Why We Have to Let Go in Life and Dementialand

dementia

 

Letting go is the hardest thing.

And we have to do a lot of it throughout our lives.

We have to let go of things. Old clothes. Furniture. Appliances. Toys. If we didn’t let go of things, we’d all be hoarders. Letting of things isn’t as easy as it sounds, though, because things have meaning. Things remind us of people who are gone and times that have passed. Things remind us of moments, events, and milestones. Sometimes we are scared that getting rid of things means getting rid of memories. It doesn’t, of course, but tell that to someone as they are going through a loved one’s belongings after they’ve passed away. We attach emotionally to items that are tied to people, places, and times that were meaningful. That’s normal, but we can’t physically carry all of these items with us throughout our lives. We literally don’t have room. We have to let go of some of it.

We let go of our dreams. Sometimes, we have to let go of one dream to achieve another. We give up our goals to free up time and energy to seek out new goals. Sure, our parents and teachers told us to be persistent and to try, try, try again, but there’s a time to move on. (Case in point: A friend of mine was telling me about a guy she knows who wanted to be a rapper. This guy–who is now close to 40–still wants to be a rapper. He lives with his parents and waits for his break… Maybe it’s time to let go and pursue a new dream.)

Then we let go of people. Or we try to let go of people, anyway. We have to let go of people when we end romantic relationships. It’s not easy, even if we know the relationship isn’t working. When I was dumped and heartbroken in my early 20’s, my wise sage of a friend Lisa said something that has stuck with me. She told me, “Letting go of the wrong person means you’re one step closer to finding the right one.” I have repeated this to at least a dozen crying female college students in my office over the last nine years. Breaking up isn’t a failure. It’s progress, right?

We have to let go of friendships when they no longer serve us. It doesn’t mean we’re angry or upset. It just means that our time and emotional energy is best spent elsewhere. Looking back, I’ve clung to some close friendships in my life long after I should have let go. My mistake was thinking that if a friend brought something positive to my life at some point, they were meant to be a forever friend. I don’t think that anymore. Forever friends are amazing, but you’re only gonna get a handful–and that’s if you’re lucky. Other friends come and go, and those temporary friendships aren’t failures. You just have to know when to move on.

There’s a lot of letting go in Dementialand. We let go of people when they die, but all stages of dementia involve letting go. People with dementia let go of their jobs. They let go of their driver’s licenses. They let go of the roles and responsibilities that they played throughout their lives. One of my friends told me she had to let go of being a perfectionist when she was diagnosed with Alzheimer’s. Sometimes people with dementia let go gracefully, and sometimes they don’t. I can’t blame them to being angry and for fighting the inevitable. They have every right to be mad at dementia for what it has taken from them. Yet, somehow, they cannot allow that anger to take away what dementia has left behind.

I often use the phrase, “Let go of what was to enjoy what is.”

I usually say it in some overly pleasant, patronizing term, as if it’s easy to do. I usually say it as if it’s something that I do with grace. For the record, I am not good at letting go. It’s hard for me. And I’m not unique in that.

A friend of mine has a mother who is in her 80’s. Although her physical health is impressive for someone in her 80’s, she shows some symptoms of dementia. She has become more self-centered and isolated. She doesn’t want to leave her home, and she struggles to focus on a conversation.

My friend said to me, “I know my mom’s still here, but I have to let go of who she used to be. And I really liked who she was.”

I thought about this statement…It is important for her to let go of who her mom was. Letting go of the person her mom was can allow her to enjoy the person her mom is right now, in this moment. It’s okay to admit that some of her favorite things about her mom are gone. It’s okay to grieve for aspects of the relationship that are no longer possible while enjoying those parts of the relationship that are still possible.

Reminiscing about the past is great, but clinging to it only brings disappointment. People with dementia are not the same as they were ten years ago. To be fair, the rest of us aren’t either. We change. We struggle with our own changes. We struggle with seeing changes in our loved ones.

We struggle to let go of skills and abilities our loved ones used to have. We can’t accept that they can’t tie their shoes. They could do it a month ago. We don’t know why they can’t remember who we are all of the sudden. Maybe it’s because we colored our hair or lost a little bit of weight. We want to think they’ll know who we are next time we stop by. Sometimes we even argue, “Grandma, you know who I am. Think hard. I know you do.”

We struggle to let go of the activities our loved ones used to enjoy. I spoke at a support group over the holidays. A woman in the group told me how she’s finally let go of her husband’s love of going on long car rides out in Iowa farm country. It used to be their Sunday activity. Now, it just makes him anxious. He asks where they are, where they are going, when dinner is, when they will be home. After a couple months of this, she let it go. She wishes she’d let it go sooner, but she just couldn’t. He really used to love those Sunday drives.

In my experience, caregivers struggle to let go of control. You have to let go of the notion that you have any control over a disease like Alzheimer’s. You know what happens if you make all the right decisions regarding your loved one with Alzheimer’s? The Alzheimer’s gets worse. Sure, you can have an impact on quality of life, but you cannot stop the progress of the disease. Although this sounds like a negative statement, I find that many dementia caregivers find comfort in knowing that decline is not a result of any of their actions or lack of actions. I know one caregiver who repeats the phrase “I didn’t cause this, I can’t change it, and I can’t cure it” to herself before bed each night. It’s her way of letting go.

Life is about letting go. Sometimes, unfortunately, we have to let go before we feel the story is really finished. We can’t go back. It doesn’t matter if we want to. It doesn’t matter if the past was better than the present. All we’ve got is the present. Sometimes the present is bittersweet, but–as one of my friends with dementia recently reminded me–there is still sweet in bittersweet, even if sometimes it’s just a little bit of sweet. Otherwise it would just be bitter.

