Patients in Dementialand

Let’s talk about patients.

You probably think that’s a typo. I know that it’s not rare to see a typo in my blog. You probably think I meant patience–but I didn’t.

I want to talk about dementia “patients.”

First, an analogy…

My husband, Bill, has had terrible acid reflux since adolescence. He takes medication everyday. He’s visited multiple specialists. He has been to Mayo Clinic to talk about a potential surgical option and had frequent endoscopies. Since I’ve known him, I’ve seen him make many decisions due to acid reflux–what he eats and drinks, when he eats and drinks, when he exercises, how he positions his body when he sleeps.

People do not refer to Bill regularly as an acid reflux patient. I’ve never heard anyone say “I’m going to lunch with my buddy Bill, the acid reflux patient.”

I have allergies. I have dry eye syndrome. I have an immune issue called neutropenia. I’m not regularly called an allergy patient, a dry eye syndrome patient, or a neutropenia patient as I walk around as a human being on this earth.

I’m not defined by my diagnoses.

Yet, whether it is in the context of receiving medical care or not (and it’s generally not), people with dementia are regularly called dementia patients.

A patient is, by definition, a person receiving medical care. We all receive medical care at some point. We are all patients sometimes.

When people with dementia are at SuperTarget or Starbucks, they aren’t patients any more than I am when I visit such establishments.

When I see someone living with dementia out for dinner, they are not a dementia patient. They are just a human being enjoying an oversized plate of food and possibly a cold beer–and they happen to be living with dementia.

Recently I spoke with a woman who works as a waitress at a local BBQ joint. She told me that they serve a lot of dementia patients. I pictured the hospital bringing them over on a bus attached to IV poles.

I recently saw a headline that read: “Dementia Patient Runs 5k.”

Unless that person was running along with a doctor beside them discussing their recent symptoms, they were no more a patient than I would be when I ran my last 5k in October. They’re a person living with dementia.

We are patients when we are in the hospital. We are patients when we must visit urgent care. We are patients when we show up for a yearly Pap smear or when we turn our heads and cough.

What’s with referring to people with dementia as patients all the time?

I often hear the term “nursing home patient,” which also frustrates me. We are working to promote a more home-like environment in nursing homes. We want to promote a culture where people are comfortable in their surroundings—because, well, they live there. You are not continuously a patient in your home. Let’s work on using the term “nursing home resident.”

By defining individuals as patients, we define them as sick. We reference them by their relationship to the medical industry and their diagnosis rather than as a human being. The term patient implies a helplessness and passivity that is often not present in the people living with dementia that I know. When someone is referred to as a patient rather than a person, a different image comes to mind.

Let’s focus on the person.

 

The Complicated Dynamics of the Care Partnership in Dementialand

In my opinion, the most exciting development in the field of dementia over the last several years is not a promising drug trial. It’s not a research study identifying–once and for all–the cause(s) of dementia. It’s not a vaccine or a professionally-led intervention. It’s nothing that tenured professors like myself are doing. And it doesn’t take place within the walls of a university or medical center.

I believe that the greatest movement has been the involvement of people living with dementia in advocacy and education. They’ve connected by means of social media and videoconferencing. They’ve started writing. They’ve started doing public speaking.

I know what some of my readers are thinking. They are thinking….people with dementia can’t write. They can’t get up and speak in front of groups. And how would they even set these things up? They can’t use computers, talk on the phone, or keep an up-to-date calendar.

Sure, dementia progresses to a point where writing and speaking become more challenging and–at the end of the disease process–may be impossible. (Kudos to people with dementia who continue to do these things as they become more difficult. And, to be fair, I know lots of people without dementia who struggle with computers and can’t keep an up-to-date calendar.)

There are many individuals living with dementia who are not only capable of this type of public advocacy but capable of doing it quite effectively.

One person living with dementia told me, “I know lots of people with dementia can’t speak out like I can, and maybe someday I won’t be able to do it. That’s why it’s important that I’m doing it now.”

