Big Stick People and Little Stick People in Dementialand

Someone I met recently had a stroke years ago, and doctors are now telling her she has dementia. She lives on her own, and within the walls of her apartment, she feels quite capable.

She can cook. She can clean. She takes care of her cat. She can even work her own DVR. But things take her a bit longer. She says she messes up a lot.

One day it took her several minutes to figure out which bottle on the ledge of her bathtub was the shampoo. That’s didn’t bother her though–because she wasn’t in a hurry and she figured it out eventually.

When she leaves the house, her anxiety level increases. Doing tasks slowly and messing up is fine at home, but it’s a bigger deal in public.

One day she walked to a local coffee shop and struggled to pay for her latte. She thought she’d pay cash but had difficulty deciding if she had enough money. Then she figured she’d use her debit cared but couldn’t process which, of all the cards in her wallet, was the debit card.

In the end, she paid for her coffee with her card and all was fine.

That’s not the way she saw the situation, however. She felt she had inconvenienced the several people in line behind her. She knew they had to have been frustrated by her, and she swore she could hear a few of them sighing behind her back. As she sat down with her coffee, she thought some of them might be shooting her dirty looks.

She wished she had stayed home.

She decided she should start going out less often, and maybe only during hours when places wouldn’t be crowded.

People know themselves, and I didn’t want to judge whether or not her decision to stay home more was a good one. And I didn’t necessarily think venturing out during less busy times was a bad idea.

But what bothered me was that these thoughts were not based on the progression of dementia. Instead, they were based on her perceptions of others’ reactions to her dementia.

She felt she frustrated and annoyed people. She thought they were judging her for being slow. She perceived herself as a nuisance who was in the way.

I wasn’t with her, so I can’t say for sure, but my guess is that the people in line behind her at the coffee shop didn’t notice her in the way she perceived that they did. She explained the scene as if she was the central character, if you will, and everything that happened in the coffee shop at that moment was focused on her inability to promptly pay for her coffee.

I just don’t buy it.

In those situations where you feel embarrassment or shame, when you feel like everyone is judging your shortcomings, when you feel like your faux pas or misstep is the central plot in a scene, remember this….

You are the big stick figure in your every scene. No matter where you are in life, you are the big stick figure and all the other characters are little stick figures. You see what you do as being bigger than what everyone else is doing because you see yourself as bigger. It’s just how humans see the world.

It’s not because you’re arrogant or self-important. We all see ourselves as the big stick figure because we can only see the world from our own perspective. We are aware of what we are doing, but we are less aware of what others are doing because they’re the little stick figures.

As the woman with dementia tried to pay at the coffee shop, she saw herself as the big stick figure. She thought everyone was aware of what she perceived as incompetence because she was the big stick figure and it would be impossible to not notice her.

Of course, she wasn’t the big stick figure to the people in line behind her. She was the little stick figure to their big stick figure. They might have been noticing that their pants didn’t fit right or that they wanted whipped cream but knew they were on a diet or worrying that they had lipstick on their teeth, but they probably weren’t taking that much notice of her.

To think people noticed her incompetence was to assume that people noticed her…and perhaps that is giving us too much credit when people spend most of their time noticing what they are doing.

At most, she was a role player, or a supporting actor, in someone else’s scene.

Let’s say I happened to be behind her in line at the coffee shop that day. I hope that I would’ve been patient and maybe even helpful, but let’s say I was annoyed. Still…I maintain that I’m the big stick figure and she’s the little stick figure in my scene. If my husband had asked how my morning was, I might have responded with something like this:

Well, I was running behind for that 8:30 meeting and it was taking forever to drive across town because I got stopped at every red light but of course I had to stop for my coffee. Unfortunately this woman ahead of me in line was taking forever to pay for her coffee and I was getting more and more anxious that everyone at my meeting was going to be passive-aggressive that I was late so I kept trying to will that lady to speed it up.

You see how the woman with dementia isn’t the star of the story? She’s not the big stick figure. You know who the big stick figure is in my story? It’s me. It’s all about me. Because I’m the one telling the story.

Whether you are a person living with dementia or a care partner who might feel like the world is scrutinizing you when you assist your love one in the grocery store or a person like me who does embarrassing things in public regularly, keep in mind that you’re only the big stick person in your own head.

