People need a sense of purpose. They need to be needed. It’s important that we all have a sense that what we do is meaningful and important.

You might anticipate that this post is about individuals living with dementia. You might think I’m going to write about how important it is to support them in leading lives that provide a sense of meaning. You are probably thinking I’m going to talk about how to allow those living with dementia to keep doing what they love—whether that be baking pies or going biking.

But I’m full of surprises.

This post is about care partners.

But I’m going to start by talking about myself…because that’s just how self-centered I am.

I feel needed.

Sometimes I feel much too needed.

Last week I wrote from O’Hare Airport, and today I write from an adorable coffee shop adjacent to the Wisconsin-Stout campus. (I’m a guest lecturer here today.)

I’ve got a couple of voicemails that I need attention. And 22 emails have rolled in since I last checked my email a couple hours ago.

A couple people at the university need information from me to finish up reports they are writing. A few students need to schedule an appointment with me. Three people need me to follow up with them regarding references for current or former students. My secretary needs me to let her know when my teaching assessments should be done.

Even my Roomba needs me. I just got an alert on my phone that his right wheel is stuck. (You have to name your Roomba on the app, so my alert says “DJ JAZZY Roomba’s right wheel in stuck.” I actually have guilt because I’m four hours away and can’t help him out. And yeah, it’s definitely a “him.”)

Right now, I wish no one needed me. I want to sit here and write a blog post and eat my delicious Rice Krispie treat and drink this latte.

But I know that I should be careful what I wish for… I’m overwhelmingly needed right now, but I know that I’d feel lost if no one needed me. If I get to a point in my life where I don’t feel needed, I’ll struggle.

That’s the thing with life. Many of us going from being overwhelmingly needed during young and middle adulthood. We are needed by our spouse. We are needed by our kids….and even our pets. As they get older, parents may need us. We are needed by work—our clients, our colleagues, our bosses, our students. We are needed by the PTO, the local Democrat/Republican group, the neighborhood association, and whatever other organizations we have attempted to blow off when our plate is full. They keep calling.

We are needed.

And sometimes spread too thin.

Yet many of us will face a time in life where we feel like we aren’t needed.

I could mention that people with dementia often lose their sense of purpose and don’t feel needed. I must admit that their families, care partners, communities, and society are thefts of that sense of purpose as much as dementia itself. And that’s where I could take this post…but I’ll leave that for another day.

Today is about care partners. Many of you feel awfully needed. Some of you can’t leave the house because you don’t feel comfortable leaving your loved one alone. You are needed to physically be in the space of your loved one. You are needed mentally to make decisions—which your spouse or parent or sibling seem less able to help with lately. You are needed to console your loved one with dementia when they are mad or upset or frustrated by the challenges presented by dementia.

I hope you have support in all of this, but I know that many of you don’t.

And some days you might just want to take a “sick day.” Walk out the door. Go for a drive. Turn your cell phone off.

But you don’t really have that option.

You are needed.

When I said that thing about how people need to be needed…maybe you are a care partner who laughed because you are needed at about 14 on a scale of 1 to 10.

(I talk to few people who feel needed the exact right amount all the time. Most people feel too needed or not needed enough. Unfortunately, being needed can be feast or famine.)

A woman I spoke with recently is a care partner for her husband. He has Lewy Body dementia and lives with her in a condo that overlooks a golf course. In years past, he spent a lot of time on that golf course. He didn’t pay much attention to what his wife did. Life was golf and work, and that was about it. He didn’t have a lot of room left over for his wife.

But…now he needs her.

He really, really needs her.

He can’t drive, so he depends on her when he wants to go somewhere. He no longer feels comfortable going through a check-out line because he struggles with counting money, so she must accompany him to the store. He even wants her around when he spends time with his buddies. He feels better if she’s around in case he struggles, and (for the first time in their marriage) he tells her she’s important to him.

For the first few years, she appreciated how dementia had made them closer. Sure, it was difficult knowing he had dementia, but his increased reliance on her and his appreciation for her are what she sought her entire marriage. It was dementia that finally made them—in her mind—a team. And she was necessarily the leader of the team.

But now—his dementia is progressing. She doesn’t want him to put the trash to the curb or get the mail because sometimes he just doesn’t come back. She has to find a golf cart and go searching for him on the course. In the past few months, he’s started needing help to get ready for bed. She tells him to go put on his pajamas, but he usually comes back down wearing the same clothes he’s worn all day. When he takes a shower, he steps out into the bathroom with dry hair. He doesn’t remember to wash his hair—or maybe he doesn’t remember how to wash his hair.

She liked being relied upon, but now she feels too needed. She can only be in a different room for about 30 seconds before he yells for her, confused about where she’s gone. She’s tired of being needed. She’s talked with his doctor and family about memory care, but she struggles to give up her role as his “person.” As much as she’s frustrated with his reliance on her, she can’t fathom him relying on others. She tells me that over the last several years she has grown to identify herself by her role to him. As tired as she is, she knows it’ll be a struggle to let that go.

She’s gone from unneeded, to needed, to overneeded. And she fears going back to unneeded. She knows it’ll happen in time. She understands he will only be around a few more years…and then what?

I know quite a few care partners who have struggled with the “Then what?”

Being a care partner can be rewarding, time-consuming, demanding, joyful, exhausting, and life-limiting (feel free to insert your own adjectives here). But when it’s over…

Then what?

How do you go from being a care partner…to not being a care partner?

How do you go from being overwhelmingly needed to significantly less needed?

For some people, it’s a relief to some extent. You don’t have to apologize if your loved one dies and you feel relief. It’s okay. It’s normal.

But for many people a sense of purposelessness comes along with that relief.

What is next? How do I move on? What am I even doing here?

I could tell you to find a new sense of purpose. Volunteer at the Alzheimer’s Association. Get a part-time job. Start babysitting the grandkids. Set a goal to walk a 5k. But I know it’s not that easy.

When your journey as a care partner ends, you may look around and realize you have a lot of time. Maybe you notice you have more energy—both mental and physical.

I want you to find a way to spend that time and energy. I know that you have a lot to give, and that this world needs you.

But you have to find your next journey. I believe you will.

And I need to answer some emails and voicemails.

Sometimes I think I’m not going to get my blog post together for Monday. And then life gives me a gift…

This gift came in the form of a missed flight out of Chicago which has left me sitting at an airport Chili’s with a glass of wine and my laptop.

