Saying No and Leaving Early in Dementialand (aka I Wish You the Best Possible Holidays)

You do not have to buy a present for every single person you’ve called a friend since middle school. If you don’t have the time or energy to send out holiday cards, then don’t do it. Maybe Midnight mass just isn’t in the cards this year. No one ever died from only having one choice of pie at a holiday dinner (unless it’s pumpkin pie, which is disgusting since pumpkin is a decorative item and not a real food–just an opinion).

If you’ve read my blog for a while now, this post might seem somewhat familiar. Every fall, I feel the need to kick off the holidays with a bit of advice for my readers with dementia and for those who love them.

If you live in America, you know that Thanksgiving is approaching. And then Christmas is right on its heels. I know that our belief systems and geographic locations dictate which holidays we celebrate. And I don’t care what holidays you celebrate….Hanukkah, Winter Solstice, Kwanzaa, Boxing Day, Faux Fur Day (which is on December 1 and is seriously a real thing)… I know I’m missing dozens. Don’t hold that against me.

My message is intended for you no matter your religion and cultural affiliation. Just change the customs and rituals. Insert your own. If there’s one thing I know about dementia, it’s that it doesn’t discriminate based on ethnicity or religion (or sexual orientation or political party, for that matter). It’s all about equality here in dementialand.

Here goes:

You do not have to do every single thing you’ve done on every holiday in the past. Yes, you can skip the community tree lighting. No, you don’t have to serve the holiday meal at the Salvation Army just because you’ve done it five consecutive years. Yes, it’s okay to give cash as gifts so you don’t have to brave the madhouse of humanity know as the mall. No, the neighbors won’t judge you if you don’t put up lights this year (and if they do, screw them).

If Grandma seems stressed out by being around the chaos that is the family holiday gathering, it’s okay to take her back to the nursing home earlier than planned. If your mom–who is approaching end-stage dementia–doesn’t have any interest in eating the turkey or ham, it’s fine to let her have a few cookies instead.

Grandpa has always made it a point to go to the kid’s holiday programs at school, but we may have to accept that it’s just too much this year. Or maybe we can take him for the 10 minutes his grandkids perform and then get him the heck out of there before he has what his family refers to as a “meltdown.”

We love our family rituals. And family rituals can be fantastic–but we can’t be so tied to a ritual that we force a person with dementia into a situation that isn’t a good fit.

One of my friends told me that her extended family goes to a holiday parade in Chicago together every year. It’s a long drive and a lot of walking. And—this is a part that many of us, even those without dementia, struggle with–lots of people in close quarters. Her mother, who has younger-onset Alzheimer’s, refused to miss it.

To make a long story short, her mother was exhausted by the time the parade started. The sights and sounds were just….too much. Her exhaustion resulted in frustration. Her frustration resulted in some uncharacteristically mean comments directed toward family members. At one point, she told her grandchildren that they were bad children and they would be getting boxes of rocks for Christmas.

She even picked up a piece of candy that had been thrown in her direction by a parade participant and put it in her mouth….without taking off the wrapper. In retrospect, my friend wonders if they could have found a smaller parade that was closer to home, but they were so tied to their ritual that it never crossed their minds.

Many people with dementia love being around children. However, we have to understand that being around children can be exhausting for all of us –especially those with dementia. The dementia brain struggles in chaotic environments, and I don’t know of many environments more chaotic than holiday gatherings with cousins running around like unruly punks. Oh, add in their new toys, especially those toys that happen to be ridiculously loud. The dementia brain is going to tire quickly. Heck, my brain tires quickly. (Give me a break here. I am a childless gerontologist.)

And then we say the person with dementia is “being difficult”–when in fact we have put them in a difficult situation and they are having a difficult time. It is okay to limit the time someone with dementia spends with children. If you have dementia, it’s fine to say, “I really enjoyed hanging out with the kiddos, but I think it’s time for me to leave.” It’s okay for you to slip into a spare bedroom and take a break.

You don’t have to apologize. You don’t have to feel guilty. You don’t have to explain. You have my permission to remove yourself from a situation before it becomes anxiety-provoking. And you have my permission to preserve your mental and physical energy. The holidays are a marathon, not a sprint.

There’s a simple little trick that works for my husband and me around the holidays–and it also has some usefulness for dementia carers. It’s pretty simple: Always drive separately.

Your sister could pick up you and your spouse, who has Alzheimer’s, and give you a lift to the holiday gathering. It’s nice she offered. You appreciate that she’s thinking of you.

But…consider how long your sister might want to stay. If your spouse starts showing signs of stress, you might want to hightail it out of there. That’s harder if you don’t have your own vehicle. No matter the event, always have an escape route–even if that escape route is an Uber or a Lyft.

There are going to be these people who don’t understand. Maybe they are family. Maybe they are close friends. They are not going to get why you need to leave the party early. They are not going to comprehend why you can’t attend an event that you’ve attended every year for 20 years. They are going to think it’s weird that you are giving out ten dollar bills instead of thoughtful gifts this year. They are going to question why you showed up at Christmas dinner and contributed red Solo cups instead of a gourmet dish. (To be fair, I do the last one and I don’t have dementia, nor am I a caregiver.)

You can explain it to them if you want. If you have a need to sit them down and tell them about the challenges of dementia, go for it. You can show them this blog post if you like. But….don’t expect them to get it.

Sure, it’d be nice if they’d understand. It’d be great if everyone respected your limits and encouraged you to listen to that voice in your head that sometimes chimes in and says, “Too much.”

Even if people are well-meaning, they often don’t understand how tiring it is to have dementia. They don’t understand that holiday rituals practiced for many years just may not be realistic this year.

The good news is that you don’t need their permission to take a break. You don’t need their okay to exit the party or to not show up in the first place. They don’t have to be cool with your holiday plans. This isn’t about them.

So do what you’ve got to do to this holiday season–even if what you’ve got to do is different than what it used to be.

I give you permission to say “No, thank you,” this holiday season. If that doesn’t work, I give you permission to say “Hell no!” I also give you permission to say “Yes,” and then later on say, “Nope, it’s not gonna work.”

And I give you permission to leave the party without saying goodbye to each and every person there. Sometimes it’s just time to go.

So let go of those rituals. Forget those expectations.

You do not have to buy a present for every single person you’ve called a friend since middle school. If you don’t have the time or energy to send out holiday cards, then don’t do it. Maybe Midnight mass just isn’t in the cards this year. By the way, no one ever died from only having one choice of pie at a holiday dinner (unless it’s pumpkin pie, which is disgusting since pumpkin is a decorative item and not a real food–just an opinion).

It’s okay to not put up a Christmas tree. It’s okay to put up a Christmas tree and leave it up until March. Also, I promise your kids and grandkids can grow up to be functional adults if you don’t participate in that weird Elf on the Shelf deal. Oh, I can definitively prove that the world doesn’t end if you don’t have time to wrap gifts and just give people things in plastic Target bags. I don’t think I’ve used wrapping paper since Obama’s first term. Think about all the money I’ve saved to spend on wine.

And always keep in mind that Chinese restaurants are open on Christmas Day. In a jam, you can never go wrong with some takeout moo shu pork and eggrolls. On a side note, I googled which wines pair well with Chinese food. Go with the Riesling.

I said something really dumb a few days ago. It wasn’t the first time and won’t be the last, of course, but I keep thinking about it.

