Category Archives: alzheimer’s

Conversations In Dementialand

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A while back I had a conversation with someone who has dementia. I’ll call him James. The conversation went like this:

James: You made it back from the city, I see! (He’s very enthusiastic about this, and I have no idea what city he is referring to. However, I am happy he’s so glad to see me.)

Elaine: Yes! I always make it back!

James: Well, if it’s not one thing, it’s another.

Elaine: Ain’t that the truth? Such is life. (We both laugh knowingly and shake our heads.)

James: And you sure did a good job with that dog! (Although I have three dogs, James doesn’t know this, and I have no idea what dog he is referring to. I don’t ask.)

Elaine: Oh, that dog can be such a little brat! (We both laugh.)

James: I see how it is. I don’t know what Mom was thinking.

Elaine: Oh, I sure don’t either, James. (And we laugh some more, as I shake his hand and move on.)

A short conversation that would make no sense to anyone who may have heard it, but a really, really good connection that somehow makes my day. It’s about the connection, not the content.

There is a natural rhythm of conversation, and it usually perseveres in those who have dementia after the content doesn’t add up.

Sometimes those with dementia have a go-to line that they use to try to mask their lack of understanding of the world around them. For my husband’s grandpa, it was “You never can tell.” And sometimes it’d make sense.

We’d ask, “Do you think it’s gonna rain?” He’d say, “You never can tell.” We’d ask, “Are the Hawkeyes gonna win on Saturday?” He’d say, “You never can tell.”

However, as the disease progressed, he’d use his go-to line more and more, and it made sense less and less. We’d ask, “What’d you have for breakfast?” He’d say, “You never can tell.” We’d ask, “How do you feel about all this snow?” He’d say, “You never can tell.”

But, still, the rhythm of conversation was there. He knew from the rhythm of someone’s voice when he was asked a question, and he knew when a response was required. If you were doing something else and listening to us talk in the background, you might not notice his responses didn’t make sense.

For some people with dementia, responses become what could be considered jibberish. A few weeks ago, I asked a woman how she was, and she responded with a very enthusiastic, “Dippity doooooo!” She knew I was asking a question, even if she didn’t quite understand the question, and she knew my question required a response, even if she no longer had a way to find those words. When I said I was glad she was having a good day, she responded with a crisp, “Boop!” It was a positive interaction.

I can have a ten minute talk with someone who has dementia, be completely unable to identify what we talked about, and feel like it was a pretty great conversation. Sometimes these conversations are the best conversations I will have all day. But it’s not always that easy.

Sometimes people really want to tell me something but can’t find the words. Imagine how terrifying that could be. You have something you want to express but you cannot find the words because your brain is dying. And then sometimes people just shut down. They stop talking altogether because they feel stupid. They don’t bother to talk because people are always telling them they’re wrong–that Reagan isn’t President anymore, that their kids are no longer in college, or that it’s January and not May. Or maybe they stop talking because it’s hard work.

Sometimes I walk away from Dementialand with some amazing nugget of wisdom that came from a person who has no idea what year it is or their spouse’s name. This happens quite a bit, actually. I got my best advice on marriage from a guy with dementia who told me he had been married for 30 years. What I learned later is that he left his wife after 35 years and he then married a MUCH younger woman, but he didn’t remember that. His daughter told me. I decided to buy into his advice anyway. It was, “Marry someone who laughs at the same jokes that you do.” Somehow, it’s stuck with me.

I never know what to expect from conversations in Dementialand.

But Is Alzheimer’s the Same Thing As Dementia?

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Question: Is Alzheimer’s the same thing as dementia?

Answer: Alzheimer’s is to dementia….as chair is to furniture. Alzheimer’s is to dementia….as orange is to fruit. Alzheimer’s is to dementia….as beagle is to dog.

You got that? If so, stop reading now. You won’t hurt my feelings.

If that doesn’t make sense or you want to learn more, read on.

