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.

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 Diet Coke. 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.

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.

I usually write a few holiday posts between Thanksgiving and Christmas. Today I’m cheating by re-running a previous holiday post, but I think it’s important enough to put it out there again. So here goes:

(Original post November 21, 2016)

I have a lot of blog subscribers who are dementia caregivers. Many of my regular readers have loved ones with Alzheimer’s, Lewy-Body dementia, Huntington’s, or another dementia. More often than not, I write to those who care about someone with dementia.

Today is different because I am directly addressing my readers with dementia. I know there are at least a few of you out there because I hear from you. Sometimes you tell me I hit the nail on the head with how I explained something. Occasionally you tell me I missed the boat. I am grateful to hear from you either way. You have taught me more than you will ever know.

So this is for you:

Dear Friends with Dementia,

Here come the holidays. You have dementia. It doesn’t define you. You are still you, but you are different. Please understand that the holidays can still be an enjoyable time for you, but that doesn’t mean they will be the same. 

Maybe you always made a huge family dinner for all of your relatives. Maybe they expect the gathering to be at your house again this year. Maybe you’re okay with that, and maybe you’re not. If you’re not okay with that, say so. If you’re okay with that but you have limits (say, you don’t have the endurance to have company overnight), say so.

If you always make the mashed potatoes for Thanksgiving, consider whether you are up for it this year. In making this decision, remember that no one will die if they don’t have your mashed potatoes. Perhaps someone else in the family can make them. Perhaps you can even get some at the Walmart deli.

It is normal for someone with dementia to have limited mental, emotional, and physical energy. You can spend that energy how you choose. Might you want to save some for visiting with family and friends rather than using it all in preparing a meal? Or do you enjoy cooking and want to maintain a role in meal prep even when your family tells you to rest? It’s up to you. 

Your out-of-town family members can stay at a hotel if it’s just too much to have them at your house. You’re not being mean. You’re not being lazy. You are not being anti-social. You have dementia, and you have limits. You will have a much better holiday season if you acknowledge those limits and work with them. (I have a friend who has a child with autism; she gives similar advice to other parents of children with special needs.)

If traveling is too much for you, stay home. And don’t feel guilty about it. If you are going somewhere for the holidays, think about how you are getting there. Flying can provoke anxiety for many of us without dementia. It can induce panic for many with dementia. If you don’t feel comfortable flying, you aren’t being a coward. If someone tries to talk you into it when the thought puts fear in your heart, that person doesn’t understand dementia. (Am I being too harsh?)

Don’t feel bad if you leave holiday gatherings early. Parties can be overly stimulating and anxiety-provoking for people with dementia. When your brain is tired and your energy runs out, it’s time to go. Don’t feel like a party pooper. And don’t apologize.

You may have a large clan. You may be used to buying them all loads of Christmas gifts every year. If you aren’t able to do it anymore, it’s okay. Black Friday shopping probably isn’t an ideal situation for most people with dementia. In fact, I’d argue that it’s not ideal for a lot of us (myself included). You can give cash. You can give gift cards. You can farm out your shopping to someone who is able to shop and enjoys shopping. Or you can do a family gift exchange where you draw names and only buy a present for one person. Another option–you can tell family and friends that you love them but you just can’t do Christmas shopping anymore. If people care about you, they’ll get that. If they don’t care about you, why were you buying them gifts anyway?

If you had a disease like cancer, people would understand that you have limits…dementia may create limits as well, but other people are less aware of them. If you feel anxious being out of your routine, stay in that routine as much as possible. Let other people know that you (and they) will enjoy the holidays much more if you make a few adjustments. Ask them to accept these adjustments. If they cannot accept these adjustments, do not take it personally. It comes from a lack of understanding regarding what you’re going through and an inability to accept that you are changing as a result of your dementia. 

Here’s what I’ve learned about the holidays in Dementialand…bigger is seldom better. Bigger is just overwhelming and stressful. However, after a diagnosis of a dementia, many people realize their “good” time on this earth might be limited. Their response is to try to pack everything they possible can into the holiday season to make it meaningful. This usually ends in frustration. And annoyance. And arguments.

