Category Archives: alzheimer’s

Home in Dementialand

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

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

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

“I wanna go home,” she responded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pain in Dementialand (aka What Kidney Stones Taught Me)

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In 2010, I had my first bout with kidney stones. If you’ve had kidney stones, I know the last sentence just made you cringe.

The night I ended up in the hospital, I had read in some magazine that a great way to make your hair really shiny was to apply conditioner, tie a towel around your head, and go to sleep. When I woke up at 3 a.m. in the most awful pain of my life, one of the first thoughts that crossed was my mind was that I’d be headed to the ER with huge globs of greasy conditioner in my hair. For the record, I was also wearing pajama pants with lobsters on them. I’m sure they’ve seen worse.

As it turned out, I’d end up in the hospital to have surgery and the conditioner would stay in my hair about four days. After the whole thing was over, I had the best moisturized hair in town. It was silky for weeks.

I had never really experienced pain before. Sure, I’d had a few sports injuries here and there. But nothing like this.

You don’t get a lot of attention when you’re in the hospital for kidney stones. They’re terrible, but they aren’t typically life-threatening. Fortunately, I have a fantastic husband. He did everything he could to get me through. I remember saying I needed more pain meds. He went to talk to the nurse. I remember saying during a morphine-induced meltdown that the only thing that I could eat was Red Vine licorice. He was there with some in 20 minutes. I don’t think I ate it, but he was a total MVP.

But here’s the thing. I was able to communicate. I was able to tell people I was in pain. I could tell people where it hurt. I could tell people what I thought might make me feel better. It was my ability to communicate that led to my diagnosis, my morphine pump (shout out to whoever invented the morphine pump), my surgery, and my return to a pain-free life.

A few months after I got out of the hospital, I remember overhearing a conversation about a woman with Alzheimer’s who lived at nursing home. The nursing home staff was talking about how she had been “difficult” lately. She resisted them when they tried to help her to bathroom. When they tried to assist her with eating, she wouldn’t open her mouth. The staff was clearly annoyed that she was being obstinate.

Except she wasn’t being obstinate. At the end of the conversation (almost as an afterthought), one of the staff members mentioned that the woman had recently had a CT for another reason, and the CT showed that she had several large kidney stones that would eventually pass. And she was being pegged as being difficult?

Can you imagine being in the most horrible pain of your life and not being able to express this to anyone? People with dementia are often unable to tell others that they are in pain. We have to be detectives. Often we think changes in behavior are due to progressing dementia, but they may also be due to other health conditions.

I have a friend who works at a memory care community. She had a resident with dementia who started crying out when she was given a bath. A maybe “crying out” is an understatement. “Screaming bloody murder” is probably a more accurate description. The other staff seemed intent on quieting her with a sedative, but my friend knew there was something wrong. Really wrong.

At one point, she said to the resident, “I know something terrible is happening to you, and I am so sorry I don’t know what it is.”

One night the resident was screaming so loudly that they called her family. Her family took her to the ER. The resident had stage IV pancreatic cancer. She went into hospice and passed away less than a month later.

Would her family had chosen to treat the cancer had they known about it sooner? Probably not, but they could have controlled her pain.

It is common that individuals with end-stage dementia have urinary tract infections due to compromised immune systems. Although most of us might consider a urinary tract infection no big deal, it often spreads in individuals with dementia–who then have life-threatening sepsis. Can someone with advanced dementia tell you that it hurts when they urinate? Maybe not.

The amount of pain experienced by those in end-stage dementia terrifies me. We know that at the end of life people with dementia receive only a fraction of the pain control medications that those without dementia receive. Are they in less pain? Nope.

We have no reason to think that dementia stops individuals from feeling pain. Dementia eventually stops people from communicating pain and understanding its cause, but research shows that pain-related brain activity is the same in people with and without dementia.