Dementia is a set of symptoms. These symptoms might include changes in memory and/or personality, poor judgment, inappropriate behavior, impulsiveness, attention problems, and faulty reasoning. Notice I mentioned that dementia is MORE than memory problems. As a society, we tend to think that getting dementia just means we get forgetful. We lose our keys. We call people by the wrong names. We forget what day it is. And that’s a complete underestimation of how dementia can destroy a life.

People with dementia may show inappropriate sexual behavior toward family and friends. They may make racial slurs toward ethnic minorities at the grocery store. They might forget to pay their bills and find that their utilities are disconnected. It is common for people with dementia to wear clothing that is not appropriate for the weather (i.e., shorts in Iowa in the of middle of January). I once got a call from a woman who was horrified that her mother left her infant granddaughter home alone–because she forgot she was babysitting.

But does someone with dementia have Alzheimer’s? The answer is MAYBE. Alzheimer’s can cause dementia, but many other diseases can cause dementia as well. There’s Lewy-Body Dementia, Parkinson’s, vascular dementia (common after a stroke), Frontotemporal Dementia….Although there are many more causes of dementia, these are among the most common. When someone shows signs of dementia, it’s important to get an accurate diagnosis, and this typically comes from a neurologist, a neuropsychologist, or a psychiatrist.

Alzheimer’s is the LEADING CAUSE OF DEMENTIA. What many people don’t know about Alzheimer’s is that it is a terminal disease. Alzheimer’s kills. It kills because is causes total brain failure. Our bodies cannot continue to function after enough of our brain cells die. When I do public speaking, I often mention in far too casual of a manner that Alzheimer’s is fatal. I am working on that. I need to be gentler with this information. I throw it out there assuming that the families of those with Alzheimer’s know that Alzheimer’s is terminal. I should know better.

My grandmother died of pancreatic cancer. We knew it was terminal cancer at the point of diagnosis. She passed away less than a week later. For those days, my family lived in crisis. We struggled to eat. We struggled to sleep. We cried. But we survived. You can live like that for four days. You don’t do permanent damage to your physical or mental health.

But Alzheimer’s is different. You can’t live in survival mode for the duration of the disease. It is not unusual for someone with Alzheimer’s to live ten years after diagnosis. People cannot exist in crisis for the length of the journey. Care partners must take care of their own health, and they must find a way to seek out hope and laughter. Furthermore, they MUST accept help. In our society, we glamorize the person who sacrifices their own life to care for a loved one. But Alzheimer’s is a marathon. Caregiving for someone with Alzheimer’s and not accepting help is like running that marathon and not drinking water.

So does someone with Alzheimer’s have dementia? YES. Does someone with dementia have Alzheimer’s? MAYBE.

Gifts from Dementialand

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I’ll start by saying that dementia is NOT a gift.

It’s not a normal part of aging. It is cruel and debilitating.

And, yet, there may be gifts that come along with dementia. And when we are given a gift by dementia, we must accept it.

(I tell the following story with the permission of the family it is about.)

I spoke at an Alzheimer’s support group a few years ago. A woman came up after I was done talking to ask a question. She explained that her sister, Suzy (not her real name), had died by suicide eight years earlier. Suzy had been a drug addict who was diagnosed with bipolar disorder. She’d struggled to hold a job and had rocky relationships with her family, including her parents.

Her mother, Millie (again, not her real name) had found Suzy after she passed of a gun shot wound, and not surprisingly Millie had been plagued by depression since the death of Suzy. The situation was even more heart-breaking because Millie and Suzy had a big fight the evening before Suzy’s passing, and Millie had said some things for which she would never forgive herself.

Millie had been on several antidepressants and seen multiple therapists in the years following Suzy’s passing, but nothing relieved the depression which plagued her. In fact, it only seemed to get worse. Millie quit her part-time job, stopped seeing her friends, and barely left the house.

As Millie entered her 70’s, she received a diagnosis of Alzheimer’s. Soon after her diagnosis, Millie began saying things like, “Suzy hasn’t been around much lately. I wonder what she’s up to,” and “I’m hoping Suzy can make it to dinner this week.” Her family realized that she had no memory of finding Suzy after she had passed away. Although Millie struggled to do everyday things like make dinner, put away laundry, and take care of her dog, the depression seemed to lift.

