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.

But When Are You Supposed to Grieve in Dementialand?

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I gave a presentation for dementia family caregivers at a memory care community last fall. A middle-aged woman in the front row did not seem impressed with me at all. She almost scowled at me when we did make eye contact, but for most of my presentation she stared at the wall above my head. I wondered if I had said something to offend her. After I was done talking, she came up to me.

She blurted out, “My husband has early onset Alzheimer’s. So when am I supposed to grieve?”

I asked her what she meant. She said she grieved when he was diagnosed. She grieved when he had to move to the memory care community. She grieved again when he no longer knew who she was.

She seemed so angry. I wasn’t sure if she was angry at Alzheimer’s, grief, or me. Maybe all three of us.

“When he dies, am I supposed to grieve again?” she asked me. She seemed almost annoyed at the idea of having to grieve again after all the grieving she had already done.

This question likely stemmed from concept I mentioned during my presentation. I had talked briefly about “ambiguous loss,” which means that there is some uncertainty about whether someone is gone. Examples would be soldiers who are missing in action and people who are in comas. More recently, we’ve applied this term to people with dementia.

When do you grieve when you’re not sure if people are dead or alive? Do you grieve if they’re right there with you but they linger somewhere between this world and another? Those are the types of questions families undergoing ambiguous loss encounter.

When someone dies in a car accident, grief comes all at once. When someone dies of Alzheimer’s, the loss is much different. I’m not making the case that it’s easier or harder, better or worse. But it’s a different journey. We may feel like we’ve lost our loved one little by little over years. In some ways, we might feel like there is little left to lose when death comes. And yet, even if there is relief, there is still a loss.

I’m not an expert on grief, but I will tell you this… I hate Elisabeth Kubler-Ross’s stages of grief. You know the model. There’s denial, anger, bargaining, depression, and acceptance. I used to think these stages didn’t work for dementia because of the long goodbyes and multiple gradual losses involved in diseases that cause dementia. But it’s only recently that I’ve realized that these stages don’t work for grief in general.

In defense of Kubler-Ross, she eventually came to state that all stages were not experienced by everyone, that the stages did not always occur in order, and that some people experienced emotions outside of the five that she listed. Most thanatologists (those are people who study death–fun, right?) acknowledge there is no real research or evidence to support Kubler-Ross’s stages.

Despite these limitations, people generally really like the theory. Why? Because it’s comforting to think we progress through these stages and come out at the other end (acceptance). But when we lose someone close to us, it’s not that simple. Grief just isn’t that clean and tidy.

And when we grieve, we often have the expectation that the progress will be linear. That we will “progress” forward at a steady rate toward some end goal. But in reality, there is no end goal. There’s no point where we won’t hurt. The best case scenario is that we get to a point where life is enjoyable despite the pain.

We often are also told that our grief will make us better, stronger people. I think that’s a bunch of crap. A college student of mine lost her sister and received a sympathy card that suggested she would emerge on the other edge of her grief as a wiser and more loving individual. She said she didn’t want to be wiser and more loving; she just wanted her sister back.

I once talked to a woman who had just lost her husband to dementia. She was relatively young (probably in her 50’s). She told me she was scared she could never enjoy life again, but her bigger fear was that she could enjoy life again. And if she could enjoy life again, what would that mean about her? It terrified her that a week or so after her husband’s death she went out with some friends for margaritas and actually had a pretty good time.

“But my husband hadn’t known me for a year,” she said, as if she needed to defend herself. She certainly didn’t need to defend herself–not to me, anyway. “It’s like I didn’t know what stage to be in…so I went out for margaritas. In my mind, I shouldn’t have gone out for margaritas until he was gone at least a month.”

And then there was the woman who had lost her husband to Alzheimer’s after taking care of him for 15 years. She said when she passed she felt a lot of things, but the overwhelming feeling was uselessness. Who was she if she was no longer his caregiver? Was there even a reason to get up in the morning? Although she was continually frustrated by her husband’s dependence on her (and resentful of her caregiving responsibilities), she cried after he passed because no one needed her. Kubler-Ross never mentioned uselessness.

The problem with the Kuber-Ross stage theory is that it sets up some expectations and predictions for grief. And when we don’t follow the path we expect, we think we’re doing something wrong. This is even more evident when we experience “long goodbyes” like those that happen in Alzheimer’s.

When that woman asked me if she was supposed to grieve again when her husband died, I didn’t have a good answer. I told her however she felt at his death would be okay, and she wouldn’t really know until she got there. I drove two hours home that night (in a blizzard, nonetheless) thinking about what would have been a better response.

I wish I had said that there is no “supposed to” when it comes to grief.

Tequila in Dementialand

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A woman had recently been admitted to hospice and her family wanted to go out of town to attend a wedding. The volunteer coordinator asked if I might be able to stay with her for an evening.

