Here’s to Hoping We Lose Bad Memories If We End Up in Dementialand

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There are certain memories that never fail to make me smile.

In elementary school, my friend Heather and I spent a lot of time producing radio commercials. We had a tape recorder that was state-of-the-art. We wrote a script. There were sound effects. Heather’s little brother, Brian, played a supporting role. I specifically remember making commercials for vacuum cleaners. We said they “sucked” but in a good way. (See what we did there? Looking back, we were pretty clever.)

I don’t think our mothers were all that impressed with that particular commercial. In 1985, second-graders weren’t really supposed to be using the word “sucks.” We were in uncharted territory. You might call us rebels. I’m smiling just thinking about it.

Then there’s our wedding. It’s a good memory for all the reasons people typically say their wedding is a good memory, but what makes me smile the most is when I think about a specific moment when my stepfather, Dennis, was taking some pictures of my husband and me. He didn’t like the shadow that the sun was creating. My dad, who is quite tall, stepped in awkwardly right behind my stepfather with his arms arching over him–practically on top of him–to block the sun. Then there was my mom standing about ten feet away yelling directions at her ex-husband and current husband on how to work together to avoid the shadows in pictures. (As in, “Roy, step to the left and lean over Dennis a little more! Dennis, get down lower! Bend your knees!”) I am laughing as I write about it.

I also have memories that aren’t so positive. I’m not trying to portray myself as a pitiful victim, but I’ve been through some rough times. I’m not unique in this. I know you’ve probably been through rough times, too. Life isn’t all roses and unicorns, after all. I know you likely have a few images that pop up at night when you can’t sleep. You tell them to get lost, but they don’t.

They are memories I’d like to forget, but I can’t. They relate to painful times in my life. Things I saw happen that I would give anything to have not seen…or that I would give anything to have not happened at all. But that’s not an option. Just like those good memories that are imprinted in my mind, those bad memories aren’t going anywhere. I’m stuck with them.

I’d like to say those awful memories make me a stronger and better person. I’d love to tell you that they’ve forced me to grow and helped me to develop valuable new self-insights. Maybe some of that is true in a small way. Yet…really…bad memories just suck. (I can use that word now because I’m no longer in the second grade…unless Heather’s mom or my mom want to chime in here and veto it, which I would completely respect.)

Dementia can take those good memories. Dementia can take those bad memories, too.

I had to laugh uncomfortably recently when someone said to me, “The bad news is that Dad has Alzheimer’s. The good news is that he doesn’t have PTSD anymore.” It sounded like the punch line to a bad dementia joke. (Note: I’ll talk about dementia jokes in an upcoming post. I thought I had heard them all until I heard one the other day that happened to be both derogatory to people with dementia and racist, but I digress.)

If you can’t remember the traumatic event anymore, post-traumatic stress disorder (PTSD) is often relieved. This woman told me that her father had been in Vietnam. He came home and struggled with depression, fatigue, nightmares, flashbacks, and aggressive episodes. This cost him his marriage and strained his relationships with friends and family members. Then along came Alzheimer’s. As he gradually lost his memories of Vietnam, his PTSD subsided.

Certain types of dementia, such as Alzheimer’s, often work by impacting short-term memory at the start of the disease. Then you don’t remember the last year. Gradually, you lose the last 5 years, 10 years, 20 years….And if you don’t remember the last 60, maybe you see yourself as a child. You look in the mirror and don’t recognize that old person looking back at you. With Alzheimer’s and memory loss, we often use the phrase, “Last in, first out.”

Sometimes with Alzheimer’s, and even more so with some other types of dementia, the memory loss isn’t so predictable. The progression doesn’t always make sense. I once met a man with Alzheimer’s who remembered that his son had committed suicide five years earlier. However, he didn’t remember the wife that he had been married to for over thirty years or that he had been a well-respected lawyer. He couldn’t name the last four presidents.

I found it cruel that Alzheimer’s had stolen so many memories but left him with what was likely the most traumatic memory of his life. Dementia should have to take the bad memories if it’s gonna take the good ones. That only seems fair. But when it comes to dementia, what’s fair is irrelevant. Dementia, like life itself, is tremendously unfair.