I hear so much about how challenging it is to be a dementia care partner, and it is challenging without a doubt. However, I hear less about how challenging it is to live with dementia. I give much credit to those living with dementia who are willing to educate others about their challenges….and their triumphs.

In some circles, we are replacing the term “caregiver” with “care partner” to identify the partnership that develops between the person living with dementia and those who care for them.

Yes, it is a partnership. It is certainly a shared experience.

But being a person with dementia and a care partner are different roles.

Both roles can be roller coaster rides—but maybe they are different roller coasters in the same amusement park. They are close together but move in distinct patterns and have unique features.

I frequently hear people say, “Dementia is harder on the family than it is on the person.”

I have a few thoughts when people throw this statement at me looking for agreement. Often, it is a family member who makes the statement. They understand their own challenges, but they are less likely to understand the challenges of their loved one with dementia.

To be fair, this is a very human way of looking at things. We get what we do. We get why it’s hard. We get why it’s tiring and frustrating and we know how often we lose patience.

We often don’t understand the challenges of the people right in front of us because we are too busy focusing on negotiating our own.

I see this frequently at the university. Professors think their job is challenging because they are familiar with the daily challenges. Secretaries will tell you their job is more challenging because they see their own daily challenges but not the challenges of professors. Same with administrators. Janitors. Coaches. Public safety officers.

We don’t understand other people’s roles so we don’t know what they heck they are doing all day. We just know that we are busy doing things they don’t have to do. So their job must not be that hard.

Also, why is it a contest? Why are we comparing the struggles of the care partner and the individual living with dementia? Does the person who has it hardest get a medal?

Again, this is a human thing. I frequently hear college students trying to top each other in conversations about how little sleep they got in the last week. If one of my academic colleagues talks about how busy they are, another will chime in to make a case that they are busier.

Why do we make this a contest?

Living with dementia is hard. Being a care partner is hard.

They are both challenging in unique ways–and that’s why I believe it’s important for both groups to have private forums to discuss what they are going through.

(I rewrote the last sentence several times….the first attempt was: That’s why I believe it’s important for both groups to have private forums to complain about each other.)

One of my friends with dementia is in a Facebook group started by someone diagnosed with a type of early onset dementia. The group is designed for individuals diagnosed with early onset dementia. She enjoys the opportunity to get feedback from others with similar challenges.

One day she was frustrated that her husband was dismissing her opinions about which new car they should purchase because he no longer believed she was capable of processing such information. She logged on and wrote a long post where she “bitched up and down” (her words) about her husband. Many people who were also living with dementia chimed in to offer her support and advice. It didn’t change anything about the situation. Yet she felt validated.

About a week later she logged on to read posts in the same Facebook group and saw the administrators had welcomed a new member to the group….her husband. She quickly deleted the previous post. She has no idea if her husband read it or not.

She went to her husband and was honest in explaining that she would prefer he leave the Facebook group so she’d have a private outlet to express herself. He told her that he joined the group to get a better sense of how she was feeling about having dementia.

Her response was, “Then why don’t you ask me?”

He left the group.

The same woman told me that she had been meeting with a few women who also had dementia that she had met through connections at her church. When they learned that the mother of a member of their church had been diagnosed with Alzheimer’s, they invited her as well.

She came to their next coffee date…and sat down at the table beside her husband who apparently thought he would be welcome as well.

He was not welcome, and he was told to come back to pick her up in an hour. Fortunately, he seemed to understand.

I am supportive of communities (online and face-to-face) that allow individuals living with dementia to interact without the “expertise” of their care partners and professionals. No matter who you are and what you’re going through, you want to be around people who get it.

I understand that if I am sitting around with several people who have dementia….I don’t get it. I am the outsider. To think I’m the expert on a condition that they all have but I don’t is pretty arrogant.

This reminds me of a conversation I had with a guy with Alzheimer’s a while back.

“I love my wife, but she doesn’t understand me,” he said.

I took a deep breath and tried to come up with a response.