A caregiver I met recently took her mother, who was in the late stages of dementia, to the ER because her mother kept groaning, clutching her stomach, and crying. The ER doctor slowly explained the pain scale (the one on the wall where you have to rate your pain from 1-10 with the annoying animated faces). The caregiver told the doctor that her mother had dementia and wouldn’t be able to use the scale. The doctor insisted he try anyway.

“So what is your pain on a scale of 1 to 10?” the doctor asked.

Her mother just looked at the doctor and laughed uncomfortably. She was unable to give any details about her pain. Was it acute? Was it aching? Was it sharp? She couldn’t say. The doctor sent her home and told her daughter she probably had indigestion. They later found out that she had stomach cancer.

The caregiver called the ER doctor to let him know. The doctor’s response was that his misdiagnosis really didn’t hurt anything–because the cancer was terminal anyway. Chemo wasn’t an option for a person in end-stage dementia. His misdiagnosis didn’t hurt anything–except his patient, who was forced to endure weeks of pain because a doctor wouldn’t take her complaint seriously because it didn’t fit within his typically framework for assessing pain.

A lot of aspects of dementia are scary, but I’m not sure any are as frightening to me as undetected pain. And we do a very poor job assessing the pain levels of those who have dementia. After struggling with kidney stones and experiencing true pain for the first time in my life, this haunts me even more.

Assholes in Dementialand

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One of my college students, Hillary, had come with me to a particular adult day center once a month for a couple of years. Today was her last day because she was headed to grad school at Syracuse.

One of the guys, who I will call James, was really attached to Hillary. He would rush in, pushing his walker to make sure he got to sit by her each time we came. He once asked her if her eyelashes were natural or if they were “imposters.” Talk about charming… Although he has vascular dementia, he has never forgotten a detail about Hillary. My male college students could learn a thing or two from James.

I make sure to take a picture of them together that day. I would tape it up in my office. It is right over my computer screen, and every time I look at it I smile. I also gave one to James and one to Hillary.

James has been to visit Syracuse two times in his life. He remembers what county it is in and the main highways that run through the city. I ask him if he thinks it will be a good place for Hillary to live for the new few years. He turns to Hillary and looks her in the eye. Long pause… I feel like he is ready to dispense a life lesson, and I’m right.

“Hillary,” he says. Dramatic pause. “No matter where you go in this world, 10% of people are assholes.”

He goes on to explain that 10% of people in Syracuse are assholes, just like 10% of people in Iowa are assholes, just like 10% of people in Korea are assholes. He tells Hillary to watch out for the assholes, but there won’t be any more there than there are here.

That was about two years ago. I cannot tell you how often I think about what James said. When I am in the checkout line in the grocery store and some jerk elbows his way in front of me, I think about how he’s in the 10%. The other day I was running on the trails and some idiot on a bike refused to move over to give me a little space as he passed. He’s part of that 10%. And I’m sounding sexist here. There are plenty of women in the 10% as well, like the employee at Culver’s who stares me down after I ask for a veggie burger as if I’ve ordered her to hand over her first-born child.

Somehow admitting that 10% of the world is made of assholes makes it easier for me to acknowledge I’ve run into one and then move on with my day. I try to focus on the other 90%.

As for Hillary, she is now almost done with graduate school. She loves hearing updates about James, who still asks about her every month. So much for that generation gap thing.

Writing About Dementialand

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If you asked me in the first grade what I wanted to do when I grew up, I’d say I wanted to be a writer. If you had asked me a year earlier, I’d had said I wanted to be a gas station man because I liked the smell of gasoline. (That’s a flashback to the 80’s when people still pumped your gas for you, and I still love the smell of gasoline.)

My desire to be a writer stuck around longer than my lofty goal of pumping gas for a living. When I was in the first grade, I wrote a series of books about the Kit family. I think there were about six “books” in the series. At the start of the series, the Kits had maybe seven kids. They had at least one more in each of the books. It was a 1980’s fictional version of the Duggars from TLC.