Okay–if you think I am that positive of a person, you obviously don’t know me. I was mad I missed that flight, especially after sprinting from terminal L to terminal G at O’Hare. I am still mad that I missed that flight.

It didn’t help that the gate agent asked (after telling me I missed my flight by a couple minutes), “How is your day going, ma’am?”

Listen you overly chill Millennial with those hip glasses, it’s a bad day by definition when you miss a flight. You’d think you’d know that if you work at an airport. And did you see the shoes I was wearing for that 3/4 mile sprint? They weren’t flats.

But, fortunately, I am sitting here and have an idea of something to write. And this blog is going to get done. Here goes…

A few people I know who live with dementia have been accused of not having dementia.

One guy who I know was diagnosed six or seven years ago. He is still able to travel to conferences on dementia and give presentations about his experiences. He is active (and insightful) as an advocate on social media. Therefore, according to some, he must not have dementia after all. He must be faking in order to get attention and accolades for his advocacy.

Um….okay….

I have heard stories of people faking cancer to make money off a bogus GoFundMe account, but I must say I have never heard a confirmed story of a person faking dementia. Never.

Let me know if you can provide me proof that someone has faked dementia. I just don’t think it’s the type of thing people fake. I think people usually choose less stigmatized conditions and those that naturally lend themselves to fundraisers. (We don’t do generally do fundraisers for dementia like we do for cancer or ALS, but that’s a post for another day.)

I’m not sure someone has ever thought, “Hey, I want people to pay attention to me. Let me pretend I have dementia. Yeah, that’s the ticket!”

I also know quite a few people who have been told by family and friends that they must have been misdiagnosed.

But you can still have a good conversation. I think you should go back to your doctor. I don’t think you have that dementia.

If you’ve had this for 5 years, and you can still hold a part-time job, there’s no way you actually have it.

I don’t know why they’re saying you have dementia. You can read and write and take care of your own hygiene. Did you tell them you can do all that?

You remember your childhood phone number AND all the names of girls who lived on your dorm floor in 1975. Your memory is too good for this dementia thing. You need a new doctor. 

When someone is negotiating an illness, one of the more hurtful things you can do to is deny that they have that they have illness in the first place. Maybe you straight-up accuse them of faking a medical condition. Maybe you point out (based on your own “medical expertise”) that the condition doesn’t fit their symptoms.

When I think about this in relation to dementia, it comes down to one thing:

People don’t understand dementia.

If someone doesn’t “look” like they have dementia, we assume they don’t have dementia. But what does dementia “look” like?

To most people, dementia looks bumbling and stumbling…not being able to remember names…not being able to read or write or brush your own teeth…not being able to make meaningful contributions to society…not making any sense…being completely dependent…looking unkempt…wearing a diaper…existing in a nursing home waiting to die…

To most people, dementia looks old and tired. If you’re not old, it can’t be dementia. Maybe a brain tumor. Maybe schizophrenia. Maybe even depression. But not dementia. Dementia is for old people.

I’ve heard that more than 50 million people worldwide live with dementia, and the World Health Organization (www.who.int) estimates the number at 47 million. That’s a lot of people. And those people don’t “look” the same.

We are missing that this condition looks very different on different people. We are missing that it looks very different in the early versus end stages. We are missing that the only predictable thing about dementia is that it’s unpredictable.

We need to stop expecting people with dementia to look, act, and be a certain way.

And we need to expand that to everyone in any type of struggle–not just dementia. Oh wait. I think that means everyone. Because who doesn’t have some sort of struggle? And I would add that people can struggle and thrive at the same time. In fact, I’m proud to say I both struggle and thrive just about every single day.

We can’t judge someone’s struggle (nor their victories) at first glance. We need to realize that we don’t know the first thing about what someone is going through….and sometimes this holds even if we know them.

As I look down the wide hallway of this bustling airport terminal, I would guess I can see about 300 people. I’ve seen hundreds more pass by in the past hour. Statistically, I know some of these people have dementia.

Even though I’m well-versed in dementia, I have no idea which of these people are impacted. Sure, I could make some guesses…Of course, your risk increases by age, so if I had to bet money, I’d guess the older individuals are more likely to have dementia. But sooner or later I’m gonna lose some money because it’s far from unusual to have someone diagnosed with a dementia-causing condition in their 40s or 50s.

I see an older guy sitting by a terminal–looking a bit overwhelmed, really tired, and a tad confused. A part of me wants to think that looks like dementia, but I’m guessing I looked pretty much the same after I sprinted through three different terminals before finding out I missed my flight by two minutes.

Earlier I overheard an older woman asking for help because she couldn’t find her flight listed on the monitors. As it turned out, she was looking at arrivals rather than departures. I could say that sounds like dementia, but I’ve made the same anxiety-inducing mistake a dozen times.

A woman across the restaurant from me is using a wheelchair. I would estimate her to be in her 70s. She sits with her husband, but he seems to be ignoring her. Maybe he feels she’s not capable of good conversation…due to dementia? Or, then again, maybe he’s just a jerk? Or maybe they have been traveling together for weeks and are just done talking for now? I could say a wheelchair makes me think dementia, but I know better than that.

Dementia doesn’t look a certain way.

One day a while back I was struck at how different dementia can look.

In the morning, I had visited a memory care community where a woman I had known was dying from dementia. She seemingly hadn’t recognized family for several years, and she was been non-verbal for many months. At one point, her family had tried insisting that a doctor put in a feeding tube, but they had relented when they talked to a hospice nurse. Her granddaughter was a friend of a friend, so I stopped in.

“I didn’t know Alzheimer’s did this to people,” she said. “I just thought she’d get forgetful and tell the same stories. I didn’t know she’d die from it.”

And she did die from it….about four hours later.

In the afternoon, I got a phone call from a woman in a local state who was organizing a conference and wanted to know if I might be available to come give a presentation. My impression of her was that she was professional, eloquent, and organized. We chatted about the challenges of organizing a conference–contacting a caterer, getting people to register in advance, fear of audiovisual resources not cooperating, speakers getting sick or flaking out. It was only in the last minutes of our conversation that she shared matter-of-factly that she was living with dementia.