If I have dementia in my future, I want to forget those life events that I can’t forget now as hard as I try. And I want to remember making commercials about vacuum cleaners that suck and how my dad and my stepfather ended up making the world’s oddest and most awkward pose in order to get the perfect wedding picture.

But dementia doesn’t let you choose.

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.

Pushy Awesome Friends in Dementialand

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A few weeks ago, someone made a not-very-nice comment about my blog. It’s okay. I’m over it (sort of), but I can’t say it didn’t sting. It wasn’t constructive criticism. It was mean-spirited rather than useful. I even lost some sleep, and sleeping is my favorite thing in the world. (If you know me, you know that I don’t exactly excel on little sleep.)

I had been on a roll writing my blog, but this took the wind out of my sails. I didn’t want to write anymore. I told a few of my best friends this, and they all had the same response. They didn’t tell me I should keep writing the blog. They told me I would keep writing the blog.

They didn’t entertain my reasons for wanting to stop or take a break. They didn’t want to have a long discussion about it. They just told me that I would keep writing the blog. I would keep writing because there was no other option. And so I did keep writing.

Sometimes that’s what the best of friends do. They don’t talk to you about your options. They don’t tell you what choice you should make. They just tell you what you will do and then they make sure that happens. I’m generally not a fan of pushy people, but there are times when your best friends step in and make a decision for you. It may not be what you want at the time, but it’s what you need.

I spoke at an Alzheimer’s workshop last week. I noticed two older women in my audience. They were well-dressed, attentive, and poised with pen and paper to take notes. They sat in the second row, and I liked them immediately because they laughed at my jokes. After the presentation, we struck up a conversation at the refreshment table. (As an aside, if you want to talk to me after I do a presentation, don’t go to the stage, head to the food table, especially if they have cinnamon rolls.)

One of the women, Ann, was caring for her husband with Alzheimer’s in her home. Her best friend, Carol, had insisted they come to the workshop.

“I didn’t want to come listen to you at all, honey. But this one here made me,” Ann told me as she motioned toward Carol.

I learned that Carol had read about the workshop in the paper and told Ann about it. Ann was somewhat interested, but finding someone to care for her husband would be difficult, so she told Carol it just wouldn’t work.

That’s when Carol said that they would be attending the workshop. She called her own daughter to come stay with Ann’s husband, and she called to reserve their spots at the workshop. She told Ann what time she would be picking her up. She also mentioned that she would be buying lunch after the workshop. To make a long story short, Carol is awesome. And I told her so.

“I still didn’t want to come,” Ann confided. “But I really didn’t get a say in it.”

Ann had a couple of questions as a follow-up to my presentation. We chatted for 15 to 20 minutes about her husband’s challenges with impulse control and anxiety. Carol pulled a small spiral-bound notebook out of her purse and started taking notes on our conversation. At one point, she asked for my business card in case they “needed me” in the future. I happily handed it over. I really hope they do reach out to me in the future.

I can’t stop thinking about how I wish that every caregiver had a friend like Ann had in Carol. If Ann had asked Carol if she should find someone to stay with Ann’s husband so they could go to the workshop, Ann probably would’ve said no. That’s why Carol didn’t ask. She just did it. She didn’t ask if she should call and reserve seats at the workshop. She just did it. And sometimes that’s what the best friends do. They don’t ask. They just do. Maybe it’s pushy, but maybe pushy isn’t always a bad thing.

As one of my best friends was battling cancer about a year ago, she said something that has stuck with me. She was speaking about her neighbors when she said, “They’re the type of friends who don’t ask if they can bring dinner over. They say they will be bringing dinner.” When she said that, I vowed to try to be that type of person (although I can’t cook…so maybe bringing dinner over isn’t really the absolute best way for me to help people).

Unfortunately, I find that many caregivers don’t have supportive friends like Ann does. Dementia can be isolating and take a toll on friendships. Even close friends may not know what to say or do, so they keep their distance. They think it’s better to say or do nothing than to say or do the wrong thing.