In the first grade, I decided to form a business relationship with a classmate. She said she liked writing, too. I invited her over for a sleepover where we would co-author a book. As the night went on, I realized she wanted to play board games–and she wasn’t really interested in collaborating in the same way I was. I asked my mom to take her home immediately. My mom refused. I didn’t get a thing written that night.

I have spent much of the last 15 years writing theses, dissertations, and research articles. Although it sounds boring, I like it. As a faculty member, I have to publish–and I enjoy thinking of it as a game. You come up with a research question, do a study, write it up, and then set out to find a research journal that will publish your work. If they publish it, you win.

But coming into 2015, I was looking for something, but I didn’t know quite what. Enter my blog.

I have to be honest and let you know that I had a motive. I was going to start a blog, be discovered by a huge publishing giant, and be offered a cash advance to make my blog a book. And then I would finally have achieved the goal I set in the first grade to be a legit writer.

So I started this blog with the goal of making Welcome to Dementialand a book. Oh, and then maybe there’d be a documentary. Someone from NPR would interview me, and I was pretty sure somehow I’d end up on the Ellen Degeneres Show (and that would make my mom cry tears of joy–my mom LOVES Ellen).

But the more I wrote, and the more I thought about what I was writing, I realized that maybe all of these end goals were really not the point. The more I work with people who have dementia, the more I realize that it’s not about where you’re going. It’s about connecting with people in the moment and enjoying the present regardless of where the future might take you.

And this blog has allowed me to connect with people. I’ve connected with people who have dementia. I’ve connected with caregivers. I’ve heard from old neighbors that I haven’t talked to in years. Friends, acquaintances, and strangers. Maybe that’s what this is all about.

It’s hard for me to say this because I’ve always been a really goal-oriented person. The goal was to get a PhD. The goal was to get tenure. The goal was to run a marathon. I reached all those goals. But sometimes maybe it’s about the journey. In the past, I’ve been so focused on the goal that I totally missed the value of the journey. That’s what people with dementia have forced me to realize.

When you don’t remember your past, and you don’t know what the future will bring, you’ve got the present. There’s a lesson in there for all of us. We are not the same people we used to be, and none of us have a certain future. But we can enjoy the moment and connect with each other.

For the record, I wouldn’t turn down a book deal. But I don’t need a book deal to be a legit writer. After all, I already wrote all those books about the Kit family. And maybe my blog isn’t good enough to be a book, and it’s likely that NPR and Ellen will never have any interest in talking to me. I am absolutely okay with that. For now, I’m taking a lesson from my friends with dementia.

I was at a memory care community a while back, and I overheard two women with dementia having a conversation. One asked the other if she had any weekend plans.

The other responded, “It doesn’t matter. Right now I’m sitting in the dining room with you and it’s nice.”

So…to those of you who are with me on this journey, thanks for sitting in the dining room with me. It really is nice.

Dying in Dementialand

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I pulled up at a nursing home in an impoverished part of Kansas City. It was 2006–before GPS was commonplace. I had printed out Mapquest directions to find this place. It didn’t help that it was raining, almost 11 pm, and that the nursing home was tucked behind an authentic hole-in-the-wall Mexican restaurant and one of those Payday Loans joints, but I found it.

I was part of a new volunteer program that a hospice in the area had started. If a nursing home resident was “actively dying” (a hospice term used to describe what is typically the final 24-72 hours of life) and didn’t have anyone to be with them, we were called. I had taken the 11 pm to 3 am shift with a women dying of Alzheimer’s.

Although often people don’t understand that Alzheimer’s can be a cause of death, it is a terminal diagnosis. Many people pass away from other causes before Alzheimer’s kills them, but at some point Alzheimer’s degrades the brain to a point where it can no longer provide support for functions like breathing, swallowing, and fighting infection. That was the point my hospice patient had reached. Her body systems were shutting down due to Alzheimer’s.

