Tag Archives: caregiving

What You Do For Friends in Dementialand (aka What I Learned From My 5th Grade Teacher Mr. V)

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Flashback. I am in the 5th grade at Mulberry Elementary School. There is a girl in my class who I will call Mindy. Mindy has special needs. She’s very sweet but doesn’t quite fit in as hard as she tries. She’s obsessed with Iowa Hawkeye football and never misses a game on TV. One weekend, she gets to go to a game. It’s a really big deal for her.

The Monday after the game, my teacher (Mr. V as we call him) does something that I haven’t forgotten. He asks Mindy to run an errand to the school office. While she is gone, he tells us that when Mindy returns he will ask her to tell us all about the Hawkeye game.

“I know that many of you have been to lots of Hawkeye games, so it may not seem like a big deal to you, but this is a BIG deal to her,” he tells us while Mindy is out of the room. “So when she talks about it, you will be excited. It’s just what you do for a friend.”

He specifically says you will be excited. He doesn’t say you will try to be excited. He doesn’t say you will pretend to be excited. He says you will be excited. Instead of questioning whether or not a person could actually be excited just because they are told to do so, I tell myself I must be excited. I’m an obedient child and I put a lot of energy into my efforts to impress my teacher. (Yep. I was that kid.)

That was more than 25 years ago. And the lesson stuck.

I went to New York City with my friend Holly a few years ago. Holly was an art history major in college and was excited to visit the Metropolitan Museum of Art on our trip. I hate to admit this, but I appreciate art about as much as I enjoy eating cat food. My previous visits to art museums included me stomping around and pouting like a small child who had their candy stash raided…and that was when I was in my late 20’s.

But this was going to be different. I was going to be excited to go to the museum….because Holly was excited. And it’s just what you do for a friend.

Here’s the funny thing. At first, I was faking it. I was pretending to be interested. I was trying to not spoil Holly’s fun by acting like someone was sticking needles in my eyes. At some point, my fake excitement morphed into real excitement. As we left the museum, Holly bought me a large soft pretzel from a cart on the street and I had to admit it had been a pretty good afternoon.

And I wasn’t just saying that so she didn’t feel bad for subjecting me to the museum. I realized my interest in art had gone from a 2 out of 10 to maybe a 5 or 6 out of 10. (Of course, my favorite piece of art in our home is STILL the print of four dogs playing pool with a cat dartboard behind them. It’s not as tacky as it sounds, really.)

We typically think that we act more enthusiastically about something if we are more enthusiastic about it. However, I also think we become more enthusiastic about something if we act more enthusiastically. Our actions may follow our feelings, but our feelings also follow our actions.

Every month, I visit a memory care community where a woman with dementia greets me. She’s always sitting in the lobby with a Christmas fleece blanket on her lap. Every time I walk in (at least for the last six months), she exclaims, “Did you hear I have a new grandbaby?”

I don’t know this for sure, but I’d guess she says that to every single person who walks through those doors during the day. I would assume she did have a new grandbaby at some point in her past. Maybe that grandbaby is my age now. I have no idea. And it doesn’t matter.

She’s excited. That excitement is rooted in her reality. Even though she may not have a new grandbaby, I get excited to talk to her. My excitement is genuine, whether or not her grandbaby is.

A woman recently told me that her mother, who has dementia, often talks about how she won the Powerball. Of course, her mother didn’t really win the Powerball. However, the woman told me that her mother is so jazzed about winning that it makes everyone around her happy. It seems irrelevant that 2.3 million dollars isn’t coming her way. Her enthusiasm is contagious.

As the woman was leaving her mom’s nursing home room one day, a staff member said to her, “It always makes my day when your mom wins the Powerball! I hope she wins again tomorrow!”

I spend a lot of time being excited about stuff that is rooted in the reality of people who have dementia rather than rooted in my own reality. But why is their reality any less worthy of being celebrated than my reality?

A couple weeks ago, a women with dementia told me that her cat had a litter of 102 kittens. I know the woman has not been out of the nursing home for a year, and I know cats don’t have litters of kittens that large. Still, I found myself getting genuinely excited as we chatted about the kittens. I asked her to tell me more about the kittens. She said most of the them were green and they were all healthy.

