Category Archives: dementia

Why Dementialand Needs an Orientation

aging, alzheimer's, caregiving, dementia, families, , , , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Small Victories in Dementialand

aging, alzheimer's, caregiving, dementia, lewy body dementia, , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Limitations in Dementialand (and Comments on Why I Am Not a Nashville Recording Artist)

aging, alzheimer's, dementia, , ,

When I was growing up, my parents told me I could be whatever I wanted to be. I could do whatever I wanted to do. They said that the sky was the limit. I should aim high and I could accomplish anything in the entire world.

MY PARENTS WERE LIARS.

I cannot accomplish anything in the entire world.

For instance, I’d love to tour and sing with a band. As I child, I spent a lot of time singing in front of the mirror to my favorite tapes (yes, tapes) using a remote control as a microphone. As time went on, it become apparent that my dream of singing with a band would not come true.

I have twice been accused of mocking the national anthem. In my defense, I was just singing it along with a group. However, people have actually thought I was making fun of our country because my rendition of it was so awful. Now I always lip sync the national anthem. It’s just the best way for me to show respect for our country.

Despite being voice-challenged, I love karaoke. In my early 20s, I sang karaoke with a friend at a bar in Des Moines called Miss Kitty’s. After our rendition of “Should’ve Been a Cowboy” by Toby Keith, we walked back to our table. My boyfriend at the time said to my friend, “You sounded really good.” Then he looked at me awkwardly and took a long pause. He finally said, “Elaine, you looked kinda cute up there.”

I won’t ever tour and sing with a band. There will be no record deal for me. I think I started the long journey toward acceptance of this when I hit 30, although every once in a while I relive that childhood fantasy I had to be Reba McEntire and sing “Fancy” to a packed crowd. (By the way, it was only a couple years ago that I realized “Fancy” was about prostitution. I just thought it was about a girl heading off to the big city to grow as a person.)

We tell our kids they can do whatever they want in life. We tell them that they can be whoever they want. And I really think we are all capable of being successful, but we need to pick goals that fit with our strengths. We have to know ourselves, and that means knowing what we are good at–and what we aren’t good it. We gotta figure out what we can do and what we can’t do. Success is about hard work and determination. It’s also about “fit.”

I met a wonderful woman who volunteered for many years at a hospital’s gift shop. The hospital staff loved visiting with her, and she enjoyed helping hospital visitors pick out gifts for friends and family. After being diagnosed with Alzheimer’s, she struggled to run the cash register. A few times she made errors in counting cash at the end of her shift. It was time for the volunteer coordinator to tell her that she just wasn’t able to volunteer at the gift shop anymore. It broke both of their hearts.

To her credit, the volunteer coordinator told her that she didn’t want to lose such a valuable member of their team. They had a long conversation and another plan was put in place. The woman would volunteer for the gift shop in a different way. She would knit scarves, hats, and mittens. Then her husband would deliver her work to the gift shop to be sold. All proceeds would go to the hospital’s pediatric cancer unit.

No matter how determined that woman had been to keep running the cash register at the gift shop, it just wasn’t a fit for her any longer. And, to be truthful, there may be a time in her future when knitting for charity isn’t a fit for her. It’s not a matter of strength or will. Our skills and capabilities change. That’s true for people with dementia, and it’s true for the rest of us.

The challenge is accepting those limitations and finding goals that make the most of present abilities. We all struggle to accept our limitations. In other words, sometimes we need to let go. We need to let go of what we can’t do in order to fully appreciate what we can do. And that’s not easy. There are times we need to push hard to pursue our dreams, and there are times when we need to realize that we could make more of a difference in this world if we put our talents toward a different dream. However, sometimes accepting our limitations and letting go means that we have make uncomfortable admissions to ourselves. It might mean we have to admit that we’re not good enough at biology to go to med school, that we aren’t genetically made to run a marathon in under three hours, or that our Alzheimer’s disease is progressing and there’s nothing we can do to stop this.

With dementia it may be more of a struggle to accept limitations because abilities change quickly and the disease itself may make it difficult to have insight about one’s functioning. Someone with dementia may also forget their limitations. They may forget they can’t drive or forget they no longer go to work everyday.

If I’m being honest, I sometimes forget my limitations as well. About once a year, I decided I’m going to sing karaoke. I’m reminded very quickly of why I am a college professor and not a music sensation. And it’s a good way to affirm that I’ve made some wise choices along my career path. Thank goodness I didn’t move to Nashville when I was 18 like my heart was telling me to.

Why There Are No Superheroes in Dementialand

alzheimer's, dementia, lewy body dementia, pwd, , , ,

Tuesday was National Superhero Day. There’s a day for everything, right? Pancake Day, Oyster Day, Star Wars Day.