Her name was Opal. Actually, that wasn’t her real name. I’d like to say I changed her name to protect her privacy, but the fact is that I don’t remember what her name was. And I feel like a horrible person for not remembering her name. After all, I was with her on her final journey, and that’s pretty significant.

Opal was an African-American woman in her 70’s who didn’t live in a great nursing home. It was dirty, and it smelled awful. If a horror movie were set in a nursing home, it’d be this place.

And just when I thought things couldn’t get more eerie, I saw a large rat. Upon closer inspection, I realize it wasn’t a rat. In fact, it was a small-ish shaved cat. The nursing home liked the idea of having a cat but knew some people might have allergies…. It was perhaps the creepiest-looking cat I’d ever seen. I termed it “Rat-cat.”

I found out that Opal had a daughter living across the country who had visited several weeks ago. Her daughter had been notified that Opal was passing away, but she couldn’t make it back. According to the hospice volunteer coordinator, the daughter had said she saw no point in coming back because Opal wouldn’t know she was there anyway.

Opal hadn’t recognized anyone for several years, and she’d been unable to speak for quite some time. There were some greeting cards taped to the wall behind her bed. I felt guilty about snooping, but I read them anyway. Most were religious cards that appeared to be from cousins, nieces, and nephews. One note mentioned that the sender had included a gift card to Walmart. I’m pretty certain that Opal hadn’t been up for shopping for quite a while. Except for her daughter’s recent trip, Opal hadn’t had any visitors in months.

For tonight, Opal had me. She seemed comfortable but not at all alert. Her eyes were slightly open but she didn’t seem to be able to see anything. Her breathing was labored and they had her on oxygen.

My job was to make sure she seemed peaceful and to alert the staff if I felt she was in pain or distress. More than anything, I was there to make sure she didn’t die alone.

A young nursing assistant stopped in frequently to check on her. My original prejudices about the nursing home were challenged by her cheerful and efficient demeanor. She was amazingly gentle in repositioning Opal and kind in talking to her. The nursing assistant told me to come find her if “things start changing.” I knew what she meant.

I spent most of my time sitting in a chair by Opal’s bed. I didn’t talk a lot. The TV was on when I came into the room, so I left it on and stared at it mindlessly for a few minutes at a time. There were a couple of books of devotionals on Opal’s nightstand, and I thumbed through them without really reading. At one point, I did start reading something from the devotional books aloud, but it didn’t feel right so I stopped.

The nursing assistant mentioned that Rat-cat tended  to frequent the rooms of residents who are dying, and sure enough it stopped by a few times. Mostly it just sat in the doorway and stared at me. I stared back.

I left that night not knowing if Opal even knew I had been with her. I slept a few hours and went to work the next day. I was signed up to go back the next night but had a feeling she would pass away before I got there. However, Opal was still around at 11 pm the next evening.

If you know me, you know I don’t do well on limited sleep. As I headed back to the nursing home, I was exhausted. I stopped to get a soda at a 7-11. Somehow I was distracted by the Slurpee machine and decided to mix the cherry and Coke Slurpee–something I did frequently as a kid but probably hadn’t done in ten years. And it was so good.

I brought it with me into the nursing home and stopped to see the nursing assistant at the desk. When I got to Opal’s room, I realized I had left my Slurpee at the nurses’ station. I had just greeted her by putting a hand on her shoulder and telling her who I was when I thought I’d retrieve my Slurpee, but when I took my hand off her shoulder, she made a noise.

It wasn’t something that indicated she was in pain, but it wasn’t a “good” noise. I put my hand back on my shoulder and she was quiet. I took my hand off her shoulder again, and she made the same noise–and continued to make it–until I put my hand back on her shoulder. She obviously didn’t want me to take my hand off her shoulder. She didn’t want me to leave. And, yet, I really wanted that Slurpee.