I can’t say I know that it’s like to have dementia; I don’t. What I do know is that putting a lot of pressure on something to make it perfect usually means everything will go wrong. Don’t fall into this trap. Be flexible. Be patient. Don’t be too hard on yourself. And promise me that you won’t beat yourself up if at some point you get irritable with your family. It’s understandable, and it’s okay. 

This holiday season, I give you permission to say no. I give you permission to say enough. I give you permission to walk away from situations that are potentially frustrating, exhausting, and overstimulating. I give you permission to not send holiday cards, to avoid family members who cause you stress, and to let go of holiday traditions that you’ve embraced in the past. Most of all, I give you permission to tell your family and friends that the holidays might not be exactly the same as they have been in the past. 

That doesn’t mean you can’t have a meaningful and enjoyable holiday season.

Sincerely,

Elaine

P.S. Many of the points made here can also be applied to those of you who are struggling with depression or anxiety, have been diagnosed with an illness other than dementia, have a child with special needs, or have experienced the loss of a loved one (including miscarriage). 

How often do you allow a stranger in your bedroom when you aren’t fully dressed?

Do you like it when random people you’ve never met walk into your bedroom while you’re in bed? And then try to touch you?

I often ask these questions of my audience when I do presentations. They usually make people laugh uncomfortably.

But I don’t let it rest. Honestly, I ask them, do you have a lot of strangers who just walk into your bedroom like they belong there when you are half-naked? Are you okay with these people touching you? What if they want you to take a shower or a bath in front of them? How would you feel if they watched you go to the bathroom? You said you were fine peeing alone, but they insisted.

What would be an appropriate response on your part? Shouting for help? Cursing at them? Threatening to call the police? Kicking? Throwing a left hook to the chin? Trying to locate a sharp object?

But if I’m a person living with dementia who is in my own sacred space, perhaps in my bedroom at home or my room at a nursing home, and a person I don’t immediately recognize comes in to provide care, “behaviors” like telling them to leave or pushing them away are not well-received. In fact, those “behaviors” are perceived as symptoms of dementia and will often earn you a sedative.

Let me explain why I don’t see these “behaviors” as symptoms of dementia….

Because it is a perfectly natural and normal reaction to a potential pervert you don’t recognize being in your bedroom.

Sure, not recognizing individuals you’ve known for years can be a part of dementia. Not understanding that a person is actually there to help (or at least try to help) could be a result of having dementia. Not remembering that your husband hired this person to assist you when he told you twenty times today could a part of having a type of dementia….but objecting to perceived threats to your own personal safety and being…THAT’S JUST NORMAL.

I was thinking the other day about my friends. I wouldn’t say I’m the hostess with the mostess (because it’s not true and also because I’ve always objected to the phrase as sexist—does anyone say the “host the most?”) but my husband and I like to have friends over to our home. If you’ve been in our house, you’ve likely been in our kitchen and our living room. You’ve probably been in one of our main bathrooms. And it’s likely you’ve hung out in our basement.

There are very few friends who have been in our bedroom. And those who have been in our bedroom are there for a specific reason, like “Hey, we are rearranging our furniture. Can you help us move that armoire?” (That’s just a hypothetical example. I’m not sure I know what an armoire actually is and I’m pretty sure we don’t have one.)

My point is that most of us don’t have a lot of traffic in our bedrooms (with the exception, perhaps, of parents of young kids…although I know parents who have declared their own bedroom off-limits to their kids)—especially when we are literally in our bed or not fully clothed. Bedrooms are sacred and for most of us (nudists aside) our culture dictates that being not fully clothed leaves you a bit on the vulnerable side.

When you barge into a nursing home room, you are stepping into a space that you may see as institutional and hospital-like. Although I’d agree that many nursing home rooms are institutional and hospital-like, they are the only space belonging to those who reside in them. Maybe a woman and her husband owned a large farm house before she downsized to an apartment after his death and then moved to a nursing home when her health declined. Her space in this world is getting smaller and smaller. Maybe that room is like every other room on the hall and she shares it with another woman, but it’s her space.

