When Dementia Knocks: Update

Hi friends! Just a bit of a blog update. You can now find me online at WhenDementiaKnocks.com. Tell your friends.

In addition, I started a Facebook page with the title When Dementia Knocks. This is a place to post my blog as well as provide some other dementia resources. If you’re a Facebook person and you feel compelled to “like” the page, you can find it here: https://business.facebook.com/DementiaKnocks/

If you aren’t a Facebook person because you think it’s catty and are sick of seeing your relatives argue about Trump, I get that. Good for you.

It appears in the “business” section of Facebook but don’t worry–I’m not selling you anything (except some bad humor). As you may have realized, I’m seriously opposed to pushing products and services or even recommending them.

AND (man, I’ve been busy) I know have a Twitter handle (@dementiaknocks) for the blog. You can find that here: https://twitter.com/DementiaKnocks

I am hoping that being more involved in social media will reach some individuals I am currently not reaching. I guess this is how the youngsters do it nowadays.

In other blog news, I have a new favorite coffee shop to write. It has a latte called the Optimist–which is blackberry mocha flavored. I feel like I’m getting more optimistic just by drinking it.

 

Hey Dementia Community: Stop Telling Me Your Challenges Aren’t a Big Deal!

If it wasn’t a big deal, why was she telling me about it?

She said that having to cancel lunch with a friend because her husband (who was living with Alzheimer’s) was having awful anxiety was no big deal.

She said that her friend could stop by later. That she wasn’t that thrilled with the restaurant (Olive Garden) her friend picked anyway. That she had gone out for lunch with another friend a few days ago. She even made a joke about her weight and said maybe not going out for lunch is best.

Again, she said it was no big deal.

But here I am at this conference chatting with a family care partner who sought me out. We probably have about four minutes until I have to get to the next session.

In this limited time, she’s not talking to me about financial care planning or her husband’s diagnosis or her worry that one day he will walk out the front door and be lost forever.

She hasn’t told me about her feeling of disconnectedness within her marriage or how her kids are in denial that their father has a progressive disease.

She’s telling me she had to cancel lunch with her friend.

It’s a big deal.

I said, “I’m so sorry you couldn’t go to lunch with your friend.”

I said it with the sincerity I would say, “I’m sorry your husband died, ” or “I am so sorry to hear about this diagnosis.”

I really was sorry, and I felt for her. She had to give up something that was important to her. We’ve all been there–whether due to dementia or other life circumstances. It’s hard when you aren’t able to do what you want to do. We’re allowed to be upset about that.

She nodded and said, “Thanks but it’s no big deal. I mean, there was worse things.”

Of course there are worse things. There are always worse things. I’d have nothing to talk about in life if we were only allowed to complain about the things that are truly the worst.

Just because something is not the absolute worst thing to ever happen in the history of world does not mean it’s not difficult. And it doesn’t mean it’s not a big deal. As I sit here right now, I am declaring a new life rule–YOU GET TO DECIDE WHAT IS A BIG DEAL IN YOUR OWN LIFE. And you don’t have to apologize for what is a big deal in your life at any particular moment.

People living with dementia and care partners often tell me about some of the challenges in their lives and say then follow up by implying those challenges are small and insignificant.

Sometimes I get confused when I’m getting ready in the morning and trying to figure out what’s the toothpaste and what’s the deodorant and the hairspray. But that’s just a small thing.

I can’t do my crafts downstairs anymore because he comes down and needs my attention a lot. I know people have it worse. At least he’s home. I can deal with not crafting.

I want to make the same stuff I always make for dinner but now stuff tastes different to him and he won’t eat what I make. I am stuck making pasta every night because he says other stuff is gross. But I don’t want to complain. Pasta is okay.

I used to be able to sew but now it’s just frustrating because of Alzheimer’s so I gave up. It’s not the end of the world.

I’m guilty of saying something isn’t a big deal when it is, in fact, a big deal to me. I’ve been known to go on a monologue complaining about a problem or talking about a difficult situation. Then I tell everyone it’s not a big deal and dismiss it.

Elaine, why would you go on diatribe if it’s really no big deal to you?

And I say the same thing to those of you who reach out to tell me about challenges but then downplay those challenges because they are no big deal.

It’s okay for something to be a big deal. And it’s okay to say it’s a big deal. You realize that it is not a big deal to everyone in the world and that maybe it won’t be a big deal forever, but it’s a big deal right now. Sure, maybe you’ll get over it. Maybe you won’t even remember it in a year. That doesn’t mean it’s not a big deal right here in this moment.

It doesn’t make you self-centered or whiny. It just makes you a human being.