A woman was telling me about her challenges as a caregiver. Her husband, who has frontotemporal dementia, is about to get “evicted” from a nursing home for being “disrespectful toward staff.” (Don’t get me started.) In addition, she’s been diagnosed with lung cancer. After I listened to her talk about how she can’t sleep at night, we wrapped up our conversation.

“Happy holidays,” I said. Yeah. That was stupid.

She laughed. We both realized how idiotic, although sincere, my holiday wishes were. Sure, I wanted her holidays to be happy, but it seemed a little pie-in-the-sky. I tried to recover.

“Well, best possible holidays!” I said.

So that’s it. Best possible holidays to you.

Maybe that means you’re gonna thrive this holiday season. Maybe you’re just gonna survive. But either way….

Best possible holidays to you, my friend.

 

 

 

Dementia and the Gift

I get a lot of gifts from people with dementia. And I’m not talking about abstract and intangible gifts. I’m talking about actual stuff.

Sometimes they are gifts “stolen” from another resident at a memory care community. Sometimes they are pulled directly from a dirty clothes hamper. Sometimes they are things that aren’t really useful to me–like a used lipstick.

I have been given family heirlooms only to return them to family members at a later date. People have insisted I accept horse figurines, gently used toothbrushes, expensive and inexpensive jewelry, cat beds, and rocks. People color me pictures. Once someone gave me a photo of their grandbaby so I “wouldn’t forget what babies look like since no one has them nowadays.”

I get a lot of gifts from people with dementia. And I’m not talking about abstract and intangible gifts. I’m talking about actual stuff.

Sometimes they are gifts “stolen” from another resident at a memory care community. Sometimes they are pulled directly from a dirty clothes hamper. Sometimes they are things that aren’t really useful to me–like a used lipstick.

I have been given family heirlooms only to return them to family members at a later date. People have insisted I accept horse figurines, gently used toothbrushes, expensive and inexpensive jewelry, cat beds, and rocks. People color me pictures. Once someone gave me a photo of their grandbaby so I “wouldn’t forget what babies look like since no one has them nowadays.”

My mom worked in activities at a nursing home when I was a kid, and I spent a lot of time running the halls (literally). Many residents kept candy in their rooms to offer to guests. Mostly those butterscotch discs. Sometimes root beer barrels. Often the candy was old–really old. I always took it anyway. I’d put it in my pocket and say I was saving it for later. Spoiler alert: I didn’t always eat the candy.

Once an old guy with dementia gave me his John Deere hat because I said I liked the color green. Later, I gave it to my mom, who put it back in his room. Ironically, those John Deere hats are really in with the hipsters nowadays. Maybe I should have kept it.

I have heard from families who are frustrated that when they give their loved one with dementia a gift they often find it was been re-gifted. Someone I know bought her mother a colorful holiday wreath for her nursing home door and found it hanging on the door of another resident. She thought the other resident might have nabbed it…but realized later that her mother had gleefully presented it to her as a gift.

I was talking recently with a woman with younger-onset Alzheimer’s. She confided in me that the hardest part of having dementia (for her) was the feeling that she was no longer able to give. She hated that she couldn’t contribute to her family and friends the way she used to. She struggled with the idea that she being taken care of and had little to offer those who gave her so much.

As human beings, we want to give. Despite all the frightening and disheartening stuff going on in this world, I believe that most people are good, kind, and have a need to help others. Human beings have a need to make a meaningful difference in the lives of fellow human beings. Dementia can make it harder to meet that need.

To be clear, people with dementia make valuable contributions in this world. On a personal note, my interactions with friends who have dementia are some of the richest and most satisfying interactions I have. When people with dementia say they aren’t making a positive difference, I want to argue with them….but I have to allow them to mourn because they are not able to contribute in the way that they used…and that’s tough.

I know a woman whose family has told her that she won’t be making Thanksgiving dinner for a mega-clan of family and friends this year. In the past, she’s had up to 30 people at her house for the meal. It seems obvious to her family that her dementia has progressed to a point where she’s just not capable of this anymore. She is heartbroken.

Who is she if she can’t feed a crowd for the holidays? What good is a grandma who can’t pull together a Thanksgiving dinner? The ability to give that gift has been taken from her. They’ve told her they will buy the ingredients for her to make the jello salad (if you’re not a Midwesterner, jello salad is marshmallows and random canned fruit suspended in jello–and yes, we call it a salad).

As dementia progresses, people can’t give in the manner that they used to. And that’s hard. When they want to make a difference…when they want to make people smile…they look around for a gift to give.

One man unplugged the alarm clock in his nursing home room and handed it to me. He said, “Here. I know that you really need this.” He was so emphatic that I was pretty sure I did need a used alarm clock.

A woman once insisted I take her walker. I used it to walk out of her room–saying I was so grateful because I had recently hurt my knee (which wasn’t a lie). When she was napping later, a staff member put it beside her bed.

I used to argue when someone with dementia tried to give me a gift.

“Oh, I can’t take that. You need that,” I’d say.

What I’ve learned is that my acceptance of their gift meets a need for them. It meets their need to play the role of giver–a role that dementia can really diminish.

My briefcase is full of pages torn from coloring books. (“How old are your kids?” someone at a conference recently asked me when some fell out as I grabbed my laptop. “I don’t have any,” I said with a smile. I left it at that.)

I have to check my pockets before I put clothes in the washer so I don’t wash those butterscotch discs. Fortunately, it doesn’t ruin your clothes if you do wash them. Tootsie rolls, however, are a different story.

I have a simple rule for those of you who spend time with people who have dementia–Accept the gift. Always accept the gift.

Their need to offer it reminds me that human beings have a need to give that persists even in challenging circumstances, and that makes me think that maybe the world isn’t a horrible, awful place.

 

 

Dementia and the Wedding

Your cousin is getting married. Grandma loves weddings. In fact, she used to do all her friends’ hair when they would get married. She’s always adored family gatherings—the bigger, the better.

You plan to go to the nursing home, help her get dressed, assist her with makeup and hair, drive her three hours to the church, hang out with her at the reception, and stay with her at a hotel the evening after the event. You’ll drive home the next day after a gift-opening brunch.

That’s been the plan for months.

But Grandma’s Alzheimer’s seems to have progressed. And this just seems like…a lot.

You think about the time a few weeks ago that you took her out for pizza at her favorite Italian place. She was anxious the entire time. She asked where he husband was—although he’s been dead for a decade. She got up to use the restroom. Ten minutes later you realized she had gotten confused and left the building. When the food finally came, you decided to just have them box it up so you could take it back to the nursing home. Epic fail.

You remember Christmas. You picked her up at the nursing home at 8 am. She was looking perky in her Christmas sweater, but the information about the plans for the day didn’t seem to stick. She kept asking, “Don’t you need to get back to the office, honey? You’re gonna get yourself fired.”

The weather was by no means a blizzard—but a light dusting of snow threw Grandma for a loop. “I sure hope we don’t have to sleep in this car,” she kept saying worriedly on the way to the family Christmas party. “Do we have sleeping bags in the bag? Do you have Triple A, honey?”

Once there, the commotion of Christmas movies, kids playing, and presents being ripped open was just…too much. The look on her face was one of panic, but when you suggested taking her back to the nursing home, your family said she was “fine.” You felt they were more concerned about the guilt they would feel if Grandma wasn’t there for Christmas dinner than the well-being of Grandma, but you kept your mouth shut and Grandma stuck it out for dinner. She didn’t eat anything because she said her stomach was “too excited.” As someone who doesn’t eat when they feel anxious, you sympathized with Grandma as she stared warily at her turkey.

