Lessons Learned From Writing About Dementialand for Two Years

Dementia is a tragedy, a comedy, and a love story all at once. The comments and emails I get from people range from sad, to funny, to heartwarming. To those who have started off a message to me with “I shouldn’t find this funny but….,” it is okay that you find it funny.

It’s hard for me to believe, but I’ve been writing this blog for almost two years now. This is my 125th post. Some good; some not as good; some fairly mediocre at best.

This adventure has been a far greater learning experience for me than for any of my readers.

Here are some things I’ve learned:

  1. I can’t write a blog post before 9 pm. I just…can’t. I’ve tried and nothing happens. The only exception occurs if I am at a coffee shop.
  2. I am better writer with exactly one glass of wine. One glass makes me more productive, but two glasses makes me fall asleep. (And, for the record, red gives me acid reflux.)
  3. I’m a writer. When I was a kid, I said I wanted to be a writer when I grew up. I even had a pen name, Keisha Wrippen (inspired by the actor, Keisha Pulliam who played Rudy on The Cosby Show). I wrote a series of books about the Kit family. They either had 7 or 17 kids. As a child, I loved to write. As a grown up, I love to write. Writing may not be my full-time job, and I may not make a cent off of this blog, but I’m a writer. Maybe I have been since I started that series on the Kits.
  4. My mom doesn’t like it when I use the word “crap,” as in “what a bunch of crap,” in my blog. I do it anyway because I’m a rebel.
  5. People are nice. I cannot tell you how much those of you who have reached out to me with a compliment or an interesting anecdote mean to me. I appreciate when you let me know that you relate to something I wrote. From the bottom of my heart, thank you. Connecting with all of you has been the highlight of writing this blog. (And a special shout out to those of you who subscribe via email. I am proud that you let me clog up your inbox along with those Nigerian princes.)
  6. People are not nice. I am not referring to most people, fortunately. Really, I think most people are nice, but I have had a few not-so-nice people write not-so-nice things in the comments of my blog. They are usually not directed at me. They are typically negative  and derogatory comments about people with dementia and/or older adults. I don’t “approve” these comments, so you can’t see them. For the record, I won’t “approve” them in the future, so don’t waste your time. If you are going to spread negativity, you’re going to have to do it elsewhere.
  7. Dementia is a tragedy, a comedy, and a love story all at once. The comments and emails I get from people range from sad, to funny, to heartwarming. To those who have started off a message to me with “I shouldn’t find this funny but….,” it is okay that you find it funny.
  8. On a related note, families impacted by dementia amaze me with their humor. They can find humor in the most challenging situations, and they need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.
  9. You can get Facebook messages from people you aren’t friends with on Facebook, but they seem to end up somewhere beyond the normal Facebook realm. I just discovered about 25 Facebook messages that readers have sent me over the past couple of years. I apologize for not responding. I wasn’t blowing you off. I still have a lot of learn about the intricacies of social media.
  10. Writing makes me look at the world differently. Instead of thinking a situation has gone poorly or feeling that something is futile, I ask myself what I have learned that I can share with my readers. Realizing that there is a lesson to be learned or even a conversation to be started has made me look at the world with a bit less negativity and more of an eye toward progress.
  11. People with dementia are pretty amazing. Many of you write insightful responses to my blog in the comments, and some of you have your own writing outlets where you express your experiences and ideas. I want you to know that I appreciate this. It’s not easy to put yourself out there when you have a dementia. You are brave, and I cannot thank you enough for teaching me. Your voice will always be stronger than mine when it comes to educating people about dementia. Special thank you to Melanie and Lisa, who have courageously put a face on younger-onset dementia. When I think of the reasons we need to continue to do research on dementia, you and your families are at the top of my list.
  12. I need to stop making assumptions. There are so many times when I size up a situation and think someone is going to be struggling, and they’re okay. Sometimes I think a certain situation is going to be difficult for a caregiver, and they tell me it really wasn’t that bad. On the other hand, I sometimes don’t think much about a situation and realize later how difficult it was for a family. I don’t know unless I ask. We are diverse human beings. We interpret the world differently. Sometimes I try to empathize with a person, but what I’m really doing its projecting how I think I would feel onto them–but they are not me. That’s not really empathizing. It’s assuming.
  13. Reality isn’t as important as connection. If there’s a lesson I’ve tried to convey repeatedly, it can be summed up by that phrase. As I write about Dementialand, visit Dementialand, and talk about Dementialand, I am pleasantly surprised at how people can connect in a positive way despite not sharing a perception of their relationship and the world around them. I could write pages of transcripts of conversations that would make no sense to outsiders. The sense comes from those of us who choose to connect with people with dementia rather than correct them. I’ve noticed that ironically sometimes those with dementia are choosing to do their same in their interactions with us. Sometimes reality isn’t all it’s cracked up to be. We can see the world differently and still connect…I think there’s a lesson there in this age of America.

