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 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 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.

 

Christmas When It’s Not Christmas in Dementialand (Or My Shout-Out to Nana, the Winner for Christmas Spirit)

First of all, Welcome to Dementialand will be off for the next two weeks due to the holiday. I say this as if it’s been a corporate decision–rather than just a woman sitting on a couch deciding she’d like a little break for Christmas and the New Year. I’ll be back in 2018.

In the meantime, a bittersweet story that I hope you perceive to be a bit more sweet than bitter.

I was approached by a woman at a speaking engagement in January of 2017. She told me that her grandmother, who she called Nana, lived in a nursing home and had recently entered hospice care. Nana was bedbound due to Alzheimer’s and had stopped recognizing family members. The only word that came out of her mouth on most days was “No.” What bothered this woman the most was that Nana just seemed sad and distant.

The woman explained to me that Nana had always loved everything about Christmas. She made Christmas cut-out cookies that were famous in their small town. She rounded up neighbors and went caroling. For many years, she coordinated the Christmas pageant at their church. Perhaps most impressively, Nana had the absolute best collection of Christmas sweaters–many of them with glitter and sequins. If there were a prize for Christmas spirit, Nana would have won it. As her granddaughter said proudly, “My Nana was Christmas’s #1 fan.”

A few weeks earlier, the family had visited Nana on Christmas Day. Like usual, Nana was in her bed, seemingly staring at nothing, when one of her great-grandsons knelt beside her and said, “Nana, it’s Christmas.”

Nana’s eyes brightened. “It is?” she said incredulously, like a small child.

They gave her a gift. She couldn’t unwrap it, but she watched in awe as a family member unwrapped it for her. It was a pair of fuzzy socks. Someone held them in front of her, and she petted them as if she were petting a kitten.

“It’s so beautiful,” she said.

Her family decided to sing some Christmas carols. To their surprise, Nana joined in a few times. Not much sound came out of her mouth, but her lips moved. And for the first time in months, they saw a subtle smile.

I don’t want to say it was a Christmas miracle, but it was a pretty great visit with Nana.

A few days after Christmas, the family visited again. Nana showed no acknowledgement they were there. Try as they might, they couldn’t make a connection–until her great-grandson again knelt by her side and told her it was Christmas.

And again…there was a spark. They didn’t have a gift for her this time, but they did sing some Christmas carols. They were amazed that Nana remembered all the words to Silent Night. It wasn’t Christmas Day, of course, but it was still the holiday season. And it was great to see Nana experience a bit of joy one more time. Her family knew it would be her last Christmas.

As her granddaughter told me this story, I sensed that she was in awe–but also that something was bothering her.

She then told me her family just wouldn’t let it go. They had visited Nana a few times since Christmas (this was mid-January) and each time they had told her it was Christmas. Each time she lit up and joined in singing a Christmas carol or two. To the amazement of her family, she had even managed a couple of giggles upon hearing it was Christmas.

“But we can’t go on lying and telling her it’s Christmas all the time,” the woman said to me. “It’s dishonest.”

I wanted to explain the difference between reality orientation and validation therapy in dementia care. I wanted to say it was okay to step into Nana’s world, and maybe it could be Christmas in Nana’s world even when it wasn’t December 25.

However, another dementia caregiver was listening to our conversation, and she had a response that was more insightful, more brilliant, and just plain better than anything I would have said.

The woman said to Nana’s granddaughter, “If you think the birth of Jesus is good news, you should celebrate it everyday. Your grandma has limited days left on this earth. She especially should celebrate the birth of Jesus everyday.”

Nana’s granddaughter didn’t have much of response to this, and I wasn’t sure if she was comfortable with making Christmas a frequent occurrence for Nana.

This summer I ran into Nana’s granddaughter. I didn’t remember her…until she reminded me who she was by telling me she had the grandmother who loved Christmas. I asked how Nana was doing.

She told me that Nana had passed away a few weeks earlier. The day she passed away was…well…Christmas. They had sung Christmas carols on the day she died, and her granddaughters were all decked out in her tacky Christmas sweaters.

She told me it was one of many Christmas days Nana had in 2017.

This blog has no religious affiliation. Maybe you celebrate Christmas. Maybe you celebrate something else.

But perhaps when you believe in something…when it’s important to you…when it really means something…maybe it’s a shame to only celebrate it once a year.

I’d like to thank Nana for the reminder. And, wherever she is, I’d like to wish her a Merry Christmas.

Today and everyday.

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.

 

 

So You Messed Up in Dementialand

Caregiving is unpredictable. It’s a different experience for everyone. You have unique challenges and joys. Just like dementia looks different on everyone….caregiving looks different on everyone.

If you’re a caregiver, there’s one thing I can guarantee you share with all other caregivers. And that is the inevitable, undeniable, and incredibly human reality that you (yes, I am talking to you) are going to mess up.

Let’s face it. You have made mistakes in all areas of your life. You’ve messed up in your family and romantic relationships. You’ve messed up at work. You’ve messed up in cooking, driving, managing your finances…you name it. If I haven’t messed up something at least once before 9 am, I’m probably still in bed. And then I guess I did mess something up–because I overslept.

I’ve not saying all of these mistakes have been life-changing disasters. Some of them have been issues that can be resolved in a minutes. Some of them, unfortunately, have been issues that aren’t fixable.

Why would caregiving be any different?

You say something to your loved one with dementia that—you realize later—caused them pain.

You help your loved one take a shower, and they fall because you turned your back for one second.

You think it’s a great idea to take them on a little vacation…until you realize that this vacation has taken them out of their routine and increased their anxiety and confusion.

Maybe you decide to pursue hospice, and you regret that you didn’t do it four months sooner.

Or you respond in a harsh tone because you cannot deal with answering the same question for the billionth time. (If you say you haven’t done this, you have much more patience than the average Joe or Joanne…or you are, more likely, a liar.)

Someone I know once gave her husband the dog’s thyroid medication. She called the pharmacy in a panic. When the pharmacist didn’t return her call, she called her vet, who assured her everything would be okay. (“Call me if he starts barking,” he said.) Her husband was no worse for the wear, but she is still horrified that she could make such a scary mistake.

I used to tell caregivers they’d make all the right decisions. Maybe it was reassuring—but it wasn’t true.

All of the love in the world doesn’t keep you from messing up. Couldn’t you say the same about parenting? Or marriage?

But here’s the important message:

You gotta let it go and move on.

I could tell you not to blame yourself because you’re a human being. I could say you shouldn’t be too hard on yourself because you have a lot of on your plate. As caregivers, we beat ourselves up a lot.

If you don’t think you owe it to yourself to forgive these errors, you owe it to the person with dementia. You see, it takes a lot of energy to beat yourself up. And you don’t have that energy to spare.

I no longer tell caregivers that they will make all the right decisions. I tell them to accept that they will make some wrong ones.

If you’re a caregiver, I hope that your mistakes are small and fixable (and maybe that your loved one with dementia forgets about them). And I hope that you move on quickly because guilt and self-blame are a waste of time.

So…head up, stay strong, let it go, move on.

(I read that on Pinterest.)

Weddings in Dementialand

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.)