“Green? Are you kidding me? They sound adorable!” I said.

“Well, it’s amazing what they do these days,” she told me, shaking her head incredulously. “People can just do it all. You never can tell what color it’s all gonna turn out.”

As I left the nursing home that day, I realized hearing about this exceedingly large, amazingly healthy, and colorful litter of kittens had made my afternoon.

When we care about someone, we get excited when they get excited. It doesn’t matter if what they are excited about isn’t really in our wheelhouse. It doesn’t matter if it’s rooted in our reality. It doesn’t even matter if it doesn’t make sense.

It’s just what you do for a friend.

Before and After in Dementialand (Or Why I Watch TLC and HGTV)

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I was talking to some friends a few weeks back, and the TV show My 600-Pound Life on TLC came up in conversation. It’s a reality show about super-obese individuals who get weight loss surgery and attempt to change their lives for the better.

For some reason, I was hesitant to admit to my friends that I watch the show. I wanted to say I had never heard of it. I wanted to say I had no interest in watching a reality show like that. Yet, the truth is that I have a season pass on my DVR. I started thinking about what it was about this particular show that I enjoy, and I finally realized why it appeals me. I love a good before-and-after.

I used to watch What Not to Wear. I DVR’ed that one as well. I would watch the beginning but then fast forward to the end. I didn’t care about all the shopping and hair talk in the middle. The make-up tips didn’t interest me. I only cared about the before and the after.

I’m really not that into homes, design, or decorating, but I watch a bunch of shows on HGTV. Why? Because I enjoy the transformation. I love the idea of taking something that is in shambles and making it something wonderful. I also have somewhat of a crush on the Property Brother that does the construction. (The one that does the real estate number-crunching stuff just isn’t my type.)

I really get into those house-flipping shows. There’s Flip or Flop, Rehab Addict, Fixer Upper… If you know me at all, you know I have no interest in flipping a house. If I ever talk about flipping a house, please do an intervention. I like the idea of flipping a house, although it’s not something I have the skills to pursue. I just like the notion of transforming something into something much better. It’s about the before-and-after. The before is dull and drab. The after is bright and shiny.

I also watch Intervention on A&E for the before-and-after effect. Someone might be a drug addict before but maybe–just maybe–they can be a productive member of society after. There a certain level of hope in that.

In grad school, I lived with my friend, Lisa. We would watch Intervention every Sunday at 9 pm. Exactly at 9:40 (as the family was just gathering for the intervention), Lisa would say it was time for her to go to bed. It still bothers me that she didn’t get to see the after of all those drug addicts. Why watch if you don’t get a chance to see the after? Couldn’t she stay up past her bedtime just one night a week? (As a side note: Lisa was a pretty great roommate. My only complaints about her are that she wouldn’t watch the end of Intervention with me and she had the willpower to eat only one cookie per day out of a huge bag in the freezer.)

Families impacted by dementia are often caught up in the before-and-after. There are the years before dementia. Then there’s the after. Everyone with dementia is different, and dementia affects everyone in a different way. But there’s no doubt that the after is not the same as the before. (A person with Alzheimer’s once said to me, “I’m still me but I’m a different me.”)

When I meet someone with dementia that has progressed past the earlier stages, I notice that their family often needs to tell me about the before. Maybe she used to be a successful real estate agent who could sell any house in a week. Maybe he was a teacher who touched a thousand lives. Maybe he was a cop or a firefighter who selflessly served his community. Maybe she made the absolute best apple pies on the face of the earth.

And I always listen when they tell me about the before. There is value in knowing about the before. It helps us to connect with an individual with dementia when we know where they’ve been, but I feel like the family is sometimes telling us this for a different reason. They are telling us about the before because the after isn’t enough. They want us to understand that this person is more than what we see in front of us.