It’s the space where she sleeps, wakes, dresses, and brushes her hair. Think about the space where you do those things. Aren’t you a bit protective of that space? Doesn’t someone in that space have to have a good reason to be there? What if they offer you no reason at all? What if they act as if they belong—and they seem to think you’re the one being weird for being bothered by the situation?

But it’s a “behavior.” It’s people with dementia just acting up, right? They’re giving us a hard time. They’re not behaving like they should….maybe it’s a full moon (oh, I love it when someone throws that one out there).

But let’s think about it.

When you open your eyes tomorrow morning, just for a second imagine this….

A stranger blows into your bedroom. No knock. No introduction. They’re suddenly at your bedside. You realize you’re wearing a t-shirt but no pajama pants—you took them off because it was hot last night. They want you to sit up. The want you to take off your shirt because they say it’s dirty. You think that’s just a line to get you to take your shirt off. You’re not sure what to do, so you fight it.

They want you to take a shower. You don’t feel like getting up, but they practically drag you out of bed to go down the hall to the shower.

Maybe this is a nurse’s aid that you’ve seen five days a week for a year. Maybe it’s your daughter. Or your grandson. Maybe you recognized this person yesterday and perhaps you’ll recognize them again tomorrow, but if you don’t immediately recognize that person and why they must approach you in that space and moment, your response to fight back is normal.

I mean, I don’t really let strangers in my bedroom when I’m in bed and half naked. If one did make it in, there’s probably not much I could do to make you think I overreacted. Pretty much anything goes.

So why is it so hard for us to understand why people living with dementia may be agitated, fearful, and angry as hell when that same thing happens to them?

I try to represent the diversity of individuals with dementia in my blog, but there’s a group that I’ve not discussed until this point…individuals with Down syndrome.

As you may know, individuals with Down syndrome are living longer than they have in the past. Our society provides more services to assist them in living independent and meaningful lives, and the stigma of having Down syndrome has decreased–although I’d argue it is still far too present.

Now that people are living longer, we know that they have an increased risk of Alzheimer’s. According to the Down Syndrome Society, about 30% of people with Down syndrome will have Alzheimer’s in their 50’s, and more than 50% will have Alzheimer’s in their 60’s. These numbers are a bit of an estimate…many people with Down syndrome never get a workup and actual diagnosis. Additionally, our standard dementia assessments may not always be appropriate for those with Down syndrome, and symptoms may manifest differently.

We know that people with Down syndrome typically have plaques and tangles in their brains by their 40’s even if they are not showing Alzheimer’s symptoms, and that the prevalence of Alzheimer’s is 3-5 times higher in those who have Down syndrome compared to the rest of the population.

Memory loss may be noticeable in the early stages of Alzheimer’s for someone with Down syndrome, but from my experiences families are more likely to notice symptoms like loss of enthusiasm, decreased sociability, agitation, sleep issues, and changes in personality early in the disease process.

The generation of individuals with Down syndrome that is currently hitting late middle age and early old age is the first generation that has primarily lived with family rather than been institutionalized. This is significant because it means that many rely on parents–often mothers–for assistance in their daily lives.

Many of these parents assumed that they would outlive their children, but the sharp increase in life expectancy has created a reality in which many individuals with Down syndrome are left to grieve their parents and then adjust to significant changes in living situation.

Many years ago, I worked as a sacker as a grocery story. I was never promoted to cashier because the assistant manager thought I wasn’t bright enough to handle money…and, yes, he actually told me that. On my evaluation, he also pointed out that someone complained to him that I had sacked their tampons with their grapes–which I guess was frowned upon.

As you might have guessed, I wasn’t exactly fond of that assistant manager, and I wasn’t always fond of the job in general. However, my saving grace was a co-worker named Louie who also sacked groceries. Although apparently customers did complain about my service, no one ever complained about Louie.