You are a little stick figure to the rest of the world.

Anticipatory Grief in Dementialand

Anticipatory grief.

I first learned the term when I was in graduate school. I threw it around a lot when I was volunteering for hospice. Now that I work with families impacted with dementia I apply the term frequently.

It could be described as the emotional response to the pending death of a loved one–but I know people who have a loved one with dementia that have experienced anticipatory grief when death was still years away. It’s seeing someone you care about slip away little by little. It’s looking at someone right in front of you who doesn’t recognize your presence–and you know they never will again.

I’ve heard Alzheimer’s called the “long goodbye.”

That’s anticipatory grief.

Sometimes we think an extended period of anticipatory grief means that we will be prepared for a death. But I don’t buy that. Sure, maybe there’s some relief when we’ve been processing the loss for some time. Yet we can’t pay our dues with anticipatory grief…grief after a death still comes for us.

We grieve our loved ones when we lose parts of who they were–when they no longer recognize us, when the lose the ability to communicate verbally, when they can no longer drive, cook, or mow the yard. We grieve bit by bit. You’d think we’d be all out of grief at some point, but it doesn’t work that way. Grief is a lot like love (and closely related to it). It’s pretty limitless.

It’s okay–and normal–to grieve someone who is living.

But we can continue to enjoy the moment even when we are experiencing anticipatory grief. We can grieve what our loved one has lost while appreciating what is left. Grieving someone doesn’t mean we finalize our relationship with them. It doesn’t mean we write them off.

It just means we mourn what we’ve already lost while preparing for more loss. In our heads, we may be composing eulogies and visualizing funerals. And many of us live like that for a long time. We get through by hoping for a “better” day even when we know someone isn’t getting better.

A few months ago, older gentlemen who attended a dementia support group I spoke at asked me if it was normal that he visually rehearsed his wife’s death. At night, he would sit in his recliner and practice what he wanted to say to her as she neared the end. He had found some CDs he’d like to play for her in her final hours. He’d written a short script of what he’d say when he called family to let them know she was gone. He knew exactly who he wanted to stay at his house in the days after she died (and who he didn’t).

“That’s morbid, isn’t it?” he asked me.

In order for something to be morbid, it has to be abnormal and unhealthy. (I know this because I just looked up the definition of morbid.) And this isn’t abnormal or unhealthy.

Death, like birth, is a part of life. And we rehearse births in our society. We decide who we would like to attend a birth. I know plenty of couples who have had “birth playlists.” Mother are encouraged to make birth plans. We anticipate birth and we make a plan.

Why should death be any different?

Someone who lost their wife decades earlier–and was happily remarried–once told me that there is no finish line to grief. Sure, you develop a new sense of normal and you do your best to move forward, but the grief doesn’t have a definitive end date.

Perhaps grief doesn’t always have a clear start line either.

Tired Brains in Dementialand

This blog post was a struggle to write.

It usually takes me about 45 minutes to complete a post. Today I’ve been sitting here for well over two hours. And I am on the second paragraph.

You see, it’s the week of finals at the university where I work. It’s stressful for college students, of course. It’s also stressful for professors.

My brain is tired.

I considered taking a week off from writing, but I’m pretty committed to releasing a blog post every Monday morning. I’ve started this post about seven times. Maybe more. I keep writing a few paragraphs that just don’t work…and then I delete them and start again.

There’s also been a lot of staring at the carpet and thinking I should get up and get a snack but not having the motivation to actually do so.

I can’t decide what I want to write about. I started a post about end-of-life decision making and dementia. It’s an important topic, but I decided it was too much of a downer for me to tackle today. I’ll save it for another week. I can’t do it justice right now.

Then I started a post that was intended to be more light-hearted and positive. However, I couldn’t pull off light-hearted and positive today. I just didn’t have it in me. You get it, right?

Most weeks I write easily. I enjoy the process. I sit here in our family room with my laptop on my lap and our dogs by my side—and it’s fun. I look forward to the time I spend writing.

Today is different.

My brain is just exhausted.