The more you think about it, the more you realize that taking Grandma to this wedding might be…too much. You mention this to a few other family members. They are appalled. They cannot believe that you would be so selfish. How could you consider leaving Grandma at the nursing home during such a special family event? Don’t you know how much she enjoys celebrating the milestones of her grandchildren? How could you do this to her? And your sister actually made a comment about how you were putting your own enjoyment of the wedding over the opportunity to allow Grandma to be a part of a family event. (Of course, your sister had not volunteered to help Grandma attend the wedding…she was a bridesmaid so that wasn’t a possibility.)

You mention that you brought her to the bridal shower—and she seemed to enjoy that for a while. Then she got a bit overwhelmed and said to her sister-in-law, “I apologize for crashing this party. I’m just sick that I don’t seem to know anyone here.” When her sister-in-law explained she knew everyone at the party, she said, “I think you must have be mixed up with another woman. I need to find a bus to take me home.” As the shower wraps up, you find her crying in the bathroom because she doesn’t know how to call a taxi.

Nonetheless, your family says that’s she Grandma, after all, and Grandma needs to be at this wedding. You stop arguing and agree that she will be at the wedding.

When you pick her up at the nursing home, the staff already has her in her best dress. You take a few minutes to add some makeup and curl her hair. You smile because she looks beautiful. She looks in the mirror at herself and said, “That woman is looking sharp.” You aren’t sure if she is referring to herself in the third person or doesn’t recognize herself. You’re not sure you want to know.

When she gets a bit disoriented, you keep reminding her where you are headed. You finally decide to stop telling her you’re going to a wedding because you realize this sends her into a state of panic—since she doesn’t have a gift to give the bride and groom. (You should’ve known this would bother her and kick yourself for not wrapping up something for her to give the couple.) Arriving at the wedding just before it starts, you sit with her in the front of the church. She keeps saying she has a great seat for not even having a ticket. It becomes apparent that most of the people in the church, although they are close friends and family, are not familiar to Grandma on this particular day.

When your cousin walks down the aisle in her exquisite wedding dress, Grandma turns to you and says in a loud voice, “She’s sooo beautiful. I wonder who she is.” A distant relative sitting a few rows behind you chuckles uncomfortably.

The wedding goes okay…Grandma seems to think she is at a theatrical performance rather than a wedding, but she enjoys commenting on the dresses in what could be described as a loud whisper. When the officiant asks if anyone knows of a reason why the couple should not be united in marriage, Grandma shouts, “No! They should get married!” Some people laugh; others looks horrified.

Later your mother will make a comment about how you could have done a better job “babysitting” Grandma during the ceremony. You find the term “babysitting” insulting to both you and Grandma—and to people with dementia, in general. You just nod and say you’ll do better next time. It’s an easy promise to make because you don’t anticipate that there will be a next time.

When everyone is mingling at the church after the ceremony, Grandma is confused but pleasant. She keeps telling relatives, “I don’t think we’ve met, but you just seem so nice.” You get her back in the car and are ready to drive to the hotel where the reception will be held.

Grandma says, “That was a fun show, but I’ll be glad to get home.” You tell her that you aren’t headed home yet. Rather, you are going to a reception to celebrate the marriage. She gets quiet for a few moments, and then she begins to cry. You ask her why she’s crying, but she’s not able to tell you.

“Grandma,” you ask, “Do you just want to be done for the day?” She nods. You start the three hour drive back to the nursing home.

You call a few family members. They are upset with you. They think she would have been fine when she arrived at the reception. They say that Grandma would never want to miss any part of the wedding of any of her grandkids, no matter the circumstances. They point out that there’s still time to turn the car around and take her to the reception. You don’t turn the car around.

In the passenger seat, Grandma sits quietly. Occasional tears roll down her cheeks. You want to know why, but asking her to explain her sadness only seems to compound her frustration. You turn on a country radio station because you know it’s her favorite. You count the miles until you are back at the nursing home. You keep thinking about how you’re not going to get your money back on that hotel room. (And despite a few phone calls, you don’t. Apparently hotel staff isn’t sympathetic to changes in plans due to dementia.)

When you drop Grandma off at the nursing home, she says, “This was quite a day. I hope the tickets to that show weren’t too expensive. Why don’t you take some money off my dresser, honey?” You pretend to take a few coins. You feel terrible about how you can’t wait to leave the nursing home and drive home in silence. No country music (which you hate). No random sobs from Grandma (which make you feel like crap). You feel an obligation to go to the gift-opening brunch in the morning, but you won’t. You’re tired, and you’re pretty annoyed with your family.

As you leave the nursing home, you see your family texted photos of the reception. Most of them have a caption that reads “Miss you and Grandma!” or something similar. Your least favorite is a photo of the entire family (excluding you and Grandma) with a comment from your sister that says “Wish you had decided to bring Grandma so EVERYONE could be here!” You swear you are going to give your sister the silent treatment over this, but you don’t. You hate yourself for not being more assertive.

At the end of the day, you feel guilt. Guilt for not coming through for your family. They wanted Grandma to be a part of all the wedding activities, but you couldn’t make it happen. A bigger sense of guilt comes from knowing that you put Grandma in a position that was anxiety-inducing for her.

Seeing her tears roll down her cheeks on the way home made you wonder if you should’ve listened to your gut and realized taking on the wedding was just…too much. You don’t know if you made the right call. She had some moments of joy, even if she didn’t recognize the bride as her own granddaughter. Maybe taking her to the wedding was the right thing to do. Then you think of the tears rolling down her cheeks on the ride home…It’s going to take a while to get that image out of your head.

You don’t know if you did the right thing. You think your family is still mad at you. And, really, you are mad at you. You are mad at you for not listening to you. You knew this plan was unrealistic. You didn’t have the nerve to tell your family that you spend the most time with Grandma and know her the best. You didn’t have the nerve to tell them that you should get to make the call on whether she was up for the wedding.

But you go to visit Grandma tomorrow, and she’s not mad at you. She’s back to her “normal.” You have the same conversation about the weather and your cat that you have most days.

When you mention going to the wedding yesterday, she seems to have no recollection of it. You ask about the show where they women wore the pretty dresses. She says, with a smile, that she hasn’t been to a show in decades.

When you leave, she tells you she loves you. You aren’t quite sure she knows who you are, but you never doubt that she knows exactly what she means when she says she loves you.

(Thank you to the woman who shared this story with me and allowed me to take my own liberties in creating this piece. She didn’t want her name used because she worries her family members would be upset if they came across the story.)

 

 

Positive Things in Dementialand

There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.)

Dear Friends,

I don’t know how you’re feeling lately, but the world has me a bit deflated. Hurricanes and other natural disasters. Mass shootings. Arguments about the national anthem. I could go on, but unless you live under a rock, you can probably complete your own list.

So here I am…searching for a way to be positive. Maybe you are in the same boat.

Today I’m all about the positive. Dementia itself certainly isn’t a blessing, but my journey in this field has brought me many heartfelt moments, much joy, and a lot of laughter. I need to take a moment to focus on those blessings.

Let me start here.