Superhero Day got me thinking in a way that National Frozen Food Day, Johnny Appleseed Day, and Goddess of Fertility Day did not. (However, National Frozen Food Day did make me crave frozen French toast sticks and tater tots.)

I’ve been thinking about how I don’t believe in superheroes, and I take issue when people call other people superheros.

I have a friend who is pretty impressive. She gets up every morning at 4 and runs 6-10 miles. Then she works all day. At night, she teaches a couple of yoga classes. She’s kind, funny, and humble. I don’t know how she does it. I’ve heard a lot of people say she must be a superhero.

But saying she’s a superhero doesn’t do her justice. Superheroes have special powers. They have capabilities that the rest of us don’t have. That means superheroes aren’t really that inspiring or impressive. My friend doesn’t have any special powers. She does what she does because she chooses to rather than because she’s some special breed. I think that’s more powerful than having some sort of superpower status.

I’m not inspired to go out and fight crime in my community because a superhero does it. I might be more inspired if a real person did it. To me, real people doing impressive things are infinitely more amazing than superheroes.

I am in awe of some of the dementia caregivers I have met. They are family members, friends, neighbors. They never sought out the caregiving role. It wasn’t a job they applied for and it wasn’t a path they chose, but they do the best they can.

It’s a guy who plays Uno with his wife for hours even though she doesn’t remember the rules and they are basically pushing cards around on the table aimlessly. And it’s not a burden to him. He loves every minute of it and knows someday he’ll cherish this time spent together.

It’s a woman who patiently answers the same question over and over when her husband with Alzheimer’s asks it …again…again…and again. And, amazingly, she answers in the exact same tone of voice the first time and the thirteenth time.

It’s a daughter who knows her mom’s medical record like the back of her hand. She organized and systematic in caregiving. When her mom is hospitalized and a medication mistake is made, she’s quick to correct it.

And I’ve often mistaken some people with dementia for superheroes. I know people in the earlier stages of dementia who do public speaking, sit on panels, and write books. I am in awe of them for the courage they show in times of uncertainly. They put themselves out there despite their own fears. They help me learn things about dementia that I could learn in no other way. They are making more of a difference than they realize.

A couple of days after September 11, 2001, I heard something that has stuck with me. When there is a disaster or a tragedy, you will see good-hearted, kind, and giving people stepping up to the plate. You have to look for those people and notice that positivity or your spirit can be destroyed by witnessing the devastation. And I was amazed (and continue to be amazed) at the good that 9/11 brought out in people.

But all those people sifting through debris at the World Trade Center? They weren’t superheroes. They were ordinary people stepping up to the plate in extraordinary ways. They were real. And I don’t think we can fully appreciate their actions unless we understand that they were real people with friends, families, strengths, vulnerabilities, fears, and favorite TV shows.

I feel the same way about some of the people I’ve met in the dementia community. They step up to the plate in times of struggle and tragedy. I remember having a conversation with the son of a middle-aged woman who had dementia. He had changed his work schedule to work third shift so that he could stay with his mom while his father worked during the day. He and his father had worked out this plan to delay placing his mother in a memory care unit.

When I was speaking with this guy after a support group meeting, I noticed a woman standing nearby eavesdropping on our conversation. Finally, she jumped in and said, “Wow. You sound like Superman.”

The man made some jokes about how no one had ever seen Superman and him in the same room. Then he pointed out that he was in no way a superhero. In fact, he was sleep-deprived son who was just trying not to screw everything up. He said that some of his days with his mom were epic disasters, but he kept thinking about how he could do better–and he kept showing up.

He told us that a few weeks ago he had forgotten to get gas and found himself stranded and embarrassed on the interstate…with his mom in the passenger seat. And a good day was when he had time to grab matching socks. He confided that he had no idea how much longer he could do this. He said that he often wondered if he needed to be on anti-depressant and he really wanted to start going to church again but Sundays were his only day to sleep in.

It’s only after I hear about the real struggles of caregivers that I appreciate what they do.

Superheroes don’t impress me. Real people do.

What My Trip to the Distillery Reminded Me About Dementialand

dementia

I’ve never been someone who has struggled with motivation. I have been someone who has struggled with fun. And you might think struggling to have fun is better than struggling to be motivated, but I disagree. To live the best possible life, we have to balance motivation and fun.

I sometimes opted out of recess in elementary school. I stayed inside to organize art supplies for the teacher. Often I used wipes to disinfect the desks or straightened letters on the bulletin board. Yep, I was that kid.

In college, I didn’t go out on Friday nights with friends because I had a paper to work on–even if that paper wasn’t due for another week or two. Sometimes I stayed in because I knew Friday night was the best time to use the washers and dryers in the residence hall. (Hot tip: It really was.)

