on a decent conversation, and she’s sick of cooking.

She promised her sister that she’d never place her in a nursing home, and she’s starting to wonder if she will regret that promise.

She loved her husband. She loves her sister.

It’s important to her to care for those she loves, but it’s exhausting.

She does a lot of laughing, and she does some crying. Some days she thinks she’s doing well. Other days she wonders if she’s failing. Every once in a while, she gets a good night’s sleep and feels like herself. Most days she feels like someone took her brain out of her head and her body just carries on.

A while back, she took an online quiz that claimed to diagnose her with “mild depression.” She had expected “moderate” or even “severe” depression, so she found it reassuring. She had promised herself if it hit the “moderate” category she’d consider counseling. Maybe telehealth. She’s not sure if someone could come stay with her sister while she went to an appointment.

She feels it’s a privilege to care for others, but it’s hard. And when her sister in gone, she’s not sure what will be left of her.

Because she’s a human being. Just a regular human being.

The Hilarious World of…Dementialand?

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?


Playing Dear Abby in Dementialand (And My Overdue Apology to My Muscatine High School Peers)

Today’s blog post is a little different. I am here asking for your help. Yes, you.

I am talking to you.

I am asking you to submit a question. Obviously, the question should be limited in scope because I don’t know everything–or so I am often reminded by my husband. I can answer questions about Alzheimer’s and related dementias. Heck, I can even answer questions about The Bachelor, which you know I am keeping in my closet if you read last week’s post.

However, that’s about where my knowledge ends. I would avoid questions about remodeling kitchens, how to avoid backing into your garage door frame, and general cooking. Those are topics I am have shown that I am not qualified to advise on.

In future weeks, I will focus on answering questions. Maybe I’ll answer one in a post. Maybe I’ll answer six in a post. I haven’t decided on a format yet. However, find that box below where it says “LEAVE A REPLY” and write me a question. If you would rather send me something anonymously, you can email me at Sometimes I find reader emails in my spam folder months later, so put “Dementialand” in the subject line and I promise I won’t miss your email. I’ll be like Dear Abby with a slightly more modern haircut and without the bright red lipstick.

This Dear Abby thing isn’t new to me. I wrote an advice column in my high school newspaper. In four years of high school, only one person wrote me for advice. (And I remember the letter vividly. It was from an anonymous kid who thought he might be gay. My friend Lory who is a counselor helped me write a response. I still think about that guy and hope he’s doing okay. If you’re out there, please tell me you’re okay.)

Full disclosure to my high school peers….I made up the rest of the letters. Yep, I asked myself for advice and then responded. And this is the very first time I’ve fessed up to this. I thought I’d go to my grave with that weighing on my heart, but it feels good to get it out there.

Sorry, Muscatine High School. I deceived you. But really, it was sort of your fault for not writing me any letters!

Readers, do not make me repeat this behavior. Shoot me some questions!

Shrinking and Cluttered Closets in Dementialand

I don’t often get the opportunity to chat with people in the very early stages of dementia. The nature of what I do more typically puts me in the presence of caregivers and–when I am with people who have dementia–those who are in need of extensive care. However, sometimes I get the opportunity to chat with an individual who I certainly would not have identified as having dementia had they not told me of their diagnosis.

Jackie (not her real name) was such a person. A petite woman who looked to be in her early 50’s with a blonde bob haircut and funky glasses, she struck up a conversation with me at a senior fair where I had earlier presented on family dynamics and caregiving. I expected her to tell me that she was a caregiver for a parent, but she told me that she had recently been diagnosed with younger-onset Alzheimer’s. I asked how she had been adjusting to her diagnosis, not knowing if this was the appropriate way to phrase the question.

She shrugged and told me she wasn’t okay but that her life wasn’t over either. She said she was working on adjusting to this disease rather than fighting it. She believed working with it rather than against it would work best. I liked her perspective, so I asked her to tell me more.

“I had to give up some stuff, so I gave up taking care of things others can take care of themselves,” she said.

She gave me an example.

She used to pack a suitcase for her husband when he traveled for work. Before her diagnosis, she was feeling increasingly tired and frazzled. Her husband was headed out of town, and she decided she wasn’t up to packing for him.

“You know what he said?” she asked me. “He said, ‘No problem.'”