“A lot of spouses struggle to understand what their partner with dementia is going through,” I said.

He gave me a funny look.

“Oh, it’s not about the dementia. She’s never understood me. It’s mostly because she doesn’t get my need to drink a six pack of beer every night,” he said with a laugh.

That’s another thing about this care partner relationship…it exists in the context of life. The relationship pre-dated the dementia, and the complicating factors of a relationship that have existed for years don’t disappear so people can focus solely on dementia.

If you hadn’t noticed, life doesn’t just give you one problem at a time.

The care partner relationship (whether it be spousal, parent-child, sibling, or even a friendship) can be amazingly beautiful.

But it is like any relationship….

You can love someone but sometimes they just don’t get it.

 

 

Big Stick People and Little Stick People in Dementialand

Someone I met recently had a stroke years ago, and doctors are now telling her she has dementia. She lives on her own, and within the walls of her apartment, she feels quite capable.

She can cook. She can clean. She takes care of her cat. She can even work her own DVR. But things take her a bit longer. She says she messes up a lot.

One day it took her several minutes to figure out which bottle on the ledge of her bathtub was the shampoo. That’s didn’t bother her though–because she wasn’t in a hurry and she figured it out eventually.

When she leaves the house, her anxiety level increases. Doing tasks slowly and messing up is fine at home, but it’s a bigger deal in public.

One day she walked to a local coffee shop and struggled to pay for her latte. She thought she’d pay cash but had difficulty deciding if she had enough money. Then she figured she’d use her debit cared but couldn’t process which, of all the cards in her wallet, was the debit card.

In the end, she paid for her coffee with her card and all was fine.

That’s not the way she saw the situation, however. She felt she had inconvenienced the several people in line behind her. She knew they had to have been frustrated by her, and she swore she could hear a few of them sighing behind her back. As she sat down with her coffee, she thought some of them might be shooting her dirty looks.

She wished she had stayed home.

She decided she should start going out less often, and maybe only during hours when places wouldn’t be crowded.

People know themselves, and I didn’t want to judge whether or not her decision to stay home more was a good one. And I didn’t necessarily think venturing out during less busy times was a bad idea.

But what bothered me was that these thoughts were not based on the progression of dementia. Instead, they were based on her perceptions of others’ reactions to her dementia.

She felt she frustrated and annoyed people. She thought they were judging her for being slow. She perceived herself as a nuisance who was in the way.

I wasn’t with her, so I can’t say for sure, but my guess is that the people in line behind her at the coffee shop didn’t notice her in the way she perceived that they did. She explained the scene as if she was the central character, if you will, and everything that happened in the coffee shop at that moment was focused on her inability to promptly pay for her coffee.

I just don’t buy it.

In those situations where you feel embarrassment or shame, when you feel like everyone  is judging your shortcomings, when you feel like your faux pas or misstep is the central plot in a scene, remember this….

You are the big stick figure in your every scene. No matter where you are in life, you are the big stick figure and all the other characters are little stick figures. You see what you do as being bigger than what everyone else is doing because you see yourself as bigger. It’s just how humans see the world.

It’s not because you’re arrogant or self-important. We all see ourselves as the big stick figure because we can only see the world from our own perspective. We are aware of what we are doing, but we are less aware of what others are doing because they’re the little stick figures.

As the woman with dementia tried to pay at the coffee shop, she saw herself as the big stick figure. She thought everyone was aware of what she perceived as incompetence because she was the big stick figure and it would be impossible to not notice her.

Of course, she wasn’t the big stick figure to the people in line behind her. She was the little stick figure to their big stick figure. They might have been noticing that their pants didn’t fit right or that they wanted whipped cream but knew they were on a diet or worrying that they had lipstick on their teeth, but they probably weren’t taking that much notice of her.

To think people noticed her incompetence was to assume that people noticed her…and perhaps that is giving us too much credit when people spend most of their time noticing what they are doing.

At most, she was a role player, or a supporting actor, in someone else’s scene.