In many ways, I was pretty lame until I was about 27. I’d like to think I’m more fun now than I used to be. I may also be a little bit less motivated and ambitious than I used to be. I’m better at understanding what has to be done now and what can be done later. I’ve figured out that some of the things I used to see as important just aren’t.

This is a busy time of year in the academic world. It’s the last week of classes before finals. My schedule is stacked with appointments with students concerned about their grades. I have a load of assignments to evaluate. And I’ve been out in the community a lot the past month doing public speaking and community education.

However, about a week ago, I decided to forget about my to-do list (something I may not have done ten years ago) and go on a field trip of sorts. I planned a trip to a distillery and winery about an hour away. I had checked into tours a while back, and we (my husband Bill and our friends Kristi and Paul) set our sights on a 3 pm tour. We left early enough to get some lunch–and wine–there. Kristi was even nice enough to pack us individual snack packs for the car. Mine was special because I’m a vegetarian. She aims to please.

I had been excited about this outing since we had planned it. And that brings me to a point I want to make about fun…there are three parts of fun. First, we anticipate having fun, and the anticipation of fun is fun in itself. I had fun anticipating and thinking about our upcoming trip to the distillery/winery. I even had fun telling other people about our planned trip. The second part of fun is the actual occasion of having fun. In this case, we had fun on our outing. (Well, I did. I hope everyone else did as well.) And then there’s the third part of fun, which is remembering the fun. Remembering fun is fun in itself.

Every other year, a group of my family and friends (with my mom as ringleader) plans a trip to South Carolina. We’ll be going in August. I’m already having fun anticipating it. It’ll be fun while we are there. And then we’ll have fun recounting and remembering all the meaningful, humorous, and ridiculous things that happen on the trip. Even things that don’t seem that fun at the time can become fun as memories–like the life-threatening jellyfish attack I endured. (Okay, life-threatening is an exaggeration, but I had a visible scar for over a year. I had no idea a jellyfish could do that.)

Fun is not just fun in the moment it happens…unless you have end-stage dementia.

Dementia can steal part one and part three of fun. All that is left is the fun that happens in the moment. When our memory is compromised, we may not be able to anticipate or look forward to events. We may not remember that fun things are going to happen. And after we have fun, we may not remember the fun we had.

But what remains is the fun we have in the moment. When dementia takes away parts of us and parts of our experiences, what remains becomes even more important. The present moment becomes more (not less) valuable because it won’t become a memory for the person experiencing it.

I commonly hear people say something like, “Grandma won’t remember if we visited her anyway, so why should we bother?”

I’ve responded to this in different ways, but the best rebuttal came from a woman who was describing to me why it was so important to visit her mother even though her mother wouldn’t remember the visit.

“I had a first birthday party,” she told me. “I don’t remember it, but I’m sure I had a lot of fun at the time. And other people remember it. Even if I don’t remember it, it still had value. It wasn’t a waste of time.”

She went on to point out that we interact with babies even though they won’t remember it. No one says “I should go see my granddaughter who was born last week but I think I’ll wait until she’s old enough to remember the visit.”

It’s enough that the visit will be enjoyable in the moment and that we will remember it. Why is it so different with someone who had end-stage dementia? We like to make statements about how life is about making memories, but sometimes it just isn’t.

Anticipating and remembering fun is great. But when that’s not possible, having fun, connecting, and enjoying the moment is enough. And when it’s all you have, it’s all the more meaningful.

Changing the Environment in Dementialand (and How I Broke One of My Worst Habits Ever)

alzheimer's, caregiving, dementia, nursing home, , ,

Recently I realized I had developed a really bad habit. Not just bad but dangerous. I had started glancing at my phone while driving. I’d hear it buzz and couldn’t resist taking a look to see who had sent me a text or email. I wasn’t that person driving in traffic with my phone in my hand, but I wasn’t proud that I couldn’t drive the 12 1/2 minutes home without looking at my phone at stoplights.

So I tried to stop. And I couldn’t. It had become a habit, and habits can be hard to break. I wasn’t going to be able to easily extinguish my urge my look at my phone, so I was going to have to change my environment.

I made a decision to silence my phone and put it on the floor of the backseat where I could not see or hear it. For a couple of days, I found myself wanting to look at it. Eventually I stopped thinking about it as much. Putting my phone out of reach and out of sight (literally) made all the difference.

I decided to try this strategy after thinking about the advice I give many family and professional caregivers who have loved ones with dementia. I am always using the phrase “Change the environment.” Changing the environment is easier than changing a person’s impulses, thoughts, and behaviors. In other words, putting my phone where I couldn’t reach it was easier than not reaching for my phone when it was on the seat next to me.