Last Saturday I was the emcee for our local Walk to End Alzheimer’s. Beautiful day. Great turnout. Lots of money raised. To me, one of the most impactful parts of the morning was seeing the number of people with Alzheimer’s who came out to be a part of the event. It’s not always easy for people with dementia to deal with the crowds at a walk with over 600 participants.

They do it anyway.

A gentleman with Alzheimer’s even took the mic to talk about his experiences. I struggled a bit with the echo of speaking from a microphone on the pitcher’s mound of a minor league ballpark. This guy put me to shame. His heartfelt speech left me in awe.

I’m extremely grateful for his willingness to speak. People with dementia and their families have been silenced too long. I am seeing a huge increase in the number of people who have dementia and are willing to step forward and participate in advocacy. Sure, it’d be easier to stay home and live life, but more people are choosing to put themselves out there after diagnosis and not be silenced. They do this not because their advocacy work will result in a cure that will benefit them. They know it won’t. They challenge themselves to make a difference for future generations.

To those of you who have dementia and tell others about your experiences (whether it’s on Facebook, through a blog, at a fundraising or legislative event, or sitting with friends at a coffee shop), you are awesome. Thank you for what you have taught me. I understand that I don’t know what you’re going through. Keep telling me. I’ll never fully get it—unless I have dementia in my future, but learning about your experiences makes me a more effective professional…and a better person.

Until we find a cure or prevention method, I will brag about some of the college students in our gerontology program who want to make a difference in the lives of those with dementia. Last week my online students had to watch a documentary that focused on elder abuse. I received an email at 11:00 pm last Friday night from a student who apologized for emailing me so late but really wanted me to know how disgusted she was by the elder abuse documented in the film. She said she wasn’t sure if she was going to be able to sleep because of the images that she couldn’t get out of her head. And she thanked me for exposing her to this social injustice. The documentary had reinforced that she was headed into the right field. (FYI–If you are a college student who wants to make a professor’s Friday night, thank them for giving you an assignment.)

If you worry about this terrible self-absorbed Millennials generation and fear for our future, stop. Sure, some young people have misguided priorities and don’t care about anyone except themselves. This is not unique to Millennials. (Haven’t we always felt like the current generation of 18-24 years olds was going to ruin the world—no matter what year it was?) Please know that I have college students who care about older adults and want to spend their careers making a meaningful difference in the field of gerontology.

One of our gerontology majors is currently living at a local assisted living facility as part of a Students in Residence program. He adores the residents, and they adore him. I wish you could see how this student lights up when he talks about spending time with his neighbors at the assisting living. He sees living there as a privilege, and he’s found the sense of purpose in life that he’s been missing. Forget the generation gap. We’re all just people. Some of us have just been here longer.

One of the greatest sources of encouragement I have in my life is individuals living with dementia. I know that dementia can make people disagreeable and even aggressive, but the majority of my interaction with people who have dementia is overwhelmingly positive. To be fair, I’m not the person who must insist individuals take a bath when they don’t want to and take medication they think they don’t need. When I spend time with people, the purpose is to spend time with people.

There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.)

In fact, I was recently at a nursing home where two women with Alzheimer’s sat by the nurses’ station holding hands. An employee explained that one was a mom of six with a grade school education and the other was a never married lawyer who broke gender barriers by being the first female attorney in her area. Day in and day out, they sat together holding hands and exchanging smiles. They never talked to each other (or to anyone else, for that matter), but were best friends nonetheless. I wondered if they would’ve been friends 40 years ago. They had little in common. Somehow, at this point in life, they brought each other comfort. I’m not sure I know of a more genuine friendship. Life has this funny way of bringing people together.

People with dementia tell me that I’m pretty, that I have a nice smile, and that they like my haircut. If I wear heels, I can be sure somebody is going to comment on my fancy shoes. A while back, a woman living at a memory care community literally chased me down the hall yelling, “You’re so good at your job, honey!” It took her comment to heart, even though I know she had no idea what I did for a living. I’m not discriminating about accepting compliments. In fact, I went back to the office with a little extra swagger.

They don’t care if there are three baskets of laundry in my laundry room that I haven’t had time to put away (or maybe I have had time to put them away but am just lazy). They don’t ask about that report at work that’s due in a week that I haven’t started yet. People seem to think I’m some kind of saint for spending time with people who have dementia. Au contraire. I feel like I’m tricking the world…my friends with dementia are good to me.

Every once in a while there is a comment that’s inappropriate, but that’s a rarity. A while back someone mentioned that I had gained weight. I wasn’t offended…it was a true statement delivered purely as an observation with no judgment attached. I was actually rather impressed a guy who couldn’t remember his wife’s name remembered me well enough to identify I was carrying an extra ten pounds. Good for him.

I turn 40 this week. To be clear, this is not one of the reasons I’m struggling to remain positive lately. I’m fortunate to be healthy and live an imperfect but good life. Complaining about turning 40 would be disrespectful to all the people I’ve known who never made it to 40. Last week I walked into an adult day center that I visit and found that they had made me an entire stack of homemade birthday cards. Is there anything better than a homemade card? The only problem is that there isn’t room for all of the cards of my fridge.

Finally, I am grateful for those of you who regularly read my blog. There is something that is still a bit scary about putting myself out there. Are people going to think this idea is stupid? What if they think I’m trying too hard to be funny? Worse yet, what if I accidentally say something that is misunderstood and offends my readers? I’m less confident than I sometimes seem. Thank you to those who subscribe and reach out to me with positive comments. I’d like to say I’m not dependent on the approval of others, but I would never have kept writing if it weren’t for you.

If you’ve read to this point, I thank for indulging me and should let you get on with your day. I’ve realized this blog post wasn’t really for you. It was for me. And I feel a little better.

As my mom once commented, “This world is messed up. But I’m happy to be here.”

I’m ready to ring in my 40’s.

XOXOXO,

Elaine

Nursing Homes and Guilt Traps in Dementialand

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

If your loved one is living in a nursing home and this makes you feel like an awful person, STOP. Just stop. You are not an awful person. You are a human being who is doing the best that they can.

Let’s face it. We don’t know many people who say, “I hope someday I get to live in a nursing home.” Sure, some nursing homes are better than others. Yet, even the best nursing homes are not home—even if we allow people to move in their own furniture and plaster family pictures everywhere. Bringing a recliner from home doesn’t make a place home.

If you’ve heard someone say, “I could never place my loved one in a nursing home,” and it broke your heart a little bit when you pictured your dad in his nursing home room….please know that this person has not experienced what you have. They’ve never been at a hospital when a social worker told them that their mother absolutely, positively could not go back home but needed to be out of the hospital within 24 hours. They’ve never had to have a talk with their dad about how the money the family had pooled for in-home care was depleted, and there was no way for him to continue living in his own home. They have never been in a position where a nursing home is their best—although not a great—option.

In a perfect world, nursing homes would be unnecessary. We would all live healthy, independent lives until we dropped dead suddenly at the gym at the age of 95. We’d wave goodbye to fellow gym rats as we fell off the treadmill, and that’d be that. I’d love for that to be my farewell to the world. My goal is to die very old and very suddenly—and to inconvenience no one in the process. As a gerontologist, I’m smart enough to know that’s unlikely.

Medical technology can cure us of ailments that used to kill us. We survive acute illnesses but must live with chronic ones. And people, because of this annoying issue of having to earn a living, can’t always quit their jobs to provide 24-7 care to Grandma, Grandpa, Mom, or Dad. (And, to be honest, not everyone is physically and emotionally capable of being a full-time in-home caregiver.)