Happy Holidays from Dementialand (And What Clark Griswold Reminded Me About the Holiday Season)

alzheimer's, caregiving, dementia

Welcome to Dementialand is on hiatus until 2016.

In the meantime, I wish you tremendous holiday season. I’m not going to battle about language here. I accept well-wishes in any form. I’m not Jewish, but I’d rather you tell me Happy Hanukah with a warm smile than give me a sharp elbow or a middle finger during holiday shopping in the toy aisle. (On a related note, I really want to try matzo.)

Don’t forget to do something you enjoy over the next few weeks. Don’t forget to be nice to other people. Don’t forget to buy a couple of generic gifts for the awkward moment when someone presents you with a present…and you didn’t think to buy them anything.

And don’t forget that the holidays are not a competition. It is okay if your sugar cookies look like they were decorated by fourth graders. Own it. And, if you can’t cook, remember that someone has to volunteer to bring the red Solo cups to holiday gatherings. Show up with some adorable paper plates. Make it your thing. And if you don’t do that Elf on a Shelf deal, bless you. I still don’t understand it.

If you visit a nursing home this holiday season, take a few minutes to say hi to residents who might not have visitors. If it’s a tough visit, cry on the way home, not at the nursing home. If you have a loved one who is nearing the end of their life, don’t worry about making this the best holiday season ever. It probably won’t be, but try to smile and laugh as much as possible anyway. Don’t feel obligated to make it Lifetime movie sentimental. Just do the best you can. Trust me that it’s enough.

And if you’ve ever made a positive comment about my blog, if you’ve subscribed, if you’ve ever liked it on Facebook or shared it, or even if I’ve written something that you relate to and you’ve nodded knowingly, THANK YOU. From the bottom of my heart, THANK YOU. Writing this blog has been a journey for me, and I’m grateful for everyone who has been a part of that journey. You mean the world to me.

To those of you who have made negative comments or sent me critical emails, I’m gonna be the bigger person here and thank you as well. A part of this journey for me has been developing thicker skin. I’m getting there. Now I only spend one day obsessing about your critical (and sometimes mean) comments. If I think they are gonna keep me up at night, I take a Bendryl before I hit the hay. I used to focus on them for about a week. We are all works in progress, right?

Oh, and one more thing…When you catch your cat on the counter licking the turkey or your relatives arguing about Starbucks red cups/Donald Trump/gun control/gay marriage, remember that holiday horrors often make the best memories. I would not have watched National Lampoon’s Christmas Vacation twice in the last week if everything had gone right for poor Clark Griswold. I bet Clark and Cousin Eddie still laugh about that cat electrocuting itself by chewing on those Christmas lights.

See you in 2016.

Reflections on Mass Shootings, Good People of the World, and Dementialand

aging, alzheimer's, dementia

There was another mass shooting last Wednesday. Well, actually two mass shootings. One in Georgia and another in California.

I wish I could tell you that I was irrate when I first heard about the shootings. I wish I could tell you that I was sick to my stomach when I saw the news. The truth is…I wasn’t.

Maybe I’m a horrible and cold person. Perhaps I don’t care about other people–but I don’t think that’s the case. I think there’s another reason I had virtually no reaction to the shootings.

It’s a tolerance effect.

There are a lot of shootings in America. You can argue about why this is happening. You can fight about gun control. Sometimes I feel like there are so many of us who disagree on what we should do that nothing will change, but I’m not here to discuss any of that.

What we can agree on is that this happens too much. And that is exactly the reason that I didn’t have much of an emotional response.

A mass shooting? Just another day in America.

A couple weeks ago I had to go through an active shooter training at the university where I am faculty member. I guess it’s just something you do if you work at a university. To be honest, I didn’t think much of it.

I feel myself getting less and less (rather than more and more) appalled at each mass shooting. I’m ashamed to tell you that. Each and every shooting is absolutely despicable, disgusting, and appalling. It’s horrifying to me that I seem to be, in a sense, getting used to these shootings, even those that occur on college campuses similar to the one on which I spend quite a bit of my life.

On Wednesday night, I started thinking about how bothered I was that I wasn’t more upset about the shootings. And that’s when I got sad. I got sad that I seem to have hit a level of “acceptance” about mass violence.

I was upset at myself for not being more sensitive. I was upset because the world isn’t the place I want it to be. I was upset because, if I’m being honest, I don’t see things getting better any time soon.

Sometimes the most positive moments come just when you need them. Thursday was a pretty good day.

I took five college students with me to hang out at an adult day center for people with dementia and intellectual disabilities.

Sure, I work with a few college students who annoy me. I can’t lie. Some of them are entitled. Some of them aren’t always honest with me. And some of them are only out for themselves.

But a lot of them are pretty awesome. And these five college students? They are the reason I work as a college professor. They come with me to the adult day center because they want to–not because it will be a line on their resume (although it should be a line on their resume). Maybe they are going to ask me to write a letter of recommendation for them someday so they want to impress me, but that’s not why they come either. They come because they are good people and because they honestly, genuinely think it’s fun to spend time with those who have dementia and cognitive challenges.

Let me tell you about my students. One is a Psychology and Gerontology major who is looking for an internship with hospice in the spring. I was at a conference in November during the time we normally visit this group, and she led the activity–and thanked me for trusting her enough to give her the opportunity. Another (a rare guy in the Gerontology major) wants to someday administrate a nursing home. He happened to be wearing a sharp business suit because he had a presentation for a class later in the day. Our friends with dementia loved the suit. Another is a Social Work major with a Gerontology minor who might want to someday be a school counselor. She’s having trouble deciding what to do with her life because she loves everyone and everything. (I’ve told her several times that this is the best problem to have when it comes to career decision-making.)

