Category Archives: aging

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donna had a bad day.

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.