I once met a woman with Alzheimer’s who had been a fantastic golfer. She and her husband traveled around the country playing in golf tournaments. Her family told me that she had been incredibly competitive…to the point where she would trash talk other female golfers. Her kids told me that she didn’t make a lot of friends on the golf course, but she won a lot of huge trophies which now decorated her room at the memory care community as reminder of her before. She once told an employee that she won all the trophies for having the largest cow at the state fair. Obviously, they didn’t hold the same meaning to her that they did to her family. They were a before thing. She was in the after.

As her Alzheimer’s progressed, she could no longer go out and play nine holes of golf. Her kids started taking her to the driving range until she was unable to do that. After she moved into memory care, a creative staff member went to Walmart and bought a few items so they could set up a mini-golf course in the hallway. The woman lit up like the staff had not seen before. The ball never went in the hole, but she would putt up and down the hallway for hours.

The staff expected her family to be excited when they arrived and saw how much fun she was having. They were not excited. In fact, they were angry and saddened. They thought it was demeaning that a woman who had once been a competitive golfer was now aimlessly pushing a wiffle ball up and down the hallway with a plastic golf club. They were caught up in comparing the before to the after.

I realized recently that my love of the before-and-after does not extend to working with individuals with dementia. It’s not that I don’t care about the before. It’s fun to hear about a person’s past, and the before holds some keys to what might work when you try to improve the qualify of life for someone with dementia. Most importantly, no one wants their life to be forgotten. We want to know that people will remember what we did and how we did it. We want to know that what we’ve done has been meaningful and worthy of remembering–especially if don’t remember it ourselves.

Although we should remember the before, we also need to let go of it. If we don’t let go of the before, we can’t appreciate the after. This is easier for a professional caregiver than a family caregiver. Professional caregivers don’t have a before in their mind when they work with someone who has dementia. Family caregivers often can’t get the before out of their mind.

I have recently realized that I must not be the only person who enjoys TV shows based on the before-and-after concept. There’s Restaurant: Impossible, Biggest Loser, Extreme Weight Loss, Flea Market Flip….You can probably name many more if you think about.
But there is no before-and-after reality TV show about Dementialand. I’m not sure how many people would tune in. When the after isn’t always bright and shiny, sometimes the show loses its appeal.

Why Dementialand Needs an Orientation

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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

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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.

Why There Are No Superheroes in Dementialand

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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.

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

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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.

But When Are You Supposed to Grieve in Dementialand?

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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.

Mistaken Identities in Dementialand

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

I spoke at the Illinois and Iowa Quad City Family Conference on Saturday. We had a great turnout, and even had some press coverage:

http://qctimes.com/news/local/caregiver-conference-attracts-its-biggest-crowd-ever/article_ee4294a2-6fb4-5e3e-ba81-64b7666b8288.html

(Please note that I hate my press photo and have no idea why it appears that my hair is longer on one side than the other.)

After I spoke, a small line of people formed by the stage to talk to me. I jumped off the stage because I didn’t want to “talk down” to people. This jump turned out to be a poor decision. I had on heels and should’ve used the steps. I practically took down a lovely woman in her 50s with me when I landed. Fortunately, she seemed willing to break my fall. After I was pretty sure I would not need medical attention, she told me a story.

Her mom has Alzheimer’s. Her father had been an abusive alcoholic and left her mother decades before, and her mom had remarried. On most days, her mom didn’t remember that her first husband had walked out, and she certainly didn’t remember getting remarried. She called her second husband by her first husband’s name. Ugh.

A side note about being mistaken for someone else…If we like that person, we generally tolerate it much better. For instance, I went to high school with a girl named Kelly Oliver. I didn’t think we looked all that much alike, but I got called Kelly once in a while. I will add that Kelly was cute, athletic, and the sweetest person you’ll ever meet. I corrected people when they called me by her name, but I also didn’t mind being mistaken for her. I was flattered.

This guy was in a different boat. Not only was his wife unable to correctly identify him, she was mistaking him for someone who was a real jerk. I’m sure he wasn’t a fan of his wife’s first husband, and now (in her reality) that’s who he was. She would even make occasional comments about how needed to stop drinking, go back to Alcoholics Anonymous, and stop cheating on her.

