Category Archives: nursing home

Changing the Environment in Dementialand (and How I Broke One of My Worst Habits Ever)

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Recently I realized I had developed a really bad habit. Not just bad but dangerous. I had started glancing at my phone while driving. I’d hear it buzz and couldn’t resist taking a look to see who had sent me a text or email. I wasn’t that person driving in traffic with my phone in my hand, but I wasn’t proud that I couldn’t drive the 12 1/2 minutes home without looking at my phone at stoplights.

So I tried to stop. And I couldn’t. It had become a habit, and habits can be hard to break. I wasn’t going to be able to easily extinguish my urge my look at my phone, so I was going to have to change my environment.

I made a decision to silence my phone and put it on the floor of the backseat where I could not see or hear it. For a couple of days, I found myself wanting to look at it. Eventually I stopped thinking about it as much. Putting my phone out of reach and out of sight (literally) made all the difference.

I decided to try this strategy after thinking about the advice I give many family and professional caregivers who have loved ones with dementia. I am always using the phrase “Change the environment.” Changing the environment is easier than changing a person’s impulses, thoughts, and behaviors. In other words, putting my phone where I couldn’t reach it was easier than not reaching for my phone when it was on the seat next to me.

At a caregiver support group, I spoke to a woman who said that her husband with Alzheimer’s was destroying things around their home. For instance, he had stood on a chair, taken the clock off the wall, and yanked the hands off of the clock’s face. He had also slammed some of her collectible dolls onto the floor, cracking off their heads. One day he even took some framed photos of the wall and literally threw them out the back door. She found herself losing patience with him.

She asked what she could do to get him to stop. I only had one idea. She needed to change the environment. I suggested she take anything she found valuable, meaningful, or important and place it in one room of the house. She could then use a lock system to keep him out of this room. As long as the items were around and available to him, he was going to continue to destroy them (and she was going to yell at him). As I saw it, the only option was to change the environment.

I gave the same advice to staff at a nursing home recently. A woman with dementia had a room that overlooked a fantastic garden. In the middle of the garden was a large concrete rabbit. The woman thought the rabbit was a stray cat, and she spent a lot of time worrying about this stray cat. She didn’t know if someone was feeding it or if it had a home. All day long, she tried to go outside to help the cat. It was to the point that the woman was sometimes in tears because she wanted to check on the cat but couldn’t get outside. She was wondering around the facility in hysterics. Obviously, telling her the concrete rabbit wasn’t a cat was not helpful. Again, I only had one suggestion–change the environment.

I asked an employee if it was possible to move the concrete rabbit. She explained that it was purchased specifically for that spot. Then I proposed another idea…move the resident to room where she could not see the rabbit. In the end, they did move the rabbit. I guess that was the easier option. They changed the environment.

Changing the environment can set us all up for success. I’m not just referring to those with dementia. If we don’t want to be tempted to get ice cream on our way home from work everyday, we should modify our route so we don’t drive by Dairy Queen. If we don’t want to spend more than $50 on a trip to Target, we should take $50 cash and leave the credit cards at home. If we are trying to curb drinking, we should stay out of bars. It’s easier to modify the environment than to depend on our willpower and reasoning when challenges arise.

When it comes to “challenging behaviors” in dementia, sometimes changing the environment seems to be an obvious solution, but it doesn’t occur to the people closest to the situation. I once spoke to a woman whose mom had Alzheimer’s and was hospitalized for a urinary tract infection. A friend had sent beautiful (and likely expensive) flowers to the hospital. The flowers sat in a large vase in the corner of the room. However, the mother thought the flowers were a scary clown face. She kept complaining about the clown in the corner staring her down.

The daughter and the nurses kept bringing the flowers over to show her that they were indeed flowers rather than a clown face. Of course, she was not convinced and become more and more agitated. Then a 10-year-old relative stopped in. He sized up the situation, picked up the flowers, and slammed them in the trash. Then he yelled, “I killed Scary Clown!” Problem solved. (In retrospect, he could’ve taken them out to the nurses’ station, but I guess he had a taste for the dramatic.)

It’s much easier to move a concrete rabbit than to convince a woman with dementia that the concrete rabbit is not a stray cat who might be hungry. It’s much easier to put valuables in another room than to nag a guy with Alzheimer’s about why he shouldn’t demolish them. And it’s easier for me to put my iPhone in the backseat than to try to resist the urge to look at it while driving.