I said, “I am just going to the nurses’ station to get my Slurpee and will be right back. I will even run.” Despite her making the same noise, I took off to the nurses’ station in a full sprint. I grabbed my cup and sprinted back. I put my hand back on Opal’s shoulder, and she was quiet again. I sat with my hand on her shoulder while drinking my Slurpee for quite some time.

Rat-cat came and sat in the doorway. I wasn’t quite as creeped out by it the second night. In fact, I had gotten over the initial shock of his appearance and realize he was–in his own way–almost cute.

I wish I could tell you that Opal rallied, or at least that she opened her eyes and shared some departing wisdom with me. I wish I could share with you that I learned a life-changing lesson that would make me an infinitely better person from my time with Opal. I’d love to say her daughter called to thank me for sitting with her mom or maybe that another family member stopped in to say goodbye. None of that is true.

She passed away that night about 45 minutes after I left. Another hospice volunteer was with her. Unfortunately, the hospice failed to let me know, so I went back the following night. Rat-cat was there, but Opal’s bed was empty.

As I sit here nearly ten years later, I would give anything to remember Opal’s real name.

Stuffed Cats and Real Cats in Dementialand

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I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat.

About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other health conditions) and lived at an assisted living. She was reserved when I first started stopping by, and I had trouble connecting with her.

One day, I notice a stuffed cat sitting on her bed. She sees me looking at it and asks if I like cats. I tell her that I do. She smiles.

“Well,” she says. “You’ll love my Tiger. He is quite a cat.”

I’m not sure if she thinks Tiger was a real cat or not, so I walk over to pet him.

“Be careful,” she warns. “Tiger still has his claws.”

Yep. Linda thinks Tiger is a real cat. I shift gears and start interacting with Tiger as if he is a real cat. In other words, I step into her reality. Linda perks up some, and suddenly we have a connection. I figure out that Tiger is the key to engaging her.

Every time I stop by, I ask about Tiger right after I come in. He’s usually on her bed. Sometimes I pick him up and put him on the windowsill so he can watch the birds. A few times we find a nice sun puddle on the floor for him. One day she mentions that Tiger looks chunkier and accuses me of sneaking him tuna. I confess, and she smiles. I even buy Tiger a toy. Yes, I spend $5 on a toy for a stuffed cat. And Linda is beside herself with excitement, and I’ve forgotten that Tiger isn’t a real, living, breathing feline.

I come by one summer day while her son is visiting. When I ask Linda about Tiger, he rolls his eyes.

He tells me, “I’ve told her time and time again that Tiger has been dead for five years. He got hit by a car on the highway.” Linda looks at him, and then at me. I’m really not sure what to say.

“Actually, Tiger’s okay. He’s right here,” I say tentatively. The son takes a long look at me as I pet Tiger. I’m pretty sure he’s wondering if I’m the biggest idiot he’s ever met.

“You are petting a stuffed cat,” he says. “That’s not a live cat. It’s stuffed.” Let’s just say Linda’s son and I are not on the same page here, and I’m not about to let him break his mother’s heart.

“No, Tiger is a real. Alive and well,” I say. This is awkward. The son is not going to relent, and neither am I. I have now decided I am not going to admit to the son that the cat is stuffed. And once I pick a battle, I’m all in. He glares at me.

“Do you really not know this cat is stuffed? We bought him at Walmart,” he responds. “This is a stuffed cat.” At this point I should take this guy out in the hallway and explain why I am set on insisting Tiger is a real cat, but I don’t think of that at the time.

“Well, Linda knows that Tiger is real, so Tiger is real,” I say. At this point, I have Tiger cradled in my arms. I’m squeezing him tighter and tighter as I get more and more frustrated. If Tiger were alive, I might have suffocated him.

The son stares me down. It’s intense. Linda looks at me, and then at her son. He sighs and walks into the other room. I consider it a victory.

Mistaken Identities in Dementialand

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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.