He was the most delightfully positive and efficient worker anyone could ever want. Every time I passed him during his shift, he’d give me a giant smile and high five. Louie, who happened be in his early 50s and had Down syndrome, was dropped off by his mom before his shift. While I trudged in dreading another day of being complained to by difficult customers, Louie would kiss his mom goodbye and practically (and sometimes literally) skip into work. Maybe I’m overestimating out of jealousy, but I swear he was employee of the month just about every other month.

I didn’t work at the grocery story for long, but I kept tabs on Louie after I quit. One day, I happened to be browsing through the newspaper when I saw an obituary for his mother. I was almost sick to my stomach thinking about what this might mean for Louie.

I knew he had a sister in another state, but he wanted to continue to work at the grocery story rather than move to a new community. His sister helped him find an appropriate group home to move to so he wouldn’t have to give up his job. He learned to take the bus to the grocery store.

During this time, Louie started being less enthusiastic about his job. He wasn’t as social as he had been, and he was at times uncharacteristically stubborn and uncooperative. He started to struggle with attentiveness to tasks. Once in a while, he would walk off in the middle of his shift and a coworker would have to chase him down.

Everyone figured he was struggling with the loss of his mom, but soon his sister was called by the group home due to his anxiety, sleep issues, and seizures. Eventually, he was diagnosed with Alzheimer’s. The group home told Louie’s sister that he’d need to find another place to live.

He ended up in a nursing home. The transition was difficult. Among other issues, he just didn’t fit in with the other residents. I heard his sister moved him to a nursing home closer to her home in another state…and then I lost track of Louie.

When I worked with Louie at the grocery story, I didn’t know I’d be a gerontologist or work in the area of dementia care. I just knew that Louie was a really awesome guy who happened to have Down syndrome. And I knew that losing his mother, who he had relied on his entire life, was tough on him. When I heard he had Alzheimer’s, I was surprised. It hadn’t even occurred to me that people with Down syndrome could have Alzheimer’s…much less that the disease was common in those with Down syndrome.

After he could no longer work at the grocery store and needed increased care, it just seemed to me that there was no place that Louie belonged. His Alzheimer’s meant that he needed more care than was available at a group home, and his young age and Down syndrome meant that he didn’t fit in at the nursing home.

That was more than twenty years ago.

But last year I spoke at a caregiving conference when an older woman approached me about her son who was in his 50’s with both Down syndrome and Alzheimer’s. And she said the exact same thing.

“It just feels like he doesn’t really belong anywhere,” she told me. “And I’m too old to take care of him.”

Over the last six months, I’ve been asked to do dementia education for three different agencies that serve individuals with intellectual disabilities. I’ve turned each one down because I didn’t feel like I had the expertise to address the unique needs of people with both Down syndrome and Alzheimer’s. When I was asked to suggest someone else to provide education, I was at a loss.

This is a population that we are struggling to serve.

People who have knowledge of dementia (like me) generally don’t have knowledge of intellectual disabilities, and people who have knowledge of intellectual disabilities generally don’t have knowledge of dementia. People with Down syndrome are often not a good fit for the services we suggest when someone is diagnosed with Alzheimer’s. And people with Down syndrome who now have Alzheimer’s may no longer be able to use the community supports that they have relied on in the past.

If we are going to do better at serving this population, we need to start talking about them.

I believe suffering to be a part of being human. It comes in many forms–physical, emotional, spiritual…and in my heart of hearts, I know we all experience it.

Cancer causes suffering. Divorce causes suffering. Parenthood causes suffering. Death causes suffering, and maybe life itself causes suffering. I mean, if you haven’t suffered, are you even living?

And–you might have seen this one coming–dementia causes suffering.

Yet, I cringe when I see the term “dementia sufferer” or read that someone is “suffering from dementia.”

Let me be clear. Dementia can be a tough beast that presents unique and brutal challenges. I have no doubt that there is suffering as a result of dementia–and this applies to both those living with dementia and care partners.

As someone diagnosed with a dementia recently told me, “Sometimes this dementia thing really sucks.”

She’s allowed to say that. She doesn’t need my permission to say that dementia sucks or that it’s hard or even that she’s suffering. She’s allowed to say that dementia sucks sometimes. In fact, she can say that it sucks all the time. I’m not about to chastise her for her negativity.