So that’s it. Or maybe that’s not it–because this is only a small portion of what I’ve learned.

See you in 2017!

Happy Holidays from Dementialand (aka I Wish You Survival With Some Moments of Joy Thrown In)

I wasn’t going to write a post this week. I’m on holiday break from the university, and I thought I’d take a holiday break from writing as well.

Yet I’m awake late into this Sunday night and rather than watch more reality TV or spend more money on Amazon.com, here I am with my laptop sitting in bed.

And I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.

I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.

The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.

Recently I’ve heard the following statements from family members of those with dementia:

“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”

“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”

“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”

“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”

“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”

“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”

If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.

It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.

I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.

The people who cheerfully work at the nursing home on Christmas day.

The neighbor who understands you are overwhelmed and shovels your driveway.

The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.

The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)

The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.

If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.

 

And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.

They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)

I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.

This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horrible wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgement here, folks.

Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.

 

 

What You See in Dementialand

This is the fifth of a series of five posts about the senses in Dementialand.

Today we focus on sight.

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when a woman with Alzheimer’s suddenly became very upset.

“Who is watching the children?” she kept asking me. “They are going to get hurt.”

I wasn’t sure what children she was referring to, but I tried to assure her that they were safe. She wasn’t having it.

“They are going to hit each other with that stick and no one will know,” she said. She was becoming agitated, so a staff member removed her from the activity. As she was walking down the hallway, she kept looking back at me and shouting about how I needed to care more about children.

As I wrapped up the activity about fifteen minutes later, I packed up my equipment and turned around to leave. I realized that there was a picture on the wall behind me. The picture was a large framed image of several small children playing baseball. One of the children was holding a bat.

At that point, I realized that this woman’s concern was valid based on how she was viewing the world. It was likely that she saw the picture behind me and thought it was a window. She thought there were children outside of that window playing baseball with no supervision. She saw the child holding a bat (or a “stick”) and was concerned that they were going to get hurt.

Instead of listening to her concern about the children, we had dismissed her and removed her from the situation. No wonder she was frustrated.

Sometimes people with dementia confuse pictures, especially larger ones, for real-life scenes or windows. I also find that they may misinterpret coat racks for people. I was recently asked if the man in the corner would be joining us for lunch. I looked to the corner to see a coat rack with a single coat hanging on it and a hat sitting on top. I told my friend with dementia that I thought that man had already eaten lunch.

Changes in the visual-perceptual system can impact eating. A person with dementia may not see mashed potatoes on a white plate. I know a woman with dementia who refused to eat a piece of lasagna (her favorite food) because she swore there were fleas on top of it. They were actually tiny oregano flakes, but her family could not convince her. She only ate it when they took away that piece and returned with a piece of lasagna with the oregano scraped off.

At a caregiving seminar recently, a woman told me about her husband who ended up in the hospital with dehydration. He had complained about thirst, but when she brought him water he didn’t drink it. She realized later that he couldn’t recognize that there was water in the glass, so he thought it was empty. Her solution to the problem? She added a very small amount of Crystal Light to the water so he could see the fluid in the glass.

Depth perception often becomes an issue with dementia. Again, it’s not that there’s necessarily a problem with the eyes. It’s that the brain struggles to make sense of what the eyes see. Compromised depth perception is often problematic when it comes to flooring. Rugs may look like holes in the floor. Someone might refuse to step onto a blue floor because they believe it’s water. A change in flooring surface may look like a large drop-off. Shiny flooring may appear wet or slippery. Sometimes people have a problem telling where the floor ends and wall begins. It can be helpful to paint the baseboards a contrasting color.