Last week was full of emails from students who aren’t pleased with their grades. Have you heard the term “grade-grubbing?” I have sent at least ten emails in the last three days explaining that grades aren’t negotiable. And no….I will not create an extra credit opportunity just for you because you didn’t complete your assignments during the course.

It was full of catching up on evaluating student essays. It was full of students panicking because they are not yet registered for spring classes. It was full of all the typical end of semester stuff. Nothing horrible has happened…just a series of very, very minor crises that must be dealt with.

I’m not complaining. It’s my job, and I like my job. I work with some of the most inspiring, grateful, and promising young people. And you can’t be a professor if you can’t handle finals week. This is not me asking for sympathy or pity. All is good.

More than anything, this is a reminder of how compromised the brain can be when it’s tired. Right now, everything is harder than it should be. Last night I was watching TV and realized I had no idea what I was even watching, even though I had been “watching” for 20 minutes. I also tried to open a new bottle of facewash and couldn’t get the lid off. I just gave up and decided I didn’t really need to wash my face.

I’m also indecisive. The other day I stood in the kitchen staring at the countertop because I couldn’t decide what to have for lunch. I just wanted someone to give me a peanut butter and jelly sandwich on a paper plate. Making a decision just seemed to take more mental energy than I could muster.

This is a reminder of what my friends with dementia struggle with on a much larger scale than I do.

The dementia brain has to work hard to accomplish tasks that most of us consider to be mindless. To scroll Facebook. To carry on a conversation. To wrap a holiday gift. To make coffee. To shower and get dressed.

Those of us who care about people with dementia sometimes place unnecessary stresses on the dementia brain. We don’t introduce ourselves when we enter a room—forcing the dementia brain to waste precious mental energy figuring out who we are. We love to quiz people. We ask Grandma if she knows what holiday is coming up. We ask her if she remembers how many grandkids she has. The purpose of the quizzing is to make us feel better. I mean, if Grandma knows Christmas is coming, she’s doing okay, right?

We take Mom to the grocery store. It’s a bit chaotic—but we don’t think it’s a big deal. Later in the day, she gets a bit testy. She can’t tell you she’s tired. We just know she’s “being difficult.” We don’t make the connection that the trip to the store was just too much. And now her brain is just—-done.

We all know that feeling of being mentally exhausted. We all know that feeling of having a really hard day when nothing seems to go right…and then having someone ask you to do something very simple…something that would be no big deal 99% of the time. And you just can’t handle it. Your brain is tired. Maybe you say something you regret. Maybe you have a minor (or major) meltdown. You get teary. Perhaps you want to punch something. Or someone.

It’s just that the threshold is lower for people who have dementia. The dementia brain takes longer to regain the mental energy it takes to do even simple tasks. And instead of us realizing the person’s brain is fatigued, we get frustrated and say they are “giving us a hard time.” In reality, they are having a hard time.

I can’t say that I know what the brain fatigue that comes along with dementia is like. I know what it’s like to have “normal” mental exhaustion—and I understand how that mental exhaustion can compromise my thought processes, my mood, my ability to converse, my patience… Yet, I know that my brain will recover after the crazy rush of the end of the semester and a little bit of rest.

The dementia brain also functions better with rest—except it needs more rest than the typical brain to function at its best possible level and its best possible level isn’t what it was before the onset of symptoms. The compromised mental energy that comes with dementia isn’t something we can change. It’s something with which we have to cope. And we can do so by structuring the days of people with dementia in a way that provides adequate rest and helping them to avoid unnecessary mental stressors. Sometimes that means keeping our visits with them shorter.

I have told many people with dementia that their mental energy becomes more limited and precious as dementia progress. They get to decide how to spend that mental energy.

A woman that I know who has younger-onset Alzheimer’s recently spent a few hours each day for a week writing and addressing holiday cards. This activity was tiring for her, as she expected. But it was worth it. Sending personal holiday cards to friends and family is an important tradition for her, and she wasn’t willing to give it up, even if it meant she’d be able to accomplish little the rest of the day. Good for her.

In writing this post, my own brain stalled a few times, and I googled “dementia mental fatigue” (and a few differently worded terms) to see if I could find anything to stimulate my thoughts on the topic. Unfortunately, the top few hits referred me back to my own previous blog posts. This reinforced to me that fatigue in the dementia brain is a subject we aren’t giving enough attention. I have no idea why mental exhaustion isn’t discussed more frequently. We are missing the boat on this one, folks.