I met that woman in person a few months later. She was in her early 60s, sharply dressed in a hip suit, and personable. She recognized me immediately even though I wasn’t wearing a name tag. Throughout the day, it was obvious she was running the show. She made announcements. She helped me set up my Powerpoint. She even gave me a Bath and Body Works gift set as a thank you for coming.

You know what those two women had in common. Dementia.

You might think the first woman, at the end-of-life, looks like dementia, and the second woman, organizing a conference, doesn’t look like dementia. But they are both equally dementia.

It’s true that people living with dementia may become more limited across time. The woman organizing the conference may someday be more similar to the woman whose family is debating about a feeding tube.

But that’s not today.

As I sit here and people-watch (Is that a verb? Is it hyphenated?), I start to think more and more about issues that impact the chaotic mass of humanity at a place like an airport. So many people. Going through so many things.

I’m sure some of them have cancer. I’m certain some of them have debilitating depression and life-limiting anxiety. Or PTSD. Or OCD. I am positive that some of the people I see are grieving the loss of a spouse or a child.

There are some who are struggling with alcoholism or drug abuse–and some who are struggling with a family member’s alcoholism or drug abuse. And some have been sexually assaulted or physically abused. (If it sounds like I’m just listing the most terrible stuff that humans go through, that’s exactly what I’m doing. All of that and more is represented when you’re in a large crowd.)

I feel like a million people have passed my laptop and me at Chili’s in the past couple hours, and I wonder how many people are headed to and from funerals. And, of course, some of the people I’ve seen have Alzheimer’s, Lewy-Body, Frontotemporal, or another type of dementia.

If you lined up all these people in front of me and ask me to label people with their struggles, I’d do miserably. People often don’t “look” like their diseases and circumstances. Not everyone with cancer is bald. Not everyone coming from the funeral is wearing black with tear-stained cheeks. That bubbly young woman with the perfect makeup? She might have just found out her husband filed for divorce. Or maybe she recently had a miscarriage.

Perhaps missing my flight was a gift for me.

I have a confession to make. I had a bit of temper tantrum when I missed my flight. On my flight into Chicago, I was in the 2nd to last row of a plane with 23 rows. When we landed, I knew I’d be pushing it to make my flight. The flight attendant made an announcement asking passengers to stay seated so those of us with close connections could deplane first.

No one stayed seated. In fact, I was literally the last person off that plane. Even the people in the row behind me pushed their way ahead of me. And I did something I rarely do in such a situation…I said something. I made a few snarky comments under my breath about how I was pretty sure that not every person on that flight had a tight connection. I may have made a couple more when they were leisurely walking three-across up the ramp making it impossible to pass them without looking like a stomping brute.

As I sit in the terminal and watch people, I feel less angry toward all those passengers who didn’t let me off the plane first. Maybe they weren’t all conspiring to make me miss my flight. Perhaps they weren’t all awful people. Maybe they were just people–fighting their own battles that go often go unnoticed by the rest of us. Now I’m thinking that at least some them were so consumed with their own battles that they didn’t have the mental energy to think about the poor woman in the 2nd to last row who was really excited to see her husband and dogs.

And I need to cut them some slack.

I should add that I have a ticket for the next flight to Cedar Rapids. I’ll be home for dinner.

I’m not mad anymore.

Dementia is all about change.

Accepting change. Adapting to change. And (hopefully…maybe…sometimes) thriving through change.

But there has to be change. Or it’s not dementia.

Let me tell you why I say this…

People often ask me a question that goes something like this: “Does (insert something random) mean you have dementia?”

I will give you some examples. Does not being able to balance your checkbook mean you have dementia? Does forgetting people’s names mean you have dementia? Does not being able to smell peanut butter mean you have dementia? Does losing the remote mean you have dementia? (If I had a quarter for each time I’ve been asked the one about the remote control, I’d have enough money to put a hot tub on our deck.)

I have to smile at some of the very specific versions of this question. Does putting your diet Coke on top of the car and driving off from the gas station and watching it spill down your windshield mean you have dementia? Does forgetting you put on a face mask to make your skin look younger until you are horrified when you look in the mirror two hours later mean you have dementia? (These are easy ones. No, you don’t have dementia because you did something stupid once.)

With questions like these that refer to a mysterious “you,” I have to be careful with my responses. Because “you” sometimes means “I.”

The vagueness of “you” doesn’t tell me if they are asking a question that pertains to a family member, a neighbor, someone they once met at a party….or maybe it’s something they saw on online or heard on John Tesh Radio Show or saw on Facebook. I’m in the dark about who we are talking about. I’ve learned to tread lightly when I don’t know.

Sometimes, when a person asks a question like this, the “you” doesn’t refer to another person. They are telling me that they are concerned that they have dementia.

A while back I had a speaking engagement at a community center. I gave what I refer to as my 101 presentation–a basic overview of Alzheimer’s and related dementias. I answered a few questions from the podium, and the event wrapped up. I had to use the restroom before I walked to my car.

A guy who was probably 65-years-old was waiting for me as I walked out of the restroom in the basement of the building juggling my car keys and cell phone.

“If you keep messing up your money, does that mean you have dementia?” he blurted out.

My first thought was that I wasn’t sure who “you” was. My second thought was that I wasn’t sure what “messing up your money” meant.

I decided to pursue the latter in hopes it would get me to the former.

He told me that he has had the power shut off at his home a few times because he forgot to pay the bill. He also has habit of writing bad checks. He often forgets to cash checks and his checking account is overdrawn. He can never remember when his credit card bill is due, so he’s run up a bunch of interest and late fees. He said it’s not that he doesn’t have money. It’s just that he never has it in the right place, and he always forgets to pay what he needs to pay.

Yeah, I’d say that qualifies as “messing up your money.” And by “your money,” he definitely meant “his money.” Now we were getting somewhere.

He came to my presentation out of curiosity but a few things I said made him think that perhaps his troubles with money were due to dementia. I had mentioned poor judgement, unpaid bills, losing track of time. He’d been sitting there growing more and more worried that he had dementia.

I wasn’t sure where to go with this. First of all, it was almost 9 pm, and I was standing outside a restroom in a dark community center basement. They had literally already turned out the lights in the building. It didn’t seem like a place to have a life-changing conversation with someone.

Second, I was concerned. Financial mismanagement can be a sign of dementia. Obviously, I can’t make a diagnosis–nor do I want to. My only option is to make a suggestion that he see his doctor for a check up.