I had two late additions to the group. I met one a couple of months ago because she works for university relations and wrote a story about our program for the university website. She has a grandpa with Alzheimer’s and was interested in the community service that we did. She happened to randomly email me the night before and I invited her to tag along. She brought a friend, who turned out to be absolutely delightful.

When we arrived, I stepped in to another room to say hi to a staff member. In about 30 seconds, I came back into the main area to find my college students had all struck up conversations with the participants. It was loud. Lots of people were talking about lots of stuff. Some of it made sense. Some of it didn’t. If I were a person who got a tear in my eye in moments of joy, I would’ve had a tear in my eye.

Here is what is fantastic…I don’t have to coach them to spread out and introduce themselves. They don’t clump together in a corner like kids at a middle school dance. They just start talking to people like they’ve known them for years. If people don’t respond verbally, they don’t care. They continue to interact with them. They roll with the punches.

So we sat around for 45 minutes about talked…about chinchillas and how they take dust baths (yes, that’s a thing), about what a pain it is when your roommate beats you to the bathroom in the morning (something that is common for both college students and adults with intellectual disabilities who live in group homes), about whether India is a state (a guy with dementia insisted it was and my students just went with it).

It wasn’t an earth-shattering afternoon by any stretch of the imagination. It was just a bunch of people in different stages of life with different abilities hanging out, talking, and doing a lot of laughing. Now that I think about it…and I really didn’t think about it until right now…we even had some ethnic and religious diversity. It reminded me that this world can be a pretty cool place.

That day something occurred to me. There are lots of people making a positive difference in our world. Most of us make a difference in small increments…a little bit at a time…just by being who we are. Think about it–you will likely make a positive difference to someone today. It will likely be a small thing, or maybe a bunch of small things, rather than a grand gesture. That’s how life works. It takes a lot of dedication and time (and some chance) to make the evening news as someone who makes the world a better place.

It takes a lot less dedication and time to make the evening news as someone who makes the world a more negative and scary place. It takes less than five minutes with an assault rifle.

 

The Happiness You Find in Dementialand

dementia

Theresa is a resident of a memory care community not far from the town where I live. She is about 70 and has Alzheimer’s disease. I’ve only been to this facility a few times, but I’ve become fascinated with Theresa—because she may be the happiest person I’ve ever met.

The first time I visited the facility, I did a discussion activity and showed the participants photos of vacation destinations (e.g., the Grand Canyon, Wrigley Field, the St. Louis Arch). Every time Theresa saw one of these color photos, she lit up.

“Wow! Honey! That is the most beautiful place I’ve seen!” she would exclaim each and every time I showed a new photo. Several people in the group were asleep and a couple of others appeared to be bored out of their minds, so I appreciated her enthusiasm.

She would talk about how she was going to plan trips to each of these destinations and just couldn’t wait to go sightseeing. Of course, it seemed unlikely that Theresa would be booking flights and hotel rooms in the future, but it would have been cruel for me to point this out. She was having a great time talking about her hypothetical trips.

She even mentioned that she planned to rent a convertible so she could feel the “wind in her body.” After she said this, she closed her eyes for a moment, presumably imagining what this would feel like. She made me want to rent a convertible to feel the “wind in my body.”

I watched Theresa interact with some other residents. One woman was sitting in a wheelchair, slumped to one side, with half her lunch stuck to the front of her shirt.

“Wow! Honey! You look so beautiful today!” exclaimed Theresa. The woman in the wheelchair barely looked up. Theresa walked over and patted her hand.

As I left the facility, she followed me down the hall, telling me how beautiful and fashionable I was. She loved my boots. She loved my hair. She thought I had the prettiest blue eyes. How could I not love her?

She tried to follow me out of the door, and it broke my heart to tell her that she couldn’t go outside. I wished she could follow me around all day just to bolster my self-esteem.

“I’m afraid you have to stay here…because there are some more activities today and they’ll need you there,” I said.

“Oh, now that sounds just so fun. I am so excited!” Theresa responded with a grin. She gave me a hug before walking back down the hallway.

I thought about her the rest of the day. I wasn’t sure if I should pity her or envy her. Sure, she had Alzheimer’s, but she seemed to be living with more joy than I was. Her positive nature forced me to take an inventory of my own attitude. If she could carry around that much zest for life in her limited world, I decided I could do a little bit more laughing and smiling in my own world.

A month later, I was back at the same facility. Theresa wasn’t able to participate in my activity because she was getting her hair done at the nursing home beauty shop. I happened to pass the beauty shop and noticed her sitting in the chair as a hair stylist was taking out her rollers. I walked in to say hello.

I don’t think Theresa recognized me from my previous visit, but that didn’t matter. She could not have been more excited to see me if I were the Pope. There’s something about someone jumping out their chair with joy when you walk into a room that just makes your day.

“Wow! Honey!” she said. “You look so young and pretty! You are perfect!”

I struck up a conversation with the hair stylist, who said she wished all of her clients were like Theresa. She was just finishing up Theresa’s hair, and Theresa was grinning as she looked at her reflection in the mirror.

“Wow! Honey!” Theresa exclaimed. “I look like a new woman! I love everything about my new haircut and perm!”

The hairstylist whispered to me that she had not cut or permed Theresa’s hair. In fact, she had only put in six hot rollers.

As I left the facility that day, Theresa again walked me out.