This goes for those who are diagnosed with Alzheimer’s and related dementias as well as caregivers. I once asked a woman in her early 40’s who had been diagnosed with Alzheimer’s what the biggest surprise had been. She said that it was that the friends she thought would never leave her side had left her side. She defended them, saying that she knew they were confused and scared. Even though she tried to not take it personally, it hurt.

My point here is ridiculously simple. We all need friends. Having dementia or being a caregiver for someone with dementia doesn’t change that.

And maybe friends need to stop saying, “Let me know if you need anything,” and instead say, “I thought you needed this, so I already did it.”

Finally…to my friends who told me I would keep writing my blog…thanks. I owe you guys.

Groundhog Day in Dementialand

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You wake up in the morning. You open your closet to find something to wear. You realize immediately that something is wrong. Most of the clothes in your closet are unfamiliar. They look like women’s clothes, but you’ve never seen them before. So you call your daughter, and you are angry. You know she has a smaller house and not a lot of closet space. You’re pretty sure she’s storing her clothes at your house without asking you. You tell her she needs to come over immediately and pick up the clothes. You just don’t have room for her stuff at your house. 

Your daughter denies that she knows anything about the clothes. In fact, she says you bought those clothes yourself. You would know if you bought those clothes, obviously, so an argument erupts. Your daughter drives over and insists you try on the clothes. She wants to prove to you that they fit, that they are your clothes. You think this is ridiculous, so you refuse. She keeps holding up the clothes in front of you to show they are your size, but you slap them away. She leaves in a huff. You don’t understand why she just can’t take her clothes back to her own house. 

What you don’t realize is that this happens every morning. Your daughter knows to expect the call between 7 and 7:30 am. She knows she will get accused of putting clothes in your closet. She’s tempted to not answer the phone, but she always does. She tries her best to be rational and reason with you, but it never seems to work. She thinks that if she can convince you to put on the clothes you will realize that they fit you and that you bought them. However, the plan never seems to work. She’s sick of the accusations. Every morning she storms out and sits at work all day feeling guilty for losing her patience.

She wonders if you should live with her, but she just doesn’t know if she can handle it. She worries that her relationship with her husband would suffer and her kids wouldn’t understand what was going on with grandma. She thinks about an assisted living, but doesn’t know how to approach the subject with you and has no idea about your financial situation. She knows you wouldn’t go willingly. After all, you don’t see why you can’t live alone. The neighbors are stealing from your garage and the utility company didn’t process your last payment even though you sent the check, but everybody has some bad luck now and then. It’s tough because your husband has been gone for quite a while now. You’re not certain where he is, but you’re sure he’ll be back soon, so obviously you can’t sell the house.

You’re doing fine. You’re not sure why your kids keep getting so upset with you. You don’t know why your grandkids don’t stop by like they used to after school. And you can’t figure out why you haven’t been asked to babysit lately. You used to help the ladies at church make food for funeral luncheons, but there was recently a misunderstanding where you were supposed to bring the pies but no one told you. That resulted in an argument, and they haven’t asked you to help since. Maybe they realized they were wrong and are embarrassed.

Your daughter wants to have holidays at her house, although you’ve always hosted them at yours. She says you need a break, although you really enjoyed putting together the menu and cooking for your whole family. You told her to call everyone and tell them you’d do Christmas this year, but she didn’t. You were pretty insulted. You’re a really good cook. Everyone who ate your potato salad last year got sick, but that was because the mayonnaise you bought from Super Walmart was expired when you bought it. 

Tomorrow you will wake up again and look in your closet again. You will realize again that these aren’t your clothes. You will call your daughter. She will take a deep breath and promise herself she will be more patient on this day. She’ll stop by on the way to work, and she’ll leave once again in the midst of a tense argument. Then she will feel guilty for her lack of patience. She will do the same internet search for assisted livings that she does everyday at her desk. 

I met the daughter in this scenario recently. She told me that she feels like she’s in the Bill Murray movie “Groundhog Day.” She said she just can’t do it anymore, but she doesn’t know how not to do it. She feels powerless. It’s the same cycle, the same pattern. It will change, I reassured her. Except it’s not really reassurance because I can’t say it will change for the better.

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.

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

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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

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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.

What My Trip to the Distillery Reminded Me About Dementialand

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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.