People with dementia might struggle with visual distractions. Keep in mind that the dementia brain has to work hard to interpret visual data. Trying to interpret too much at a time can lead to irritability and agitation. As strange as it might sound, someone might have difficulty focusing on the TV if there is a loud patterned wallpaper on the wall behind the TV. Visual “noise” can keep a person with dementia from being able to focus on what is important visual information. (And you can tell how I feel about wallpaper by my description of it as visual “noise.” On a related note, it takes several weeks to destroy that visual “noise” with chemicals and razor blades when you move into a house whose previous owners obviously found wallpaper quite pleasing.)

It’s important to remember that people are visual data. We know that sometimes people with dementia forget their loved ones or mistake them for others. They don’t recognize their daughter. Maybe they think their grandson is their son. Perhaps they think a nursing home staff member is their mother. Of course, much of this is due to compromised memory.

Sometimes, however, a person with dementia simply needs more time to process the visual image of a person. Let’s say you visit your grandma who has Alzheimer’s. Walk into the room. And then stop about four feet in front her. Just pause. Allow her to process you visually as a still (not moving) image. This gives her the best opportunity to recognize you, and–even if she doesn’t recognize you–she is less anxious as you move toward her. Just like you should give someone with dementia plenty of time to process a question after you ask it, you should give them plenty of time to process an image you put in front of them.

The more I work with people with dementia, the more I realize that their behavior makes sense if I can figure out how they see the world. It’s just that figuring out how they see the world sometimes takes a bit of detective work.

 

What You Hear in Dementialand

This is the fourth in a five part series about dementia and the senses.

Today we will focus on hearing.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and the same examples–except in a much louder voice.

Here is my weakness: If someone doesn’t understand what I’m saying, I just say it again…in a louder voice.

I tend to think that my original explanation was so clear that the only reason the other person would need clarification is because they have a hearing problem. If you are thinking that I overestimate my own eloquence, you may have a point.

Chances are that I used a loud voice in the first place (no one has ever complained that my voice isn’t loud enough), and chances are that the person doesn’t have a hearing difficulty. It’s likely that my explanation isn’t resonating with them for some other reason. Yet, I just repeat the same explanation that doesn’t resonate–but louder. It’s not helpful.

My weakness tends to extend beyond explaining concepts to college students. If something I say doesn’t make sense to my husband, I’ll just say it louder to clarify. I know it’s not productive, but I do it anyway. If I’m at a work meeting and make a statement that results in quizzical looks from my colleagues, I usually just repeat the statement again. And I step up the volume, of course.

Unfortunately, I do the same thing to my friends with dementia. If I ask someone with dementia a question and don’t get a response when I expect one, I figure they didn’t hear me, so I ask again in the exact same way–except louder. And, I will add, that my louder voice probably also conveys irritation even if that’s not my intention.

People with dementia may have hearing difficulties due to age or other factors, but dementia itself doesn’t impact your ears. However, it does impact how you interpret auditory data.

Sometimes I forget that people with dementia need a bit longer to process any question I ask. I have to force myself to silently count to ten as I wait for a response. After ten seconds, I force myself to rephrase (not just repeat) the question. Maybe I use more hand motions or pointing. Maybe I use a different word for an object. I change something…something other than the volume.

People with dementia often have trouble focusing on the important auditory information and blocking out the rest. While I may be able to have a conversation with the TV turned on, someone with dementia typically finds it easier to focus on our conversation with the TV turned off. When a person with dementia is struggling to have a conversation with me, I look for extraneous auditory data that can be eliminated. Can I shut the door so we can’t hear the conversation of the people in another room? Can I close a window so the noise of the cars driving down the street isn’t a distraction?  Can I turn off the washing machine temporarily so my voice doesn’t have to compete with the swooshing noise?

It’s not that the person with dementia can’t hear over these other sounds. This isn’t a matter of volume. It’s that their brain has to work hard to distinguish important auditory data from unimportant auditory data. They may become tired or overwhelmed after trying to do this for a short time, and we may perceive this as disinterest.

Once I was sitting in a nursing home lounge talking to a man with Alzheimer’s disease. I was struggling to get a response from him. I was likely repeating my questions and increasing my volume. As my attempts at conversation were failing, there was very faint knock from down the hallway. It was a visitor giving a quick tap to a resident’s door before entering their room. I could barely hear the knock and probably wouldn’t have noticed it had the man I was visiting with not responded to the noise.