If you interact with someone who has dementia, consider changing the environment in particularly in response to behaviors that might be harmful and dangerous. If you have a goal or are trying to break a bad habit, consider changing your environment to set yourself up for success.

Oh, and if you can’t help but look at your phone while driving, throw it in the backseat. If that doesn’t work, consider the trunk.

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.

Til Death Do Us Part in Dementialand

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This is not the post you expect it to be. If you’re looking for a heartwarming tale, you might want to check out “Chicken Soup for the Soul: Living with Alzheimer’s and Other Forms of Dementia.” (Yes, it really does exist, and it’s not a bad book if you’re into that type of thing.) But I’m not sure you’re gonna get warm fuzzies from my post today. In fact, I have no idea how you’re going to feel after you read this post.

In my visits to a nursing home, I met a bubbly nursing home visitor in her 50’s who I will call Jean. Although I tell this story with her permission, I have changed her name. Jean’s husband, who I’ll call Gary, was also in his 50’s, but his appearance would have lead me to guess he was in his 80’s. Gary, who had younger-onset Alzheimer’s, had lived at the nursing home several years. He was in end-stage Alzheimer’s and seemed somewhat stalled there.

He spent most of his time in bed. He had to be turned every few hours to avoid pressure sores. When the staff got him up in a wheelchair, he slumped over to one side–usually unable to keep his eyes open. He fought a constant battle against pneumonia (common among people in end-stage Alzheimer’s due to compromised immunity) and was on a thickened liquid diet to avoid aspiration. He had not spoken for over a year. Jean told me he stopped recognizing her long before that.

Jean worked full-time and stopped by every evening. Sometimes she sat with him and watched Wheel of Fortune while holding his hand. Once in a while, I saw her doing crossword puzzles. She enjoyed talking to other residents and their families. She was bright, caring, and always laughing.

If you’ve spent any time in nursing homes, you know that they can be gossip mills. I found out through the nursing home gossip mill that Jean had boyfriend. Not that she was hiding it. It had just never come up when I made small talk with her.

As I got to know her a little better, she’d mention her weekend plans or what she did the previous evening, casually dropping the name of her boyfriend. I didn’t ask too many questions. I’m sure she had enough judgement in her life, and I didn’t want her to misinterpret my curiosity as disdain. Frankly, it was none of my business.

But I learned more as time went on. Gary was diagnosed with Alzheimer’s in his mid-40’s. His mom had younger-onset Alzheimer’s as well, so they weren’t shocked, and they had an idea of the path ahead. They went on a few trips right after the diagnosis. Jean knew these trips would be bittersweet, but they ended up being more bitter than sweet.

Unlike many people who tell their loved ones to never put them in a nursing home, Gary told Jean that he didn’t want her to care for him at home as the disease progressed. He made the choice to put his mother in a nursing home although she repeatedly requested that he never do so. He lived with that guilt, and he didn’t want to Jean to have to do so.

When the time came, she placed him in a nursing home. She visited every evening. A few years later she met someone. She continued to visit Gary every evening. She told me she loved Gary as much as ever, but she no longer viewed him as her husband.

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

I can’t say Jean’s situation is the norm when a spouse has dementia, but I also can’t say it is rare. In fact, on the very same nursing home hallway where Gary lived, there were two other wives in similar situations. I am not speaking of wives who had abandoned their husbands at a nursing home. I’m talking about wives who visited at least once a day, were active participants in their husbands’ care, and had boyfriends.

It’s common enough that the Wall Street Journal wrote a story about it several years ago:

http://www.wsj.com/articles/SB10001424052748704317704574503631569278424

Even religious authorities are split on whether this is okay or not. I’ve kicked it around quite a bit, and all I can say for sure is this:

If I had dementia, needed 24/7 care, and no longer recognized my spouse, would I be okay with my husband dating someone else? The answer (for me) is absolutely yes. And I would not want him to feel guilty about it for one second. Of course, I haven’t been diagnosed with dementia. Could my thoughts on this change if I were diagnosed tomorrow and saw dementia a real rather than hypothetical part of my future? Of course.

I know that Jean was with Gary when he passed away. Til death do us part. Or something like that.

 

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.