At a caregiver support group, I spoke to a woman who said that her husband with Alzheimer’s was destroying things around their home. For instance, he had stood on a chair, taken the clock off the wall, and yanked the hands off of the clock’s face. He had also slammed some of her collectible dolls onto the floor, cracking off their heads. One day he even took some framed photos of the wall and literally threw them out the back door. She found herself losing patience with him.

She asked what she could do to get him to stop. I only had one idea. She needed to change the environment. I suggested she take anything she found valuable, meaningful, or important and place it in one room of the house. She could then use a lock system to keep him out of this room. As long as the items were around and available to him, he was going to continue to destroy them (and she was going to yell at him). As I saw it, the only option was to change the environment.

I gave the same advice to staff at a nursing home recently. A woman with dementia had a room that overlooked a fantastic garden. In the middle of the garden was a large concrete rabbit. The woman thought the rabbit was a stray cat, and she spent a lot of time worrying about this stray cat. She didn’t know if someone was feeding it or if it had a home. All day long, she tried to go outside to help the cat. It was to the point that the woman was sometimes in tears because she wanted to check on the cat but couldn’t get outside. She was wondering around the facility in hysterics. Obviously, telling her the concrete rabbit wasn’t a cat was not helpful. Again, I only had one suggestion–change the environment.

I asked an employee if it was possible to move the concrete rabbit. She explained that it was purchased specifically for that spot. Then I proposed another idea…move the resident to room where she could not see the rabbit. In the end, they did move the rabbit. I guess that was the easier option. They changed the environment.

Changing the environment can set us all up for success. I’m not just referring to those with dementia. If we don’t want to be tempted to get ice cream on our way home from work everyday, we should modify our route so we don’t drive by Dairy Queen. If we don’t want to spend more than $50 on a trip to Target, we should take $50 cash and leave the credit cards at home. If we are trying to curb drinking, we should stay out of bars. It’s easier to modify the environment than to depend on our willpower and reasoning when challenges arise.

When it comes to “challenging behaviors” in dementia, sometimes changing the environment seems to be an obvious solution, but it doesn’t occur to the people closest to the situation. I once spoke to a woman whose mom had Alzheimer’s and was hospitalized for a urinary tract infection. A friend had sent beautiful (and likely expensive) flowers to the hospital. The flowers sat in a large vase in the corner of the room. However, the mother thought the flowers were a scary clown face. She kept complaining about the clown in the corner staring her down.

The daughter and the nurses kept bringing the flowers over to show her that they were indeed flowers rather than a clown face. Of course, she was not convinced and become more and more agitated. Then a 10-year-old relative stopped in. He sized up the situation, picked up the flowers, and slammed them in the trash. Then he yelled, “I killed Scary Clown!” Problem solved. (In retrospect, he could’ve taken them out to the nurses’ station, but I guess he had a taste for the dramatic.)

It’s much easier to move a concrete rabbit than to convince a woman with dementia that the concrete rabbit is not a stray cat who might be hungry. It’s much easier to put valuables in another room than to nag a guy with Alzheimer’s about why he shouldn’t demolish them. And it’s easier for me to put my iPhone in the backseat than to try to resist the urge to look at it while driving.

If you interact with someone who has dementia, consider changing the environment in particularly in response to behaviors that might be harmful and dangerous. If you have a goal or are trying to break a bad habit, consider changing your environment to set yourself up for success.

Oh, and if you can’t help but look at your phone while driving, throw it in the backseat. If that doesn’t work, consider the trunk.

A Bad Day in Dementialand (aka Why I Am Not a Saint)

aging, alzheimer's, dementia, nursing home, pwd, ,

If I meet someone for the first time and they ask what I do for a living, I say that I’m a college professor. If the conversation goes a little further, I tell them that part of my role is also doing community outreach on Alzheimer’s and related dementias.

A typical response is, “Being around people with dementia must be so difficult.” Sometimes people say, “That must be really hard for you.”

They say it as if they think I’m some sort of Mother Theresa. Trust me…They’ve definitely no reason to perceive me as a saint. When I get frustrated, I curse like a sailor, and there are times I’m not even all that nice (in my defense, that’s typically when I’m hangry). I also once punched a guy at a waterpark while we were both treading water–although that was because the guy was stealing inner tubes from small children. But, in summary, I’m in no way an angel.

I’ve struggled to verbalize how I feel when someone says it must be hard working with people who have dementia or when someone says I’m great for working with “those people.” Finally I’ve finally come up with a response.

I say something like, “Working with people who have dementia is not nearly as hard as having dementia.”

