Following Up in Dementialand

Several months ago I wrote a blog post about why I dislike the movie, The Notebook. In short, I take issue with how it presents Alzheimer’s. On an unrelated note, I think it promotes stalking as romance.

You can read all about it here:

https://welcometodementialand.wordpress.com/2015/03/09/my-least-favorite-dementialand-movie/

I had no idea the Facebook messages and emails I would get after this post. Sure, some people agreed with me. Other people sent me comments like:

“Chill, honey, it’s just a movie.”

“So what if it’s not realistic. It’s a damn movie. Relax.”

“You don’t seem to understand the purpose of a movie. Why do people have to overanalyze everything and take away all the fun?” 

I was surprised that this post caused a stir, but I’ve realized that I’m a poor judge of which of my blog posts people will be controversial. I never would have guessed that my post about The Notebook would earn me the most hate of all 50-some posts I have written. People acted like I was killing kittens. And I can laugh about this now…

I predicted that Monday’s post about care partners who pray for their loved ones to pass away would offend someone. I thought I’d get a few emails from people who didn’t like the way I presented this, or maybe were just uncomfortable with the whole premise.

I got a little bit of feedback on Monday morning, mostly from people who said they could relate to the post. A few people thanked me, and in general people said reading the piece made them feel a bit more comfortable with their experience of wishing a loved one would die–rather than continue to live a life that they were pretty certain wasn’t worth living. I went for a run and checked my email when I got back. And whoa.

I had a lot of emails. Nineteen to be exact. They were from individuals who had experiences to share that related to the blog piece. Many of the emails were from care partners or former care partners of those living with dementia. However, quite a few of the emails were from those who had lost a loved one to cancer or another illness. And I thank those of you who gave me permission to share parts of your emails and Facebook messages. (A few people also posted very insightful comments on the actual blog post, if you are interested.)

Here are excerpts from the messages I received:

“My mother in law lives with us and has vascular dementia. I hate to say it, but I’m ready for her to pass away. It’d be different if I thought she had any joy in her life now. But I don’t think she does. There is a time when somebody is just done. She’s done. But her body is still here. I haven’t told my husband this. I don’t know if he’s there yet.”

“I have felt guilty for years because my mom was dying of cancer and I wished it would just be over. I prayed for her suffering to be done. Then when she died I felt awful. Not because she was gone but because I prayed for her to be gone. But she was suffering. I just couldn’t do it anymore.”

“My mom has Alzheimer’s and she has had it for about 10 years. The first 5 or so years she was happy. Now she’s not. She lives in terror. I know it must be scary for her. It’s scary for me. I just want it to be over. I want the nursing home to call me and tell me she’s gone. When the phone rings, I hope they are calling to say she’s gone. Maybe that’s awful, but it’s the truth.”

“My dad doesn’t want to be here anymore. He has cancer and Alzheimer’s. We don’t make our animals suffer. We know the kindest thing is to end their suffering. But people have to suffer until the bitter end and we have to watch it….Dad asks me to help him end it in a joking way. He says I should just shoot him and laughs. But I wish I really could.”

“For many years I have felt bad about praying for my mom to die when she was at the end of her life. The doctor kept giving her antibiotics and meds. I wanted them to stop giving her the medicines but I didn’t know how to tell them that and was scared they’d think I was a bad person. So I kept giving her all these medicines but hoping they wouldn’t work…Reading this made me feel more normal.”

“My mom had Alzheimer’s and I prayed she’d die for over a year. After she finally passed, I missed being in dementialand. I guess I got used to living there. I also felt useless like no one needed me. I didn’t know how much I needed to be needed.”

“Amen. My husband is at the end of dementia and has COPD. He is tired. I am tired. I don’t eat, I don’t sleep, he doesn’t know what’s going on. I want to fast forward time. If I had a remote control I’d hit fast forward. Then I think about how I know that after he’s gone I will want to rewind but still can’t stop from wanting to hit fast forward. Don’t know how to change how I feel.”

“I thought I would feel sad when my sister died of Alzheimer’s but I didn’t. I really just felt mostly relief. But I still feel horrible that I felt relief. I feel like a good sister would’ve been sad. This blog post helps a little.”