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

I can’t promise him I will never get in a car accident. I can’t promise him I’ll never lose my job. And I can’t promise him that he will never live in a nursing home.

There are things in life that are out of our control.

So we sometimes must consider a nursing home. Not because we love the idea—but because this is reality and we have limited options. Few of us have the money to pay for round-the-clock home care. And our homes often aren’t equipped to provide the type of environment to keep an individual with Alzheimer’s or related dementia safe. So we check out nursing homes.

And we get a sick feeling in our stomach when we see the people who live there. They are sitting in wheelchairs by the nurses’ station. They are waiting…but for what? For dinner? For bingo? For death? Some of the staff members are smiley, pleasant, and kind. Others seem to hate their jobs. Most are rushing around without time to chat. We identify what we consider to be the best nursing home in our desired area. Maybe it has a bed available; maybe it doesn’t. And that’s the sometimes ugly, often painful process.

We move our loved one with dementia into the nursing home. Sometimes they are aware of where they are and exactly what’s happening…sometimes they aren’t. Maybe they are pleasantly confused; maybe they are terrified. Either way, we feel like the most disgusting scum on the face of the earth.

And what other people say doesn’t help. Maybe someone in your support group says something like, “I’ll never put Harold in a place like that after what a great husband he’s been.” (In fact, this is a direct quote from a support group I once visited—except his name wasn’t Harold.) Maybe if Harold had been a jackass of a husband she’d already have placed him in a nursing home?

Perhaps someone in your own family makes a backhanded comment about how you didn’t invite Mom to live in your basement bedroom. What they don’t understand is that you’d be terrified she’d fall down the steps to the basement and you can’t quit your job—and honestly don’t want to—to be home with her all day. Maybe they don’t understand that her disease will leave her unable to bathe herself and use the toilet on her own. Your own physical health makes you incapable of taking on those challenges. And you didn’t see a line of people volunteering to let her live in their spare bedroom.

Maybe your siblings weren’t anywhere to be found during this process. Maybe they weren’t willing to be involved in making a decision but showed up just in the time to tell you that you made the wrong one. Perhaps they visited Dad once in the last year and he really rose to the occasion. He had the energy of a teenager and mental sharpness he hasn’t possessed in five years…for that one day. (Yeah, that happens a lot when you’re trying to convince someone that your loved one is struggling—just like when your car doesn’t make that clunking noise when you take it to the mechanic.)

Now your siblings can’t figure out why you have turned into such a villain and are insisting on imprisoning your dad in a nursing home. It wouldn’t be so awful that they thought you were a villain if there weren’t this voice in the back of your head echoing the sentiment each time you visit the nursing home.

So stop. Just stop. You aren’t a villain. You aren’t a bad person. You are just a person—doing the best you can under circumstances that aren’t great. And you’re not alone.

Sometimes a nursing home really is the best option. It doesn’t mean we like the idea. It doesn’t mean we’re abandoning our loved one. It means that we had to make a hard decision.

And sometimes the best of our limited options isn’t great.

Dementialand and Nursing Homes and Dying OH MY! (A.K.A. When Your Presentation is Postponed Due to Lack of Interest)

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

About a month ago, I was contacted by our university’s honors program and asked to do a program for something called “Pizza with a Prof.” The professor (in this case, me) gets to choose a topic to talk about while the students listen and eat pizza. I was assured the prof would get some pizza, too. And, hey, I rarely turn down free pizza–unless it’s from Domino’s.

I thought I’d talk about some of my favorite gerontology-related topics. And–time to get excited here, folks–I put together a short Powerpoint presentation complete with a few photos of some of my favorite people, Drs. Elisabeth Kubler-Ross and Alois Alzheimer.

I chose a title for my presentation: “Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.”

For some odd reason, I thought this title would draw the interest of quite a few students. It would also show that I had a sense of humor. I anticipated that lots of students would sign up. I was wrong.

The presentation was scheduled for last Thursday. I received an email on Wednesday postponing it due to lack of interest. Only five people were planning to attend.

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

My gerontologist heart broke.

Okay, I’m exaggerating. My feelings weren’t hurt, and I didn’t take it personally. Maybe being confronted with one’s own aging process and mortality during lunch isn’t up everyone’s alley, even if the pizza is free.

My friend, Jessica, who coordinates the honors program, said maybe the day just didn’t work well for students. She said, “Your topic is awesome.” Of course, she’s one of my best friends. What is she supposed to say? Students don’t want to hear about death and nursing homes while they eat? That I only talk about totally depressing things?

I’m thinking a presentation titled “Cute Kittens and Funny Memes” might have garnered more interest. Or maybe a Powerpoint on the history of the Obama-Biden bromance.

My area of work as a gerontologist isn’t usually that interesting to people…until it’s really interesting (and relevant) to people. Dementia is boring. Dementia is sad. It’s something we don’t want to discuss. And then it all changes when someone we love has dementia. That’s when I get late night Facebook messages (which I don’t mind, by the way). That’s when people want to take me out for a glass of wine or a latte and talk dementia. Things become interesting when they matter to us. We care about issues when those issues impact us and the people that we care about.

Many of my college students are not comfortable with discussing death. I’d say it’s because they are 18 to 23 years old, but it’s not. I know people much older who are not comfortable with the topic of death. When I do presentations and cover issues related to dying, I see a certain percentage of my audience become visibly uncomfortable. Over time, I’ve learned to become comfortable with their discomfort.

I once had a lady tell me that the information I discussed on end of life issues was useful, but it was just too early in the day to think about such things. She recommended I not talk about death before 3 pm. I told her I’d take that under consideration. (In my defense, I was speaking at a “Families and End of Life” symposium that she had registered to attend.)

Aging is a topic of irrelevance to many people because they cannot wrap their mind around the idea that they will someday be old. It’s not complicated–we all get older (unless we die, of course, which I think is way worse than getting old). However, it’s difficult for most of us to fully grasp that we may someday be the older person who is limited in movement or cognition. We might be the older person who lives at a memory care community, assisted living, or nursing home.

We relate to kids because we are all former kids. In fact, I once heard a six-year-old tell a four-year-old, “I know what you are going through. I used to be four years old.”

None of us are former old people–save those of you who might have been reincarnated. I know what it’s like to be 10, 16, and 19. I don’t know what it’s like to be 79, 86, or 90. Sometimes it’s easier to pretend I’ll never get there and live in denial of the aging process. (I should add that it’s easier to accept the aging process when I see older adults who are healthy and thriving. Although they are typically not my “target” population, there are a lot of them out there.)

As much as I talk about dementia…as much as I talk to people with dementia…as much as I talk to loved ones of people with dementia…I am in denial that I could at some point have dementia. Logically I know it could happen to me, but it won’t happen to me.

When I chat with someone who has dementia, I’d like to tell you that I’m empathetic because I know that someday I could be that person, but I don’t think I really know I could be that person. If I’m being completely honest, I think a little bit of denial is protective for me in this case. If it were constantly in the back of my mind that I could experience dementia, I’m not sure I could hang out with people who have dementia.

I know that the population of individuals with dementia is a population I could join at any point, but it’s just one of those things that won’t happen to me…even though I know it could happen to me. I push any thoughts of being diagnosed with Alzheimer’s, Lewy-Body, or Frontotemporal dementia out of the realm of possibility, and I’m pretty effective at keeping those thoughts buried. I manage to think about dementia without constantly confronting the possibility that I could have dementia at some point.