“Come in! It ain’t locked!” he yelled.

If he could hear that noise, his hearing was obviously not an issue. I closed my eyes for a second and did a quick survey of auditory information.

In the distance, I heard some chatter at the nurses’ station. There was some incessant beeping from residents who had pressed their call buttons for assistance. The window air conditioner in the lounge was making a rattling noise. I could hear the shuffle of nurses’ aides hustling from room to room, and a couple of residents across the lounge seemed to be having a conversation about the weather.

A few moments ago I hadn’t been hearing any of this noise. Sure, I was taking in the auditory data, but my brain was disregarding it in favor of focusing on the conversation I was having. This wasn’t intentional on my part. I did not have to plan to block out all of these extraneous sounds. My brain did that for me automatically.

My conversation partner, who had dementia, was not so fortunate. It’s not that he wasn’t trying to be engaged in our conversation. It’s not that he didn’t care about what I was saying. It was that his mind was not perceiving what I was saying to be any more important than the slightly obnoxious hum of the air conditioning unit.

When we enter Dementialand, we need to set individuals with dementia up for success. In this particular situation, I had not done that. I had asked this man to have a conversation with me in an environment in that was not conducive to the dementia brain. Increasing my volume was not going to help; in fact, a louder voice would likely convey an intensity that would discourage rather than encourage a positive response.

Once I was talking to a woman who had vascular dementia after a series of small strokes. I asked her a question. When she didn’t respond I went to my default next step…I asked her again…only louder. Much louder.

This time she made eye contact with me. She motioned for me to come closer. I figured her voice was weak, and she wanted to make sure I could hear her responses. I put my ear close to her mouth.

“I can hear you!” she yelled in my ear. “I’m not deaf, honey! Stop shouting!”

I guess I deserved that. Apparently this woman would agree with my husband’s assessment of my weakness.

In life…in relationships…and in Dementialand…

Louder is seldom better.

And I’m a work in progress.

Mothers’ Day in Dementialand (aka What You Do Every Day Matters More Than What You Do Once in a While)

One of my favorite authors is Gretchen Rubin, who wrote The Happiness Project, a book that changed the way I look at habits and happiness. A quote from her book that stuck with me is: What you do every day matters more than what you do once in a while.

It’s a pretty simple concept, but it’s helped me to change my life in subtle but meaningful ways. I have to create a daily life that reflects my goals and values. For instance, I have to be kind to the people I come in contact with each day to be a kind person. I can’t just go on a mission trip to a third world country once a year and call it good. My priorities have to be shown in my actions each day, not just once in a while, or they really aren’t my priorities.

Last week I ran into an acquaintance, Cindy, at the rec center where I teach fitness classes. Cindy is recently retired and in her 60’s. In the summer, she’s an avid outdoor cyclist. When it’s cold or rainy, she comes inside the gym to ride a spin bike.

Her mom, Edna, is in the end stage of Alzheimer’s and resides in a local nursing home. Since her retirement, Cindy typically stops in at the nursing home at least once a day. When the weather allows, she rides her bike.

When I see Cindy, I usually ask how Edna is doing. I feel like Cindy is grateful for the question but struggles to answer it. She feels like Edna is getting good care but at this point doesn’t have much of a quality of life.

“Mom had several good years after her diagnosis,” Cindy has said in the past. “But those good years are over.”

Now Edna stays in bed most of the day. Sometimes the staff puts her in a wheelchair, but she slumps over. She doesn’t speak. She hasn’t recognized anyone for a while now. It’s a struggle to get her to eat. She’s incontinent. She has what Cindy refers to as “glaze eyes.” It’s like she’s looking through people rather than at them. Her immune system doesn’t function well (yes, this is a symptom of end stage Alzheimer’s) so she’s constantly battling urinary tract infections and infected pressure sores.

When I saw Cindy last week at the rec center, she blurted out, “I think I’m a bad person. I’m not going to visit Mom on Mothers’ Day.”

Cindy told me that her own daughter and granddaughters live about four hours away. She’d be headed to visit them on Mothers’ Day, and there just wouldn’t be time to visit Edna.

Cindy had mentioned to a few people that she wouldn’t be going to see her mother at the nursing home on Mothers’ Day. They asked if Edna would have other visitors. Nope. She would have no visitors. Cindy felt like these people responded as if she was a horrible monster.