“Goodbye, honey! You’re so good at your job and so pretty!” she yelled as I walked out.

It doesn’t matter that Theresa doesn’t really know who I am. It doesn’t matter that she has no idea what my job even is. And it doesn’t matter that she tells everyone–not just me–that they are pretty.

She’s genuine. She has no ulterior motives. It makes no difference that she may not remember a thing about me after I walk out the door.

She makes my day.

 

 

 

The Holidays in Dementialand

dementia

I don’t usually publish a blog post on Thursdays. This is a special Thanksgiving version of Welcome to Dementialand. 

You are probably expecting me to rattle off a list of what I am thankful for, but I’m not going in that direction. I’m not going to prompt you to be grateful either.

This post is for all of you who woke up this morning and thought, “Uh. It’s Thanksgiving. God help me survive this day,” or something along those lines. Maybe you had a moment of realization that the holidays are upon us, and it wasn’t exactly a joyous realization. This is for all of you that aren’t all that excited about Thanksgiving but will smile all day–because it’s what you do.

My blog focuses on Alzheimer’s and related dementias, so it makes sense to start there. Maybe you have loved one with dementia who used to play a large role in your holiday routine. Your grandpa used to carve the turkey but now he has dementia and doesn’t remember how to use a knife. Maybe today you’ll see that your mom can no longer follow a recipe, and you’ll have to choke down something that lacks several key ingredients. Perhaps today involves a nursing home for you. Perhaps you will wish someone you love a happy Thanksgiving, and they will not only have no idea that it’s Thanksgiving but also have no clue who you are. The holidays can hurt. And it’s understandable that you are not excited.

This is not just about dementia though. Lots of us have love-hate bittersweet relationships with the holidays.

People who have lost a loved one. I originally wrote “people who have lost a loved one recently” but I took out the word recently. You don’t get a certain limited number of bad holidays after someone dies. The holidays don’t return to “normal” at a point. Maybe you develop new holiday routines. Maybe you learn better coping mechanisms to get through the holidays. But the holidays still hurt. They will never be the same again. You can say that people develop a “new normal,” but that’s just a nice way of saying we continue on…with something missing.

People who have divorced parents. I know a guy whose parents are divorced who married a woman whose parents are divorced. They have three children. He refers to Christmas as “the day we drive around to lots of houses and hope we don’t piss anyone off by not spending enough time with them.” They dread the day. They are grateful to have so many people who love them, but it doesn’t make it any less frustrating as they rush from house to house.

People who are seriously ill. Maybe you have dementia. Or cancer. Or something else. Maybe it’s a life-limiting illness, and maybe you don’t know if this is your last holiday go-round. You want to be grateful and enjoy each moment, but it’s not that easy. When I was volunteering for hospice, I spent time with a woman who beat herself up for not savoring what she knew was her last Christmas. She wanted to enjoy it because it was her last Christmas, but she couldn’t stop thinking about how it was her last Christmas.

People who have major depression or mental health issues. Let’s face it…there is not much worse than struggling to be happy in a world where people are singing Christmas music. Being depressed is difficult when you are surrounded by people who are ridiculously happy (although you shouldn’t let them fool you, they are not that happy). The holidays are often rough for people with serious depression and anxiety. In fact, I’m not sure I’ve ever met anyone with significant clinical mental health issues who can say without breaking into laughter or tears that they love the holidays. I have a friend who struggles with depression. She says that depression is like walking through life with a few extra bricks on your back. And the holidays add a couple more.

I could go on…Maybe you hate the holidays because your parents were emotionally abusive and you have to spend time with them—and pretend to be happy about it. Perhaps you are divorced and the holidays make you feel like a massive failure. In my opinion, most of us have a reason that the holidays aren’t what we think they should be…or what we think they are for other people.

If you fall into that category, you are not alone. In fact, if you don’t have something in your family or personal background that makes the holidays at least a tiny bit difficult, you are a rare species…or more likely a liar. Yet, we all put on our biggest holiday smiles and keep stuffing our faces with green bean casserole (or the appropriate side dish in your region–I live in the Midwest). Then, after the day is over, we go home and climb into bed thinking “I survived another holiday.”

Don’t get me wrong here. I’m not saying that the holidays are all bad for most of us. They’re not. I’m just saying that they aren’t all good either. They aren’t as sentimental as those Folgers commercials tell us they should be. And our family holiday dinners don’t end with a heartwarming moment when we realize the true meaning of family. For some us, it’s a victory if no one storms out before dessert.

I see a lot of Facebook posts that encourage us to count our blessings today. To be grateful. To be thankful. To be appreciative. I want you to know that being frustrated, grieving, and hurting doesn’t mean you are being ungrateful. Missing someone who is gone doesn’t mean you are unappreciative for the people you have. Noticing that your loved one’s health is declining and mourning that doesn’t mean you aren’t thankful that they are still with you. Grateful is not an exclusive emotion. You can feel grateful while you feel a lot of other emotions as well.

Here is my message for you today…No matter how you feel about the holidays, it’s okay. If you love the holidays and face them with no sense of anxiety or dread, you are a lucky, lucky person. Please understand that many people wish they were in your shoes. If you hate everything about the holidays, I’m sorry. But I know that 95% of you are in neither of these groups. Most of us face this time of year with somewhat mixed emotions. Few things in life are all good or all bad, right?

So if you pretend you’ve forgotten an important ingredient for a recipe just to get out of the house for 20 minutes and stroll around SuperTarget, it’s okay. If you’re proactive, maybe you can forget an ingredient on purpose. If you take your cell phone to the bathroom to text your friend an SOS for emotional support, it’s okay. If you have to have a glass to wine to get through dinner with your family, it’s okay. (Ignore my last statement if you are in Alcoholics Anonymous or are under 21.)