I can’t judge college students for not wanting be in an environment that forces them to confront death and dementia. I don’t want to confront my own death and potential dementia either. I’m just really good at pushing it out of my mind at will.

My presentation has been rescheduled for this Wednesday. Maybe the last date happened to be a day that just didn’t work out with people’s schedules. Maybe the students planning the presentation didn’t do enough marketing the event. Or maybe I should change the title to “Who’s Going to Get the Final Rose on This Season of the Bachelor and Some Pics of Pug Puppies.”

And when they show up–BAM–switcharoo.

Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.

Let’s see how fast they can run carrying their free pizza.

 

 

 

Accepting the Gift in Dementialand

A woman once relayed to me a story about her 90-year-old mother, Ellen, who had Alzheimer’s. Ellen was at a large family Christmas gathering.  She received a shiny red gift bag with bow on it. With some prodding, she opened the bag. Inside she found a pair of cozy socks. She seemed mildly excited and thanked the gift giver. She then put the socks back in the gift bag.

About five minutes later, Ellen turned to the person on her left and thrust the gift bag onto her lap.

“For you!” she exclaimed. The woman declined the gift, reminding Ellen that it was a gift for her and that she had opened it a few minutes ago. Ellen seemed a little sad and quite confused, and she sat quietly with the bag in front of her.

Later in the evening, Ellen noticed the gift bag again, and she tried to give it to another family member. The family member told Ellen that the socks were a Christmas gift for her, and that she should take them back to the nursing home and enjoy wearing them.

Ellen’s attempts to gift her relatives continued. Each person offered the gift turned it down and explained that Ellen had opened it earlier in the evening.

At the end of the night, Ellen’s daughter drove Ellen back to the nursing home. Ellen placed the gift bag containing the socks on her nightstand.

The next day, Ellen’s daughter visited the nursing home. A nurse told her that she wasn’t quite sure if the socks were supposed to be a gift for another resident, but that she had watched Ellen wheel herself down the hallway and hand the bag to another woman with dementia.

The woman looked in the bag and broke into an excited giggle. Ellen beamed. The nurse said that two woman, both of whom struggled to communicate verbally, sat in their wheelchairs exchanging giggles and smiles for a minute or so. Then Ellen turned her wheelchair around and returned to her room with a little extra vigor (as much vigor as a 90-year-old woman with Alzheimer’s in a wheelchair could muster). The nurse said she was moved to tears at the interaction.

It occurred to Ellen’s daughter that what her mother wanted the most was to be able to give a gift. It took a bit of work for her find a willing recipient, but she finally did.

Hearing this story made me think of spending time at the nursing home where my mom worked when I was a kid. Residents were always calling me into their rooms and offering me…things. All sorts of thing. I’m not sure if I was taught this by someone or if I just did it intuitively, but I accepted the gift. Even if it was something I had no interest in, I accepted the gift.

The gift might have been a piece of candy that had been in someone’s room for several years. (Did you know that really old milk chocolate turns white?) The gift might have been the banana that someone won at Bingo. Once in a while it was something someone had made, like a knitted scarf. I remember someone giving me one of those small packs of Kleenex (already opened) that you keep in your purse. Obviously, I would have not been able to accept a gift of valuable jewelry, but by accepting the gift, when possible, I made the gift giver happy.

Dementia can take away a person’s ability to give to others like they have been able to throughout their lives. A woman in the early stages of Alzheimer’s recently told me that the hardest part of her dementia journey thus far was that family and friends could no longer count on her. More than anything, it had always been her priority to be a giving family member and friend. She felt like dementia had stolen her ability to give. She told me that when she was able to give, the people around her often declined those gifts because they didn’t want to burden her. She struggled to explain her need to give in those areas where she was still able to give.

Let’s face it. Gifts are a big part of the holidays. Most of us have bought someone a gift that we were really excited about. As an adult, I seldom think, “I can’t wait to see what Mom got me for Christmas.” I am more likely to think, “I can’t wait to see Mom open what I got her for Christmas.”

Imagine showing up at an event where everyone was giving each other gifts without a gift to give. It wasn’t an issue when we were kids, but showing up empty-handed to a gift exchange is something that causes a feeling of anxiety for most grown-ups. I actually once went to a work Christmas party where attendees were supposed to bring a gift worth less than $25 for a gift exchange. I apparently didn’t read the E-vite thoroughly enough. I considered using cash for the gift exchange, but I only had $3. I went the bathroom, contemplated my options, and snuck out the side door.

I’ve heard stories about people with dementia re-gifting or giving slightly (or not-so-slightly) used gifts. Grandma gives her daughter a pair of gloves that her daughter gave her last year. I know a lady who gave a friend a half-empty bottle of perfume for Christmas. Someone in my own family once gave a friend a tube of lipstick that had obviously been “pre-used.” You might think these gifts are less than thoughtful, but the opposite is true. People with dementia are doing the best they can with ongoing cognitive changes, and those gifts probably took many times more effort than the presents I buy for my friends and family during the holiday season.

When someone with dementia offers a gift, accept the gift. It’s that simple.

Accept the gift.

Even if the dark chocolate has turned white. Even if you don’t like bananas. It doesn’t matter.

To connect with someone, you always accept the gift.

 

Jesus, Faith, and Coping in Dementialand

A woman explained to me that her mother, who has Lewy-Body dementia, had forgotten how much she loved Jesus.

Ella, as I will call her, had always gone to a Baptist church. She wasn’t pushy or overbearing about religion, but it was important to her. She was well-respected at her church for her willingness to prepare food for funerals and help with gardening on the church grounds.

After Ella’s husband died, she relied on her faith and church family even more. When she was diagnosed with Lewy-Body dementia, she told her family that God would get her through that as well….except, as her daughter explained, it didn’t really happen like that.

First, she got in an argument with the pastor of her church. Her daughter wasn’t really sure what the argument was about, but it soured Ella on going to church. A couple of times she went but walked out in the middle of the serm0n muttering to herself. Then she stopped going altogether. People offered to drive her, but she declined. She said she had too much to do around the house.

Her daughter noticed that the “Verse of the Day” calendar that Ella kept in the bathroom had been scribbled on. Ella had crossed out a particular verse and written beside it “No!” in big green letters. Her daughter searched for the significance of why that specific verse was crossed out but came up with nothing. She found other “verses of the day” that had been ripped in half. On one verse, Ella had crossed out “God” and replaced it with “dog.”

The Bible that Ella had kept on her nightstand for years had now been pushed under her bed. When her daughter discovered it, she noticed that it appeared certain pages had been burned with a lighter. After being asked about the Bible, Ella said her daughter “might as well just throw that thing away.” I wondered aloud if Ella had some hallucinations or delusions that might have resulted in her burning her Bible. Her daughter shrugged.

Ella moved to a nursing home and had an opportunity to attend church services every Sunday. However, she had no interest. A pastor from her church (not the same one she argued with) came to visit several times but she had no interest in talking to him. She just sat staring straight ahead. She didn’t even look at him. Eventually the pastor told Ella’s daughter that he would keep Ella on the prayer list but didn’t see a purpose in continuing to visit. A few old church friends came to see and pray with her, and she told her daughter she didn’t want to those “busy bodies” around any more. She was convinced they were badmouthing her to the other members of the church.