The woman telling me this story could hardly get the next part out without tears. She said, “And it’s so hard telling Mom over and over that Suzy is dead. We have to tell her at least once a day.”

I asked what Millie’s response was when they told her Suzy had passed away several years ago. The woman said, “Well, even though it happened eight years ago, she breaks down just like it’s the first time someone’s told her.”

WAIT. STOP. It’s not “like” the first time someone’s told her. It IS the first time someone’s told her. Each and every time. It is the first time she’s hearing that her daughter is dead. It makes no difference that eight years have passed. It makes no difference that she’s been told literally hundreds of times.

In retrospect, I could have been gentler in my delivery, but I asked the woman to explain to me what it felt like when she was told her sister died by suicide. She told me her legs wouldn’t hold her up and that her gag reflex kicked in. She told me that she called friends to let them know but no words would come out when they answered the phone.

I pointed out that this was similar to what Millie felt every single day when she was told that Suzy was gone. The woman looked horrified but then asked a question that people ask me a lot: “But is it okay to lie?”

YES.

And if you don’t want to think of it as lying, you can call it “therapeutic fibbing” or “stepping into their reality.” Whatever makes you feel better about it. But YES.

Millie lived in what I sometimes refer to as Dementialand. In Dementialand, Suzy was still alive. And, in that sense, Millie’s reality was far more comforting than the reality that her family tried to insist upon.

Her family can argue and correct her all day long (as they were doing), but they can’t get her out of Dementialand. This is apparent when Millie asked again the following day where Suzy was. As a family, you have to learn to step into Dementialand instead of fighting it. And in this particular case, Dementialand had some advantages.

Living with dementia is hard work for the individual who has it. You may question others; you may question yourself. You may have debilitating anxiety. Dementia is about complete brain failure. It’s cruel, unrelenting, and terrifying.

This is why when dementia gives us a gift, we take it and run.

How I Got to Dementialand

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I grew up in a nursing home.

My mom was a nursing home activity director, and I spent my time after school and on the weekends in the halls of Bethesda Care Center. I helped with Bingo, pushed people in their wheelchairs to the chapel for church, modeled my back-to-school clothes for a fashion show, and did dance routines for the residents. In some ways, being at the nursing home made me feel like a rock star. I got a lot of attention from the residents. They thought I was the cutest, funniest, and smartest kid they’d ever seen outside of their own grandkids. I relished every bit of positive feedback.

Of course, there were days when we’d pull up at the nursing home and find a gurney on its way out of the facility. A couple of somber men in suits were pushing out a body covered by a white sheet. I’m unsure if this is a fair representation or just my perception, but I would guess that 80% of the time we arrived at the nursing home to find someone had passed away it was storming outside. If we arrived to find a death had occurred, my mom would stop to quietly ask another employee who had passed away. Then she’d let me know. I don’t remember crying, even if it was a resident I really liked, perhaps because it was such an “ordinary” occurrence.

When you walked into the nursing home, there was a large board with each resident’s name and room number. Of course, it changed frequently with admissions, discharges, and deaths, but I took a lot a pride in being able to remember who was in each room even when I was 7 or 8 years old. If a visitor stopped me in the hall to ask if I knew what room Myrtle Smith was in and I didn’t know, I would be really disappointed in myself and study the board a little harder.

I spent time with people who had dementia. I didn’t know the term dementia when I was in elementary school. Now I know that dementia is not a normal part of aging, but at the time I didn’t realize that. I guess I just thought that some people got a little crazier or didn’t make much sense as they got older.

I knew that certain people at the nursing home didn’t realize they were at a nursing home. Some seemed to think they were at a school or a place of business. One woman thought it was an airport and she was trying to find her gate. They often thought I was someone else–many times they thought I was their daughter or granddaughter, but that was okay because it usually meant they were extra nice to me and wanted to spend time with me. I didn’t care if they called me by a different name. I never corrected them. In fact, sometimes I thought people had special nicknames for me. Looking back, those nicknames were probably the names of family and friends with whom they had me confused.