“So I’m leaving my poor mom alone at the nursing home on Mothers’ Day,” she said as her eyes welled up with tears.

It didn’t matter that Edna would not know it was Mothers’ Day or even that she was a mother. It didn’t matter that Edna wouldn’t acknowledge Cindy when she showed up or that Edna wasn’t capable of having a conversation. It didn’t matter than Edna might even be asleep for the entire time her daughter was there.

Not visiting your mother at the nursing home on Mothers’ Day still makes you feel like a loser.

And Cindy…is anything but a loser as a daughter. She invited Edna to move in with her and her own husband after diagnosis. When Edna’s care become too much for them, she researched nursing homes and found the absolute best option for care. It was a rare day when she didn’t stop by at least once, even after her mother stopped recognizing her. She made a special effort to thank the staff when they went out of their way to care for Edna. She even took her mom’s laundry home once a week and did it herself.

As Cindy was telling me about how she made the difficult decision to leave town to see her daughter and granddaughter for Mothers’ Day, my mind wandered to the people I’ve met who do visit their moms with dementia at the nursing home on Mothers’ Day–but rarely on other days. They go on Mothers’ Day because it’s Mothers’ Day and that’s what you do. Yet Mothers’ Day is only one day. Where are they the rest of the time?

I can’t be a jerk to my mom 364 days a year and make up for it by taking her out for an expensive Mothers’ Day brunch and buying her flowers. It doesn’t work that way for any of us, whether our mothers are well or sick.

I’m not saying Mothers’ Day isn’t important. I am saying that what you do most days is more important than what you do one day, even if that day has a special label.

One of my favorite authors is Gretchen Rubin, who wrote The Happiness Project, a book that changed the way I look at habits and happiness. A quote from her book that stuck with me is: What you do every day matters more than what you do once in a while.

It’s a pretty simple concept, but it’s helped me to change my life in subtle but meaningful ways. I have to create a daily life that reflects my goals and values. For instance, I have to be kind to the people I come in contact with each day to be a kind person. I can’t just go on a mission trip to a third world country once a year and call it good. My priorities have to be shown in my actions each day, not just once in a while, or they really aren’t my priorities.

I think about this in terms of marriage. If you’re not nice to your spouse every day, you can’t save your marriage by going on a romantic trip once in a while.

I think about it in terms of health and fitness. It’s better to consistently incorporate more walking into your daily life than go for an occasional run.

Your daily routine matters. Your life is made up of your daily routines. Cindy’s routine tells me that her mother is a priority to her…that she’s a caring person…that she’s doing the best she can.

I fumbled to explain my thinking to Cindy.

Finally, I asked her what advice she would give her daughter if she were in a similar situation on Mothers’ Day.

“Oh, I’d be angry if my daughter chose sitting in a boring nursing home on Mothers’ Day when she could be playing with her beautiful granddaughters,” she said.

As we parted ways, I said awkwardly, “Have a happy Mothers’ Day. You’re not a bad person!” (The term awkward is an understatement in this case.)

I have no doubt that Cindy was at the nursing home Saturday. I have no doubt she will be there today.

I hope she has found peace with not being there yesterday.

 

 

Toilet Paper in Dementialand (aka Why Christmas Comes Faster Each Year)

As a kid, I thought Christmas would never come. I’d want something–a toy, a musical instrument, a jersey (because that’s all I wore when I was a kid)–and my parents would tell me I could have it for Christmas. Yet Christmas was an eternity away. And by an eternity, I mean about four months.

My birthday was the same way. I was five and wanted to be six. I was eleven and wanted to be twelve. I was fifteen and wanted to be sixteen. And I never thought that day would come.

As an adult, I find the opposite is true. I had a birthday recently. A few weeks before my birthday, my husband asked for gift ideas. The question took me by surprise because it seemed like I had just had a birthday. I say this with neither dread nor excitement, simply as an observation. My birthday comes around once a year, just as it always has. There was exactly one year between my ninth and tenth birthdays. Not coincidentally, there was the same amount of time between my two most recent birthdays. How come birthdays seemed so far apart when I was a kid?