I usually feel good when I write something that people “get.” If people say they can relate to something I write, I feel like I’ve been successful. However, I didn’t get that feeling as I read through people’s comments on this one.

I just felt…sad.

Praying for the End in Dementialand

I was 23 when my grandpa passed away. He had a lot of chronic health conditions, including diabetes, and he’d recently had a leg amputated. The last time I saw him in person, he kept calling the guy I was dating at the time “Steve” (although his name was not Steve) and he was very grateful to “Steve” for helping him figure out the remote control to his crappy TV at the hospital. The last time I talked to him on the phone, he was telling me about a church picnic that he had attended. He mentioned he brought brownies in a basket. There had been no church picnic.

I remember sitting on the bed in my small grad school apartment with my black cat, Teela, as my mom called me to tell he that he died. It seems surreal that I still have Teela (although now she has three doggie brothers and a feline sister–oh, and a dad!) and am looking at her in her kitty condo as I type this today. It seems so long ago, but I guess it wasn’t that long ago because I still have Teela–although she is a bit heavier and moves slower…I could say the same about myself though.

I asked my mom if she thought I should call my grandma to express my condolences. To be honest, I wanted her to tell me not to bother Grandma. I was a little nervous to make the call. I didn’t know what to say. When Grandma answered the phone, she launched into a story about the Red Roof Inn she was staying at near my grandpa’s hospital. She had spent a lot of nights there, and they were kind enough to not charge her for the night my grandpa died. She was absolutely overwhelmed by their kindness. I think of this every time I see a Red Roof Inn to this day.

I didn’t really know what to say when she paused after praising the employees of the Red Roof Inn, so I blurted out, “I’m sorry about Grandpa.”

“Oh, honey,” she said. “I was praying for the Lord to take him. I knew he wasn’t gonna be strong enough to come home after losing that leg. It was the best thing.”

The best thing?

At that point in time, I had this idea that we all should fight for our lives to the bitter end. I saw death as failure, not as a natural part of life. And I wasn’t sure what I thought of someone hoping and praying for a loved one to pass away.

In a way, I was glad my grandma accepted my grandpa’s death on some level. On the other hand, I couldn’t wrap my mind around the notion that my grandma prayed for my grandpa to die. I can assure you that the experiences I have had between then and now have absolutely allowed me to wrap my mind around this.

I was speaking with a woman recently whose husband has a type of dementia that can progress very quickly. I pointed out that this rare type of dementia has a shorter life expectancy than Alzheimer’s and most other types of dementia. I had only known this woman for about…3 minutes…so I worried that I’d said too much and was perhaps being a bit pessimistic and blunt when I had no idea where she was at with this.

“Oh, thank God,” she said. “The quicker this progresses, the better.” Then she looked horrified, like she couldn’t believe she said this to me.

There are many people who live well with dementia. Unfortunately, her husband is currently not one of them. And she wants this over as soon as possible, for him and for her.

Then she asked, “Am I a bad person for wishing he dies sooner rather than later?”

I wasn’t quite sure how to respond. It seemed like a question for a ethicist, pastor, or philosopher rather than for me. All I could do was reassure her that her feelings were normal considering the circumstances. She was absolutely right that he seems to have little quality of life. He spends most of his day in their bed–but with his eyes open–and he gets upset if she tries to turn on the lights or the TV. He recently told their kids that he was sorry he ever had them, and he had even become aggressive toward one of his grandchildren. She also pointed out that he’d be really upset if he realized that all the money he had worked so hard to save would likely be eaten up by a nursing home.

So, are you a bad person for hoping that your loved one with late-stage dementia passes away rather than lingers on? Absolutely not. This is normal. It’s also normal that you might wish for them to pass away in one moment but in the next minute be willing to do anything to keep them on this earth.

And when they do die, it is normal to feel guilty that you wished that they would pass away and then want them back. It is normal to feel a variety of emotions when a loved one with dementia dies, but one of those emotions may be relief. And–no–none of this makes you a bad person. It makes you human.

If someone says to me that they want their loved one to “go quickly” or “leave soon” or any other euphemism we can use to avoid the actual term “death,” it may be partially from a selfish place–because being a care partner is demanding.