“I don’t know if she forgot how important church and faith were to her or is mad at God,” Ella’s daughter told me. “But it breaks my heart that the thing that brought her the most comfort in her life isn’t there for her now when she needs it the most.”

I wasn’t sure what to say. Lewy-Body dementia, like other forms of dementia, makes people apathetic. Things that used to get people excited and engaged lose their impact. Often times, individuals are no longer passionate about what they used to be passionate about. I wish there was some type of exclusion for a person’s faith, spirituality, and religion, but there isn’t. Dementia can take that, too.

David Snowden wrote a book in 2002 called Aging with Grace. It’s about his research on Alzheimer’s disease using Catholic nuns as sample. There is one nun in the book who worries about forgetting God as she develops Alzheimer’s. However, she finds comfort in knowing that God won’t forget her.

I repeated this story to Ella’s daughter, hoping that it would bring her comfort as well. It didn’t.

“But I kinda do feel like God has forgotten her,” she said. “How can God allow her to get a disease that makes her forget Him?”

I didn’t have a good response. And I think that’s okay. I think she just needed a listener–not a religious expert.

This post really isn’t about religion. It’s about dementia.

Here’s my message about dementia today…

Imagine you are fighting one of the greatest battles of your life. You’re facing incredible challenges and struggles. But the coping mechanisms you’ve relied on your whole life aren’t available to you… Maybe that’s your faith. Maybe it’s not. Whatever you used to get through life is–gone. You reach for it, and it’s not there. How do you cope when what you use to cope is no longer an option?

Ella’s daughter and I did figure something out. We found an old CD of hymns and played it for Ella. I can’t say she lit up. She certainly didn’t sing, and she didn’t say much. I don’t even think she smiled. She looked over at the CD player and nodded.

“Should we play hymns again for you, Mom?” Ella’s daughter asked.

Ella responded, “Well, if you like them.”

It was something.

 

 

 

Mean Girls in Dementialand

When I was in graduate school, the movie Mean Girls came out. If you haven’t seen it, I don’t recommend putting it on your priority list, but I have to say it was thought-provoking for me–at least as thought-provoking as an American teen comedy can be.

Here’s the premise. The movie, which stars Lindsay Lohan (post-Parent Trap but pre-shoplifting), features a clique of 16-year-old girls called the Plastics, who is–go figure–really mean to other girls. The mean girls are intent on dragging other girls down rather than supporting them. If you are a female who can’t name a few mean girls from your adolescent days, you were probably living under a rock. Or maybe you were homeschooled. Or, worst of all, maybe you were a mean girl.

When I first saw this movie, I was forced to consider every group of mean girls that I considered peers. (To be fair, I don’t think I was ever a mean girl, but I know at times I did show some mean girl-type behaviors. I’m not sure you’ll find a woman who made it through adolescence that can honestly claim she never acted like a mean girl, even if she wasn’t one.) I can think of mean girls from kindergarten. I can think of mean girls from middle school, from high school, from college, from grad school.

Even as an adult, I can think of some women I’d classify as mean girls. I’ve learned to distance myself from them, but there will also be groups of women who I think of as mean girls. They are the judgmental women at the gym. They are moms who make other moms feel like bad moms. They are professionals who try to hold back other women in their careers. Unfortunately, they thrive on making other women feel inadequate, insecure, and awkward. It’s not a great thing for the female race. In fact, women who feel the need to sabotage other women in various aspects of life is–in my opinion–one of the reasons women have not achieved greater success relative to men in the workplace and politics.

As I’ve gotten older, I’ve realized that mean girls come in all types of packages. They aren’t always pretty and they aren’t always young. Just like there are wonderful people of all ages, they are challenging people of all ages. (It’s interesting that people tend to think I like all old people because I’m a gerontologist. I don’t like all old people any more than I like all young people, or all white people, or all disabled people.)

I received an email last week from a former student who now works as a nursing home administrator. She asked me to come do an educational presentation at her nursing home. I read the email twice to make sure I understood what she wanted…she wanted me to do a presentation for residents without dementia to get them to be nicer to residents with dementia. The residents without dementia tend to be annoyed and critical of the residents with dementia. They accuse them of faking confusion to get more attention from staff. They are impatient with those with dementia and even mock their behavior.

I’ve had several professional fields discuss this issue with me recently. One works at an adult day services facility. About half of the participants have dementia, whereas the other half do not. The people without dementia like to play cards during the day. The people with dementia sometimes try to play and often get scolded when they can’t follow the rules of the game. The people without dementia have started telling the people with dementia that they can’t play–and not in a very nice way. One participant recently told another (who has Alzheimer’s) that she needed to get her act together if she was going to play cards with the group.

“It’s like a Mean Girls sequel,” the employee told me. “You could call it Elder Mean Girls.

It’s not that men are immune to this type of behavior. It’s just that the vast majority of individuals in nursing homes, assisted livings, and adult day service settings are female. Also, men who spend time in these settings tend to keep to themselves a bit more.

I recently visited one of my Gerontology majors who is interning at an assisted living. She gave me a tour of the place and pointed at a group of women gathered in a common area drinking coffee.

“That’s the cool club,” she said quietly. “You gotta live here a while and prove yourself before you get an invite. And if you’re not sharp, they don’t want a thing to do with you.”

The cool club. Really? I asked how they treat residents with dementia. The intern told me that the cool club does a lot of eye-rolling around people with dementia. And then they just ignore them until they go away.

“And they asked the activity director if she could not tell the people with dementia about certain activities, like cooking class,” she shared. The cool club doesn’t think people with dementia belong in cooking class. The cool club worries that they will mess up the recipes.

I’d like to think that these people really aren’t mean. I’d like to think it’s a matter of education. If you don’t have a knowledge of dementia, I can understand how it’d be frustrating to live with individuals who have Alzheimer’s or other types of dementia. On some level, there’s probably a need to separate yourself from those individuals–because it’s scary to think you’re like them.

Most of my career centers around two different populations. The first is college students. I’m a college professor. I spend a lot of time with 18 to 23 year olds. Sure, some of them are entitled. Some of them are huge pains. But a lot of them are pretty awesome. The other group I work with is older adults (particularly those with dementia). And, you know, some of them are stubborn and difficult. Some might be set in their ways and inflexible. However, I get to hang out with a lot of really cool older people.

College students and older adults. Over the years, I’ve come to realize they’re really not that different. College students are in a time of transition. They move away from their families. They live in the residence halls. They establish a new sense of identity. New friends. New social network. They have to adjust to assigned roommates and shared living space. They have to eat when the dining center is open.

Older adults are sometimes in a similar time of transition. They may change living situations. Maybe they move to an assisted living or a nursing home. Maybe they downsize and buy a condo that’s part of a retirement community. They adjust to a new living environment. Maybe new roommates. A new routine. And they re-develop their sense of self.

I’d like to say that college students leave their cliques behind. I’d like to say that mean girls are no longer mean girls, but maybe that’s not that case. Maybe mean girls just regroup and form new bully gangs. Maybe sixty years later they will move to nursing homes and the pattern will repeat. I want to think mean girls grow out of being mean girls, but maybe some of them don’t.