Bev (not her real name) was a divorcee in her 70’s who had had vascular dementia. She’d experienced several strokes and had been told she was in heart failure. I know she had a constellation of other health issues as well. As a former director of nursing at a nursing home, she knew where this was headed.

When I first came in, Bev offered me a drink. I made a rule for myself when I started volunteering for hospice to say yes when I was offered food or drink because people often feel the need to give me something and–to be honest–I really like eating and drinking. But when I asked Bev what she had, she threw me for a loop.

“There’s beer and wine in the fridge,” she said. “Do you like tequila? What do you like? There’s hard stuff, too.”

And she wasn’t kidding. Bev had the most well-stocked home bar I’d ever seen. Several kinds of tequila, rum, multiple flavors of vodka, whiskey, bourbon, you name it…. I’ve been to many bars that did not have that selection of alcohol.

“Do you have any soda?” I called from the kitchen.

“For a rum and Coke?” she asked. I laughed out loud, but it wasn’t a joke. I grabbed a Coke. Just a Coke.

Bev kept forgetting who I was and why I was at her house (although this didn’t stop her from continually offering me alcoholic beverages throughout the evening). She’d ask me to remind her who I was, but it didn’t seem to bother her in the least that there was someone in her house that she didn’t recognize.

Despite her dementia, Bev was pretty clear on some things. She knew she was in hospice, and she knew she had limited time. She was certain of how she wanted to die.

She told me that she had a large extended family and they spent a lot of time at her house. She told me that she thought it was partially because they loved her and partially because she kept her bar stocked. At least four nights a week she had a crowd at her house. They drank, played cards, watched movies… And she had already told her family that this was not going to change now that she was in hospice.

“The party goes on,” she told me. She didn’t want a bunch of solemn goodbyes.

Then she asked me if I’d pour her a glass of tequila. I didn’t know what to say. This was the first and last time a hospice patient had ever asked me to play bartender. I had a cell phone number for Bev’s daughter, so I decided to give her a call. I asked if her mother was allowed to have a glass to tequila.

The daughter said that Bev’s doctor had told them it was okay for Bev to have one drink each night. I felt a little bit uncomfortable pouring a drink for my hospice patient, so I brought her the bottle and a glass. With shaky hands, she poured it herself.

As we were sitting together and Bev was having her tequila, there was a knock on the door. It was two guys delivering a hospital bed. Bev’s daughter had indicated that they might be stopping by.

“Where does the bed go?” one of the guys asked.

“Right here,” said Bev, motioning to her dining room. The two guys and I gave her a funny look.

I decided I had better call Bev’s daughter. I explained to her that Bev was intent on having the hospital bed in the dining room. Bev’s daughter wanted to know why, so I asked Bev. She took a long drink of her tequila before answering.

She explained that she wanted to be in the midst of everyone. She didn’t want to be isolated upstairs in her bedroom as her condition progressed. And, she told us, she needed to make sure the bar was stocked. This was something that Bev had given some thought to. Her daughter hesitantly agreed, and the two guys brought the bed in.

They set up the bed and left. Bev turned to me and asked (again) who I was and why I was at her house. After I told her, she told me I should get myself a glass of tequila. My high school and college peers had not pressured me to drink as much as Bev was pressuring me to drink.

Although she was having difficulty remembering who I was, she was open to sharing details of her life with me. She told me that her husband had left her a few years ago. I had a feeling it was a few decades ago, but that didn’t matter. She mentioned that he “couldn’t handle the party of my life.” She told me that her husband thought she was an alcoholic.

“Maybe I am an alcoholic,” she said, leaning in. “But I’ve had a pretty good life.”

Her daughter got back about 10 pm. At this point, Bev was fighting to stay awake on the couch. As I left, she offered me a drink “for the road.” I was putting on my coat in the foyer when I heard her ask her daughter about me.

“Now, who was that? She seemed nice but I guess she doesn’t drink. I offered her the special tequila,” she said.

About a month later, the volunteer coordinator called to let me know that Bev had passed away. I didn’t ask for any details. I wanted to think she passed away in that hospital bed in the dining room with the party continuing around her.

I can’t drink straight tequila, but that night I had a margarita.

Bev was wrong about me. I do drink. I only wish I could’ve used some of her good tequila in that margarita.

Home in Dementialand

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

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

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

“I wanna go home,” she responded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pain in Dementialand (aka What Kidney Stones Taught Me)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Assholes in Dementialand

alzheimer's, dementia, lewy body dementia, ,

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

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

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

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

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

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

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

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

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

Writing About Dementialand

alzheimer's, caregiving, dementia, publishing, ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dying in Dementialand

aging, alzheimer's, death, dementia, dying, hospice, , , , ,

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.