However, I find that more frequently it has nothing to do with the care partner and everything to do with the person with dementia. While some people with dementia live a life worth living right up until the moment they depart, we cannot say that everyone with dementia has a positive quality of life from dementia to death. It’s just not true. Alzheimer’s, Huntington’s, Lewy-Body Dementia, frontotemporal dementia…these can be cruel diseases.

When we look at our loved ones and see depression, anxiety, and pain (physical and emotional), we may hope for death. Don’t beat yourself up if you pray every night for God to peacefully take your parent, spouse, or sibling. No judgment here. And if you attend a dementia caregiving support group and mention that you are ready for your loved one to pass away, you will see a chorus of nods and knowing looks.

I fully anticipate that this post will offend someone. And I am offended as well. I am offended that dementia causes such suffering that one would at some point hope for death for a family member or friend–and that as a society we haven’t been empathetic or supportive enough to those in the midst of this journey.

Passion in Dementialand (A Post About What Gets Us Excited)

A little passion goes a long way.

I’m not talking about relationships here. I’m talking about life. No one has passion for everything they do. We all have to do things that we don’t like doing. That’s part of living in the real world. But we gotta have passion for something or we’re sunk.

My passion is dementia. I don’t like dementia itself. In fact, I really don’t like dementia at all, but I get excited (maybe I should say “fired up”) about educating people about dementia and raising awareness. I cannot count the number of times I have been at a party and was engaged in an intriguing conversation about dementia with someone I had just met–except I was the only one “engaged” and probably the only one who found it “intriguing.”

My husband once joked that we might get invited to more social gatherings if I talked less about dementia. Or maybe he wasn’t joking. Someone once told me that everyone should be passionate enough about something to talk about it enthusiastically for a ridiculous amount of time at a party while boring everyone else in the room. Yep. I can do that.

When someone stops me at Target to ask a question about dementia and I don’t abandon my cart immediately to chat, there is a problem. You should worry about me. Maybe you should even considering planning an intervention of some type–because something’s not right.

I get excited about things other than talking about dementia. A part of me wants to tell you I’m passionate about classical music, art history, and expensive red wine, but I’m not. I’m passionate about college basketball, perfecting recipes for low-cal margaritas, and cheap white wine. (I’m known for buying wine on a clearance end cap at Walgreens. In my defense, our Walgreens has an underappreciated selection of alcohol.) And although these passions may seem less than refined to some, there’s no reason they are less valid.

Maybe you get the same feeling from listening to a full symphony that I do when someone on my team makes a three-pointer or takes a charge. It doesn’t really matter what triggers that feeling, as long as something does.

You may not be as passionate about this dementia stuff as I am (or maybe you are because you are reading this blog) and maybe you don’t like college basketball or cheap wine, but my wish for you is that you are passionate about something. For my stepfather who is a retired forester, it’s trees. If he ever shows up at our house and doesn’t sniff our trees to assess their health within an hour of arrival, I’m worried. One of my mom’s most interesting and notable hobbies is tie-dyeing. If you’ve seen pictures of her, you should know she tie-dyed those t-shirts herself. If I ever get out her tie-dye supplies and she says she’s not really interested in tie-dying, there’s an issue. I’m not saying that issue is dementia, although it could be. It might also be depression or perhaps another medical issue–or maybe just a simple rut. But I’m gonna wonder what’s going on.

When we think of dementia, we think of loss of memory. However, the more time I spend with people who have dementia, the more I realize that loss of passion (more than loss of memory) triggers hopelessness. If you wake up in the morning and have something to be excited about–no matter how big or small it is–there’s hope.

When I think about the individuals I know with dementia, I see many that have held onto a passion or developed a new passion. I know a guy who struggles to remember his wife’s name, but when he’s told that the St. Louis Cardinals play tonight, he’s excited. There’s a woman with Alzheimer’s who used to be a master gardener. She still finds joy in watering the flowers at the adult day center she goes to five days a week. And then there’s the family that tried to stop their grandma from reorganizing her closet every single day–because she had just done it the day before. However, organizing was her passion. It’s what she was excited to do when she woke up in the morning.

I find that families sometimes try to shut down the passions of their loved ones with dementia. Maybe they don’t seem purposeful or legitimate. Maybe they aren’t the same passions that the person had ten years ago. But here’s the thing…and this is advice that works both in and out of Dementialand…

We are not qualified to judge the validity of someone else’s passion. 