I went to a memory care community a while back to visit some people who have Alzheimer’s. I was looking forward to seeing a particular woman–that I’ll call Donna–that I had a great chat with when I had visited the previous month. (For the purposes of my work, a “great” chat may not make a bit of sense but generally includes a lot of smiling and laughing.)

However, when I got there, Donna seemed like a completely different person. I’m not talking about her level of confusion. (I don’t judge how well someone is doing by their level of confusion. In fact, sometimes “pleasantly confused” is a great goal).

In sum, her whole demeanor was different. No smiling. No laughing. I couldn’t connect with her. She wouldn’t even make eye contact with me.

Donna was anxious. Almost panicky. Terrified of something. But she couldn’t express what. And I just couldn’t get “in.”

She was teary-eyed and it was almost like she couldn’t catch her breath. Perhaps she was having a panic attack. I wondered if she was in pain but I was told the nurses had found no reason she’d be hurting.

I had no idea how to help her. I sat with her for a while. She was sitting in a recliner by her bed, and I sat on the edge of her bed. I think she knew I was there, but I don’t know.

I went to talk to the lifestyle coordinator at the facility, who happened to be one of my former students. I asked her about the situation and she got visibly emotional. She said this had been going on for a few weeks and she didn’t know what to do either. They had been using sedatives but they seemed to cause hallucinations and other side effects for Donna.

We decided to try some music. I have seen music have amazing effects for people with dementia. In many cases, it can be more effective than a sedative in reducing anxiety. We turned on some Sam Cooke. If anything, it made her more agitated. We tried Johnny Cash and Frank Sinatra. Even worse. At one point (during “I Walk the Line” if I remember correctly), she lifted her arm like she was trying to slap the lifestyle coordinator. It was her only acknowledgment that we were with her.

When I was in Donna’s room with the lifestyle coordinator, Donna’s daughter and teenage granddaughters came to visit. They lived across the state and hadn’t seen her for a while. The sight of her made them break down. One of Donna’s granddaughters went down to the lounge and didn’t come back.

I remember taking a glance at my cell phone and realizing that I had stayed much longer than I had planned to. I had a meeting on campus, and I had to hustle to get there.

I remember getting into my car and taking a moment to just breath–even if meant I’d be a little late to my meeting. I’ve been with people with dementia in their final hours and as they’ve passed away, but those few hours with Donna were much, much tougher for me.

On a personal note, I related to Donna because I’ve had issues with anxiety and depression. Although I at times felt alone on my journey, looking back I really have never been alone. I could reach out for support. I could connect with people who cared about me, and people have always been there when I needed them.

Donna, on the other hand, was alone. We were with her, but she was alone. She couldn’t let us in to support her. She couldn’t let us in to be there for her. I had this strong feeling that Donna needed us, and I knew we wanted to be with her, but Alzheimer’s wouldn’t let us.

That was the hardest day I’ve had working with someone with dementia. As I drove back to campus, I felt a little bit sorry for myself. My mind was on Donna (and my failure in being there for her) but I had to pull it together for a meeting on something that seemed pretty inconsequential. I was tempted to say I was sick and skip the meeting. I was exhausted. And I felt like a loser, to be honest. I have a ridiculous amount of tools in my repertoire to connect with people who have dementia. Every single one of them had been an epic fail on this day. It was a bad day for me.

Then I realized it wasn’t a bad day for me….because it wasn’t about me. It was breaking my heart that all of my strategies had failed with Donna, but thinking this way made it about me–not about Donna.

Donna had a bad day.

So is it hard to work with people who have dementia? I don’t think it’s harder than working with other people. In fact, I could never work with preschoolers or juvenile delinquents. I’d lose my mind. And I had a very brief career in retail when I was in high school. That’s when I realized how horrible people can be. And don’t even get me started on when I worked at the Chinese restaurant. I lasted three weeks.

Sometimes working with people who have dementia is challenging or frustrating–but I think working with people in general can be challenging or frustrating.

Any frustration I feel working with people who have dementia does not compare to the frustration of having dementia. Sometimes I have anxiety when I work with people who have dementia…because I worry I’m not handling a situation right or that I’m making things worse. But that anxiety is nothing compared to the anxiety some of my friends with dementia feel. So is working with people who have dementia that hard? Nah. Not really.

And am I a saint? Not even close. And I don’t like it when people imply that I must be some sort of angel for working with people who dementia because that suggests that it must be such an unpleasant ordeal that only an angel would do it. That’s just not the case.

Some of the most amazing people I know happen to have dementia. Being able to enter their world has been one of the greatest gifts of my life.