I asked the woman how her mom’s current husband responded when he was mistaken for her first husband. She told me that he had stopped correcting her. He had even apologized for “his” past drinking problems and “his” affairs. Then he promised that this part of life was behind him and he would always be there for her now. It sounded like he made his promise quite a bit, and it seemed to comfort his wife. In fact, she would usually smile and say something about a “new beginning” for them. For the time being, his strategy seemed to be working. I was impressed. Really impressed.

I’m always telling families to stop arguing about who you are. Just roll with it. However, it’s a lot easier to do this when you’re mistaken for someone who you like and respect. When you’re not flattered by who grandma thinks you are, you tend to get a little bit more argumentative.

I once was visiting a memory care community when I heard a young woman tell her grandma in an annoyed tone, “Grandma, I’m Hannah. Liz is my sister. You can tell us apart because Liz is A LOT heavier than I am. And her nose is bigger.”

I think I might have laughed out loud. If grandma can’t tell her granddaughters apart, she is probably not going to remember the next time she sees them that Liz is the heavier of the two and needs a nose job. And, on the off-chance she does remember, she may tell Liz that she recognized her because she’s fat and has a big nose. Not exactly a win-win situation.

The take-home message here is that we can have a connection with someone even if they don’t know who we are or thinks we are someone else. Often times, we destroy that opportunity for connection when we spend time arguing about who we are.

I know it’s hard. And you get to grieve, but you don’t get to do it in front of them. If mom thinks you’re her sister instead of her daughter, continue on and have a positive visit. Talk about the weather. Smile and laugh. Then, after you leave, cry in the car. Or call a friend to vent.

It’s brutal to accept that someone you love no longer recognizes you, but accepting that may be the key to enjoying time with them. Sometimes we have to let go of what was in order to enjoy what is.

“Role Reversal” in Dementialand

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

Although I used the term “role reversal” in the title, I’ll be really clear in telling you I don’t like it. I hear people say things about how they’ve become a mother to their own mother, or something to that effect. And I get where they are coming from, but caregiving for an older adult is different from parenting.

First of all, most of us get about nine months to prepare for parenting. We have adequate time to prepare a room. Oh, and people throw us a shower. You even get to go to SuperTarget with a scanner and scan all the items that will be useful to you in your role as a parent. Then all your friends get together and wish you well on your parenting journey.

You might even get to play some games involving wrapping toilet paper around your stomach or melting candy bars in diapers to see if you figure out what candy bars they were. Oh, and there will be cake and punch. Maybe even those melt-in-your-mouth mints.

I’ve never seen anything like this for caregivers. You typically don’t know that in about nine months your mom is going to need a lot of help and you’re going to have to drop everything. No one gives you a due date for when you are going to start your caregiving responsibilities. If there’s a crisis and your dad is moving in, you don’t get time to paint the room baby blue and go shopping for new furniture.

Can you imaging the gifts you might register for before your caregiving shower? I was talking to a friend whose mom has Alzheimer’s and recently moved in with her. She said she’d register for wine. Lots of lots of wine.

Parenting is hard work. Don’t get me wrong here. I understand that parents, like caregivers, lack sleep. I understand that parents, like caregivers, are stressed and short on time. Parenting and caregiving both involve ridiculous amounts of multi-tasking. Both come with extreme highs and extreme lows, but I’d argue that we tend to be more supportive of parents than we are of those who caregive for older adults.

Furthermore, what I find is that “family-friendly” workplaces are more friendly to workers with small children than workers who have to leave in a rush because their mother with dementia is wandering in the road. Caregivers who balance work and caring for a family member may be cut much less slack than parents in the workplace. And often workplace policies are written with employees who have children in mind…without regard for employees who care for older adults. Apparently, that’s not family?

When I browse Facebook posts, I see stuff like from parents about their kids’ accomplishments, from potty training to spelling bees to high school sports achievements. Recently I saw a post from a mom about her son, who had just used the potty for the first time in exchange for a few M&Ms. It was complete with a photo. I’ll leave it at that. Can you imagine if those caring for an older adult made posts like this on Facebook? I’m not sure how many likes they might get.