Dementia isn’t just about memory loss. (I don’t make any money from writing this blog, but I’m beginning to wish I made a dollar each time I could work that exact sentence into a post. I feel like a dang broken record sometimes.)

Here is the take home message…. Sometimes when we spend time with people who have dementia, we think they just aren’t trying. We think they’ve given up. We think they don’t care about their interactions with us. Sometimes we even think that they’re plain rude.

The truth is that their brains are compromised and have to work much harder than a typical brain in everyday life. They are trying. And they are tired.

So there it is–the best post my finals week brain could muster.

Please forgive any typos or grammatical errors.

Loving Two Women in Dementialand

A few years ago I met a couple who made me think a bit differently life after loss.

Art had been married to his wife, Ann, for almost forty years when she was diagnosed with Alzheimer’s. After her diagnosis, he learned everything he could about her disease. He read articles online. He ordered books from Amazon. He watched YouTube videos. He joined a couple of support groups.

When his wife moved to a nursing home, he was a constant presence there. Not only did he spend time with Ann, he dedicated himself to visiting with residents who didn’t have family and friends. When I asked him how many hours he spent each week at the nursing home, he shrugged. Maybe 30?

“I didn’t have anywhere else to be,” he told me.

At some point, he was approached by the local chapter of the Alzheimer’s Association, and he began volunteering at their fundraising events. He even overcame his lifelong fear of public speaking to tell Ann’s story.

Late one night, he got a call from the nursing home that Ann had passed away. Although she was approaching the end stage of Alzheimer’s, her death came earlier than Art expected. He will never forgive himself for not being with her.

Yet, life continued for Art. And it continued much like it did while Ann was alive. He still spent time at the nursing home to see his friends (maybe “only” 20 hours a week). He still volunteered with the Alzheimer’s Association. He even continued to attend support groups two or three evenings a week.

“I’m retired,” he said to me. “What am I supposed to do? Watch soap operas? I don’t even like golfing.”

Fair enough.

Then…one day about four months after Ann passed away…without meaning to…Art met someone.

It was the sister of an old friend. Her name was Juanita. He didn’t intend to start dating her. In fact, he never saw himself in a relationship after Ann’s death. But he liked Juanita.

He continued to go to the nursing home. He expanded his volunteer role with the Alzheimer’s Association. He even became a leader for one of his support groups. And he was dating Juanita.

Often, Juanita went to the nursing home with him. She had to, Art said, because he wanted to introduce her to his friends. Juanita even started volunteering with the Alzheimer’s Association. Eight months after Ann’s death, Juanita wore a shirt with Ann’s name on it and marched in her honor at the Memory Walk.

It was obvious to me that Art wasn’t “over” (as if that’s even a thing when you lose a spouse….) Ann’s death when he met Juanita. It seemed like has unwilling to give up pieces of his life related to Ann–the nursing home, the support groups, the Alzheimer’s Association. And Juanita jumped right in. They were married less than a year after Ann’s death. Instead of gifts, they suggested donations to the Alzheimer’s Association.

As I’m learning, life isn’t black and white. It’s not like your spouse dies, you grieve, and then you wake up one morning having completed your grief and ready to date.

In talking to Art, it was very apparent that he loved two women–one dead and one living. I’m sure this makes some people uncomfortable. I’m sure there are many women who would not want to marry a man still in love with his deceased wife.

Juanita has a different perspective.

She wants him to keep Ann’s pictures around the house. He took off the wedding ring from his first marriage, and Juanita put it in a shadow box along with a picture of Ann on her wedding day.

At Art’s request, Juanita made Ann’s favorite meal on her birthday. They even set a place for her at the table that night. (I’m going to be honest here–I might have cringed just a bit when they told me about this.)

Art also tells me that Juanita was about the same size as Ann. He took some of Ann’s clothes to Goodwill when Juanita moved in, but Juanita kept most of the fancier blouses and sweaters. (And–yeah–I did cringe here as well.)

“I bet you think it’s odd I wear her clothes,” said Juanita. I know that I was supposed to jump in and say I didn’t think it was odd….but I really wasn’t sure….so I didn’t say anything.