She gets to define her own journey.

I don’t get to define her journey. That’s why I am not going to label her a “dementia sufferer” or a “dementia victim.”

It’s not up to me to decide if someone is a sufferer or a victim–which is why it’s so frustrating to me that the blanket term used in the media to describe someone living with dementia is often “dementia sufferer” or “dementia victim.”

Ugh. Just ugh.

Why do we try to write the story for other people–even people we don’t know? The only person who can write the narrative is the person living it. When I meet someone with dementia, all I know is that they are living with dementia. I don’t know their level of suffering. (In fact, I don’t know how much anyone I meet is suffering in that particular moment, and I try to remind myself of this daily.)

Perhaps they are thriving in their life after diagnosis. I don’t think the general public realizes that you can live a good life post-dementia diagnosis, but I have met plenty of people who do. This doesn’t mean they don’t suffer. It doesn’t mean everyday is rainbows and unicorns. It just mean that they perceive themselves to have a positive quality of life overall. You don’t have to be happy every minute of every single day to have a good life, right?

There’s another problem I see with using the term “dementia sufferer.”

It puts dementia first rather than putting the person first. When I say “individual living with dementia,” the person is mentioned before the dementia. I am describing a person–who happens to have dementia. The individual is a human being, and the dementia is the detail.

And…still…I see multiple news stories per day with headlines that mention “Dementia Sufferers” and “Dementia Victims.” A while back, I decided to make a point, and it didn’t go well.

Maybe that’s an understatement.

A news outlet posted a story on Facebook about how “dementia sufferers” had to move out of a nursing home that didn’t meet federal standards. They used “dementia sufferers” in the headline and about 3,489 throughout the story. By the time I had finished reading, I’d had enough. This was a news outlet that should have known better, in my opinion.

Below the news story, I posted a comment suggesting we use the term “persons living with dementia” instead of “dementia sufferers.” I thought it was a nice, well-stated comment that avoided blame but sought to educate.

After three minutes later, someone replied to my comment. They called me the “f**king derp of the week” and said that these people had much bigger problems that the words we used to refer to them. This individual actually told me that my focus on language was (and I hate to even use this cringe-worthy word here) “retarded.” Ironic, right?

I won’t get into use of the “R” word here–but I was PISSED.

I’ve heard that you shouldn’t engage in an argument with an idiot because they’ll drag you to their level and beat you with experience. Well, I did exactly that. Perhaps it was because I was fueled by two glasses of Riesling, but I couldn’t let it go. Other people chimed in–and way too many agreed that my focus on language was ridiculous (although the language they used wasn’t as gentle).

But I think language matters.

If you’ve used the term “dementia sufferers” or “dementia victims” before, it’s okay. I understand that people who refer to those who live with dementia by these terms aren’t being condescending or mean…they just don’t know. And, to be fair, the public uses these terms when the media uses these terms.

But we can do better.

When someone lives with dementia, all we know is that they are a person living with dementia.

It’s not our job to judge their level of suffering or whether they are a victim.

I interrupt my weekly blog post to give you something a bit different.

I had the privilege of being on a video podcast with Dementia Action Alliance (DAA). If you aren’t familiar with the organization, it’s a national advocacy and education non-profit committed to created to making a better country in which to live with dementia. The organization is made up of people living with dementia, care partners, friends, and dementia specialists.

You’ll notice that I listed “people living with dementia” first. That’s because they are the driving force behind this organization. If you think people who are living with dementia can’t advocate for themselves, you obviously aren’t familiar with DAA.

You’ll find my “Professional Insights” video podcast on the website below. While you are there, I recommend checking out the “This Dementia Life” podcast (especially if you are newly diagnosed with a dementia) and the extensive collection of resources.

https://daanow.org/our-initiatives/connect-and-engage-with-others/podcasts/

The last time I wrote about this I got a lot of hate, but I’m hitting the topic again anyway.

Nursing homes.