Let’s say I happened to be behind her in line at the coffee shop that day. I hope that I would’ve been patient and maybe even helpful, but let’s say I was annoyed. Still…I maintain that I’m the big stick figure and she’s the little stick figure in my scene. If my husband had asked how my morning was, I might have responded with something like this:

Well, I was running behind for that 8:30 meeting and it was taking forever to drive across town because got stopped at every red light but of course I had to stop for my coffee. Unfortunately this woman ahead of me in line was taking forever to pay for her coffee and I was getting more and more anxious that everyone at my meeting was going to be passive-aggressive that was late so I kept trying to will that lady to speed it up. 

You see how the woman with dementia isn’t the star of the story? She’s not the big stick figure. You know who the big stick figure is in my story? It’s me. It’s all about me. Because I’m the one telling the story.

Whether you are a person living with dementia or a care partner who might feel like the world is scrutinizing you when you assist your love one in the grocery store or a person like me who does embarrassing things in public regularly, keep in mind that you’re only the big stick person in your own head.

You are a little stick figure to the rest of the world.

 

 

 

Anticipatory Grief in Dementialand

Anticipatory grief.

I first learned the term when I was in graduate school. I threw it around a lot when I was volunteering for hospice. Now that I work with families impacted with dementia I apply the term frequently.

It could be described as the emotional response to the pending death of a loved one–but I know people who have a loved one with dementia that have experienced anticipatory grief when death was still years away. It’s seeing someone you care about slip away little by little. It’s looking at someone right in front of you who doesn’t recognize your presence–and you know they never will again.

I’ve heard Alzheimer’s called the “long goodbye.”

That’s anticipatory grief.

Sometimes we think an extended period of anticipatory grief means that we will be prepared for a death. But I don’t buy that. Sure, maybe there’s some relief when we’ve been processing the loss for some time. Yet we can’t pay our dues with anticipatory grief…grief after a death still comes for us.

We grieve our loved ones when we lose parts of who they were–when they no longer recognize us, when the lose the ability to communicate verbally, when they can no longer drive, cook, or mow the yard. We grieve bit by bit. You’d think we’d be all out of grief at some point, but it doesn’t work that way. Grief is a lot like love (and closely related to it). It’s pretty limitless.

It’s okay–and normal–to grieve someone who is living.

But we can continue to enjoy the moment even when we are experiencing anticipatory grief. We can grieve what our loved one has lost while appreciating what is left. Grieving someone doesn’t mean we finalize our relationship with them. It doesn’t mean we write them off.

It just means we mourn what we’ve already lost while preparing for more loss. In our heads, we may be composing eulogies and visualizing funerals. And many of us live like that for a long time. We get through by hoping for a “better” day even when we know someone isn’t getting better.

A few months ago, older gentlemen who attended a dementia support group I spoke at asked me if it was normal that he visually rehearsed his wife’s death. At night, he would sit in his recliner and practice what he wanted to say to her as she neared the end. He had found some CDs he’d like to play for her in her final hours. He’d written a short script of what he’d say when he called family to let them know she was gone. He knew exactly who he wanted to stay at his house in the days after she died (and who he didn’t).

“That’s morbid, isn’t it?” he asked me.

In order for something to be morbid, it has to be abnormal and unhealthy. (I know this because I just looked up the definition of morbid.) And this isn’t abnormal or unhealthy.

Death, like birth, is a part of life. And we rehearse births in our society. We decide who we would like to attend a birth. I know plenty of couples who have had “birth playlists.” Mother are encouraged to make birth plans. We anticipate birth and we make a plan.

Why should death be any different?

Someone who lost their wife decades earlier–and was happily remarried–once told me that there is no finish line to grief. Sure, you develop a new sense of normal and you do your best to move forward, but the grief doesn’t have a definitive end date.

Perhaps grief doesn’t always have a clear start line either.

 

Falling with Someone in Dementialand

When I was in graduate school, I attended an in-depth training so I could volunteer with a hospice. The volunteer coordinator who organized the training, Kathy, was tremendous. She did a great job of making the experience meaningful, interesting, and practical. Somehow she also made it fun. (I have since learned that people who work for hospices tend to have great senses of humor.)