And Christmas…I feel like it’s Christmas season about 80% of the year. In January we put the tree in its box (some years we even take off the ornaments) and store it in the basement. Then comes the cycle again–Halloween, Thanksgiving, Christmas–in the blink of an eye.

To be honest, it scares me. I work with older people, so I accept that I will someday grow old. More than that, I hope that I grow old because it’s a privilege that many people don’t get to experience. I don’t take it for granted. It’s just that life seems to be on fast forward. Sometimes I want to pause it or at least experience it in slow motion. I’m in a good place. I like it here.

In one of my first years of college teaching, a student in one of my classes had a seizure. I can’t say I panicked. In fact, I knew exactly what I needed to do, and I did it very confidently.

I said to my class, “I’ll be right back. I’m going to get a grown up.” I ran out of the room and found another faculty member who I apparently perceived as an actual grown up. For the record, I was 28. That’s the thing about how fast time goes…you forget that you’re older than you used to be. You forget that you’re the grown up.

Recently I had a conversation with my friend Jen about adulthood. She’s in her 20’s. I’m in my 30’s. Both of us feel like we are faking adulthood on some level. We don’t know if we’ll ever feel like adults, or maybe we just had the wrong idea about what it is to be a full-fledged grown up. You blink, and you’re 25, then 30, then 35…and I just turned 38. I’m not complaining about getting older; I just don’t know where the time went.

While visiting a nursing home, I got into a conversation about how time slips away faster and faster as I get older. (And I know that I am by no means “old.”) I was talking to a man in his 80’s who has dementia. I was telling him a story about how I once registered for a 10k and said I was 32 when I was actually 34.

“Life is like a roll of toilet paper,” he said. For a moment, I thought he was trying to quote Forrest Gump but was confused. I was wrong. He knew exactly what he was saying. I realized later that this is something Andy Rooney said as well.

He went on to explain that a toilet paper roll spins faster when there is less toilet paper remaining on the roll. It made sense to me. When the roll is full, it spins slowly. Yet when less remains on the roll, it begins to spin faster and faster. He explained this using overly dramatic hand motions–so dramatic I worried he was going to fall out of his chair.

“I thought my roll was on its last spin a couple years ago, but it kept on spinning,” he told me dramatically. “Now I don’t wanna blink because I’ll be dead before my eyes open.”

I had a few students with me, and they laughed awkwardly. He went on to explain something that I’ve thought for a long time haven’t been able to put into words. He told us that he was tired of people (most of whom are much younger than he is) complaining about getting older. He said that he was going to scream if he heard one more person turning 40 complain about their birthday.

“You’re 40 and you’re here. Be happy for that. You could be dead,” he said. When he said the word “dead,” he put his hands up to his neck, as if he were croaking. He could have been more eloquent, but I appreciated his bluntness. “Time flies. Don’t waste it by bitching that you’re 30, you’re 40, you’re 50. I’m 85 and I’m sitting here. I’m probably gonna drop dead before the evening news but at least I’m here now. I’m lucky.”

My students, again, laughed awkwardly, but they were listening. They seem fascinated by his monologue. He talked more about life….about how he refuses to complain about his aches and pains because aches and pains are better than being dead, about how he can’t bitch about using a cane when he sees people younger than he is in wheelchairs, and about how he thinks it’s ridiculous that a person can join AARP at 50–when they are “just a kid.” He thinks you shouldn’t be eligible for AARP until at least 70. He also talked about how his mom died 50 years ago, but he still sometimes waits for her to scold him when he says a bad word.

He told us that he can’t do everything. He can’t drive a car. He can’t play tennis. He can’t golf. Then he stopped to point out that he never could golf. He paused while he waited for us to laugh. We obliged, although I’m not sure my students got the joke.

On the way back to campus, a couple students and I had a philosophical conversation about life. It’s the type of conversation I always thought I’d have with students as a college professor but seldom happens except in the movies. Somehow, on our short drive across town, we talked about how our youth-centered society makes us dread aging and how we hate the term anti-aging…because they only way to stop aging is…well…you get where I’m going with this.

As we pulled into the parking lot, one of my students said, “That guy at the nursing home was kinda like Yoda. He was really wise and made me think.”

There is something about one of my college students comparing this old guy with dementia to Yoda that made my day–or my week–or maybe my whole teaching career. It was a good day.