When someone dies, their spouse doesn’t stop loving them. There’s a difference between living in the past and continuing to love someone who’s gone. Juanita doesn’t see Art as living in the past–and she respects that he still loves Ann.

In a way, I feel sorry that Juanita–who has never been married before–has to share her husband with a woman who is deceased. She visits the nursing home and listens to everyone reminisce about Ann. She goes to Alzheimer’s Association events and listens to Art speak about how Alzheimer’s stole his wife. And once a week she watches Art walk out to the door to go to a support group, where he will focus on Ann’s journey with dementia.

Truth be told, there’s a part of me that is uncomfortable that so much of his focus is still on Ann.

But it’s not about me.

I watch Art and Juanita together, and they seem happy. If Juanita is jealous or resentful that Art’s life still seems to centers on Ann and Alzheimer’s, she doesn’t show it.

“I’m lucky or maybe tricky–I’ve tricked two wonderful women into marrying me,” Art said, and Juanita laughs.

“And I’m lucky Ann trained him to be such a great husband,” Juanita tells me.

As they walk away holding hands, I notice they are both wearing their Memory Walk t-shirts with “Ann’s Army” and a giant photo of Ann on the back. I can’t help but think Juanita looks more than a little like Ann.

There really are three people in this marriage, I think to myself.

I can’t decide if the whole thing is totally weird or absolutely wonderful.

Maybe it’s both.

I allow my mind to wander, just for a second, and think about whether or not I could be in a relationship with a guy like Art. Could I set a place for my husband’s dead wife at dinner? Could I wear my husband’s dead wife’s cardigans? Or look at photos of her all over the house?

Then I shut down that internal conversation.

Because I’m not Juanita.

And it doesn’t matter if I could do it.

Juanita is doing it.

Last I heard, she and Art had started teaching a monthly cooking class at the nursing home where Ann lived. They continue to raise money for the Alzheimer’s Association in Ann’s name, and recently Juanita hired an artist to paint a large portrait of Ann to put over the mantle.

Love and Renovations in Dementialand (aka This One is For the Dementia Spouses)

Romance isn’t really my genre, but I’m gonna tell you love stories today. In fact, I’m going to talk about marriage.

In the US, about 40% to 50% of marriages end in divorce, and the percentage increases in subsequent marriages. Furthermore, the divorce rate among the over 50 crowd have doubled in the past few decades. It’s tripled among those over 65. (Sources: Pew Research Center & National Council on Family Relations)

You’d guess, by looking at those numbers, that Americans—particularly older Americans—don’t have great marriages. In particular, data suggest that our Baby Boomers aren’t that good at marriage.

However, I have a front row seat to some marriages that remind me that love isn’t just what you see in romantic comedies. Love isn’t about having a perfect life or a perfect marriage—which is a good thing because (despite what you might assume from a Facebook or Insta scroll) none of us have either.

A few weeks ago, I was talking to a gentleman whose wife has dementia. In the middle of the conversation, he drops this crazy statement matter-of-factly: “Moving wasn’t such a big deal for her because I got the same countertops and all.”

He continued for a few seconds until I interrupted.

“Wait. Stop. What about the countertops?” I asked. “You did what?”

He explained to me that he worried his wife would be stressed by transitioning to a new environment, so he completely re-did the kitchen in their new home to resemble the kitchen in their old home. Countertops. Cabinets. Backsplash.

To me, this was much more impressive than any renovation by Chip and Joanna Gaines. I had a moment where I fantasized about starting a new HGTV show called Dementia Reno, where people with dementia would move and I’d redo their new homes to look like their old homes. (Then I remembered that I once tried to use spray paint to paint my oven hood. Yeah, I know. You can’t do that.)

This man didn’t seem to think this was a big deal. He told me about it as if every guy who has a wife with dementia does a kitchen reno so his wife has less anxiety and confusion about their new home.

I do understand that not everyone has the resources to do this. Finances matter when it comes to dementia. More money means more options. This man had the money, he had the option, and he made it happen.

He didn’t see himself as a hero. He was just trying to make life a little bit easier for his wife. It worked.