And that’s where I started. It’s always where I start when there is a concern. Go to your regular doctor. Check out any potential medication interactions. Get bloodwork done. Make sure you are not deficient in any vitamins or minerals.

I explained to this guy that I certainly didn’t have enough information to know whether or not he might have dementia, but I would recommend he take his concerns to his doctor. At the very least, he would have some baseline information for his future healthcare.

So we talk.

I put down my purse and lean against the wall because I’ve worn these heels that are so uncomfortable. Every time I wear them, I swear I’m going to get rid of them, but I never do.

The man was married but his wife passed away years ago. He has what he describes as a “kind of sometime girlfriend.” She refuses to marry him because his finances are a disaster. He recently tried to buy a car but his credit was so bad that he gave up on the process. He seemed like a really nice guy, and I started to realize his financial missteps are negatively impacting his life in a big way.

We talked some more.

He told me he worries that if he does have Alzheimer’s or another type of dementia that he won’t have anyone to take care of him. He mentioned that he has two kids that live across the country, but he’s not close to them. He even asked me how people pay for nursing home care. I explained how Medicaid works. He told me about the end-of-life experiences of his wife, who passed from cancer at a local nursing home. The care they provided didn’t impress him.

It gets real deep real quick.

So I listened. I had not eaten dinner. I was starving. But I kept listening.

(If you are reading this and thinking women shouldn’t be hanging out in dark basements alone with men they don’t know, that’s a fair point, but I didn’t think of that at the time. In fact, I didn’t think of until I was editing this post for the final time.)

When the conversation seemed to reach a natural stopping point, I picked up my purse and give him one of my business cards. I scribbled my cell phone number on the back. We started walking toward the door. We had been talking for at least 25 minutes. I am positive he would’ve talked to me for another 25 minutes, and I felt guilty for my attempt at a get-away.

Then he said something that changed everything:

“Thanks for all your help, Dr. Eshbaugh. I’ve always been terrible with money.”

WHAT. Always?

I stopped him and asked for clarification.

As he is unlocking his car door, he said he dropped out of college for not being able to pay the bill; he had blown the money on beer and pizza. He told me that his parents had to take control of his checking account in his 20s because he couldn’t manage it. Several decades ago, he had to go to jail for writing bad checks.

I almost had to laugh when he said, “I’ve been a disaster ever since my parents gave me my first allowance.”

I had made a mistake in my assessment of the situation. If you remember…dementia is about change. I had assumed that his financial management issues had been more recent developments. I had assumed they were a change.

Nope.

I wasn’t sure what to say. And I’m not sure what I said was the right thing. But I do think it made him feel better.

“Sir,” I said. “I don’t think you have dementia. I just think you are really terrible with money.”

He smiled and said, “Well, good then.”

And that was that. No goodbye or anything. He drove away in a rusty station wagon with wood paneling on the sides. I never even knew his name.

I got in my car and picked up an ice cream cone from McDonald’s for my drive home. I was sad for this gentleman whose financial issues were so challenging, but I couldn’t help but laugh to myself about the way our long conversation ended.

If you’ve had poor judgment your whole life, you don’t have dementia. You have poor judgment.

If you’ve been bad at remembering names your whole life, you don’t have dementia. You are just bad with names.

If you’ve been irritable your whole life, you don’t have dementia. You are just a miserable, irritable person.

And if you’ve been awful with money your whole life, you don’t have dementia. You are just ridiculously bad at managing your finances.

Dementia is about change.

Many years ago, I was volunteering with hospice when I was asked to sit with a patient at the hospice house. I expected this to be similar to my previous experiences with patients who were staying at the hospice house at end-of-life. I expected to sit quietly with this woman, maybe listen to some music while she slept, and alert the staff if she seemed to need anything. As a graduate student, there was often time to get a bit of reading done.

I didn’t expect that a hospice staff member would meet me at the door with a tiny woman wearing a track suit carrying a notebook. The woman in the track suit, Donna, was all business.

The staff member introduced us, and Donna greeted me by saying in an enthusiastic voice, “Welcome aboard, Elaine. We have a lot of work to do.”

I was told that Donna had worked for the local chamber of commerce for decades. She had been diagnosed with frontotemporal dementia a while back, but her passion for her community had not waned. In fact, she saw the hospice house as a conference center, and she was planning a community conference.

The reason she needed a volunteer to stay with her and provide one-on-one attention was her habit of walking into other patients’ rooms and asking them to leave because she had previously reserved that particular room for the conference. Also, she saw several hospice staff members as her administrative assistants and was on their case for not pulling their weight.

“I’m glad you’re here,” she whispered to me. “The rest of them just sit at that desk.”

I made a comment about how hard it is to find good help.

For the next several weeks, I spent a couple hours a day with Donna. She seemed to see me as a colleague and respected my work in planning the conference, but there was no doubt that she was in charge.

I would list tasks in my notebook as she gave me direction:

Check in with caterer.

Report back on number of RSVPs.

Cash checks at First National Bank.

I’d go back over the tasks I was assigned with her later. Sometimes I would just say I checked them off the list, but usually I added some detail. I’d tell her that I was upset that the caterer wasn’t accommodating of vegetarian options or that I was frustrated that people never seemed to RSVP until the last possible moment. (I mean, you can’t just check off tasks if you’re planning an event. It’s always something, right?)

One day I asked if we should make some programs for the conference. She loved the idea. I grabbed my laptop and we went to work. She dictated as I typed. I learned that we were coordinating a conference for business leaders in the local area. The conference would last from 8 am to 5 pm for a whole week. No wonder it was so much work to plan.

She listed off some speakers that would presenting at the conference. I don’t remember all of them, but she told me that the diver Greg Louganis would be speaking on the final afternoon. I asked if he would be talking about the time he hit his head on the diving board during the Olympics.

“Oh, yes,” she said. “It’s a great story.”

Of course, I knew I wouldn’t really get to listen to Greg Louganis speak, but I was still excited to add his name to the program.

I learned to divert her when she wanted to kick patients out of their rooms for the sake of the conference. I got creative. I’d tell her that we probably didn’t want to use that room because someone had notified me that the air conditioning was broken, or I’d tell her that I’d located a more spacious room (usually the lounge) down the hallway that would work much better. She’d thank me for being on top of things.

I knew this conference was fictional. I knew it would never happen. Nonetheless, I somehow I took pride in the “work” I was doing. I felt productive when I crossed a task off my list. When she told me I was doing a good job, I beamed with pride.