Their dementia was a perfect fit for where I was at developmentally. It allowed them to “play” with me in a way similar to how kids play with other kids. We pretended we were somewhere else–a different time, a different place. It was only years later that I realized I was pretending…I was using my imagination. They were NOT pretending. They were acting on their “reality,” and imagination had nothing to do with it. But it worked.

And it makes sense why it worked. If two kids play together and one pretends that they are cooks in a restaurant, the other kid doesn’t point out that they aren’t really in a restaurant. They jump in and play a role in the restaurant scenario. And that’s how it was when I spent time with residents who had dementia.

As for the woman who couldn’t find her gate at the airport…I noticed employees would tell her that she wasn’t in an airport at all. They’d insist she was in a nursing home, and she’d get mad. I never told her she was in a nursing home. I didn’t correct her because to me it was just all part of the game. And I found the game to be a lot of fun. We’d wander around until I showed her where her gate was. When we found it, she was so excited and grateful. And I felt like I’d won the game.

I had favorite residents, of course. A never-married woman who lived to be over 100 and could play the piano even though she couldn’t see a thing. A lady who had a tracheostomy but had crocheted colorful necklaces with patches to cover the hole in her neck. An old farmer never seen without his green John Deere hat. A woman who had a poster of a beautiful gymnast over her sterile nursing home bed. I found out that the gymnast was her 16-year-old granddaughter who had been killed by a drunk driver. I was fascinated by the poster. But these were my friends. They were always excited to see me and never failed to make me feel good about myself. It was more than I could say about the kids at school.

Many of my nursing home friends had colostomy bags and catheters. I knew quite a few wore adult diapers. Several were on oxygen. You might think that some of these things would be gross or scary to a kid, but they weren’t. I was exposed to them so early in life that it didn’t occur to me that I should be frightened or unnerved. And, so many people had them that they didn’t even register to me. If I noticed colostomy or catheter bags, it was often just to appreciate the bright covers that were knitted for them. I don’t think I knew the words colostomy and catheter, but I’d say something like “Ohhhh….I love your pouch, Elsie!”

Every kids grows up in a different environment. The nursing home was a big part of my environment. When people ask me why I became a gerontologist, I always start by telling them I was a “nursing home brat.” But I never intended to be a gerontologist and it was never part of my master plan. (For the record, I don’t believe in master plans, at least master plans that you make regarding your career when you are 18 years old.)

But there’s something about the field of aging that drew me in. I’ve told my college students that a great strategy for being successful in your career is to find something that other people find repulsive–but you find interesting–and throw yourself into it completely. I hate that many people find aging repulsive, but it’s undeniable. I would love to make a short video of the range of disgusted and confused faces I get when I explain that I actually ENJOY working with older people (especially those with dementia) and am FASCINATED by the process of how we age.

So here I am…a nursing home brat all grown up. I have a PhD in Human Development and Family Studies from Iowa State University. I’m a faculty member at university, where I get to oversee the Family Services and Gerontology program. I do research on psychosocial aspects and family knowledge of Alzheimer’s and related dementias, as well as how students choose careers in aging-related fields. I teach courses like Psych of Aging; Families and Aging; and Families, Alzheimer’s, & Related Dementia. I am fortunate to do public speaking on topics like dementia and caregiving, and I also do a program called Memory Trunks that allows me to visit with people who have Alzheimer’s and related dementias in settings like adult day services, nursing homes, assisted livings, and memory care units.

But here’s the thing…when I walk into a nursing home to work with people who have dementia, none of my credentials matter. The residents could not care less about my doctoral degree. It’s just like when I was a kid hanging out at the nursing home after school. All people with dementia want is for me to step into their world, listen to them, and help them find their gate. My goal is to let go of every bit of “adult” I have in me and relate to individuals with dementia in the same way I did when I was six years old.