A lot of things that Kathy said impacted me, and I think of this training often even though it was more than 15 years ago. How time flies.

One thing that Kathy said that has really stuck with me was a point she made in reference to fall prevention. She said that if someone started to fall, sometimes it’s better to fall with them than try to keep them upright.

“There’s only place you can’t fall from, and that’s the floor,” she said. “Once you get them to floor, they’re safe from falling.”

I had spent time with nursing home residents before this, and I thought my role if someone might fall was to use every bit of my physical strength to keep them upright. This was a new perspective.

Kathy explained that if you fall with someone and get them safely to the floor, you might need to help getting them back up–but it wasn’t an urgent situation. In fact, she told us matter-of-factly that if one of our hospice patients was on the floor and we couldn’t help them back up, we should call hospice for assistance and just hang out with them on the floor while we waited for back-up.

This seemed like a reasonable strategy compared to trying to fight with every bit of muscle to keep someone upright–especially since I was about 125 pounds at the time (those were the days…holy metabolism) and some of my hospice patients would be much larger.

Kathy explained that often falls are more dangerous when we are physically trying to prevent the fall rather than accepting that person’s body is not able to stay upright. When we accept that a fall is imminent and help someone smoothly transition to the floor without injury, it’s a win.

And that was a revelation for me.

At the time, I found this useful information and applied it when I volunteered in hospice. However, in the years since the training I’ve found that maybe it has broader implications.

We often fight changes in other people when we might be more successful if we accepted that change was coming and became a part of that change. In other words, sometimes we have to fall with someone rather than fight the fall.

A friend of mine, John, whose wife died from Alzheimer’s a few years back, reminded me of this when he explained that the strategies he had used to make himself a college athlete and then a successful businessman were massive failures when he tried to implement them after his wife’s diagnosis.

John was a problem-solver. When there was an issue, he read everything he could get his hands on to fix the problem. And he was a hard worker. It didn’t matter what he had to do. He would go to the end of the earth to be successful. Things always went his way because he made sure they went his way.

With Alzheimer’s, that meant he made appointments at Mayo Clinic–and appointments at other memory centers when Mayo couldn’t “fix” Alzheimer’s. He even checked into a memory clinic in Switzerland before deciding there was little they could offer her. He read online articles about supplements and behavioral interventions that could “cure” the disease. He even sent money (I didn’t ask how much) to a guy online who offered to provide him with a diet plan that would reverse his wife’s symptoms. He convinced himself that if only he did enough research and diligently pursued all possible options, he could “fix” his wife.

In social settings, he worked hard to “cover” for his wife’s symptoms. When she was asked questions, he answered for her. When she did something that didn’t make sense to others, he explained that she was tired or stressed.

Sometimes she would say she was too tired to go to an event. He wouldn’t take no for an answer. He’d insist she attend anyway, even if he had to help her get dressed and blow dry her hair.

He didn’t want to see his wife fall.

He would do whatever it took to keep her upright.

After a couple years, it was his wife who convinced him to change his strategy. She was sick of how fighting Alzheimer’s consumed all their time and energy, and she worried that the fight was exhausting her more than Alzheimer’s itself.

She acknowledged that her disease was progressing, and she wanted John to come with her instead of battling the disease. She knew he was trying to fight the disease, but sometimes it felt like he was fighting her.

John adopted a new strategy. He accepted that her symptoms were getting more noticeable. He realized that she was still the same person she had always been, but he acknowledged the changes in their lives as a result of Alzheimer’s.

When I’m struggling and I confide in someone, you might think I’m asking them to hold me up. But often I’m asking them to fall with me. To break my fall. To hang out with me on the floor until I’m upright again.

There’s a time to fight like hell. But there’s also a time to accept that a fall is inevitable and not fight that fall.

And falling with someone is better than falling alone.