I can’t tell you how many people approach me to discuss the guilt they feel after their loved one with dementia moves to a nursing home. Some of that guilt is self-inflicted…but much of it is a result of the way we as a society talk about nursing homes.

Elizabeth (not her real name) recently placed her husband who has Alzheimer’s in a nursing home.  She was having coffee with a friend when that friend said, “I hope you’re doing okay with that decision. I could never put my husband in a place like that.”

Well, a place like that is absolutely the best option for Elizabeth and her husband, Bill, at this point in time. Is it a perfect solution? Of course not. Is the care he receives always top-notch? Nope. Is she frustrated at some things she sees happening at the nursing home? Of course.

Do I have a better plan to suggest for her and husband? Not at all.

But let’s review how she got to this point…

Bill was diagnosed with younger-onset Alzheimer’s in his late 50’s. He took an early retirement from his job managing a restaurant, and Elizabeth continued working as an educational aide. She thought briefly about if it would be possible to quit her job or work part-time to spend more time with Bill, but it was never a realistic option financially. Even more, they were both on her health insurance. Their kids, who have their own kids, live across the country.

As Bill’s Alzheimer’s progressed, it became clear that he could no longer stay at home by himself while Elizabeth was at work. The proverbial straw-that-broke-the-camel’s-back was when a neighbor called Elizabeth to let her know Bill was standing in the driveway in his boxer shorts in the middle of January. This would be awkward in any climate, but it was downright dangerous during the midst of an Iowa winter. When the neighbor approached him, he become agitated and took off walking down the street.

Elizabeth hired some caregivers to the tune of about $25 an hour. They could check in on Bill while she was working. However, as Bill needed more and more support, she realized it made no financial sense to pay a caregiver more than she was paid herself. To make a long story short, they were going broke.

She heard about an local adult day center where Bill could hang out during the day while she worked, but the cost was about $80 a day. She didn’t see how they could afford it. A kind family friend offered to stay at the house with Bill for free a few days a week, but that friend became less reliable as his own health started to falter.

One day Elizabeth came home from work to see that Bill–who had only been alone for about 30 minutes–had accessed the fuse box in the basement and turned off all the circuits. There was no power to the entire house. Another day she arrived home to find him on the bathroom floor. She wasn’t sure if he had fallen or just laid down…and he couldn’t remember. He also couldn’t remember how to stand up, and she ended up calling a friend for assistance.

One day Bill walked to downstairs to where they kept the cat’s litterbox. In the past, he had been responsible for changing the litter. On this day, he picked up the litterbox, dumped its contents on the floor of their bedroom, and placed the empty litterbox in the middle of their bed. If there was ever a day Elizabeth thought she would lose her mind, this was it.

Elizabeth started putting a Depends on Bill each morning after coming home several evenings to find out he had accidents during the day. She felt awful that he would sometimes sit several hours in a soiled Depends before she made it home. He also stopped eating during the day unless there was someone to prompt him. At a doctor’s appointment, Elizabeth was horrified to learn he had lost 30 pounds in two months.

A social worker told Elizabeth that Bill should not be alone in the house during the day. Then the social worker recommended in-home care and adult day services…both of which Elizabeth had already figured out were too expensive. The social worker then walked Elizabeth through pages of pages of paperwork so that she could tell her in the end that they were not eligible for financial assistance with these services.

Bill’s health continued to decline. The stairs at their home became a problem. He started having what their doctor called “night terrors.” He would get up in the middle of the night and wander outside if Elizabeth didn’t catch him first. She hung a bunch of jingebells on their doorknob as a safeguard, and every night she hoped for a solid three to four hours of sleep.

The situation wasn’t sustainable. She was drowning.

Elizabeth knew how nursing homes worked. They would pay out of pocket until the had no more money to pay out of pocket…and then he would go on Medicaid which would pay the nursing home for his care.

It was not a good option. In many ways, it was an awful option. But it was still the best of her limited options. (And I can’t help but mention we have more options when we have more money. That’s the way the world works, folks.)