So care partners…I know the world expects you to be upset when your loved one is diagnosed, forgets your name, or passes away. Those are big deals, but please know that there are other moments that might seem inconsequential to others that are big deals to you. Stop telling me the things that are bothering you aren’t big deals because those things matter, too. Stop minimizing the loss you feel when you can’t go to Olive Garden with your friend. It’s loss. Loss is a big deal.

To the care partner who had meltdown in front of me because her husband could no longer handle the recycling and had thrown out a lot of plastic silverware. Maybe it’s not entirely about the recycling. Or maybe you’re really environmentally-conscious and it is. Either way, you’re struggling with it and it’s important.

And for my friends living with dementia…I’m looking at you as well. You deal with many challenges. Some of you are thriving. Some of you are struggling. I’d say quite a few of you are thriving and struggling even at the same time. Sometimes when I talk to you I hear you dismissing frustrating pieces of dementia as if they don’t matter. Your friends leave, but you tell me it’s fine because now you know who really cares. Your wife won’t let you mow the yard, but you say it’s okay because it’s too hot out there anyway. You can’t volunteer at the humane society anymore because you don’t have the energy. That’s loss. Loss is a big deal.

If you are struggling with something, that thing matters. Maybe it won’t matter so much tomorrow. Maybe it won’t matter in ten minutes. But right now…it’s a big deal. Stop telling me it’s not.

I don’t believe you anyway.

 

 

 

 

 

 

Anticipatory Grief and Dementia

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.

 

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

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.

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.

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.

 

 

So You Messed Up in Dementialand

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.

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.)

Why You Shouldn’t Start Statements with “At Least” in Dementialand (And Elsewhere)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful.

The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting.

I read something recently that made me think.

A woman who had been through a heartbreaking crisis that ended in the death of her infant suggested that people who try to console others should avoid statements that start with “At least…..”

This didn’t impact me at first–but then I thought about all the “At least” statements we throw around, trying to help but hurting.

When a woman has a miscarriage, we tell her at least she can have another baby.

When a married couple can’t get pregnant, we tell them at least they can still adopt.

When a person dies suddenly, we say at least they didn’t have to suffer.

When a person dies slowly, we say at least you had time to say goodbye.

When parents lose a child, we say at least they have other children.

These statements come from people who are well-meaning. They come from people who are trying to help…but they don’t help. They don’t help at all.

There are other (less dire) times that we hear statements like this. Last semester I was on a time-consuming, although rewarding, work committee that was somewhat stressful and required me to sacrifice a few weekends and many evenings. As some other committee members and I were sitting around at a hotel bar after a day of tiring meetings and venting about the experience, one of them said to me, “At least you don’t have kids.” Um. Thanks. (I guess not having children makes my time less valuable.)

Statements that start with “At least” are often made to those in Dementialand. Here are some comments that families have relayed to me or that I have overheard:

At least it’s not cancer. (Comparing who has the worst disease is seldom helpful to anyone.)

At least it’s not terminal. (Ummmmm….insensitive and also inaccurate.)

At least you have a great family. (One guy told me a friend said this to him and he responded, “Yeah, and I love the idea of putting them through this.”)

At least it’s not something physical. (This one typically comes from someone without a knowledge of dementia.)

At least it’s something that progresses slowly. (I find that the idea of the slow progression is one of the scariest pieces of dementia to some people.)

At least there’s a medicine you can take for that. (Yeah–but the medications don’t slow or stop the disease.)

At least you won’t know what’s happening when things get really bad. (REALLY?)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful. The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting.

 

 

 

Improv and Dementialand (aka There Are No Scripts in Dementialand)

I have a friend named Drew Dotson. She lives in Atlanta and performs at an improv  comedy theater. Not only does she perform improv (and does so amazingly well), she teaches improv. If you’re not familiar with improv, think of Whose Line is it Anyway with a different and, if ask me, less impressive Drew, Drew Carey.

Drew also has a family member with dementia. It was during a conversation with her that I came to see a connection between improv and dementia. To be fair, I can’t take credit for that realization. I think Drew actually said, “Dementialand sounds a lot like improv.”

I did some thinking. I pictured Drew and I traveling around the country doing trainings for dementia care based on principles of improv. I was thinking of all the hotels we’d stay at, the free continental breakfasts we’d share, the bonding time and snacks we’d have on the road as highly sought after public speakers….

A day later I Googled “dementia care and improv.”

Bubble burst.