But When Are You Supposed to Grieve in Dementialand?

alzheimer's, caregiving, death, dementia, dying, families, , , , , ,

I gave a presentation for dementia family caregivers at a memory care community last fall. A middle-aged woman in the front row did not seem impressed with me at all. She almost scowled at me when we did make eye contact, but for most of my presentation she stared at the wall above my head. I wondered if I had said something to offend her. After I was done talking, she came up to me.

She blurted out, “My husband has early onset Alzheimer’s. So when am I supposed to grieve?”

I asked her what she meant. She said she grieved when he was diagnosed. She grieved when he had to move to the memory care community. She grieved again when he no longer knew who she was.

She seemed so angry. I wasn’t sure if she was angry at Alzheimer’s, grief, or me. Maybe all three of us.

“When he dies, am I supposed to grieve again?” she asked me. She seemed almost annoyed at the idea of having to grieve again after all the grieving she had already done.

This question likely stemmed from concept I mentioned during my presentation. I had talked briefly about “ambiguous loss,” which means that there is some uncertainty about whether someone is gone. Examples would be soldiers who are missing in action and people who are in comas. More recently, we’ve applied this term to people with dementia.

When do you grieve when you’re not sure if people are dead or alive? Do you grieve if they’re right there with you but they linger somewhere between this world and another? Those are the types of questions families undergoing ambiguous loss encounter.

When someone dies in a car accident, grief comes all at once. When someone dies of Alzheimer’s, the loss is much different. I’m not making the case that it’s easier or harder, better or worse. But it’s a different journey. We may feel like we’ve lost our loved one little by little over years. In some ways, we might feel like there is little left to lose when death comes. And yet, even if there is relief, there is still a loss.

I’m not an expert on grief, but I will tell you this… I hate Elisabeth Kubler-Ross’s stages of grief. You know the model. There’s denial, anger, bargaining, depression, and acceptance. I used to think these stages didn’t work for dementia because of the long goodbyes and multiple gradual losses involved in diseases that cause dementia. But it’s only recently that I’ve realized that these stages don’t work for grief in general.

In defense of Kubler-Ross, she eventually came to state that all stages were not experienced by everyone, that the stages did not always occur in order, and that some people experienced emotions outside of the five that she listed. Most thanatologists (those are people who study death–fun, right?) acknowledge there is no real research or evidence to support Kubler-Ross’s stages.

Despite these limitations, people generally really like the theory. Why? Because it’s comforting to think we progress through these stages and come out at the other end (acceptance). But when we lose someone close to us, it’s not that simple. Grief just isn’t that clean and tidy.

And when we grieve, we often have the expectation that the progress will be linear. That we will “progress” forward at a steady rate toward some end goal. But in reality, there is no end goal. There’s no point where we won’t hurt. The best case scenario is that we get to a point where life is enjoyable despite the pain.

We often are also told that our grief will make us better, stronger people. I think that’s a bunch of crap. A college student of mine lost her sister and received a sympathy card that suggested she would emerge on the other edge of her grief as a wiser and more loving individual. She said she didn’t want to be wiser and more loving; she just wanted her sister back.

I once talked to a woman who had just lost her husband to dementia. She was relatively young (probably in her 50’s). She told me she was scared she could never enjoy life again, but her bigger fear was that she could enjoy life again. And if she could enjoy life again, what would that mean about her? It terrified her that a week or so after her husband’s death she went out with some friends for margaritas and actually had a pretty good time.

“But my husband hadn’t known me for a year,” she said, as if she needed to defend herself. She certainly didn’t need to defend herself–not to me, anyway. “It’s like I didn’t know what stage to be in…so I went out for margaritas. In my mind, I shouldn’t have gone out for margaritas until he was gone at least a month.”

And then there was the woman who had lost her husband to Alzheimer’s after taking care of him for 15 years. She said when she passed she felt a lot of things, but the overwhelming feeling was uselessness. Who was she if she was no longer his caregiver? Was there even a reason to get up in the morning? Although she was continually frustrated by her husband’s dependence on her (and resentful of her caregiving responsibilities), she cried after he passed because no one needed her. Kubler-Ross never mentioned uselessness.

The problem with the Kuber-Ross stage theory is that it sets up some expectations and predictions for grief. And when we don’t follow the path we expect, we think we’re doing something wrong. This is even more evident when we experience “long goodbyes” like those that happen in Alzheimer’s.

When that woman asked me if she was supposed to grieve again when her husband died, I didn’t have a good answer. I told her however she felt at his death would be okay, and she wouldn’t really know until she got there. I drove two hours home that night (in a blizzard, nonetheless) thinking about what would have been a better response.

I wish I had said that there is no “supposed to” when it comes to grief.

Tequila in Dementialand

alzheimer's, death, dementia, dying, pwd, , ,

A woman had recently been admitted to hospice and her family wanted to go out of town to attend a wedding. The volunteer coordinator asked if I might be able to stay with her for an evening.