I was talking to a colleague recently who said she hated “everything about growing older.” She complained about the wrinkles around her eyes, and she talked about how she can only eat “about 10 calories” a day without gaining weight.

I told her about my friend with dementia and his analogy about toilet paper. I told her what he had said about not complaining about aging—because you could be dead. I expected her to have an Oprah-style “aha” moment much like my students and I did during our conversation about how life is life a roll of toilet paper. She stared at me. She wasn’t buying what I was selling.

“Stop it with that crap. You’re such a gerontologist,” she said.

I guess people have to learn to accept getting older on their own terms. And I’m no Yoda.

Friendship Inside (and Outside) Dementialand

A wonderful former student of mine now works at a memory care community. A woman with Alzheimer’s, Angela, moved into the facility. To the rest of the world, Angela lost her husband to cancer about ten years ago. In Angela’s world, her husband had past away last week.

As you might expect with someone who lost the love of her life last week, she spent a lot of time crying. When asked to participate in activities, she said she wasn’t interested–because her husband passed away last week. She wouldn’t eat much. As with many individuals in grief, she had no appetite.

Some employees tried to convince Angela that her husband had been gone for ten years rather than a week. Instead of validating her feelings, the staff was telling her that her sadness wasn’t real. This only made her more upset.

After a few months, a new woman, Lou, moved into the memory care community. Lou also had Alzheimer’s. On her first day there, she found Angela crying in her room. Lou walked in, sat down, and asked Angela if she was okay. Angela explained that her husband had passed away last week. Lou gave her a hug. And they sat together most of the day. Angela talked about her life with her husband…their homes, their travels, their kids. Lou listened as someone does when their friend is struggling. She had no place to be and nothing to do. Her only focus was Angela.

The next day was nearly an exact replay of the day before. And so was the next day. And the next day. The staff was relieved that Angela had a friend. Lou’s family commented that Lou seemed to have more of a sense of purpose than she had in a long time. She felt needed in a way that she hadn’t felt needed since starting to show dementia symptoms. Sometimes life brings you the perfect friend at exactly the right time.

The staff assumed that Lou believed that Angela’s husband had passed away last week. While another person might tire of hearing the same stories about Angela’s husband every single day, Lou was hearing them for the first time. They thought that this was the value of their friendship–that Lou was a part of Angela’s reality. When another person might tire of expressing their sympathy day after day after day, Lou was doing it for the first time–every single day.

Or so they thought…

After about a month of friendship, Lou was on her way to Angela’s room when she told my former student, “I have to go see my friend. She thinks she lost her husband last week but he’s really been gone a long time. I feel so bad for the poor thing so I let her tell me the same stories day after day.”

“You know that her husband didn’t die last week?” my former student asked.

“Well, of course,” said Lou. “But I just keep showing up. It’s what friends do.”

Friends just keep showing up.

When I think of my own friends, I realize they are a lot like Lou. They keep showing up for me. I may not have dementia, but they do listen to me talk about the same issues over and over…and over. They are the themes of my life. And on this life journey, I realize that many of my issues are things that won’t ever truly be solved. They are issues that I must learn to cope with…sometimes by venting to my friends. And (my apologies, friends) I am sometimes like an Ipod on repeat, playing the same song continuously. When I consider the last ten years, I realize that I have the same redundant struggles. They just manifest themselves in different ways as my life changes. And yet my friends keep showing up. I do the same for them.

We are all like Angela in a way. We struggle, and we voice those struggles to those closest to us in an effort to be supported. It’s not a one time deal. Some of us complain about our jobs or our relationships. Some of us need to vent about parenting. We have persistent insecurities, weaknesses, and pet peeves. These are not things that we tell our friends about once and never again. They are continuous topics of conversation. If we didn’t care about our friends, we wouldn’t have the same conversations, with no resolutions, again and again. But we do it–because it’s what friends do.

Lou reminded me of something else that friends do. Lou didn’t try to tell Angela that her husband passed away ten years ago. She accepted Angela’s grief for what it was, and she never questioned whether Angela should feel sad or not. Angela felt sad, and Lou responded to Angela’s sadness. That’s all there was to it. We don’t judge whether our friends’ reasons for being upset are valid. That’s not our job. If our friend is upset, it’s our job to keep showing up…because that’s what friends do.

Maybe friendship inside Dementialand isn’t all that different from friendship outside Dementialand.