One morning I got a call that Donna would be going home from the hospice house and would no longer need my assistance with conference planning. I didn’t ask any questions, but I assumed that perhaps going home meant she was doing well.

In fact, it was the opposite. She was moving back home with her husband because her health was declining. She had rapidly become less mobile and her verbal abilities had declined substantially. Her husband had decided it was time for him to take time off work.

I never saw her again.

On the last day I spent time with her, I felt like the conference arrangements were wrapping up. She was telling me what I should wear the day of the event (a business suit) and making sure I could be there an hour early.

Donna died a month or so after she went home. The hospice staff relayed that her husband was so grateful for the care she received during her stay at the hospice house. I wish I had reached out to tell him how much fun I had planning the conference. For the next year, I would find pages of conference notes around my condo. I really missed my conference planning days.

Strangely, a part of me feels unfulfilled that we never made it to the conference. We put so much work into it.

For the sake of full disclosure, I will tell you that I am a person who lives with depression. This is not a shocker to most who know me…I’ve made a point of dropping this info matter-of-factly into casual conversation.

I have three dogs. I hate ironing but love cleaning with bleach. My favorite place to buy clothes is SuperTarget. And, oh yeah, I have clinical depression.

When I was first diagnosed with depression, I was 21. It was hard for me to tell people about it. But I’m over that. I know when I talk about having depression it makes some people uncomfortable. I will happily accept their awkwardness if it means that they will be a little less uncomfortable when the next person (who might be a bit more fragile than I am) tells them that they have clinical depression.

Also, I have a friend who talks without fear of stigma about her irritable bowel syndrome. So why would I be ashamed to talk about depression?

I have never had suicidal thoughts. I’ve never wanted to harm myself. Yet, my hope is that my candidness about depression might somehow make someone who is suicidal or self-harming more open to sharing that information in order to get help. In other words, I am hoping to help set a precedence for more openness about mental health. Also, I want people to know that you can have clinical depression and live a pretty dang happy and successful life. Sometimes it’s easy, and sometime it’s a struggle, but I’m doing alright.

As a person with depression, I’ve had many people in my life who have been well-intentioned in their plans to “cheer me up.” Some have even literally said, “Cheer up.”

They wanted to help. They really did. But let me be clear…

No one in the history of the world has cheered up because someone told them to cheer up.

Think about it…maybe you have depression or maybe you don’t…but when you are down and someone tells you to “cheer up,” is your first instinct to experience sudden extreme happiness? Or is it to punch them in the face?

Yeah, that’s what I thought.

When someone with dementia is sad and we don’t understand why, our first thought is to tell them to be happier. And—as much as it makes me irate when people do it to me—I still occasionally find myself doing it to my friends with dementia.

Don’t get me wrong…

Sometimes distraction works when someone with dementia is upset:

Oh, Myrtle, it’s a beautiful day outside. Let’s walk outside and enjoy the sun.

Did you see that a man is playing the piano down the hall? Let’s go take a listen.

It’s time for lunch, Jim. Let’s go see what’s in the fridge.

Distraction isn’t necessarily a bad strategy. Sometimes it’s quite effective. But think about a time when you were really down and tried to share your feelings with a friend, and your friend—rather than listening—led you in a different direction. They tried to pull you away from those feelings or even implied that your feelings weren’t valid.

Here’s my message for you today:

Maybe your friend has depression. Maybe they have dementia. Perhaps they are a dementia care partner who is struggling. Maybe they are just your average person who has had a really shitty day at work.

Consider that perhaps cheering them up isn’t your job. You can’t cure depression or dementia. You can’t take away the demands of caregiving. And you can’t change what happened to them at work today.

Sometimes you can’t bring someone into the light. It’s not because you’re a bad friend or you aren’t supportive enough.

I’ve learned that the best friends are the friends that sit in the gray with you. They accept that you are down. They accept that you are not at your best, and they don’t care.

When I am with someone living with dementia and that person becomes upset or sad, I try to think about what a friend would do. Sometimes that person is able to tell me why they are upset, and sometimes they are not. It doesn’t really matter. I sit in the gray with them…because at this particular moment dragging them into the light would be insulting. And sitting in the gray is what friends do.

Sometimes I still try to pull people into the light when I should sit when them in the gray.

I was recently at an assisted living where a woman with dementia was crying. I sat down beside her. I asked what was wrong and if I could help. She told me that she had just moved in and hated that they wouldn’t let her go home.

This was a pretty nice assisting living, and I expect her family was paying a pretty penny for her to be there. If I had to live at an assisted living facility, this was the one I would choose.

I said, “But this place is beautiful. And I had lunch here, and the food is great. And look at this amazing atrium.”

She looked like she was going to slap me (which was a valid reaction), and she said, “Do you want to live here, honey?”

I had made a mistake. I had tried to pull her out of the darkness when I should have sat there with her. Did I want to live at this assisted living? I did not.

It could appreciate it as a great place because I had my keys in hand and was about to leave.

Did I want to live at a place where I could only eat at certain times? Did I want to live at a place that implied a lose of independence? Did I want to live at a place my family insisted I move into although I felt I was absolutely fine in my own familiar home? Nope. I am ashamed to say I questioned the validity of her feelings by trying to pull her into the light.

I have a friend who cares for his wife who has dementia. She lives at home, and she functions with little assistance. However, a few weeks ago she realized she could no longer make coffee. For decades, she had gotten up early to make coffee, but it was now just too confusing.

After several incidents that ended with a pot of hot water only and too many clean-ups of coffee as a result of forgetting to put the pot under the machine, she tearfully told her husband she was done making coffee.

He told her that was fine. He said it wasn’t a big deal. He could make the coffee.

But it wasn’t fine to her. It was a big deal. She didn’t want to give up making coffee. She was upset.

She cried. He didn’t understand why she was crying. Because it’s just coffee. He could make the coffee.

But it was a big deal. It was a loss. Not being able to do something you’ve done for decades is most certainly a loss. He tried to talk her into the light. He told her that he didn’t mind making coffee. He said that he could get up a few minutes earlier each morning to make sure there was hot coffee. He didn’t understand it wasn’t about him.

He should have sat with her with her in the gray.

Sometimes we feel the urge to tell people things aren’t so bad. And, yeah, our heart is in the right place. We want people to be happy.