And I guess it wasn’t a problem.

“So he’s perfectly capable of packing his own suitcase?” I inquired. She laughed.

She explained that he often forgot his toothbrush…his deodorant…his razor…(which he could easily buy at his destination). And that he didn’t know how to fold his clothes so they didn’t wrinkle.

“But,” she told me, “The world didn’t end. Wrinkled clothes don’t kill a man.”

(The next time my husband walks out of the bedroom headed to work in wrinkled clothes and I debate whether to say something, I’ll remember that phrase. Wrinkled clothes don’t kill a man.)

She also explained that she no longer gets up early when her kids and grandkids visit to make them breakfast. She knew she would have a limited amount of mental and physical energy, and she felt like getting up a little later made for a more pleasant day for everyone.

“You know what?” she asked. “They just eat cereal. They’re fine with it.”

Jackie told me that it took an Alzheimer’s diagnosis to put her in a position to stop feeling obligated to do things that her family members could do for themselves.

“I thought that my family would fall apart if I didn’t do all these little things for them. Turns out, they can take care of themselves,” she said.

All of us have limited time and energy. All of us have to decide how we want to spend that limited time and energy.

Jackie decided she didn’t want to spend it packing a suitcase for her husband and getting up early to make a huge breakfast for her family. More power to her.

Whether or not we have an Alzheimer’s diagnosis, we can consider whether or not we are spending our time and energy in ways that work for us. I should add that energy doesn’t only represent physical energy. We are talking emotional, mental, spiritual energy as well.

My husband was talking recently about conceptualizing how we spend our efforts as a closet. Once the closet is full, we can’t fit anything else in. Some of us can do more than others, but we can all only do so much.

If you know me at all, you know I do well with literal rather than figurative. However, this closet deal really spoke to me. When I am asked to join a committee or take on a new project, I think of my closet. If I say yes, do I need to throw something else in the proverbial goodwill pile to make room for the new endeavor? Do I have to make a decision to be less invested in something I’m already doing? Will I end up jamming everything into the closet and being less proficient at everything I do?

Here are some of the things in my conceptual “closet” in no particular order:

  1. Writing this blog
  2. Teaching my college classes
  3. Overseeing interns
  4. Speaking engagements
  5. Taking care of our dogs and cats
  6. Watching “The Bachelor” (most weeks this is a two hours commitment!)
  7. Keeping the house clean-ish
  8. Doing Next Level Extreme Fitness
  9. Going to athletic events at our university
  10. Being on boards/committees on campus and in the community
  11. Making overnight oats every night for my husband and me
  12. Administrative responsibilities at work
  13. Working on research articles
  14. Running–when it’s nice outside
  15. Visiting memory care community, adult day centers, and nursing homes
  16. Serving as NCAA Faculty Athletics Rep at our university
  17. Advising Family Service and Gerontology majors and mnors

Some weeks my closet seems pretty dang full. (To be fair, other weeks are a bit more sparse.) A few months ago, I felt like I was having trouble keeping my closet manageable. Everything was overflowing. I felt like the door wouldn’t even shut, so something had to change.

I could have quit teaching my college classes. I could have just gone MIA on campus. I could have stopped coordinating the Gerontology major. No more responding to emails from other areas of the university or turning in reports about the major. I could have not shown up at speaking engagements. Because these are responsibilities related to my paycheck and my professional reputation, tossing them out of the closet didn’t seem like a good option.

I had to look elsewhere to make a change. For years I had taught fitness classes at our community rec center. I quit.

Could I have given up “The Bachelor” instead? Yep, but I didn’t. Could I have decided to keep the house less clean?  Definitely, and I’m not a clean freak anyway. I could have even chosen to forget about this whole blogging endeavor except that I recently invested in a whole year of an upgraded membership to WordPress so you all wouldn’t have to see ads. I guess I have to blog another year to make that worthwhile.

I have a limited amount of time and energy to spend as I wish, and teaching fitness classes is what I pitched out of my closet for the time being. It’s the decision I made. Someone else might have made a different decision. Someone else is not me.

If I were diagnosed with Alzheimer’s or another disease, my time and energy would be more limited, and I would likely have to make more decisions about what I throw out of my closet. (If you are following me with this whole closet analogy, picture that closet getting smaller.) This is what I see people in the early stages of dementia doing whether or not they realize it.