Bev (not her real name) was a divorcee in her 70’s who had had vascular dementia. She’d experienced several strokes and had been told she was in heart failure. I know she had a constellation of other health issues as well. As a former director of nursing at a nursing home, she knew where this was headed.

When I first came in, Bev offered me a drink. I made a rule for myself when I started volunteering for hospice to say yes when I was offered food or drink because people often feel the need to give me something and–to be honest–I really like eating and drinking. But when I asked Bev what she had, she threw me for a loop.

“There’s beer and wine in the fridge,” she said. “Do you like tequila? What do you like? There’s hard stuff, too.”

And she wasn’t kidding. Bev had the most well-stocked home bar I’d ever seen. Several kinds of tequila, rum, multiple flavors of vodka, whiskey, bourbon, you name it…. I’ve been to many bars that did not have that selection of alcohol.

“Do you have any soda?” I called from the kitchen.

“For a rum and Coke?” she asked. I laughed out loud, but it wasn’t a joke. I grabbed a Coke. Just a Coke.

Bev kept forgetting who I was and why I was at her house (although this didn’t stop her from continually offering me alcoholic beverages throughout the evening). She’d ask me to remind her who I was, but it didn’t seem to bother her in the least that there was someone in her house that she didn’t recognize.

Despite her dementia, Bev was pretty clear on some things. She knew she was in hospice, and she knew she had limited time. She was certain of how she wanted to die.

She told me that she had a large extended family and they spent a lot of time at her house. She told me that she thought it was partially because they loved her and partially because she kept her bar stocked. At least four nights a week she had a crowd at her house. They drank, played cards, watched movies… And she had already told her family that this was not going to change now that she was in hospice.

“The party goes on,” she told me. She didn’t want a bunch of solemn goodbyes.

Then she asked me if I’d pour her a glass of tequila. I didn’t know what to say. This was the first and last time a hospice patient had ever asked me to play bartender. I had a cell phone number for Bev’s daughter, so I decided to give her a call. I asked if her mother was allowed to have a glass to tequila.

The daughter said that Bev’s doctor had told them it was okay for Bev to have one drink each night. I felt a little bit uncomfortable pouring a drink for my hospice patient, so I brought her the bottle and a glass. With shaky hands, she poured it herself.

As we were sitting together and Bev was having her tequila, there was a knock on the door. It was two guys delivering a hospital bed. Bev’s daughter had indicated that they might be stopping by.

“Where does the bed go?” one of the guys asked.

“Right here,” said Bev, motioning to her dining room. The two guys and I gave her a funny look.

I decided I had better call Bev’s daughter. I explained to her that Bev was intent on having the hospital bed in the dining room. Bev’s daughter wanted to know why, so I asked Bev. She took a long drink of her tequila before answering.

She explained that she wanted to be in the midst of everyone. She didn’t want to be isolated upstairs in her bedroom as her condition progressed. And, she told us, she needed to make sure the bar was stocked. This was something that Bev had given some thought to. Her daughter hesitantly agreed, and the two guys brought the bed in.

They set up the bed and left. Bev turned to me and asked (again) who I was and why I was at her house. After I told her, she told me I should get myself a glass of tequila. My high school and college peers had not pressured me to drink as much as Bev was pressuring me to drink.

Although she was having difficulty remembering who I was, she was open to sharing details of her life with me. She told me that her husband had left her a few years ago. I had a feeling it was a few decades ago, but that didn’t matter. She mentioned that he “couldn’t handle the party of my life.” She told me that her husband thought she was an alcoholic.

“Maybe I am an alcoholic,” she said, leaning in. “But I’ve had a pretty good life.”

Her daughter got back about 10 pm. At this point, Bev was fighting to stay awake on the couch. As I left, she offered me a drink “for the road.” I was putting on my coat in the foyer when I heard her ask her daughter about me.

“Now, who was that? She seemed nice but I guess she doesn’t drink. I offered her the special tequila,” she said.

About a month later, the volunteer coordinator called to let me know that Bev had passed away. I didn’t ask for any details. I wanted to think she passed away in that hospital bed in the dining room with the party continuing around her.

I can’t drink straight tequila, but that night I had a margarita.

Bev was wrong about me. I do drink. I only wish I could’ve used some of her good tequila in that margarita.

Home in Dementialand

alzheimer's, dementia, ,

I had just visited an innovative memory care community for the first time. I was impressed with what it had to offer residents in terms of exposure to nature, community connections, and activities. The staff had to complete continuing education in the area of dementia care. The building was well-designed, bright, and clean. And, maybe most importantly (in book, anyway), the food was prepared by a professional chef who catered to each resident’s personal needs. I saw some pretty great-looking paninis and calzones. I was impressed, and I am not easily impressed when it comes to memory care communities to say the least.