But we might be better off listening and accepting the other person’s feelings.

Lots of well-intentioned people try to pull their friends out of a funk and into rainbows and sunshine. Maybe it’s the best of friends that are able to sit with us when none of that is within view.

A friend of mine with younger onset dementia has been sending me some emails telling me about her life. Notice that I don’t say her life with dementia. Sure, she does have dementia, and having dementia is a big deal.

However, you can’t really isolate all of her experiences and attribute them to dementia. She gets annoyed with her husband. She got annoyed with him before dementia, and she gets annoyed with him after dementia. She has joys, and she has struggles. She is looking forward to being a grandma. She celebrates her kids’ career successes. She’s a wife. She’s a mom. She’s a friend. And she has dementia.

She’s in this “in between” stage. I’m not sure I really like the term “in between” because it begs the question…”in between” what? And I’m not sure I really want to answer that or am even capable of doing so.

She knows she’s changing, but she’s still independent. Her emails are easy-to-read. In fact, her grammar is better than 95% of my college students. In writing, she’s clever and has a sense of humor. I just really like her. She’s not my friend with dementia. She’s just my friend–even though I probably wouldn’t have ever met her if she didn’t have dementia.

I know her dementia is going to get bigger, and she knows it as well. She’s a positive person and she has no timeline, but she knows enough about dementia to understand she’s not going to get better.

She hasn’t said it in so many words….but she knows that no one knows what to do with her right now.

Her recent experiences have been eye-opening to me, and I’ve started talking to a few other people I know who are in the earlier stages of dementia. Here are some of the things they have shared:

“Whenever I say something people disagree with, they don’t take me seriously and just assume I’m saying it because I have dementia.”

“People think even my political views are because of my dementia. I told my family I think Trump should be impeached, and they made comments about how only someone with dementia would think that. No, that’s really what I think and I would’ve thought the same ten years ago.”

“The way people treated me changed five minutes after I was diagnosed. People don’t tell me jokes anymore because they think I won’t understand them.”

“I’m sick of people being patronizing. They think I don’t notice because I have dementia.”

“We re-did our kitchen. My husband used to listen to my input and we’d make decisions on house projects together. Now he just thinks I’m not capable to making decisions. He made them all himself. He doesn’t know what a kitchen needs. He doesn’t even cook.”

“Whenever I’m mad, people think it’s related to dementia, even if it’s something I would have been mad about 15 years ago. They don’t even bother to argue with me.”

A care partner once told me that he was a great carer to his wife when she was at the end of life and living in a nursing home. He showed up everyday. He talked to her. He helped her eat. He held her hand.

However, he had regrets about the time after her diagnosis. He told me he wonders if he stole her life long before dementia did.

Looking back, he realizes he didn’t let her talk in social groups for fear she’d say something awkward. He’d interrupt and talk for her. He discouraged her from going to the grocery store because he thought she would forget stuff. He decided it was easier to do the shopping himself. He tagged along when she went out with friends even though it annoyed her. And he discounted every opinion she had about their lives because he assumed her perspectives were invalid due to dementia.

Years later, he wishes he would’ve just let her keep living life.

One of my favorite quotes is “In three words I can sum up everything I’ve learned about life, it goes on.” — Robert Frost

I even bought a cheesy sign with those words on Etsy for our bedroom.

And so life does go on…even with dementia.

Dementia changes life, I know. We make adjustments. As time goes on, those adjustments get bigger and bigger. But still–it’s life.

When someone lives in a nursing home and is limited in their ability to communicate and care for themselves, we sit with them and love them. But dementia is a long journey, and that’s only the tail end of the journey.

Society tends to forget that most people with dementia are living at home, with their families (or even alone), and spend their days making their morning coffee, watching TV, paying bills, and mowing the yard….like the rest of us.

And I’ve come to conclusion that we struggle with how to love those people.

Sometimes our tendency is to ignore that they have dementia, and that doesn’t work. Yet, focusing completely on dementia and protecting them from the world doesn’t work either.

Because life goes on…

Hi friends! I’m back….sort of.

I’m in the midst of my summer break from blogging–because a girl needs a break, right? But I wanted to tell you that I miss you.

I know this sounds strange because I haven’t met most of you, but I’ve really started to value my relationship with my blog readers. I hope that doesn’t sound creepy. It’s just that it took me a while to gain the confidence to start this dang blog, and y’all have been so kind to me. (Except that weird person who commented that I am “totally insensitive” and “so not funny when you’re obviously trying way to hard to be funny,” but WHATEVER. I’m over it. Mostly.)

I wanted to let you know that school starts tomorrow, so I’m getting back in the swing of my academic routine. I’ll be back soon with my weekly Monday blog.

In the meantime, a summer update:

• Our Gerontology program at the University of Northern Iowa was named the #8 program by College Choose. Not bad for a major that only has one faculty member!
• Carlos (aka, Los….my little “so ugly he’s cute” mutt) and I went to Wisconsin to do some education and visit some new friends with dementia. Well, I did more of the education. Los was more focused on visiting and sniffing out crumbs on the floor. Anyway, I am really impressed with Walworth County and its commitment to inclusion and positive dementia care. I’m so impressed that I’m going back in a few weeks. Also, it’s where Lake Geneva is….so that doesn’t hurt.
• I went to Chicago for the Alzheimer’s Association International Conference. If I could sum up the take away message, I’d go with “Hope.” Also, I learned to say dementia in four different languages. Actually, it’s Spanish it’s demencia, so I’m not if that counts. If you are a Dementia Alliance International person, I apologize that I couldn’t stay for the conference….we had company coming into town, but I’ll be there next time!
• This summer I had solo work trips to Chicago (twice), Atlanta, Indianapolis, and Milwaukee. I have finally gotten to the point where I feel completely comfortable eating alone at a restaurant of my choice. I’m done eating dinner out of the hotel vending machine. Life is too short to have Cheetos, animal crackers, and a diet Mountain Dew for dinner.
• I taught an online course called “Families, Alzheimer’s, and Related Dementias.” Thanks to all of you who sent me your personal stories to pass along to my college students. They were impactful…especially those from people living with dementia. I cannot thank you enough.
• I did a half marathon and I’ll be doing another one in a couple of weeks.
• I had this weird idea I was going to do a bench press competition. I hurt my shoulder and had to do six weeks of physical therapy.
• I organized a trip to Missouri to go on a float trip with some friends. I didn’t think we’d have to make reservations for the float trip. I was wrong, and they were out of rafts. There was no float trip, and I felt like a giant loser. Then we went to the river and had a few beers. Like most things, it ended up being okay.