You can also picture that shrinking closet for someone who has depression, cancer, or fibromyalgia. The more limits life puts on us, the smaller that closet gets. As health declines, the closet may be 10% of the size it used to be. It’s increasingly important to evaluate what the heck you are trying to manage in that shrinking closet.

It’s adaptive to acknowledge that your closet is no longer the size of the one Mr. Big built for Carrie on Sex & the City. It’s a closet you’d find in a studio apartment in downtown Chicago. Accept it, and evaluate its contents. You can focus more positively on what is left in your closet when you throw out things that are no longer working for you.

I should also add that an empty closet is…empty. Even a tiny closet needs some contents. We must have something we perceive as meaningful in which to invest ourselves. When we lose that, we lose our purpose.

Sometimes you find, like Jackie did, that giving up some of the things in your closet isn’t as traumatic as you might predict. Many of us, Jackie and myself included, think we are irreplaceable. I didn’t know what my fitness class participants would do without me. You know what? They still exercise–just with a different instructor. I miss them, but they are fine.

Similarly, Jackie’s husband is able to manage to pack for work trips on his own. Even a crisis like forgetting a toothbrush isn’t really a crisis. And although Jackie’s family enjoyed the breakfast she made, they are fine without it as well.

I once spoke with a woman who had cancer about the minimal energy she had while doing chemo. I remember her telling me that she couldn’t do everything so she had to choose what was most important.

“But really,” she told me, “that’s what I should’ve been doing all along.”

So here goes my attempt at something poetic and meaningful, keeping in mind I’m notably bad at poetic and meaningful.

Whatever life throws at you, may you keep your closet full but not cluttered. We can’t control everything about our lives, but we can control where we invest our time and effort. We can’t invest time and effort in everything. We may have less to invest than we’ve had in the past. Invest it in the right things for you. Don’t let how other people organize their closet make you feel like you’re organizing yours wrong. They aren’t you. They may have a bigger or smaller closet, and they may have different priorities.

For now, I’m keeping The Bachelor in my closet. Don’t judge.




The Most Difficult Dementialand Post I Have Written to Date (aka What Dementia has in Common with Depression)

This was not the post I intended to publish this morning. In fact, I have a post written on police officers and how they work to help those with dementia…but that has to wait until next week.

My heart is somewhere else right now.

Wednesday there was a suicide on the college campus where I work as a professor. Her name was Katie, and I didn’t know her. In fact, this was her first semester here. Her peers and professors tell me she was well-liked and bright with a smile that lit up a room. She had plenty of friends and a supportive family. Yet, she struggled with depression and anxiety.

The more I hear about Katie, the more I relate to her. I even lived on the same residence hall floor where Katie lived and died. I’ve never been in a position where I considered taking my own life, but I was once a college student with clinical depression. I felt like a failure because, despite knowing I was loved and feeling like I had a bright future, I couldn’t find a way to get rid of a plague that kept me from being me. I lost a drastic amount of weight. I was exhausted but only slept a couple of hours a night. I just wanted to feel normal. I knew there was nothing in my life horrible enough to warrant how I felt, but I still couldn’t make myself feel better no matter what I tried.

This continued for three months before I marched myself to the student health center and said I thought I had depression. The nurse treated me with strikingly little compassion. Little did I know it was the beginning of a journey (still on-going) of working with health care providers with various levels of knowledge and kindness. I got through it, though, and very slowly things got better…until they got worse a couple of years later. I survived that, too, and I’ve survived a few more major depressive episodes since. I have no doubt it’ll happen again, and I’ll endure that as well.

Fifteen years later, I’ve finally come up with a way to describe depression…or at least my experiences with depression. It’s like getting a phone call with tragic news (like the death of someone you love or finding out a family member has cancer). Your stomach turns. A weight settles on your shoulders. You don’t know how you will cope with whatever news you’ve just been given. You don’t know what to do next. That’s what I feel like when I’m depressed–except there’s no tragic news. I walk around carrying that feelings for days or weeks at a time. It still happens, but it’s less scary than it was that first time. It’s less scary because I know that I won’t always feel that way. It can and will get better.