I have a friend who is a member of what we call the “sandwich generation.” She is sandwiched in caring for her mother with Alzheimer’s and her young children. One day she noticed her daughter and her mother playing together in the sandbox at a park. At first, she thought about how it looked like a typical grandmother-grandchild interaction. Then her young daughter left the sandbox, and grandma stayed there–playing like a child. My friend sat sitting on a bench, watching her own mother play in a sandbox all alone. She wasn’t quite sure what to think. Then she realized her mother was smiling as she sculpted pictures and designs in the sand with a rake.

You rarely see adults playing alone in sandboxes at city parks, so my friend was not entirely comfortable with this. However, as she thought about it more, she realized it really wasn’t all that different from a monk in a Zen garden raking sand as a part of their meditation. The more I thought about it, the more I realized that playing in a sandbox is no less valuable than how I spend my free time–watching college kids try to put a ball through a hoop.

She kept bringing her mom and her kids back to that same park. She learned to ignore the people who stared at the smiling woman raking alone in the sandbox.

We are not qualified to judge the validity of someone else’s passion. 

I have a lot of friends (both with and without dementia) who have passions that I don’t really get. I don’t have to get their passions to support them in pursuing their passions. And it doesn’t matter what they get excited about as long as they get excited about something. And who am I to say what they get excited about doing is any less valid than what I get excited about doing?

Because of the impact dementia has on the brain, people with Alzheimer’s and related diseases may become apathetic. Often we say someone has “given up,” but that’s not really the case. It’s an actual symptom. The less scientific explanation is that the part of the brain that control motivation and excitement is damaged. Sometimes I will see someone who has “dimmed.” They can’t get interested in stuff that used to interest them–and they can’t find anything to replace those interests.

People who struggle to remember and understand their surroundings may find it hard to be excited about much of anything as dementia progresses, but there are cases when passion remains although memory may have declined. And when that happens, there is a sort of beauty that amazes me.

I often think of a woman who told me about her mother with dementia that didn’t remember she had grandchildren. Her mother eventually moved in with her family and every single morning would seem a little bit surprised to see a couple of small children in the kitchen. When the kids would call her grandma, she would be over the moon–as excited as, well, a new grandma.

“Oh my goodness!” she would exclaimed. “Are these my beautiful grandchildren?”

She didn’t remember she was a grandma, but she still managed to be pretty passionate about it. The most amazing part of this is that her family chose to focus on her passion for being a grandma rather than her need to be reminded everyday that she was a grandma. Rather than being sad that she didn’t remember her grandchildren, they focused on the look of excitement on her face when she realized those grandkids were her grandkids. It was her enthusiasm that allowed them to cope with her loss of memory.

A little passion goes a long way.

The B Word in Dementialand

Burden. It means hardship, mental weight, or strain.

It’s a word caregivers at dementia support groups dance around awkwardly.

Caregivers vent. They talk about their lack of privacy or their dearth of support. They discuss their frustrations and challenges. They say they have no time to care for their own health or spend with friends. Every once in while, someone cries.

But then it usually comes back to a statement that goes something like this: “But it’s not a burden. I love her and I’d have it no other way.” Then they all nod knowingly in a sterile way.

One day, a woman made what I thought may have been a total support group faux-pas. She said it was a burden.

Let me start by saying that she was in her late 30’s with a couple of kids and a full-time job. Her mom had younger-onset Alzheimer’s and had moved in. For a few months, her mom had been able to contribute around the house. She cooked and did dishes. She could watch the kids for short amounts of time. She kept the house clean and pulled weeds. But lately her mom needed so much support to provide help that it really wasn’t help at all.

“Caring for mom is becoming such a burden,” she confided to the group. Everyone cringed at the word burden. “This disease is such a burden on our whole family but most of all it’s a burden on Mom.”

Although some members of the group seemed uncomfortable with her using the word burden, there was something about what she said that made me think. The disease is a burden, she said. The person isn’t a burden. And the disease is a burden to the person who has it even more than the caregivers.

We often say that we don’t mind caring for those we love when they are ill, whether that be with Alzheimer’s, cancer, or another disease. We tell others that we do it out of love. We say we wouldn’t have it any other way. I don’t doubt that this is the truth.