I fully anticipate that I will get a several emails and phone calls in the next week or so. They will be from people who came “home for holidays” only to realize that their mom, dad, grandparent, sibling, etc., wasn’t doing quite as well as they thought they were. They will ask me if they should call a doctor or if it’s safe for their loved one to live alone. Unfortunately, spending extended time around family members we don’t often see leads to discoveries that we often don’t want to make. Once we make those discoveries, we must answer difficult questions and make hard decisions. Sometimes the holidays provide us with information we don’t want to have, but we can’t look the other way. The holidays have a way of putting stuff we’d rather avoid front and center.

So it’s Thanksgiving. You’re going to have to get up, and you’re going to have to face it. The good and the bad. I hope today is more good than bad for you. And if it’s more bad than good, I hope you have someone to turn to that can help you face the bad. When I read cheesy Facebook posts that encourage me to count my blessings on Thanksgiving, I don’t give thanks for having a perfect life…because I don’t. I give thanks for those who support me when my life is particularly imperfect.

Maybe I lied just a little bit. Maybe my Thanksgiving post contains just a little bit of thankfulness…Here goes: Thank you to the amazing family members that I’ve been assigned by the universe, and thank you to the amazing family members that aren’t blood or legally related to me but have shown up along the way. I’m not sure it’s fair for me to hope that my life will never be a hot mess–that’s just unrealistic. But I can hope that I’ll always have someone to share that hot mess with…and I’m fortunate that I do.

Pass the green bean casserole and pink jello fluff. Then let’s look at the Black Friday ads.

 

 

Whack-A-Mole and Tongues in Dementialand

alzheimer's, dementia, dementialand,

A friend of mine, who is engaged to be married, once referred to conversations with her future mother-in-law as games of Whack-A-Mole. I remember being a huge Whack-A-Mole fan when I’d visit Chuck E. Cheese as a kid. Little toy moles would pop up in random patterns and I’d have to respond by hitting them with a mallot. My friend considered her future mother-in-law’s questions and topics of conversation to be so random and unexpected that they were like those little moles popping up.

I could use the same analogy for some of my friends with dementia. Their questions, comments, and subjects of conversation aren’t always predictable. As someone who gets sick of bland and boring small talk (“Hi, how are you?” “Fine, how are you?” “Good.”), I’ll take the refreshing Whack-A-Mole conversation anytime.

I was walking out of a nursing home last week and passed an older man who appeared to be sleeping in his wheelchair. When I walked by, he opened his eyes.

Without pause, he said to me, “I know a lot about tongues.” Yep. It was a Whack-A-Mole conversation, and I was all in.

“I’ve always wanted to meet a tongue expert,” I said without missing a beat.

And he was more than willing to teach me about tongues. First, he told me to open my mouth and show him my tongue. I obliged.

“Yes, that is a good one,” he told me. I was strangely proud. He continued talking about tongues. My tongue. His tongue. Tongues in general.

Here is what I learned about the tongue:

You might think that the tongue is a single muscle (I did), but it’s actually made up of eight muscles. In fact, you can think of it as a “little bag of muscles.” If people have bad breath, it is often because of bacteria on their tongue. Taste buds aren’t just on your tongue. They are also on the roof of your mouth and other places “around in there.” The average tongue is 10 centimeters long (but this guy said he had measured his a few years ago and it wasn’t quite that long). It’s hard to get an accurate measure of a tongue because of the gag reflex. A human tongue print is as unique as a fingerprint. Cats have special tongues that are rough so that they can be used for cleaning, but their tongues also pick up a lot of debris which is why they get hairballs. Oh, and people can get tongue cancer. He knows several men–but no women–who have had tongue cancer.

After the tongue lecture, I asked him, “How do you know so much about tongues?”

He pointed to his forehead, and his eyes lit up.

“Encyclopedia!” he exclaimed. And then he used his feet to turn his wheelchair around and headed off in the opposite direction.

I was left standing there watching him as he slowly moved down the hallway.

When I got home that night, I got on my laptop and Googled “interesting facts about tongues.” I realized that everything he told me about tongues was, in fact, credible. I hadn’t doubted him. It’s just that I’d given so little thought to tongues in the past.

I read an article on gratefulness while I was waiting in the doctor’s office a few weeks back. The article suggested identifying at least one “highlight” of the day when you go to bed each night. This is something that would usually make me roll my eyes, but I’ve been doing it. No matter how good, bad, or neutral my day was, I force myself to think about one positive thing that happened as I get ready for bed.

On this particular night, I thought to myself, I learned a lot about tongues today.

Whack-A-Mole.

 

 

 

 

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

alzheimers, dementia, life,

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.

History Lessons from Dementialand (Or How I Learned to Love History)

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History wasn’t my favorite class in school. In fact, that’s a grand understatement. History was probably my least favorite class in school. (I’m kind of lying. Chemistry was actually my least favorite subject but I don’t often mention this because my dad was a chemical engineer and my apathy toward chemistry repeatedly breaks his heart.)

My feelings about chemistry aside, I was not a fan of history. I remember one of my high school history teachers. He had shaggy hair and wore tie-dyed t-shirts. He tried to make it interesting. I’m sure he did make it interesting for other people. Somehow, he didn’t make it interesting for me. That’s not a complaint about him. I feel like I probably owe the guy an apology. I never even tried to take an interest in what he was talking about.