She painstakingly visited every nursing home within 30 miles and talked to multiple staff members and families about each facility. She can’t say she loved any of them, but she liked a few more than others. Then she put her husband on a few waitlists. And waited a few weeks until she got a phone call.

So Bill moved to the nursing home. The move itself went better than she expected. She held it together emotionally until she was driving home and had to pull over to sob in the Taco Bell parking lot.

Their kids weren’t able to come back for the move, but they came a few weeks later. Elizabeth’s daughter said she would not have done what her mother had done; she would have quit her job to stay home and take care of her own husband if she were in her mother’s shoes. Elizabeth didn’t have the energy to explain that you just can’t quit a job when it’s your only income. She didn’t go to the trouble to explain that keeping Bill at home was becoming a detriment to her health and a risk to his as well.

Other friends and family members weren’t so reassuring either. Her son told her that she couldn’t see his dad living long with the “shitty” care that he receives. In fact, he’s taken to calling the nursing home “Shithole Acres.”

He wishes his mom had picked a better facility. He doesn’t seem to understand how much effort she exerted in “shopping around” and how available nursing home beds aren’t always easy to come by. Elizabeth knows her son is adjusting to a difficult situation and doesn’t want to rock the boat by picking a fight with him.

Elizabeth noticed that the same people who seemed most bothered that Bill was living in a nursing home couldn’t be bothered to go see him.

And sometimes that’s how it goes…

Our frustration with what we perceive as sub-par care and low quality of life in nursing homes is misdirected when we target the care partner. Throwing a guilt trip (whether intended or not) in their direction is hurtful.

We seem to think that most families deposit their loved ones at nursing homes like soda cans in a recycle bin. We use words like “abandonment” and “desert.”

Sure, that happens. But I don’t see it as the norm.

I see that every family has a story. Most nursing home placements are both the end and the beginning of a struggle. They are typically a response to a crisis rather than a welcomed new journey. They are hard for the new nursing home resident, and they are hard for the care partner. They are just…hard.

When we tell people we could never place our loved one in a nursing home, we are–in a way–saying we are better than they are. Well, a nursing home may be good enough for your family but not good enough for mine. When someone says they could never place their loved one in a nursing home, keep in mind that they’ve never had to make difficult decisions about a loved one’s care. Don’t be too harsh. They’ll get there.

When someone says they could never do that to a loved one, they are perceiving nursing home care as some sort of punishment. We just didn’t love our family member enough. Or maybe we had some sort of deep-seated resented toward them. That’s why we put them there. We joke about this…If we get annoyed with Mom or Dad, we say something about putting them in a home. And people laugh. Because isn’t putting someone in a home the worst thing you could ever do to them?

And sometimes we make the promise. We promise the people we care about that we will never place them in a nursing home. And many of us have to break that promise.

Let me say something publicly. I love my husband very much. I might, however, someday make a decision to place him in a nursing home. Not because I’m mad at him. Not because he’s not a great husband. But because it might at some point be the best available option (under not the best circumstances) for my family.

My husband knows this because once I was doing a speech that he happened to attend when I blurted out, “If you get in a car accident on the way home and have an awful brain injury, you’ll have to live at a nursing home because I can’t quit my job and our house isn’t accessible.”

(The joys of being married to me, right?)

But many spouses before me have had to make difficult decisions to place a loved one. Who’s to say I won’t be one of them? I refuse to make promises I can’t keep. I promise to always take the best possible care of my husband, but I can’t promise he will always live at home.

If you have had recently been through the process of nursing home admittance with a loved one, let me say something to you.

I know that the process is difficult, and I know you likely wonder if you could have somehow made different choices. Maybe you think the nursing home is a pretty nice place. I hope so. But you might see that your loved one doesn’t receive the care that you wish they received.

Perhaps you don’t know when to speak up and when to stay quiet. Maybe you struggle everyday to drive there and see your loved one in their nursing home room. Or maybe you struggle every day to say goodbye and leave the nursing home. And I’m guessing you are struggling with at least 99 problems I haven’t mentioned.