Yet, we wish that we didn’t have to do it at all. We don’t like it when our loved ones need care. We want to see people we care about doing the things that they enjoy. We hate seeing them in pain, whether it be physical or emotional. And that’s why we should hate Alzheimer’s…and cancer…and ALS…and cystic fibrosis.

What this woman acknowledged was not that her mother was a burden but that Alzheimer’s was a burden. And I agree. Alzheimer’s is a burden in a million different ways. Sometimes I feel like caregivers want to deny that the disease is a burden because if they use the word it means that they don’t love the person who needs care.

You get to love the person but hate the disease. In fact, I encourage you to hate the disease and to tell everyone you know how much you hate it–because we’ve spent too long ignoring the challenges this disease presents to individuals, families, and society.

I talked to a family a few months ago who had lost their father to Alzheimer’s before his 60th birthday. They had been through a lot. He had been asked to leave (in their words, “kicked out”) of several assisted livings and memory care communities for aggressive and inappropriate behavior. They had gone through his savings and the savings of his children to try to secure him decent care. Although they weren’t entirely sure, his family thought he died because he had aspirated food into his lungs and developed pneumonia.

“Is all of this normal?” one of the daughters asked me. “I feel like our experience with Alzheimer’s has to be worse than the normal experience. If it’s like this for everyone, people would be fighting harder for a cure.”

I’m not sure there is a “normal” with Alzheimer’s, but I hear a lot of stories like this. The disease can be a real nightmare. They didn’t want to care for their father. They’d rather he didn’t need care in the first place. We care for people because we love them but it’s that love that makes caregiving so difficult. And it’s okay that sometimes we get angry and sad because we have to be caregivers, particularly when the person who needs care is young enough that they really shouldn’t need care (in a perfect and fair world, anyway). It doesn’t mean that our loved one is a burden. It means that caregiving is hard.

I’ve talked with many individuals who have an Alzheimer’s diagnosis. Keep in mind that this is a life-limiting illness. Eventually Alzheimer’s progresses to the point where life is not sustainable. You will die from the disease or with the disease. I know I may sound harsh in pointing this out, but I still struggle to get individuals to understand it. Life doesn’t end at diagnosis (and I know many individuals living and living well with the disease), but Alzheimer’s is terminal.

However, I’ve never had someone after their diagnosis mention to me that their greatest fear is death. Never. When I talk to individuals who are newly-diagnosed, they almost always say that their fear is becoming a burden to their family. Their family usually jumps in and insists that they could never be a burden.

Sometimes it’s better to acknowledge that they will all be burdened by the disease itself. And they will all be burdened together because that’s the way love works. They didn’t ask for this disease and it’s not going anywhere.

At a memory care community recently, a woman with dementia walked up to me and said, “My brain has a clog and I’m carrying around a ball and chain.” I didn’t ask for further explanation, but I sent a text to myself immediately so I would remember her exact words. It struck me as a better description of dementia than anything I’d read in a textbook.

Her clog? Her ball and chain? Those are her burdens. People with dementia are not burdens. They are burdened.

Before and After in Dementialand (Or Why I Watch TLC and HGTV)

I was talking to some friends a few weeks back, and the TV show My 600-Pound Life on TLC came up in conversation. It’s a reality show about super-obese individuals who get weight loss surgery and attempt to change their lives for the better.

For some reason, I was hesitant to admit to my friends that I watch the show. I wanted to say I had never heard of it. I wanted to say I had no interest in watching a reality show like that. Yet, the truth is that I have a season pass on my DVR. I started thinking about what it was about this particular show that I enjoy, and I finally realized why it appeals me. I love a good before-and-after.

I used to watch What Not to Wear. I DVR’ed that one as well. I would watch the beginning but then fast forward to the end. I didn’t care about all the shopping and hair talk in the middle. The make-up tips didn’t interest me. I only cared about the before and the after.

I’m really not that into homes, design, or decorating, but I watch a bunch of shows on HGTV. Why? Because I enjoy the transformation. I love the idea of taking something that is in shambles and making it something wonderful. I also have somewhat of a crush on the Property Brother that does the construction. (The one that does the real estate number-crunching stuff just isn’t my type.)