Lots of my Facebook friends post about funny things their kids say. I see plenty of pictures of little girls who have gotten into mommy’s makeup and smeared lipstick all over their faces. A caregiver I know recently busted her mom heating up cans of Diet Coke in the microwave. Should she have taken a picture and posted it on Facebook?

I talked to a family caregiver who was caring for her aunt. Her aunt would wake up during the night and need to use the bathroom. Not wanting to disturb anyone, she would quietly tip-toe down the hallway. However, she was unsteady on her feet and would (on a good night) knock a bunch of pictures off a table trying to stabilize herself or (on a bad night) take a fall.

Her niece gave her a bell and insisted she ring the bell so someone could come help her to the bathroom. She would never ring the bell–until one night she did.

Her niece was pretty excited that she would now ring the bell, but when she tried to tell her friends and co-workers about this “breakthrough,” they didn’t celebrate with her. They just gave her a look of pity, and that wasn’t really what she was going for. Apparently, this isn’t the type of accomplishment that society celebrates like a kid winning a spelling bee.

Caregivers don’t get a peer group like parents. If you’re a parent, you have the parents of the children on your kids’ soccer team. Or the parents of the kids who are in the play with your daughter. You have a built-in network of people who might be sharing some of the same joys and challenges that you are. It’s harder to find that built-in network if you are taking care of family member who has cancer, dementia, or another serious illness. You have to make an effort to find those people who get it.

After Thanksgiving, holiday cards and letters begin rolling into our house. My husband and I (who are in our 30’s and don’t have kids) are swamped with cards from proud parents. And it’s a good thing. People should be proud of their kids.

But where does caregiving fit into your family Christmas card? How do you fit in that paragraph about how your mom with dementia moved in because she kept overdosing on her meds? Should you add something about how your grandma has no idea who you are but you feel like your connection with her brings you both a lot of joy? There seems to be no place in the family Christmas card for the negative or positive aspects of caregiving.

When you’ve got a new baby, you probably have no problem finding a babysitter. Let’s face it–people think babies are cute. Most people, especially women, like to hold them, try to get them to smile, listen to them babble. But asking someone to stay with your loved one who has Alzheimer’s so you and your husband can have a night out? That may not be as easy. We are comfortable with the idea that babies need 24.7 care. We are totally uncomfortable with the idea that some adults may need 24.7 care as well.

A couple of years ago I reported for jury duty. A woman in the jury pool explained to the judge that she was breastfeeding. She wasn’t sure exactly what she should do if she was chosen for a jury and had to stay the entire day. The judge was sympathetic, and he dismissed her.

Recently, someone asked me if I thought she could get out of jury duty because she cared for her 85-year-old mother who wasn’t able to be left home alone. She couldn’t find anyone to stay with her and didn’t think she should bring her to the courthouse. I honestly had no idea if that was an acceptable reason to be excused from jury duty. But I now know that breastfeeding is.

And let’s talk about our goals as parents. We tend to think we are good parents if we send our kids out into the world to be kind, successful, and happy adults. We watch them walk across stages at graduation, get married, get job offers…and we feel a sense of pride, like we’ve done something right.

How do we judge whether or not we’ve done a good job as a caregiver? When do we get to feel that sense of accomplishment? When do we enjoy those milestones where we get to pat ourselves on the back?

I’m not saying caregiving isn’t fulfilling. I’m not saying you don’t have joyous moments where you realize you’ve done something meaningful, valuable, and important by caring for your loved one. But the highs of being a caregiver are different than the highs of being a parent.

Parenting and caregiving are both adventures. I can’t deny that. But they are unique adventures. And the caregivers I know often struggle because they are caregiving within a society that is not set up to support caregiving. Saying we become parents to those adults we provide caregiving to ignores some of the distinct challenges faced by caregivers.

So caring for your mom who is in end-stage Alzheimer’s isn’t like taking care of a newborn baby. I’m gonna guess that no one threw you a shower and brought you gifts.

My Letter to Caregivers in Dementialand

aging, alzheimer's, caregiving, dementia, support group, , , ,

Back in November, I had a really bad day. Our cat, Macy, had been at the vet’s office for about a week when we had to make the decision to put her down. She was in kidney failure and her back legs had stopped working. My husband and I planned to say goodbye in the late afternoon.