Unfortunately, or maybe fortunately, the idea wasn’t unique. In fact, there’s a TedTalk out there on the topic:

http://tedmed.com/talks/show?id=526821

It’s the TedTalk that Drew and I could have done had we had our conversation a bit earlier–but that’s okay. The bit of information out there linking improv to dementia care has helped me to understand why spending time in dementialand has been valuable for me…and made me a better person.

As dementia progresses, interactions with people can become more unpredictable. I have had to let go of my expectations of that interaction, just like you have to enter an improv scene without expectations of where the scene might be headed.

This is very much in contrast to the rest of my day, which is often taken up by university meetings with agendas emailed out in advance. At work meetings, I am known for efficiency. In fact, a colleague once mentioned to another colleague that I was “brusk” during meetings. I probably should’ve been insulted, but I took it as a compliment to my efficient nature. We stick to the agenda. We get through the agenda. We conclude the meeting.

Visiting dementialand means dropping any agenda at the door. It means letting go of any expectations of what will be accomplished during the interaction. I’ve even started to think of interactions with people who have progressed dementia like scenes in improv theater. I am participating in the scene, as is the person with dementia. I cannot allow myself to dictate the scene.

Just like in improv, all players have to have equal status–even if some of those players have limited verbal communication skills. I can’t write the script in advance. If I try to do that (and I have), the scene usually turns into a disaster. There are certain areas in my life where I lack flexibility. Dementialand is not one of those areas. You don’t survive in dementialand if you are rigid and inflexible person.

In my limited knowledge of improv, I understand that the first rule is to SAY YES! Don’t say no to a suggestion. Agree. Go with it. Wherever the scene goes, you follow. As a college professor, I often have to keep a class on track during our class meeting time. I have to judge whether or not where I think the students are headed on that particular day is useful for their learning. And then I might have to right the ship. I can’t always say yes. I can’t always go with it. Back to the agenda, so to speak. I also have to correct and clarify any information from other players (in this case, students) that might be factually inaccurate. Dementialand is different.

Case in point…I was spending time with a group of people with moderate dementia last week. We were doing an exercise where we were trying to name different types of flowers–an exercise that was dictated and moderated by me.

And then, out of the blue, this conversation evolved:

Person #1: I have a question for you. Do you take calcium pills?

Me: In fact, I do. I take one every morning.

Person #2: On TV they said that calcium makes your bones break.

Me: I hadn’t heard that. I’d better be careful then. I’ve taken them for a long time now.

Person #2: Don’t ride your bike. A car will hit you.

Person #1: Not always. You don’t always get hit by a car when you ride your bike. I know people who ride their bikes and never get run over.

Person #2: ALMOST always though. Maybe not ALWAYS.

Person #1: Then don’t ever ride your bike, Elaine. We love you and don’t want you to break.

It was the nicest thing anyone had said to me all day. Maybe all week. If I had tried to dictate the scene and make them continue to list types of flowers, I never would have heard it.

Sometimes when I ask a question in dementialand, I don’t get an answer to that question. Sometimes I get information that is tangentially related to the question I asked; sometimes I get information that is completely unrelated to the question I asked. If these were answers to my college students’ essay questions on an exam, they wouldn’t score well. I would be handing out loads of Ds and Fs like candy. But this is dementialand; not a college class. The rules are different. My role is different.

I have found that I learn the most when I listen, really listen, to the response to a question I ask someone with dementia–even if the response isn’t actually an answer to my question. I need to let go of my question, which I often realize wasn’t all that important anyway.

When I ask someone about their wife and they tell me about their dry skin, that’s not a fail. When I question someone about whether they are enjoying the weather and they tell me about their brother who died in the war, it’s okay. Sometimes I ask a question and get an answer that is based on their reality rather than my reality. In other words, their answer makes no sense to me. I’ve learned to roll with that rather than allow it to end the scene.

In fact, sometimes the conversations that make the least sense are the most fulfilling for me. I had a great conversation with a guy with younger-onset Alzheimer’s a few weeks back about the drawstring on his pants. He seemed to think they were worms and snakes crawling out of his stomach, although he wasn’t at all bothered by them. Then he pleasantly warned me about the bugs that he could see crawling around under my scalp. (And yes, I was somewhat itchy the rest of the day.) The connection happens when I tune in to what someone wants to tell me rather than trying to script the conversation.

When you follow improv rules in dementialand, dementialand becomes a more positive, rewarding place. It makes interaction easier for those with dementia, but (and I’m being selfish here) it also makes things a lot for fun for me.

 

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.

 

 

 

Obnoxious Carpet in Dementialand

I’ve been traveling quite a bit for work. When March is said and done, I will have spent almost half of it in a hotel room.