So that about sums it up…I hope you have had a nice summer full of whatever you think is enjoyable!

Talk soon!

I’ve been hesitating to write this post because I wasn’t sure it would be helpful. You know that person who is more than willing to point out problems but has no suggestions on how to fix them? Well, that’s me today.

I’m going to tell you something you already know…that dementia can drive away your friends.

Women with dementia tell me this all the time. They are in the early stages of dementia. They are living at home. They are able and willing to go out to lunch. To go to movies. To meet for coffee. To enjoy a morning walk with companions. To go to one of those places where you drink wine while you paint. To do things they have enjoyed doing for many years. And their friends disappear.

Maybe men feel this way as well. In fact, I’m sure many of them do. However, no man has ever told me that dementia stole his friends. Yet, women tell me all the time. I’ll leave you to figure that one out.

Perhaps I should write a separate blog post for friends. I could tell them how to continue to be a friend to someone living with dementia. But this isn’t that blog post.

This post is for those of you who live with dementia and your care partners who sit around and ask “Where the hell did everyone go?”

I don’t have an answer. And I won’t make excuses for them.

Maybe they don’t know what to say. Perhaps they worry about their own vulnerability to dementia when they see you. There’s the possibility that they don’t understand those living with dementia are capable of social interaction. I won’t explain their reasons for disappearing. You’d have to ask them.

But this isn’t about them. I can’t change their behavior. This is about you. Some things are just out of our control, right? And maybe those friends who just seem to migrate to some foreign land when they hear the “d” word (and I don’t mean Dallas or divorce) aren’t ours to control.

What I want to tell you is this…you need new friends.

Seriously. I’m not going to say those people who were disappeared weren’t real friends. Maybe they were…but they can’t handle what you’re going through now…so appreciate what they’ve contributed to your life and move on. Not every friend is a forever friend.

Perhaps, if you’re lucky, some new people step up to the plate in your life. Often it’s people you didn’t expect to be there who suddenly become your “go-to” supports. Don’t fight it. Allow those new people to step in. Allow those old people to step out. Focus on the new people. Forget about the old people.

I know it’s not that easy. I have close friends who would break my heart if they ever disappeared. I’m not minimizing your pain here. You get to mourn when you lose friends. You are allowed to miss them. But don’t let their disappearing act distract you from the people who step in.

Maybe you make new connections in a support group. Perhaps you have an acquaintance who keeps showing up and showing up, until you realize they are a friend. It could be a former or current co-worker, someone you meet on a dementia message board, a friendly neighbor. Anyone who steps up and cares.

I know several people who stopped going to church because their friends at church (to quote one woman) “just didn’t know what to do with me.” This points to the importance of educating church leadership and congregations on dementia, which is another blog post entirely.

I know a woman who was no longer notified of “girls’ coffee” dates with her best friends after being diagnosed with Alzheimer’s. She was confused because she had been there last week drinking her overpriced cappuccino and all was well. She eventually accepted that, one week after diagnosis, they saw her as an entirely different person. She soon noticed that they would hustle down another aisle to avoid her at the grocery store.

“I haven’t seen those fat old ladies move that fast in decades,” she said. “Apparently I’ve got the damn Bubonic plague.”

I could forgive her snarkiness given the circumstances.

You cannot control others’ reactions to you. Sure, you can try to educate them. You can forward them resources. You can keep calling and texting. You can attempt to prove, as many of you do, that you are the same person you were before.

You can even chase them down at the grocery store when they run away—actually, if you do this, let me know what happens. I would love to hear about.

I know someone with dementia who says the real tragedy isn’t that she has dementia…it’s how people react to her having dementia.

All I can say is I’m sorry. I’d be sad if my friends ran away, too.

Today I’m coming to you from O’Hare Airport in Chicago. Specifically, I’m at Chili’s on terminal H, drinking a glass to Riesling and deciding if I need an appetizer. I do, don’t I? Probably something fried. Cheese curds. Onion rings. I wonder why I put on weight when I travel? Any ideas?

I flew here on a 1:14 pm flight from Waterloo, Iowa, and now I await my flight to Atlanta for a work-related conference.

Let’s back up a few hours.

My flight departed at 1:14. In Waterloo, you don’t exactly worry about long security lines, so I knew I had to be at the airport 45 minutes early…so that’s 12:30-ish. Yep…45 minutes is plenty. To give you the back story on the Waterloo airport, I once I happened to be the last passenger to arrive at the airport for my flight (three flights to Chicago leave each day–that’s all the departing flights!) and the guy working the American Airlines desk exclaimed “Elaine!” as I walked in–kinda like “Norm!” from Cheers, right?

I know it takes about 12 minutes to drive from my house to the airport. I knew I need to leave home about 12:15. (If you regularly fly out of an airport like Chicago or Atlanta, I apologize if I am making you jealous. Keep in mind that I haven’t flown anywhere direct in over ten years. I’m the jealous one.)

Let’s back up a bit more.

I knew I wanted to run and lift weights before catching my flight today. I also knew I needed to leave time for a shower after my workout, and it would take me about 30 minutes to shower, dry my hair, put on a little makeup, and get dressed. I’d need to make sure I was in the shower by 11:45am.

So….if I was going to run 5 miles…that would take about 45 minutes. And lifting weights? Maybe 20 minutes. I would need to start my workout by 10:40ish at the absolute latest.

Now–1:14pm was the original goal. I needed to be at the airport at 1:14. However, there were a lot of time benchmarks I would need to hit to make that 1:14 goal happen.

And I did. But I must admit it took a little thought and planning. And the stakes are pretty big for something like this. I’m not really sure what happens if you miss your flight, and I don’t want to find out.

Over the last few years, I have come to realize just how challenging getting somewhere on time can be for people in the early stages of dementia.

A friend with younger-onset Alzheimer’s recently told me about a challenging situation she has been encountering. Her husband would tell her that they had dinner plans with friends at, say, 7 pm. He would swing by at 6:30 after he finished work to pick her up.

And there she would be–sitting on the couch. Not dressed for dinner. Still needing to touch up her hair and makeup.