I really get into those house-flipping shows. There’s Flip or Flop, Rehab Addict, Fixer Upper… If you know me at all, you know I have no interest in flipping a house. If I ever talk about flipping a house, please do an intervention. I like the idea of flipping a house, although it’s not something I have the skills to pursue. I just like the notion of transforming something into something much better. It’s about the before-and-after. The before is dull and drab. The after is bright and shiny.

I also watch Intervention on A&E for the before-and-after effect. Someone might be a drug addict before but maybe–just maybe–they can be a productive member of society after. There a certain level of hope in that.

In grad school, I lived with my friend, Lisa. We would watch Intervention every Sunday at 9 pm. Exactly at 9:40 (as the family was just gathering for the intervention), Lisa would say it was time for her to go to bed. It still bothers me that she didn’t get to see the after of all those drug addicts. Why watch if you don’t get a chance to see the after? Couldn’t she stay up past her bedtime just one night a week? (As a side note: Lisa was a pretty great roommate. My only complaints about her are that she wouldn’t watch the end of Intervention with me and she had the willpower to eat only one cookie per day out of a huge bag in the freezer.)

Families impacted by dementia are often caught up in the before-and-after. There are the years before dementia. Then there’s the after. Everyone with dementia is different, and dementia affects everyone in a different way. But there’s no doubt that the after is not the same as the before. (A person with Alzheimer’s once said to me, “I’m still me but I’m a different me.”)

When I meet someone with dementia that has progressed past the earlier stages, I notice that their family often needs to tell me about the before. Maybe she used to be a successful real estate agent who could sell any house in a week. Maybe he was a teacher who touched a thousand lives. Maybe he was a cop or a firefighter who selflessly served his community. Maybe she made the absolute best apple pies on the face of the earth.

And I always listen when they tell me about the before. There is value in knowing about the before. It helps us to connect with an individual with dementia when we know where they’ve been, but I feel like the family is sometimes telling us this for a different reason. They are telling us about the before because the after isn’t enough. They want us to understand that this person is more than what we see in front of us.

I once met a woman with Alzheimer’s who had been a fantastic golfer. She and her husband traveled around the country playing in golf tournaments. Her family told me that she had been incredibly competitive…to the point where she would trash talk other female golfers. Her kids told me that she didn’t make a lot of friends on the golf course, but she won a lot of huge trophies which now decorated her room at the memory care community as reminder of her before. She once told an employee that she won all the trophies for having the largest cow at the state fair. Obviously, they didn’t hold the same meaning to her that they did to her family. They were a before thing. She was in the after.

As her Alzheimer’s progressed, she could no longer go out and play nine holes of golf. Her kids started taking her to the driving range until she was unable to do that. After she moved into memory care, a creative staff member went to Walmart and bought a few items so they could set up a mini-golf course in the hallway. The woman lit up like the staff had not seen before. The ball never went in the hole, but she would putt up and down the hallway for hours.

The staff expected her family to be excited when they arrived and saw how much fun she was having. They were not excited. In fact, they were angry and saddened. They thought it was demeaning that a woman who had once been a competitive golfer was now aimlessly pushing a wiffle ball up and down the hallway with a plastic golf club. They were caught up in comparing the before to the after.

I realized recently that my love of the before-and-after does not extend to working with individuals with dementia. It’s not that I don’t care about the before. It’s fun to hear about a person’s past, and the before holds some keys to what might work when you try to improve the qualify of life for someone with dementia. Most importantly, no one wants their life to be forgotten. We want to know that people will remember what we did and how we did it. We want to know that what we’ve done has been meaningful and worthy of remembering–especially if don’t remember it ourselves.

Although we should remember the before, we also need to let go of it. If we don’t let go of the before, we can’t appreciate the after. This is easier for a professional caregiver than a family caregiver. Professional caregivers don’t have a before in their mind when they work with someone who has dementia. Family caregivers often can’t get the before out of their mind.

I have recently realized that I must not be the only person who enjoys TV shows based on the before-and-after concept. There’s Restaurant: Impossible, Biggest Loser, Extreme Weight Loss, Flea Market Flip….You can probably name many more if you think about.
But there is no before-and-after reality TV show about Dementialand. I’m not sure how many people would tune in. When the after isn’t always bright and shiny, sometimes the show loses its appeal.