Right before that dreaded appointment, I had an obligation of another type. I had been asked to present to a support group sponsored by the Alzheimer’s Association. Normally, I have at least some idea what I am going to talk about when I walk into something like that, but on that day I honestly hadn’t even thought about it. I was a bit of a mess. Correction. I was a trainwreck.

I took a different approach to presenting that day. I sat back in one of the comfortable chairs in the chapel that held the meeting and asked each person to tell me why they were there. Most were spouses of individuals with dementia, and most were caregiving for their loved ones at home. All mentioned something about being exhausted or stressed.

After they introduced themselves, I decided to focus on demonstrating some skills that are suggested for working with those toward the end-stage of dementia. I showed some techniques from Teepa Snow’s Positive Approach to Care (worth Googling if you’re not familiar) and emphasized using the hand-under-hand method for assisting with feeding.

Maybe it was just that I was having a really crappy day and was struggling to focus, but I stopped in the middle of showing them the “correct” way to assist people with dementia in eating.

I said something like this: “I know this seems like it takes a lot longer than just trying to cram a spoon in somebody’s mouth. And it does. And I know you’ve got other stuff to do. You’ve got laundry, dishes, paying bills, mowing the yard. And although this method sounds great in theory, do you really have an extra 15 minutes a day to do it this way? And is your own food gonna get cold while you’re working this method with your loved one?”

I didn’t plan to say this. And I’ve never really stopped a presentation before to interject a statement like this, but somehow it worked. They felt listened to. They felt like I got them.

From that point forward, they tuned in and heard what I had to say. I think it might have been because I made it clear that I had listened to them. It was a good reminder that sometimes when I work with caregivers I do too much talking and far too little listening.

For the record, they bought into the hand-under-hand idea for feeding and wanted to learn more. Most of them told me they were going to try it with their loved one. I actually think they bought into the idea more strongly after I acknowledged the reasons it would be challenging to fit it into their daily routine.

A couple of years ago, I presented to a similar group. A man who was likely in his 80’s came up to me after the meeting.

He said cheerfully, “Dr. Eshbaugh, I am so glad you came here tonight to tell us all the stuff we are doing wrong so we can do it right.”

He wasn’t being sarcastic. He meant it as a compliment. He was genuinely grateful and appreciative. But it broke my heart. And I felt like a jerk. I don’t want to give caregivers the impression that they are doing it wrong.

I came home that night and wrote a letter to caregivers. I wanted to send a copy to that gentleman, but I didn’t have his name or address, so I kept a draft of the letter on my computer. And, to be honest, I really wrote the letter for myself because I realized that somehow I had gotten so focused on teaching dementia caregivers techniques and skills that I had stopped listening.

Here is the letter:

Dear Caregiver:

Your loved one has dementia, and here I am the “expert” trying to tell you how to deal with it. I don’t mean to come off as being critical. I may have some knowledge that you don’t have, but I know I don’t get your unique situation and all the challenges in your life.

I spout lots of information about how to deal with certain “challenging” behaviors, but I know not all of them will work all the time. And that’s not because you’re not doing them right. It’s just because dementia is awful. I hope that out of the 1000 tips I give you, maybe one or two will make your life just a little bit easier.

I’m not going to tell you that there’s some magic cure for dementia. If someone tries to sell you a magic cure in the form of a pill, vitamin, or diet, they are full of crap. Run the other way. I wish I had some magic to sell you, but I don’t.

What I’m selling isn’t as fancy. I want to give you an arsenal of strategies (new ways to think, different techniques to try) that will help you and your loved one to live with more love and laughter on this journey. That’s the best I can do. 

I also want you to know that you are a resource for me. At least once a week, a caregiver will tell me some strategy that they use in negotiating dementia and I am in awe because it’s brilliant. And I want to know those stories because they can help me to help other people.

I’m up to date on all the evidence-methods for working with people who have dementia. I read research article after research article, and I even publish research articles of my own. But unless I can continue to connect with caregivers, I’m really pretty useless.

Sincerely, 

Elaine