I enjoy traveling, but right now I’m over the hotel deal. Only one of my five most recent hotel stays has offered a free continental breakfast. My last hotel TV couldn’t pick up the signal for CBS (which wouldn’t be a big deal if it weren’t NCAA Tournament time), and I’m tired of tiny conditioner bottles that don’t have contain enough product to cover my whole head.

My other recurring complaint about hotels is of a totally different sort. It’s about the carpet—typically the carpet in hotel hallways.

Here’s the thing….Your brain has to work to interpret every image you see. If you don’t have dementia, your brain usually does this quite efficiently. If you do have dementia, it’s a different story.

If you live in Dementialand, your brain has to work much harder to interpret the information you gather using your senses, including sight. This is why bold patterned carpet is terrible for people with dementia.

Someone with dementia may not be able to distinguish a patterned carpet as…well…just a patterned carpet. They may be afraid to trip over stripes. They may think shapes are rocks, animals, bushes, babies, you name it… I once knew a gentleman with dementia who refused to walk into his own living room because he thought the bold pattern on the carpet was actually a bunch of dead pigs on the floor. (Not surprisingly, he was a retired famer.) There was a woman who didn’t want to step on a bright patterned carpet because her brain interpreted the image as babies crawling around. Obviously, she didn’t want to step on the babies.

I frequently see people with dementia who are hesitant to walk on surfaces with striking patterns because they are afraid they will fall through or that a different color indicates a raised edge or drop off. When people have this problem in their homes, my best advice is to change the environment. Pull up the carpet or get a throw rug. (I should add that rugs can increase the risk of falls.)

As I travel more, I realize the norm in hotel hallways is to have obnoxiously bright and patterned carpet. Not neutral. Not soft patterns. I think the look they are going for is regal. For the majority of us, I think these carpet patterns are obnoxious and unattractive—but that’s just my personal taste. For the minority (but not small minority) of us with dementia, these carpet patterns create challenges.

I only recently realized how annoying I must be about this hotel carpet deal. Back in November, I attended a conference in Denver with a professor from Southern Illinois University, Julie, who I did not know well. Looking back, I must’ve lamented quite a bit about how dementia-unfriendly the hotel carpet was to poor Julie, whose field of study is not related to dementia in any way. Recently she said she stayed at a hotel with boldly patterned carpet and thought about how much it would bother me. I’m grateful
that Julie and I have somehow become friends despite my obsession with
analyzing hotel carpet and inability to talk about other topics like a normal human being. Sometimes being passionate about your subject matter can make you pretty annoying to hang out with.

Although there is a trend to make society more dementia-friendly due to the number of individuals who are being and will be diagnosed with dementia in the coming years, I can’t pick on hotels. It’d be great if they had something like this in mind when they designed for guests of all ages and abilities, but I know I’m probably being unrealistic to think someone might consider individuals with dementia when choosing a carpet. We have a long way to go. (For now, I continue to rant to my travel colleagues—likely to their annoyance– about this issue, and I once made an awkward attempt to bring up the topic with a hotel manager. I did write an email about six months ago to a major hotel chain and got no response.)

What is more disturbing to me than hotel carpet choices are the carpet choices of facilities that cater specifically to those with dementia. I cannot tell you how many times I have walked into an assisted living facility and been struck by colorfully bold patterned carpet. The reason? When assisted livings were first created, they were intended to have the feel of a luxurious hotel rather than a nursing home. I guess obnoxious carpet equals luxury?

A few years back, a student who graduated from the Gerontology program that I coordinate got a fantastic job managing an assisted living. She wanted me to come see her facility. As soon as I walked in, she rushed up to me.

“I know what you’re gonna say,” she said, “You’re gonna say the carpet sucks.”

It was one of those moments as a professor when you feel a sense of accomplishment because a student actually remembered something you said. And she was right. The carpet did suck. It had boats on it.

You cannot change the dementia brain. What you can change is the environment. When the environment becomes difficult to navigate, or to interpret, we can simplify the environment. Simplifying the environment can start with simplifying the carpet.

Make it a solid or a very soft pattern. A nice neutral is perfect. It should preferably be a different color than the walls. And keep in mind that sometimes people with dementia are hesitant with transitions. For instance, they may stop walking when laminate flooring turns to carpet. Of course, this could be a good or bad thing, depending on the situation.

My office at the university happens to be next to the office of an amazing faculty member in the area of interior design. Before meeting her, I did not realize the importance of designing for individuals with dementia. I now realize that it makes a huge difference in quality of life.

When you can’t change the person, you change the environment to fit the person. And changing the carpet really isn’t all that hard.