Limitations in Dementialand (and Comments on Why I Am Not a Nashville Recording Artist)

When I was growing up, my parents told me I could be whatever I wanted to be. I could do whatever I wanted to do. They said that the sky was the limit. I should aim high and I could accomplish anything in the entire world.

MY PARENTS WERE LIARS.

I cannot accomplish anything in the entire world.

For instance, I’d love to tour and sing with a band. As I child, I spent a lot of time singing in front of the mirror to my favorite tapes (yes, tapes) using a remote control as a microphone. As time went on, it become apparent that my dream of singing with a band would not come true.

I have twice been accused of mocking the national anthem. In my defense, I was just singing it along with a group. However, people have actually thought I was making fun of our country because my rendition of it was so awful. Now I always lip sync the national anthem. It’s just the best way for me to show respect for our country.

Despite being voice-challenged, I love karaoke. In my early 20s, I sang karaoke with a friend at a bar in Des Moines called Miss Kitty’s. After our rendition of “Should’ve Been a Cowboy” by Toby Keith, we walked back to our table. My boyfriend at the time said to my friend, “You sounded really good.” Then he looked at me awkwardly and took a long pause. He finally said, “Elaine, you looked kinda cute up there.”

I won’t ever tour and sing with a band. There will be no record deal for me. I think I started the long journey toward acceptance of this when I hit 30, although every once in a while I relive that childhood fantasy I had to be Reba McEntire and sing “Fancy” to a packed crowd. (By the way, it was only a couple years ago that I realized “Fancy” was about prostitution. I just thought it was about a girl heading off to the big city to grow as a person.)

We tell our kids they can do whatever they want in life. We tell them that they can be whoever they want. And I really think we are all capable of being successful, but we need to pick goals that fit with our strengths. We have to know ourselves, and that means knowing what we are good at–and what we aren’t good it. We gotta figure out what we can do and what we can’t do. Success is about hard work and determination. It’s also about “fit.”

I met a wonderful woman who volunteered for many years at a hospital’s gift shop. The hospital staff loved visiting with her, and she enjoyed helping hospital visitors pick out gifts for friends and family. After being diagnosed with Alzheimer’s, she struggled to run the cash register. A few times she made errors in counting cash at the end of her shift. It was time for the volunteer coordinator to tell her that she just wasn’t able to volunteer at the gift shop anymore. It broke both of their hearts.

To her credit, the volunteer coordinator told her that she didn’t want to lose such a valuable member of their team. They had a long conversation and another plan was put in place. The woman would volunteer for the gift shop in a different way. She would knit scarves, hats, and mittens. Then her husband would deliver her work to the gift shop to be sold. All proceeds would go to the hospital’s pediatric cancer unit.

No matter how determined that woman had been to keep running the cash register at the gift shop, it just wasn’t a fit for her any longer. And, to be truthful, there may be a time in her future when knitting for charity isn’t a fit for her. It’s not a matter of strength or will. Our skills and capabilities change. That’s true for people with dementia, and it’s true for the rest of us.

The challenge is accepting those limitations and finding goals that make the most of present abilities. We all struggle to accept our limitations. In other words, sometimes we need to let go. We need to let go of what we can’t do in order to fully appreciate what we can do. And that’s not easy. There are times we need to push hard to pursue our dreams, and there are times when we need to realize that we could make more of a difference in this world if we put our talents toward a different dream. However, sometimes accepting our limitations and letting go means that we have make uncomfortable admissions to ourselves. It might mean we have to admit that we’re not good enough at biology to go to med school, that we aren’t genetically made to run a marathon in under three hours, or that our Alzheimer’s disease is progressing and there’s nothing we can do to stop this.

With dementia it may be more of a struggle to accept limitations because abilities change quickly and the disease itself may make it difficult to have insight about one’s functioning. Someone with dementia may also forget their limitations. They may forget they can’t drive or forget they no longer go to work everyday.

If I’m being honest, I sometimes forget my limitations as well. About once a year, I decided I’m going to sing karaoke. I’m reminded very quickly of why I am a college professor and not a music sensation. And it’s a good way to affirm that I’ve made some wise choices along my career path. Thank goodness I didn’t move to Nashville when I was 18 like my heart was telling me to.

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

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.

But When Are You Supposed to Grieve in Dementialand?

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.

Home in Dementialand

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)

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 of 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.

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.