But know this: A nursing home is often the best option that we have under not the best circumstances. If you had won the Powerball, you could have paid for 24/7 live-in care. But you didn’t win the Powerball. If you had been born into money, you could have chosen to redesign your home or even move to a home that works for someone who needs care. But you weren’t born into money.

We are all just people trying to make it with the resources we’ve got available.

This means that the best care we can afford for a loved one might be nursing home care.

And unfortunately, this care is often imperfect and less than ideal–because our system is imperfect and less than ideal.

But please stop beating yourself up because you are part of an imperfect world.

Sarah–not her real name–lives in a nursing home and has Alzheimer’s. As she nears the end stage of the disease, she’s lost the ability to communicate verbally.

Sarah has been a favorite of nursing home staff for her kind smile. Once in a while she is teary-eyed for reasons she can’t express, but she generally exudes a sense of peacefulness. Employees at the nursing home see her as one of the “easiest” (their words–not mine) residents.

When Sarah starts being disagreeable, they say she’s “giving them a hard time.” I have issues with their terminology. She’s not giving them a hard time. It’s not about them. It’s about Sarah, and she’s obviously having a hard time.

She has always welcomed assistance with eating, but now she bats away the spoon as they try to lift it to her mouth. She refuses to cooperate when they change her clothes. She’s made a few weak attempts to slap or hit nurses and aids. Sometimes, when she is touched, she cries out angrily. Staff uses phrases like “acting out,” “behavioral changes,” and “uncooperative.”

These changes occur gradually over the course of a month or so, and staff members talk about how her Alzheimer’s is progressing and how she’s moving into the next stage of the disease. Her family lives a few hours away. When they come to visit, they notice the changes. They’re sad to see her progressing. Her daughter is almost apologetic to the staff when she realizes how difficult it must be to care for Sarah.

“It’s okay,” a nurse tells Sarah’s daughter. “People at this stage of Alzheimer’s act out a lot. We’re used to it.”

Things get worse. Sarah starts yelling at night, but when staff comes in to check on her, she won’t let them touch her. They assume she’s having hallucinations. Nursing home staff and Sarah’s family work on finding some medications to “keep her a bit calmer,” but none of the medications are effective. Although her daughter keeps coming to visit, the grandchildren stay home. No one wants them to see their grandma like this.

The nursing home staff feels their efforts at comforting Sarah at night are futile, so they stop checking on her every time they hear her crying out. One night she falls out of bed. An aid finds her unconscious and calls an ambulance. Details are sketchy on the last time someone might have checked on Sarah and how long she might have been on the floor.

Sarah finds herself at the hospital. Her daughter drives to be with her as the doctor runs some routine tests. The routine tests raise red flags. There are more tests. Sarah is admitted.

Over the next few days, the doctor discovers that Sarah has both bone cancer and a moderately-sized kidney stone. At this point, he believes that the kidney stone is causing more pain than the cancer, but he has no way of knowing.

But he’s certain that she’s in terrible pain.

When Sarah’s daughter tells the rest of the family, they are irate at the nursing home and want to call a lawyer. They don’t want Sarah to go back to the same facility, but the hospital social worker doesn’t see any other immediate options.

Sarah’s daughter is a bit more forgiving of the nursing home. After all, she visited about twice a week and didn’t consider that her mother might have a medical condition causing her pain. She didn’t insist she visit a doctor. She didn’t argue with the staff when they said she was “giving them a hard time.” And she wasn’t surprised her mother fell out of bed. In fact, she was surprised it hadn’t happened sooner.

In the end, no lawyers are consulted and Sarah returns to the same nursing home. Her family enlists the assistance of hospice, and she passes away at that nursing home about three months later.

I don’t know enough details to tell you if the nursing home was negligent. And I’m no lawyer anyway.

What I do know is that Sarah’s situation is far from rare. When people with dementia lose the ability to communicate verbally, they don’t lose the ability to communicate. Communication changes.

Expressions of pain may come in the form of changes in behavior. Unfortunately, we often discount these changes as part of dementia rather than responses to discomfort and distress.

When someone can’t tell us they are in pain using words, they tell us in other ways.

Sometimes we don’t listen.