On the way out, I noticed a resident sitting on a bench. She had tears in her eyes. I gave her an uncertain smile. She made a weak attempt to smile back. I decided to stop to chat.

“Hi. How are you?” I asked. She paused.

“I wanna go home,” she responded.

Of all the statements that I commonly hear from people with dementia, this is one of the hardest for me to negotiate. I haven’t come up with exactly the right thing to say, but that day my response was really off base.

“This is a great place,” I said. “I saw the lunch you had, and it looked fantastic. And all the people here are so nice.”

She looked at me and smiled. Long pause. Then she asked, “If it’s so great, do you want to live here?”

Well-played. She had me there. As impressed as I was with this particular memory care community, I did not want to live there. I wanted to go home. In fact, I had considered not stopping to talk to her just because I was in such a hurry to get home.

I am especially sensitive to people with dementia who talk about going home because I like home so much myself. I know everyone has a special place in their heart for home, but I’m really tied to home. As an adolescent, I went to basketball camps where I counted down the days and hours until I could go home. As an adult, I’m not much of a traveler. Maybe I’m boring, but I just like familiar things. I was all about the staycation before the staycation was a thing.

My friend Kristi is an international recruiter for our university and has been to six continents. She is often out of the country for three weeks at a time, and most of those trips are solo. Not only does she enjoy travel but she’s good at it. She gets what to do in unfamiliar environments. She’s been videotaped by weird cab drivers. She’s even had odd but adorable monkeys try to steal her stuff. She handles all of it like a pro. A part of me wants to be more like her because her life seems so much more adventurous and brag-worthy than mine, but I’m not an adventurous world traveler. I’m a homebody.

When someone with dementia wants to go home, it breaks my heart. I think of times I was at basketball camp and had a little notebook where I computed the hours until I’d get to sleep in my own bed. But that’s not even a good analogy…because I did get to go home from basketball camp. People with dementia might not be headed home ever. They may feel like I would feel on one of Kristi’s three week recruiting trips to Asia–except that trip (which they never chose in the first place) would be never-ending.

Talking about home with people who have dementia is tough. Sometimes they may want to go home, even when we already think they are home. I was working with a hospice patient in Kansas City who had vascular dementia. She kept crying out that she wanted to go home. We were sitting in her bedroom in a home she had lived in for many years. My assumption was that her reference to wanting to go home meant that she was ready to die and be with her husband who had passed years earlier. I took her hand and told her she’d be with her husband soon.

“My husband? He’s been dead for years. What are you talking about? I just want to go HOME!” she exclaimed. Apparently I had made an assumption I shouldn’t have.

“This is your home,” I told her. She looked around the master bedroom of the house she had lived in for decades. The house had obviously not been updated since the 1970s. Picture flowery wallpaper and green shag carpet.

“No, sweetheart. This is your house. I would never have green carpet like this,” she told me. I agreed with her that the green carpet was awful and said I was saving up to change it to something more neutral. The conversation moved on to another topic. I still really wasn’t sure exactly what home she was referring to.

I know a woman whose mother, Elsie, had Alzheimer’s and had recently moved to a nursing home. Elsie kept begging her daughter to take her to see her house one last time. The only issue was that her house had recently sold.

Elsie’s daughter wanted to be able to grant her mother’s wish, so she contacted the couple who had bought the house. They were exceptionally nice and encouraged Elsie and her daughter to come by. They were amazingly hospitable. They made a pot of coffee and sat with Elsie and her daughter on the sun porch.

“Thanks so much for inviting us over,” Elsie said to the couple. “You have a lovely home. Have you lived here long?”

Elsie had no recollection of living in the house. On the way home, her daughter drove her by the two homes she had lived in previous to this house. She didn’t recognize either of these homes either. Elsie wanted to go home, but she had no idea what home was.

Here is what I have learned about people who live in Dementialand and want to go home…I may struggle to understand what home they are talking about. It may be heaven. It may be their most recent home. It may be their childhood home.

All I know for sure is that someone who lives in Dementialand and wants to go home doesn’t want to be in Dementialand. They want things to go back to the way they were. And I can tout the advantages of their current environment all I want, but it’s not helpful. They don’t want to be there, and I can’t blame them.

In retrospect, I should have sat with that woman on the bench and said, “I know this has to be so hard for you, and I’m sorry you can’t go home. Do you want to share a cup of coffee in the dining room?”

Sometimes I try to talk people out of feeling sad when the right thing to do is just to be with them while they feel sad. Maybe that’s the best I can do. I can’t always take people home, but I understand why they want to go there.