College wasn’t any better. I made a decision to dislike every history class I had to take before the semester started. It didn’t help that I was dating a history major at the time. I didn’t understand how he could find this stuff interesting. He didn’t understand how I couldn’t.

When I finished college, I thought I was done learning about history. Little did I know that I was just getting started.

My friends with dementia have taught me more about history than I ever learned in school. That’s not a knock on my education. It’s a comment on my previous disengagement in the subject matter and a nod toward the opportunities I’ve had to learn from people who were around decades before I was. And some of them are pretty damn good teachers.

A man with Alzheimer’s told me that he was in a car with a group of guys who cheered when they heard on the radio that John F. Kennedy was shot. I asked him why they cheered and he shrugged. He said he guessed they didn’t like Kennedy. And that they were teenagers. He told me that teenagers are teenagers.

A women in her late 80’s who suffered from dementia told about what it was like to go through a divorce when divorce was stigmatized. Interestingly, she was the one who wanted the divorce, even though she knew it would leave her in poverty to raise a child. Her ex-husband found a new wife within a few months. It wasn’t so easy for her. She told me that men practically sprinted away when they found out she was divorced with a young child. She called it a double standard. She finally did get remarried…in her 60’s.

I sat at a nursing home once while a man told me about having tinsel on his family’s Christmas tree as a child. It was a product of the Great Depression, he said. People wanted decorations that were shiny to spruce up a Christmas tree with few presents underneath. Tinsel was cheap but somehow fancy. It made people feel a little richer when they were poor.

It occurred to me recently that this is history. If you know anything about dementia, you know that it is typical for long-term memory to outlast short-term memory. It is common for someone to have no idea what they had for breakfast but to be able to recall rich details of something that happened 40 years ago.

I’ve heard people say that the preservation of long-term memory is a gift—that it gives people with dementia time to pass on their stories before they disappear. I once had a woman with Alzheimer’s tell me that she wasn’t forgetting her past. She was passing it on. Unfortunately, not everyone has someone to pass their story on to before it is forgotten. Many experiences don’t seem notable enough to make the history textbooks, but that doesn’t mean they lack value.

Everyone has a story. Their story is about them, of course, but it’s also about the context in which they lived. It’s about when they lived. It’s about where they lived. It’s tied in with the headlines of the era but (to me) more interesting. That’s what I was missing about history when I was younger.

I meet many people who can no longer tell me their stories. I used to say hi to a woman at a nursing home when I’d visit to do staff education. She was slumped over in a wheelchair and could not speak. She couldn’t tell me her story. After she passed away, I learned more about her. She was a white teacher at a predominantly black high school in a rough part of Chicago. You could find her students hanging out at her house in the evenings, doing homework and eating cookies she had baked. Now there’s a story (and one you could probably make into a made-for-TV movie).

I like to joke that children frighten and confuse gerontologists like me. Contrary to popular belief, I like kids. They can be fun to hang out with (for a while). They say some hilarious stuff. And, similar to those with dementia, I often find myself enjoying their brutal honesty.

Kids, however, don’t have very interesting stories. It’s not their fault, of course. They just haven’t been here long enough to develop their stories. They also don’t get to make a lot of their own decisions, which limits the twists and turns their stories can take. Give me an 80 year old any day of the week.

When I was a kid, I read “Choose Your Own Adventure” books. You’d get the end of a chapter and have a message like, “If you want to go in the house and see what’s causing the noise, turn to page 33. If you want to call the police, turn to page 43.” You come to a crossroads, and you have to make the call.

How many times has an 80-year-old had to make a life-changing decision, whether they realized at the time it would change their life or not? More times than a kid…of course….which is why I’m a gerontologist and not a child psychologist. Older adults have life histories rooted in contextual details that I can’t fully understand—the Great Depression, the Vietnam War, the racial tension of the 60’s. The choices they’ve made are linked to the times and places they’ve experienced. People are not independent of historical context…because people are history.

I don’t know if it’s better to lose your short-term memory before your long-term memory or vice-versa. And it’s irrelevant to overanalyze this because we aren’t given a choice in what we lose when dementia strikes. A compromised short-term memory certainly impacts your daily functioning, and it’s one of the main reasons we have to limit the independence of those who have dementia. Having problems with your short-term memory is tough, and that’s an understatement.

However, I sometimes feel fortunate that it’s the long-term memory that sticks around when the short-term memory fails. To be honest, I am more interested in a person’s stories about what happened 50 years ago than their stories what happened this morning.

I guess I don’t hate history after all. I just didn’t really know what history was when I was in school.

The Awesome People I Meet in Dementialand

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Sometimes I get on a streak where I write sad posts, and I’ve been on one of those streaks lately. To Dana and Sarah…I’m sorry I made you guys cry at work. I promised myself that today I would write something happier–at least less sad. So here goes…

I used to visit a particular nursing home quite frequently. I’d see a couple sitting by the nurse’s station. They were both in wheelchairs and looked quite frail. Sometimes they were holding hands. They talked a bit but not much. Their conversations didn’t make much sense to me, but somehow they seemed to get each other.  They had an undeniable connection and words seemed unnecessary.

I don’t know if they seemed happy…maybe comfortable is a better word. I usually said a quick hello to them as I passed. The man would just smile at me, and the woman would typically respond with a smile and a “Hi, honey.” Honestly, I didn’t really think twice about them or their relationship.

However, one day I entered the nursing home and noticed another woman sitting with them. She was well-dressed with fresh make-up and a bright smile. She had pulled up an uncomfortable-looking tacky floral chair on one side of the man and was holding his hand. The other woman, in the wheelchair, was sitting on the other side of the man and holding his other hand. As usual, I greeted them as I passed. The woman in the wheelchair responded, as did the other woman.