When I was younger, I let mean girls make me feel bad about myself. I was too tall. I was too smart. Nerdy. I wore sweatpants and a jersey everyday. I had a mullet which my mother still refers to as “that cute haircut that was short in the front and longer in the back.” I was a teacher’s pet. I liked Bette Midler and listened continuously to the Beaches soundtrack. I looked like a Fraggle from Fraggle Rock. Those are things that middle school and high school mean girls target. Maybe, as I get older, mean girls will target me because I have dementia….because that might make me different from them. We pick on people who are different from us when we don’t make an effort to understand those differences.

I don’t claim to be able to solve the mean girl issue. However, I do think one of the best ways to get people to be nicer to other people is to educate them. It’s hard to be mean to people when you understand where they’re coming from. We tend to be critical of people we don’t understand. We tend to be impatient when we don’t understand what’s causing people’s behavior.

If you have a daughter (or a son) and don’t want them to grow up to be a jerk, make them have conversations with all types of people. (Yeah, I know that sounds like a contradiction to the whole “Don’t talk to strangers” thing.) The more we talk to people who are different, the more we realize that they aren’t that different. The more we realize that people aren’t so different from us inside, the more we are motivated to be accepting.

I don’t know if I can get residents without dementia to be nicer to residents with dementia. My idea is to do a simulation–so they get a small taste of what dementia is like. I have no idea if it will work, but it’s my little contribution to fight mean girls.

On a related note, if you are a tall, smart, nerdy adolescent girl who enjoys wearing sweatpants and looks a bit like a Fraggle, stop listening to mean girls. Don’t apologize for being your teachers’ favorite student. Bette Midler has a fantastic voice, and you are going to be just fine.

 

 

Looking for a Sign in Dementialand (Or When You Just Gotta Make the Call)

After one of my friends excitedly told me she was pregnant, she launched into a long monologue about whether or not it was the right time to have a baby. She explained that she and her husband had been talking for years about when the right time to have a child might be. First, she was in a grad school. Then, he got a promotion and had to do a lot of traveling for work. Just when they thought the timing might be right, her mom was diagnosed with cancer.

She told me, “We came to the conclusion that maybe there is no exact right time to do it. Maybe you just have to make a decision.”

Those words stuck with me. When I think about my life, there have not been definitive signs telling me when it’s time to make a life decision or major change. If I would’ve waited for those signs, I’d still be sitting there–in the same life stage I was in many years ago. At some point, you just have to make a decision and move forward.

I remember having to make a series of career decisions in the couple of years after finishing graduate school. I went on a job interview at the university where I currently work as a faculty member. I wanted a sign that I should take the job if I was offered it.

I’m not sure what I would’ve considered a sign. Perhaps a carrier pigeon that would drop me a note telling me I should work at the university. Maybe a fortune cookie at dinner that said, “Take the freaking job, Elaine.” I would’ve settled for a well-done piece of toast with burn marks in the shape of the Northern Iowa mascot (which is an adorable Panther named TC who I’ve become quite close with over the past nine years, by the way). I got nothing. No signs. No signals. In the end, I just had to make a decision.

Maybe it’s getting engaged. Maybe it’s having a baby. Perhaps it’s going back to school or changing jobs. It could be something less monumental but potentially life-changing, like starting a fitness program or registering for your first 5k. You can always find a reason to not do it. There’s always something that makes the timing not exactly right. Sometimes you need to do it anyway. God, the Universe, or whatever power you believe in will not present you with the perfect time and circumstances to do anything. If we wait for perfect, we’ll always stand still.

In the past week, I’ve been asked the same question three times. The question is: How do you know when it’s time for your loved one to move to a nursing home?

A typical response to this question is, “You’ll know when the time is right.” I’m not sure why everyone says this, except that perhaps it’s comforting to think that God or the universe will put a billboard in your life to signal that you should consider a nursing home for someone you care about. As comforting as this might be, it doesn’t always happen.

A woman approached me at an event last week and asked if there was any “test” a doctor or psychologist could give her mom that would give her a definitive answer as to whether or not she should live in a nursing home. After talking to this woman a bit, I realized that she knew the best choice for her mom at this point was probably a nursing home. She had information that could never be assessed by a test, and she had more knowledge of her mom than any doctor or psychologist could ever have. And, yet, she wanted a checked box that signaled that it was time for mom to move to a nursing home.

I can’t check a box that indicates it’s time for nursing home care. First of all, I don’t know your mom, your dad, your grandparents, your sibling, or your partner. You are the person who has the information to make this decision. You may like the idea of a “professional” giving you a definitive answer, but it doesn’t work that way. I get really annoyed with people who answer questions with questions, but if you ask me if your loved one should live in a nursing home, I’m likely to ask what you think. Then I generally just repeat this back to you. Sometimes I rephrase it, and sometimes I don’t even go to the trouble. Later on you thank me for my brilliant advice when I never gave you any advice. You had the answer all along.

Second, decisions about nursing homes are about more than the person who needs care. People with dementia do not exist in isolation. You must consider the health, social support, and knowledge of family members and friends who provide care at home. We hate to make decisions based on finances, but money impacts the choice to consider nursing home care. You even have to consider issues like the layout of one’s home (e.g., Is it accessible?). I can ask you a series of questions about your loved one’s health in order to assess whether or not a nursing home might be the right choice, but that’s not the whole picture. Life ain’t that simple. Sorry, folks.

When I worked with individuals in hospice care, I had a few conversations about the choices they had to make throughout their illnesses in regards to stopping life-saving treatment (particularly chemo). One woman told me that she was looking for a sign that it was time to give up on chemo. If she had some sign, she could tell her family that the time had come to stop. However, that sign never came. She had to make a decision, and it was more difficult to tell her family because it was her choice. There was no real signal that the timing was right to forget chemo and call hospice. She just had to make a decision. It was her life, her choice.

It’s a little different with dementia. Obviously, as dementia progresses it becomes more unlikely that people can make their own choices about care. Family members and friends step in. Sometimes people with dementia and their loved ones are proactive enough to have discussions years before these difficult choices must be made. Often they are not.

We often anticipate that these decisions will be made based solely on the health of the person with dementia, but they are not. I know a man who cared for his wife with Alzheimer’s in their home until he fell and broke his hip while cleaning out the gutters. It was at this point that she moved to a nursing home. He felt guilty that this decision was made based on him and not her, but that’s how things often work. Another woman who had Alzheimer’s received in-home care for several hours a day for a few years. When her money ran out, she went on state aid and moved to a nursing home. Her family felt awful that they didn’t have enough money to pitch in and keep her at home. Love doesn’t pay the bills. (If it did, the world would be a different place.)

Quite often, a person with dementia lands in a nursing home as a result of a crisis. Maybe they fall and injure themselves. Perhaps they end up wandering around town, confused and scared, and their family realizes they can’t provide supervision at home anymore. Unfortunately, nursing home admissions in crisis are not ideal. They are stressful for the person with dementia, as well as for the family. Also, when we must admit someone to a nursing home on very short notice, we seldom get that person into our first choice of nursing home. I encourage families to make a decision before a crisis happens.

There is no pre-determined right time to get married, have a baby, go back to school, or change jobs. You don’t have a prescribed timeline for your life. There is not an exact right time to choose a nursing home for a loved one. Sometimes there’s just a difficult decision.

A carrier pigeon isn’t going to drop you a note, and sometimes fortune cookies just aren’t that helpful. And, as a professional in the field, I’ll certainly chat with you about it, but I can’t make the decisions for you. In the end, you just have to make the call.

And not look back.