Candor in Dementialand (aka Notes on Whether My Hair is Scroungy like an Alley Cat)

aging, alzheimer's, dementia, , , , , , ,

I sometimes struggle with apathy when making decisions about the big things in life–like my hair. It used to be closer to chin length and now it’s shoulder length.

I’ve asked a few friends if they like it better shorter or longer and no one gives me a straight answer. They say things like, “Oh, it looks good both ways.” They are being nice…I get that. But sometimes I want honesty.

Fortunately, I work with people who have dementia. I was at a Memory Trunks program last week when a gentleman with vascular dementia asked me, “Is your hair longer these days?”

“Yeah,” I responded. “I don’t know if I should be growing it out or keeping it shorter.” He interrupts.

“Cut it. Cut it. Cut it,” he says. “It looks scroungy and there’s no point.” An honest opinion. He looks me right in the eye. For effect, he adds, “SCROUNGY. And pointless.”

I can tell this makes the staff uncomfortable. An employee steps in and says, “You have such pretty hair. It looks great longer or shorter.” But they don’t need to worry. I enjoy the honesty.

I later told my friend Holly that someone with dementia said my hair was scroungy. She told me that I am the least scroungy-looking person she knows. When I told another friend, Jen, she said, “Scroungy? Like an alley cat?” Yeah, maybe.

I’ve been told that I’ve put on weight (truth….). I’ve been asked why I was wearing combat boots (In fact, they were $150 boots I had saved to splurge on). It’s been suggested that I wear lipstick–because men like women who wear lipstick. I’ve been told my voice is annoying.

And I should point out that none of these comments from people with dementia were mean-spirited. They were simply honest observations.

I have to admit that in life there are times that we shouldn’t be completely honest. Sometimes honestly is hurtful. But I think a little honestly is refreshing sometimes. And sometimes I have to credit people with dementia for making sure I don’t take myself too seriously.

A few months back, I gave a presentation on dementia to a small group of professional woman in the morning. I had been in a rush and grabbed piece of toast with peanut butter to eat in the car on the way there. I gave the presentation and thought it went pretty well. Next I went to do some programming for people with dementia at an assisted living. I sat down in a chair and greeted them.

“Good morning,” I said. “My name is Elaine.”

“Elaine,” said a tiny woman sitting several feet to my left in a wheelchair. “You have peanut butter on your breast.”

I looked down, and sure enough there was a huge glob of peanut butter on my shirt. Keep in mind that I had already spoken to a group of 20 women that morning. I am positive that at least ten of those women had to have noticed the giant mass on peanut butter stuck to my shirt. No one mentioned it. I’m assuming they thought it would be awkward and didn’t want to embarrass me, but someone pointed it out within three minutes of my arrival at an assisted living.

They don’t care that I have a PhD. My credentials mean nothing to them, and that’s as it should be. To them, I’m not Dr. Eshbaugh. I’m just a woman with scroungy hair and peanut butter on her shirt. And there’s something about this that I really like.

The day after I was told I have scroungy hair, I made a hair appointment. I didn’t get it all cut off, but I did get it texturized and have some layers cut around my face. I’m hoping I look less like an alley cat.

Issues in Identifying Dementialand (aka Why I Shouldn’t Be Left Home Alone)

aging, alzheimer's, dementia, ,

My husband was at a conference all week, and I had a plan. I was going to paint the kitchen and put up a new light fixture.

I sent a text to my friend CJ who lives in Michigan to ask if he thought I was capable of putting up a light fixture. CJ happens to be an electrician. He told me it shouldn’t be that hard. There will be white wires and black wires. I just have to match them up.

Then he texts, “You got this.” And, a few seconds later, “TURN OFF THE POWER.” What he’s really saying here is that he wants to instill confidence in me but doesn’t have quite enough confidence to trust that I will turn off the power, but I appreciate that he doesn’t want me to die.

I buy a light fixture and some paint. I remove the existing light fixture. I lift the new light fixture over my head. I promptly drop it, and it shatters. Not a great start, but I can buy another light fixture the next day.