 

Good Deeds in Dementialand

It’s 2019, and I’m back.

New year, same me. I could tell you I’m ready to change my life by meditating and giving up wine. But that’d be a lie.

However, I did watch Tidying Up with Marie Kondo on Netflix and got rid of a bunch of pointless stuff (not without thanking it, of course). I’m not a big fan of New Year’s Resolutions, so we’ll call this a decluttering thing a win–and as I sit in my home office looking out a window at 7 inches of snow, I’m done with January and ready for spring.

Since this is my first post of 2019, I’m focusing on something positive. And I’m going to brag about some awesome people I know.

Let me start by telling you that part of my job as a faculty member at the University of Northern Iowa is to serve as NCAA faculty athletics representative. To give you a brief explanation of what that means, I’ll tell you that every university must have one professor appointed by the President of the university to assure the academic integrity of the athletics program. Through serving in this role, I’ve gotten to know some pretty incredible and well-rounded student-athletes.

So let me tell you a story that was forwarded to me via email by the President of our university with a note that said, “This hits so many of the issue that you care deeply about and I knew it would give you a boost on a cold January day.”

Our women’s basketball team was visiting Peoria for a game at Bradley University when  they were grabbing a bite to eat at a chain restaurant. A gentleman and his mother, who happens to have dementia, were dining at the same place. His mother was having some struggles using the restroom, which created issues because her son was only able to be in the restroom when no other women were present. He had to exit and enter several times in an effort to assist her. (I know that many of the opposite-gender care partners who read this blog have been in this awkward situation, which is why I’m a fan of family restrooms in public places.)

Enter our women’s basketball team. Not only did they offer to help in whatever way possible, they encouraged him to say in the restroom and assist her. The gentlemen noted that several other women had been in and out of the restroom without offering help, but at least three or four of our student-athletes had verbally expressed willingness to assist.

The man was so touched that he contacted our university to relay this story.

Our student-athletes had no idea that a simple gesture to assist a family impacted by dementia would get back to their athletic director and the President of their university. They didn’t know it’d get some social media exposure. They were just offering a bit of kindness in what was a difficult situation.

I’ve told our student-athletes before that being a good person always trumps being a good athlete or a good student. I often say that I care more about how they represent themselves and our university than their win-loss record or their grade point average.

To be fair, we won that game at Bradley in overtime, and I can’t say it didn’t make my day as I watched the live stream.

When I heard this story a couple of days later, it made my gerontologist heart happy.

To my friends with dementia and those who are dementia care partners, I know sometimes it seems like this world doesn’t care much about you. People blow you off. People minimize your challenges and marginalize you.

I see why you get discouraged when the world doesn’t support you (and often it doesn’t)…but don’t stay in that place.

Because people do care.

If you think young people nowadays are worse than ever, keep in mind that every generation says that. I’ve got scores of college students who reassure me daily that the world isn’t going to hell in a handbasket after all.

Sure, you might see news clips of young people being disrespectful to those different than them in age, race, religion, disability status, and background. And you might worry that’s the way of the future.

But these young adults I know? They’re not going to let that happen.

See you next Monday, friends.

 

 

 

Wandering Around Trying to be Helpful in Dementialand

I was leaving a nursing home when a disheveled and cheerful woman came up and asked me, “Do you need directions to the airport?”

In fact, I did not need directions to the airport, but the woman seemed so eager to deliver the directions that I said I was, indeed, headed to the airport. She excitedly told me exactly how to get there. I thanked her profusely.

As I walked away, an employee said to me, “That’s Eleanor. She just wanders around trying to be helpful. But sometimes it doesn’t go well and people find her annoying.”

She just wanders around trying to be helpful. But sometimes it doesn’t go well and people find her annoying.

I thought about this statement as I drove home. The staff member delivered it in such a negative way, but I wasn’t sure the negativity was necessary.

And I had to ask myself a question: Am I really that different from Eleanor?

