Category Archives: childhood

Coloring Contests in Dementialand (aka Simple Things in a Complicated Situation)

alzheimer's, caregiver, caregiving, childhood, dementia, dementialand

They are having a coloring contest, I am told.

“They’ll sit there pretty much all afternoon,” Kathy says, as I watch her mother and her daughter sit in the dining room at the nursing home with a tub of crayons and a stack of coloring books.

There is something about it that fascinates me. A grandmother and a granddaughter, separated by about 60 years, but somehow in the same place in this moment.

“It used to break my heart,” Kathy tells me. “But now it makes me smile.”

Kathy explains to me that her mom was a successful career woman. She has a master’s degree and was the superintendent of a small school district. In her spare time, she was an avid reader and loved photography.

“She was a real intellectual-type person, but now she’s…this,” Kathy says, gesturing toward the coloring contest. When Kathy says “this,” she’s not saying it in a condescending or negative way. She’s just in awe of the way her mother has changed over the past several years. “This” is different, but maybe not all bad.

Kathy tells me that she always pictured her mom babysitting her daughter. She thought her mom would teach her daughter to love classic literature and encourage her to go to an Ivy League university. She never pictured them coloring together (and sometimes arguing about who gets to use the blue crayon) like peers.  It’s not what Kathy pictured, but it’s what she’s got, and she’s learned to appreciate it in a way that I find admirable.

“My mom never would’ve taken the time to color with my daughter for hours before she had dementia. She’d be too busy doing other things,” Kathy says.

The scene that Kathy never saw coming and used to break her heart is one she knows she will long for in the future. She knows that soon her mom won’t be able to color. She won’t know what to do with a crayon. She won’t understand what a coloring book is. That day is coming. Kathy knows it. And her daughter will lose interest in coloring. Someday soon she’ll see it as childish and move on to other things. Kathy knows she’ll think about the coloring contests and wish she could go back in time to watch them contently coloring together again.

It’s like they’re crossing, she tells me. Her mom is going backward. Her daughter is going forward. But right now…right now they seem to be in the same place. I can’t help but think it’s beautiful and sad all at once. Kathy has found a way to focus on the beautiful. She knows there’s some sad in the future, but right now there’s a coloring contest.

Every once in a while, Kathy’s daughter walks up with a page torn out of a coloring book to show Kathy. She sometimes asks who is winning the coloring contest. When she asks, Kathy’s mom stops coloring and holds up her project for Kathy to review.

“It’s a tie, ” Kathy says. I asked if it’s always a tie. Kathy tells me that it usually is…because once she pronounced her daughter the winner and her mother started to cry.

Life with dementia can be pretty complicated. As we watch the coloring contest, Kathy tells me about the challenges of getting her mom the care she needs, the financial struggles of their family, and how she’s not getting along with her siblings. She starts to talk about the problems she’s having with her husband because she spends most of her free time at the nursing home, but then waves her hand and shakes her head. Her voice trails off for a moment.

“This dementia thing really sucks, but I brought in a new box of 48 Crayolas this morning, and it made both of them so happy,” she says.

Kathy knows that crayons won’t always make her mother and daughter smile…but today they will. And that’s enough.

And you know what you do when the loser of the coloring contest cries? You always say it’s a tie.

Sometimes dementia makes life really complicated, but sometimes things are pretty simple.

 

 

 

How I Got to Dementialand

alzheimer's, childhood, dementia, nursing home, ,

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.