The next day I go back to Home Depot and buy a new light fixture. I give it another shot. Then I realize that the whole white and black wire deal doesn’t apply if you have a house that is 80 years old. All I have are two cloth covered wires.

I am not exactly a practical hands-on problem solver, so I text CJ (who is a practical hands-on problem solver) a picture of the situation and then call him. He tells me I am going to have to take a guess on the wires and then switch them if the light doesn’t work. After we hang up, I get a text: “YOU TURNED THE POWER OFF, RIGHT?” I appreciate that he cares so much about my personal safety. I follow his instructions but the light doesn’t work.

I get frustrated and quit. I decide to start painting. I am standing on my oven when I realize the top of our oven vent hood needs a coat of paint. Without thinking (obviously), I use the wall paint. Yeah, I know. You can’t do that. But it gets worse. I haven’t hit rock bottom quite yet.

I find some spray paint that says it can be used on metal, so I spray a coat of that over the top. Yeah, I know you can’t do that either.

I realize that this is a fairly large error in judgement. I text CJ a picture. He texts back, “HOLY MOSES.” Yeah, I know.

Then I go into full meltdown mode. I’m on the verge of tears and decide I need some wine. The kitchen is a mess because of my projects, so all I can find is a mug. I pour some wine into it. Then I sit on the kitchen floor, drinking wine out of a mug, and thinking about my weaknesses as a person.

A few weeks after my “incident,” I am visiting with an acquaintance. She has concerns about her grandpa (who she refers to as Grandpa Freddy) and is wondering if he might have dementia. I ask her why she’s concerned. She tells me that he was working on a simple bathroom project, got flustered, and just gave up. When her grandma came home, she found him sitting on the edge of the tub in tears.

This reminds me of my “incident.” Except Grandpa Freddy didn’t seem to do any actual damage and wasn’t drinking wine out of a mug while crying. And her grandpa’s behavior seemed to be more worrisome to family and friends than my behavior. No one wondered if I had dementia when I had a complete home improvement disaster followed by a meltdown.

You might attribute that to age. People are more likely to suspect you have dementia when you are older. However, there are people who are my age diagnosed with dementia everyday.

There’s another factor. We are different people. If I pull something similar when I’m in my 60’s, it’s probably not dementia. It’s just how I roll. Apparently, this wasn’t how her grandpa typically rolled.

He had done dozens of household projects. He was very competent, and this was a simple project that brought him to tears. Could he have dementia? Maybe, because it’s a change in behavior. We really don’t change that much as we age unless we have health issues.

The take-home message here is that when competent home do-it-yourselfers and rational problem-solvers start acting like I do regularly, they might have dementia. As for me, I’m fine. I just have a tendency to turn into an idiot when I attempt home improvement projects.

That’s why it’s so hard to diagnose Alzheimer’s and related dementias. We are all different to start. A doctor gives someone easy math problems. If they can’t do them, they might have dementia. Well, what if that person wasn’t good at math to start with? A person has flat affect and doesn’t show emotion. This could certainly be related to a dementia, but they may have been that way their entire life.

Using the wrong “there” and “their” may be related to dementia if you’re an English teacher, but I see people on Facebook may that mistake everyday. I’m not worried they have dementia. I know of an older woman who yells inappropriate comments at sporting events. A part of me wonders if she has dementia, but maybe she’s just inappropriate. I didn’t know her forty years ago.

And everyone, no matter how competent they are at something, messes up from time to time. Everyone uses poor judgment once in a while. We are talking about patterns of behavior here, not isolated incidents. And if something seems wrong, it could be something other than dementia (e.g., depression, cancer).

Final note on my “incident”… I got the light to work on the third day. As for the oven vent hood, I had to strip all the paint off with some crap that made my eyes burn and then repaint it with some epoxy stuff. It looks passable. CJ said he knew I had it in me all along. He may not have been telling the truth, but I appreciate it anyway.

“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.