I’ve come to terms with taking anti-depressants for the rest of my life. They don’t cure depression, but I don’t know where I’d be without them. (And, yes, I am prepared for the onslaught of emails and comments I may receive about how I should stop taking anti-depressants and—insert your genius solution here—turn to God and more specifically YOUR church, eat more good fats, find a good chiropractor, etc.) I don’t think everyone should be on an anti-depressant. I think there are many people who will need them at certain points in their life but then be able to stop taking them. And then there are people like me…who may have to take them their entire life. Ten years ago my goal was to wean myself off anti-depressants. Now my goal is to be happy.

One of the most difficult aspects of being a person with depression is listening to other people make comments that imply you just aren’t trying hard enough to be happy, that you’re making a decision to be miserable, or that you just have a bad attitude. I have been told that I have no reason to be depressed and that there are lots of people worse off than me. People have said that I just need to think more positively. When I have been at my lowest, I have been told to cheer up. (Gosh! If only I had thought of that! How helpful!) It’s similar to telling someone with no legs to go run a 5k. Depression is an illness, not a choice.

A few years ago, I overheard a conversation at a nursing home that helped me relate to people with dementia on the basis of my own depression. A nurse asked a resident if she had eaten her evening snack yet. The resident said she didn’t remember. The nurse told the resident that she wasn’t supposed to give her more than one snack, so she’d have to think really hard to remember if she’d eaten her snack. The resident, understandably, got angry.

“Don’t you think I’d remember if I could?” she asked. “Do you think I’m just not trying?”

Not all people with dementia have that much insight, but she had a point. And I made a connection.

There are people who think having depression means you’re just not trying hard enough to be happy. There are also people who think having dementia means you’re just not trying hard enough to remember.

Physical illness and injuries are easier to understand–not just for those around us but for us. I’ve had kidney stones and knee surgery. I never felt betrayed by my kidneys or my left knee. I have felt betrayed by my brain when I’ve struggled with depression. While my kidneys and my knees are part of me, my brain is…me. I feel like my battle with depression is a battle against myself. And it’s hard to wrap my mind around that. How do you separate your illness from yourself when your illness is at the core of who you are (your thoughts, your emotion, your cognition)?

Someone with Alzheimer’s once told me that she felt like her brain was cheating on her. It was a traitor. She told me that she was trying so desperately hard to do everyday things–things that came easily to her in the past–and her brain just wasn’t on board. When she was trying harder than she ever had in her life, people around her were doubting she was trying at all. Her awareness of this made me particularly sad, but I am sure many people with dementia have similar feelings whether or not they are able to express them.

A few years ago, I had a college student who had been in Iraq. He came home with a brain injury that caused dementia-like symptoms as well as anxiety and depression. I tried my best to accommodate his desire to continue as a college student and finish his degree. One day in my office he made a comment about being jealous of veterans who came home with more “visible” injuries, like amputations. He told me that they were always being thanked for their service and called heroes. He felt he was just perceived as a slacker who had given up on life–when he was trying harder than he had ever tried before. For days, I thought about how ridiculous it seemed that a person would be jealous of someone who lost a limb at war, but I really did get it.

Physical injuries and illnesses are somehow more legitimate and heroic than health issues that we cannot see with our eyes. I’ve seen this phenomenon when people with dementia are humiliated for not remembering loved ones (“You know who that is, Grandma!”). We do a better job of being understanding when someone can’t walk than when they can’t remember. We can see their legs wasting away, but we can’t see that their brain showing signs of decay and shrinkage…even when that’s exactly what may be happening.

This post is a bit of a “coming out” for me. I’ve come a long way from being that depressed college student living on the 5th floor of Bender Hall. I still have depression. I’m not cured, and I’ve accepted that I never will be.

I hesitated to publish a post where talked about my own struggles with depression. In fact, I even sent a text to two friends last night who I knew would encourage me to go ahead and hit “publish” because I knew I needed the push.

I am ashamed to admit that I hesitated to publish this because of the stigma that surrounds mental health issues like depression. However, that’s not fair of me. It’s not fair of me to be “in the closet” about my depression when I continually applaud people with Alzheimer’s and other dementias for speaking out in a world that still stigmatizes dementia.

I can’t encourage people to speak out about dementia if I’m unwilling to speak out about depression.

Let’s get over the stigma.