I meet people like this all the time. Sometimes we use the words caregiver, care partner, or carer—but many folks don’t identify with those terms. In fact, I’ve done seminars for caregivers and struggled to attract a crowd. People tell me they care for their spouses because…well…they love them, but they don’t label themselves as anything other than a husband or wife. And they’re just doing what husbands and wives do.

I know a man who struggled to find a way to engage his wife as her dementia progressed…until he made a work desk and placed it in their basement. Every morning she goes to “work” and he gives her a task. Maybe it’s putting stickers on envelopes. Or filing. Or signing letters. A former secretary, she has a sense of purpose again. He was very excited about the Black Friday sale at Office Depot. He presented her with a new office chair as a reward for her hard work. He’s not sure if she knows he is her husband, but she says he is the best boss she’s ever had.

“Tell me when it’s boss’s day,” she once said. “I’ll make you cookies.”

I know a woman who drives her husband around in the Iowa countryside for four hours every Sunday. He loves to visit his old farm, which is a couple hours from where they live now. The people who now live at the farm let him walk around the property. Sometimes he thinks he still farms there. His wife says it’s the only time he seems genuinely happy lately. She’ll do it every week until it no longer brings him pleasure.

There’s also a woman in our community who has been known to “stalk” her husband, who has dementia, when he goes on walks. He enjoys solitary walks, but she worries he’ll get confused and not be able to make it home. She follows about an eighth of a mile behind. If he should turn around, she ducks behind a tree or bush. She told me she occasionally worries some observer will call the police.

I asked this woman how long she and her husband had been married. She surprised me when she told me they were married only five years ago—after he had starting showing dementia symptoms. She said she worried he’d forget her earlier in his disease process since they’d been married a shorter time.

“I’ve been wondering,” she said to me, “Can a person still love you when they don’t know who are you?”

I’ve been asked this question before, and I always answer with a definitive yes.

I once heard a man with dementia tell his wife, “I don’t think I’ve met you before, but you are always so nice to me.”

Maybe there are times when the head doesn’t remember but the heart does.

So this is for all of my dementia spouses…

I want you to know that I appreciate what you are doing day in and day out.

I know you get tired. And I know you get frustrated. But you get out of bed every single day and roll with the crazy life that dementia creates. Sometimes you laugh and sometimes you cry—maybe you’ve done both at the same time. You work really hard to create moments of joy that your spouse may or may not remember, but you think it’s worth it all the same. And you’re right.

Some of you have spouses who are able to thank you. Some of you have spouses who cannot show their gratitude. If your spouse can’t thank you, I want to thank you on their behalf.

Maybe you’ve had to learn new skills. Perhaps your spouse always managed the finances, and now it’s in your lap. Maybe your spouse was the cook, and now you are learning how to throw together crockpot meals and use the George Foreman. Or perhaps you had to take over mowing the grass, managing car repairs, or changing the cat litter. It’s not only that there’s an emotional toll…there’s really just a lot to do. Your load is heavier.

A guy once told me he never knew how much his wife accomplished in a day until she was diagnosed with Alzheimer’s and was unable to do what she had done for the previous thirty years. He told me that picking up the slack was a big challenge for him.

“Dementia doubled my chores,” one woman told me.

Stop. Take a second right now. Pat yourself on the back for the added responsibilities that you’ve mastered.

And—if your spouse isn’t able to buy you a gift this holiday season, do me a favor and buy yourself a little something. If you don’t have the time to go shopping, no worries. I mean, it’s Cyber Monday. They are practically giving stuff away online. And you’re reading this blog, so I know you know how to use the internet. Do it now. (Well, after you’re done reading this.)

If your spouse is in a nursing home or memory care community, stop feeling guilty you aren’t there more. If you raised your voice at your spouse recently because they asked the same question for the millionth time, stop beating yourself up and move on. If you’ve made what you consider to be a poor decision in regard to your spouse’s care, let it go. And if you let your frustration get the best of you (which we all have), take a deep breath. It’s okay.

You didn’t have a perfect marriage before, and you don’t have one now, but you get yourself out of bed each and every morning and continue to do the best you can in circumstances that you would have not chosen.

And that’s enough.

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

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.

Why People Give Gifts in Dementialand

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.