Eleanor thought I needed help–but she was incorrect in her assumption. She offered me that help. Her directions weren’t useful to me. I wasn’t going to the airport. Even if I had been going to the airport, I already knew to how to get here. Even if I didn’t know how to get there, I had GoogleMaps on my phone. I didn’t need her help.

Forget about Eleanor for a minute. Let’s talk about Elaine.

Elaine is a college professor. She tries to help college students. She’s calls them into her office to talk about study habits, making an appointment at the counseling center, declaring a minor, career options after graduation….Sometimes these students ask Elaine for specific help in these situations. Many times, however, they don’t.

Elaine often makes an assumption about the type of help a student needs. Many times these students cheerfully accept her help. Sometimes they are resistant. Or even annoyed. Maybe they don’t think they need assistance with study habits. Maybe they think she’s being pushy when she suggests a psychology minor.

Am I really that much different than Eleanor?

You might think I do better than Eleanor at offering useful help catered to the situation in which I see a person, but a lot of days I’m not so sure.

Maybe none of us are all that different from Eleanor.

Perhaps we are all just wandering around trying to help people. And I’m guessing that some of the time we all have an incorrect perception of the help that our family members, friends, coworkers, clients, students, and/or customers need. Or maybe we have an accurate idea of the help someone needs, but we are misguided in our delivery. Perhaps people are resistant to our help because of their own baggage, and we don’t know how to overcome that.

Let’s face it…there are a lot of times we are well-intentioned but unsuccessful in helping someone.

I’m not randomly asking people if they need directions to the airport, but I do want to be helpful. Just like Eleanor, my intentions are good. However, I am sure that I’m often throwing out advice and input that is not useful to the recipient. Yet, like Eleanor, I can’t always accurately perceive when my attempt is misguided and when it’s helpful.

How many times have I given advice when someone has walked away with a polite smile and thought, “Wow. That was not useful at all?” How many times have I given someone input that wasn’t helpful and was even harmful without realizing it? I can’t always pinpoint when this has happened–because people are typically too kind to tell me–but I’m sure it happens a lot.

But let’s go back to Eleanor. Perhaps being helpful doesn’t always go well for her. But there’s something reassuring about human nature when dementia has limited a person’s world to a 110-bed nursing home and all that person does is wander around trying to help people. Eleanor might not know where she is. She might not know the year or be able to tell you whether or not she has children. But….still….her focus is helping people. And there’s something amazing about that.

And that’s why I’m going to forgive myself for all the times I’ve tried to help and it hasn’t gone well and I’ve annoyed people. Also, I’m asking you all to forgive me. Some of you have followed this blog for a long time now, and I appreciate you. I know that not everything I write is helpful. Maybe it’s bad timing or not relevant to you or just comes out all wrong.

I am currently sitting in my home office writing this as I look out onto the frost-covered field behind my house. But, figuratively, I’m just wandering around trying to help people as I write this blog every week. And I understand that sometimes it goes well, and sometimes I’m probably pretty annoying.

(Full disclosure–every once in a while I read a previous blog post and think I wrote something that is super unhelpful or just weird. In fact, a few weeks ago I read a post from last year and couldn’t help but think I might have had too much wine before coming up with some bizarre analogy.)

I hope, like Eleanor, you wander around your metaphorical nursing home trying to help people even as you acknowledge that at times your “help” will be misguided. Whether you’re a person living with dementia, a care partner, or a professional, I hope you’ll continue to look for opportunities to help even if you know your success rate is less than 100%.

After all, Eleanor did help me…although I didn’t need directions to the airport. An enthusiastic offer of help–even if that help isn’t that helpful in the way it’s intended–always brightens my day. You don’t have to help me to make me smile. You just have to want to help me.

No matter where we find ourselves in life, we feel the need to help others. We want to be useful. We feel more human if we can make a meaningful difference to someone else.

And that’s what makes the world an awesome place to be.

So keep wandering. Keep trying to help. Maybe it won’t go well. Perhaps you’ll be annoying.

But you keep doing it, and I’ll do the same…complete with my bizarre analogies and sometimes useless advice.