“Dinner is at 7, honey,” he would say, frustrated that they were going to be late.

“I know dinner is at 7, and it’s only 6:30 now,” she’d respond.

It was as if she were so focused on 7pm that it did not register that some action would have to take place before 7pm to make a 7 pm arrival a reality.

After several instances like this led to arguments between my friend and her husband, they came up with a new plan. He would write the time she needed to start getting ready on a dry erase board.

5:45pm Pick out dinner outfit and change clothes

6:00pm Brush and curl hair

6:15pm Put on make-up

6:30pm Dave will pick you up for dinner

Another friend with younger-onset dementia puts everything on her calendar. One night she was expecting company. She needed to clean house during the day, but she didn’t just write “clean house” on her calendar.

She wrote:

1:00pm vacuum

1:30pm Swiffer the kitchen floor

2:00pm wipe down counters

Writing down specific tasks and a more definitive timeline can be helpful to all of us. However, I don’t want you to think we should all turn into overscheduled robots with no flexibility. Maybe it doesn’t matter if you go to the grocery store at 3 pm or 5 pm. You’ll get there when you get there. Perhaps there are days you have nothin scheduled and you can head to the gym at any point.

But sometimes we need to be at a certain place at a certain time. And I don’t think we give people with dementia enough credit for the mental energy it takes to make that happen.

Think about everything Grandma has to do to make it to Christmas dinner on time. Picking up the last minute items she was asked to bring. Getting all of the presents packed up and ready to transport. Finding the Christmas sweater she hasn’t worn since last year. And mentally organizing all of those tasks so she can arrive exactly at 4 pm.

Is it any wonder her brain is tired by the time she gets there?

Time management issues can mean that people living with dementia show up early. Someone recently told me that their neighbor with early-stage Alzheimer’s was going to stop by one evening to visit. They received a call at work that day from their neighbor who wondered where they were.

The friend said, “I might be a few minutes early, but I’m wondering if you’re around. You might have forgotten that I said I was coming at 6.”

It was 3:30 pm.

A while back, I had a chance to talk to a family doctor who counted individuals living with dementia among his patients. We were discussing how to give a person and their loved ones a diagnosis of a dementia-causing condition.

Of course, I’ve never actually done this since I’m not a medical doctor but still felt he’d probably value my input. Okay….that’s not true. He was probably wishing I’d shut up. And I knew that at the time but kept talking anyway.

I mentioned that I wished there was more education about how to live with dementia. I gave a few examples–one of which focused on using more memory aids and listing out specific tasks on mediums like white boards. I explained that we should focus on breaking down tasks a bit more. Instead of “get ready for the day,” we can use “brush teeth,” “put on clothes,” and “use deodorant.” (If I am being honest, I also do better when I write a to-do list with specific tasks I can check off rather than a large general task.)

The doctor responded, “Yeah, but stuff like that doesn’t work forever.”

And it’s true. Dementia is progressive. There will come a time when people living with dementia can no longer read a list. There will come a time when they don’t know what deodorant is anymore. I get that.

But that day isn’t today. And it could be a long way off.

Use strategies until they don’t work anymore. Then find new strategies.

I wasn’t going to write a blog post this week. Not so much because it was Memorial Day weekend (although that was gonna be my official excuse), but because I’m a bit overwhelmed.

I’ve been out of town for work much of May thus far. I will be gone next week…and the week after…and I realized this morning that I have a summer class starting on June 4 which needs some preparation.

I was ready to bail on the blog for this week until I started prepping that summer course–Families, Alzheimer’s, and Related Dementias.

As I started putting some thought into the modifications I wanted to make to this course for the summer, I had an idea.

What if I ask a favor of you? What if I asked you to write a letter to my students telling them what you think they need to know about dementia?

Let me tell you a little more.

Most of these students will be undergraduates. You have to have junior status, so the majority will be 20-24 years old with a few non-traditional students thrown in the mix.

I have many Family Services, Psychology, and Gerontology majors enrolled in the course. There are a some Social Work majors, and (as I look at my course list for the first time) I notice two Communicative Disorders majors and an Exercise Science major.

As you might have figured out by this point–because I can be an oversharer–I oversee our Gerontology program, and many of the students in this major will go on to become licensed nursing home administrators. This is the only course these future nursing home administrators will take that focuses on dementia.

Other careers I might expect these students to pursue: Mental health counselor, gerontological social worker, nursing home enrichment/activities director, speech language pathologist, nursing home social services director, hospice team member, occupational therapist, assisted living manager, and adult day services coordinator.

On the first day of the course, I will ask them to share their reasons for taking the course. In the past, I’ve received responses like:

My grandma has Alzheimer’s. (If I have 30 students in a class, about five will tell me that they have or have had a family member with dementia.)

It sounds kinda interesting. (Kinda? But this is the most interesting class in the history of the world!)

I couldn’t find another class that fit into my schedule. (I apologize that you had to scrape the bottom of the barrel and take my class.) A related response, which I received a few years ago, is All the good classes were already full by the time I registered.

My friend took this class and said it wasn’t all that bad. (Thanks….I guess?)

I know our society is getting older and I might work with demented people in my career. (Sorry, but that’s the language that this student used, and I’m okay with it…at least they have a desire to learn. I can always teach someone appropriate language.)

My boyfriend is in the class and said I should take it with him. (I’m glad my class can substitute for date night. Should I order you guys a pizza? Maybe a bottle of wine?)

I heard you’re a good professor. (To be fair, I don’t hear this from too many students…only the really smart ones throw this out on the first day.)

As you can see, my students are all over the place in terms of knowledge and interest in dementia.

So, if you are willing, here is my challenge to you…Write a letter to my students about what you think they need to know about dementia.

I’m looking for letters from people living with dementia. I’m looking for letters from care partners. I’m looking from letters who have lost a loved one to dementia.

You can be angry. You can be funny. You can be hopeful. You can be pessimistic. You can be wherever you’re at today. Just promise me you’ll be real.

Write about your challenges. Write about your joys. Write about what makes you happy and what really pisses you off. I want all of it.

If it’s easier to do a video letter, I’m certainly cool with that as well.

I will hide your name and identifying info before posting these to our course website.

No pressure–but if you’ve got time before June 4 and you’re willing….I would sincerely love to hear your voice.

Email your letters to me at Elaine.Eshbaugh@UNI.EDU.