I couldn’t be sure of it at the time, but eventually I confirmed that the well-dressed woman was, in fact, his wife of over 40 years, who I will call Lynn. She lived about 45 minutes away and visited her husband, Joe, three or four days a week. She felt a bit guilty she couldn’t be there more, but she had a part-time job and also provided care to her grandchildren.

As time went on, it became my routine to make small talk with Lynn if she was present when I arrived at the facility. While we chatted, she would usually be holding her husband’s right hand while the other woman clung to her husband’s left hand.

The woman in the wheelchair? Her name was Zelda (or at least that’s what I will call her). She had Alzheimer’s, like Joe did. After Joe moved into the nursing home, he developed a sort of attachment to Zelda. When he saw her, he’d slowly maneuver his wheelchair close to hers and grab her hand. If he couldn’t find her, he’d use his shuffling feet to move his wheelchair around the building looking for her. If they were seated separately in the dining room, he’d move his wheelchair so he could eat next to her. The staff learned to seat them together. At one point, Zelda was admitted to the hospital. Joe seemed anxious while she was gone.

He didn’t know Zelda’s name, but if you asked him whose hand he was holding, he’d say, “This is my wife.” He’d usually follow with something like, “Isn’t she beautiful?” Once in a while, he’d kiss her hand or pat her knee.

One day I walked into the nursing home and saw that Lynn had brought ice cream sundaes from Dairy Queen. She was feeding Joe tiny bites. Zelda was right there, too. Lynn was feeding her bites as well. One bite for Joe; one bite for Zelda. All three were smiling. That was when I realized that Lynn was an incredible person.

As time went on, I learned more about Zelda. Her husband had passed away years ago. Her kids lived far away, and she seldom had visitors. She had been a nurse in the very same nursing home in which she now lived.

Early on, the staff to tried separate Zelda and Joe if they expected Lynn would be visiting. Joe’s caregivers liked Lynn, and they didn’t want to cause her any pain. However, that only worked for a few weeks. One day Lynn arrived and found Zelda and Joe holding hands by the nurse’s station. A nurse pulled her aside and apologized.

“She told me she knew it was hard for me to see him with her like that,” Lynn told me. “But it really wasn’t. It was a good feeling.”

My husband doesn’t have Alzheimer’s. I don’t know what it’s like to have a spouse who doesn’t recognize me. I don’t have a sense of what it’s like to see my husband holding hands with someone else–someone who he thinks is his wife. I have no idea how I would react in this situation. And I have no idea how others would respond if they were in Lynn’s shoes. I am curious how many would be able to say it was a “good feeling.” I’m guessing it wouldn’t be many.

Lynn liked the idea that her husband wasn’t alone when she couldn’t be there. She pointed out that she was only able to be there about a few evenings a week, and it brought her comfort to know Zelda would be sitting with Joe when she wasn’t visiting. Lynn even included Zelda when their family gathered in the nursing home lounge to celebrate holidays and birthdays. If anyone in Lynn’s family wasn’t comfortable with that, they didn’t mention it to Lynn. Zelda lit up when she saw Joe and Lynn’s grandchildren enter the facility. Lynn wasn’t about to tell Zelda she couldn’t hang out with them. A staff member told me that Lynn even bought Zelda a teddy bear and some of those fuzzy sock slippers for Christmas. They were the only presents she got.

As I got to know Lynn better, she told me that she feared Zelda would pass away before Joe, and then Joe would feel lost and lonely. She wondered aloud if she’d still visit Zelda if Joe died first. It bothered her to think of Zelda not having any visitors.

I told you this wouldn’t be a sad post, but maybe that was a bit misleading. It is undeniably sad that Alzheimer’s can cause a loyal spouse to literally forget he has a wife. It can make a man unaware that the person whose hand he is holding isn’t the person to which he committed to for life. It can cruelly rob individuals and their loved ones of the relationships that are most important to them.

And that’s why, as Lynn told me, you can’t take the pleasures and comforts that it leaves behind.

“Alzheimer’s has taken so much from him. I’m not going steal one of the few comforts he has left,” she said, referring to Zelda.

I find that the most amazing love and most incredible kindness are often found in the situations that seem the most hopeless. Lynn never expected her husband would have Alzheimer’s. She never expected he’d forget her or that he’d spend his days holding hands with another woman. Somehow…and I don’t know exactly how…when she found herself in that situation, she fed them both ice cream and did it with a smile. And she bought her husband’s friend new slippers.

When asked about it, she says with a shrug, “Well, what else am I gonna do?”

There are some awesome people in this world.

And that’s why this post isn’t (all) sad.

Taking John Home to Die in Dementialand

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Last week, a friend of mine, Heidi, took her husband home to die.

I first met Heidi a few years ago when she took a fitness class. I happened to be the instructor. As Heidi tells it, she hated the class but loved me. She says she loves me more now that I’m not telling her to do squats.

Her husband, John, is in his late 60’s. He was diagnosed with Alzheimer’s about five years ago and then with cancer in the spring. Heidi was taking care of him in their home until a few months back when John fell down the stairs.

She was forced to call 9-1-1 when she found him. They hauled him to one hospital and then (for some reason neither Heidi or I understand) to another one. They loaded him up with IV antibiotics to treat a urinary tract infection. The social worker at the hospital recommended that John be placed in a nursing home for “rehab,” and Heidi hesitantly agreed.

It was only a few days into his stay at the nursing home when Heidi received a call that John was back at the emergency room. She rushed to the hospital to find John alone in a treatment room, terrified, with a sling on his arm. He had somehow fallen out of bed and broken his arm. She tried to comfort him, but he seemed apprehensive of her. It was the first time he didn’t recognize his wife.

The emergency room doctors performed what Heidi called a “ridiculously extreme” number of tests. They gave Heidi a laundry list of what was wrong with John. Of course, they proposed some solutions. Heidi was smart enough to know that these weren’t permanent solutions, and probably weren’t even temporary solutions. All of the proposed treatments carried their own negative consequences. A family member asked if a pacemaker might be an option for John’s failing heart. Heidi knew he wouldn’t survive a surgery like that, but when she told someone else this, they said she shouldn’t give up.

The atmosphere at the hospital was chaotic and agitated John. Heidi wanted him out of there, but he was admitted for a few nights. A few nurses mentioned that he was being “uncooperative” and hoped that maybe Heidi could have a talk with him. His Alzheimer’s had progressed to the point that he didn’t say much, but when something came out of his mouth, it was usually “Goddammit!” or “Holy shit!” He had a roommate who was (justifiable) annoyed with John’s outbursts when they kept him up at night.

“He’s not uncooperative,” Heidi ranted. “He’s not being a jerk…he has Alzheimer’s.”

After a few days at the hospital, he was discharged to a nursing home. This time he went to a different nursing home that was “better equipped” to meet his needs, according to the hospital social worker. Heidi thought the new nursing home was cleaner and found the staff to be more professional. However, it was also about 45 minutes from her home. She settled into a routine that included an hour and a half in the car each day.

She told the staff that she knew John was nearing the end of life. She stressed that he had a “Do Not Resuscitate” order and she wanted his comfort to be the priority. She told the director of nursing about how stressful the last hospital stay had been for both of them and how she felt it had made his situation worse rather than better, anyway. The staff was understanding and empathetic.

Yet, an ambulance was called for John one morning before Heidi arrived. The nursing home staff had wondered if he had experienced a stroke. Once again, she arrived at the hospital to find John alone in a treatment room. He was trying to get up on his own. Heidi says if she hadn’t arrived when she did he would’ve ended up flat on the floor “like a pancake.” After a multitude of tests, they decided that John had not had a stroke.

Heidi called me that evening, and I asked her something I should have asked her months earlier.

“Have you considered calling hospice?” I asked.

She said that someone told her that hospice wasn’t an option for a person living in a nursing home. I asked her who told her this, and she told me that she couldn’t remember but thought it was someone at the nursing home. I promised her that hospices do serve individuals in nursing homes. She made a couple of phone calls the next day.

With the assistance of hospice, John was eventually transported home from the hospital rather than back to the nursing home. Heidi hadn’t realize that going home with support from hospice would be an option, so she was ecstatic.

“I’m like Dorothy from the Wizard of Oz,” Heidi told me. “There’s no place like home.”

She asked me why no one had told her to call hospice sooner. I explained that John had been hopping from doctor to doctor, from hospital to hospital, from nursing home to nursing home, and when that happens sometimes medical professionals assume someone else will have the “hospice talk” with a patient and their family.

As for why I didn’t say anything to her sooner….I assumed someone else would. I thought it wasn’t my role. I didn’t know how to bring it up. Really, though, I just dropped the ball.

John’s at home now. Nurses come by, but he doesn’t see a doctor anymore. Heidi is okay with that. There are no more medical tests. There are no more annoyed hospital roommates. Hospice even sends a volunteer twice a week so that Heidi can go out to eat with her friends. The volunteer even does the dishes while she is gone. If there’s a crisis, Heidi calls hospice rather than 9-1-1. She feels guilty that she calls so much.

John spends most of his time sleeping in the hospital bed that hospice delivered to the house. After much discussion, the bed was placed in the living room where John can look out the sliding glass doors into the backyard. Heidi sleeps in a recliner next to the hospital bed. The bed is angled so he can see the leaves as they change colors. No one is sure whether or not he is actually able to see the leaves, but Heidi doesn’t like idea of him looking at a white wall and ceiling on the rare occasion when his eyes are open.

Heidi tries to readjust him every few hours so he doesn’t get pressure sores, but she’s noticing his skin is getting thinner and more fragile. He seems to wake up in a panic sometimes, but he usually calms down quickly. Eating has become challenging. She puts pureed food in his mouth, but he’s forgotten how to swallow. The hospice nurse taught her a few tricks, but they don’t work anymore. A family member keeps mentioning a feeding tube, but Heidi won’t consider it. The hospice nurse has told her that a feeding tube would only make John less comfortable. Heidi has no idea if John is in pain, but she gives him pain meds just in case. He’d never be able to tell her if he was hurting.

In hospice, the term “actively dying” is used to describe a person in their last 24 to 72 hours of life. Heidi is told that John isn’t there yet. She feels like his work here is done, and she knows that he wouldn’t want to linger like this. He would hate that her life is on hold while he’s dying. She feels like he’s not living, but he’s still here anyway. She knows she’ll feel relief when he passes, but she doesn’t know if that will be the overwhelming emotion. Maybe it’ll be sadness. Or anger. Or denial. Perhaps they will all be mixed together and she’ll have no idea what she is feeling, but she knows relief will be mixed in there somewhere.

“I know people who have lost their husbands when they still had little kids, so I can’t complain,” she tells me. “We’ve had a pretty good run.”

In one breath, she tells me that she’s ready for him to go. In the next breath, she says that she’ll never be ready for him to go. Then she tells me that he’s already gone.

That’s what Alzheimer’s does.