45 Seconds in Dementialand

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I’ve known Erin Payne-Christiansen since I was in the first grade. She saw me through my awkward middle school years, which lasted until I was about 26. She was with me the first time I got to drive out-of-town after I got my driver’s license. The muffler fell off my Ford Escort on a busy road. We did the logical thing–stopped the car, ran out into traffic, picked up the muffler, and put it in the trunk. Yes, we burnt the crap out of our hands. And I was proud when Erin was named the homecoming queen at our high school. Not only of Erin, but of our high school. We had actually elected someone who was kind and genuine. After high school, she became my college roommate (the first person with whom this only child ever shared a room).

No matter where Erin has lived, it’s always seemed like home to me. Even when I visit her parents’ house 30 years after I first “slept-over,” it feels like home. (On a related note, I can recite her parents’ home phone number more easily than I can my husband’s cell phone number.) Several years ago, Erin returned from living in New Zealand with her husband and moved into a new house. As soon as I stepped into the house, it felt like home–because Erin lived there. She’s just that type of friend.

I went to bed that night in Erin’s basement. It was one of those really dark basements that is perfect for when you want to sleep late.

I didn’t sleep through the night. I woke up. It was pitch black. The world didn’t look any different with my eyes open than it did with my eyes closed. I couldn’t find a clock. I couldn’t locate my cell phone. And I had no idea where the hell I was.

I sat up and looked around. I guess I was looking for clues to try to figure out where I was. Not seeing anything useful (or anything at all, really), I got up and started wondering around. I slammed into something, probably a couch, and kept my arms out to feel for a wall. If I could find a wall, I could likely find a light switch. But I couldn’t. I wandered around a bit more.

Then I stopped and forced myself to think. I kept telling myself there was no reason to panic, but I was in panic mode. And it was moving toward terror mode. There had to be a logical reason I was in this place with no recollection of how I got here. My eyes adjusted a little. I could see shapes. I could see a large TV. A couch. A table.

Finally, I realized I was at Erin’s. I recalled driving down the night before, having dinner, drinking wine before bed. I took a couple of breaths. Eventually I went back to sleep. The whole panicky incident probably lasted fewer than 45 seconds.

45 seconds.

Whenever I see someone with dementia anxiously wandering around looking for clues to make sense of their environment, I think of those 45 seconds.

My senses and recall were able to help me identify where I was and alleviate my panic, but that might not be the case if I had dementia.

Picking Battles in Dementialand

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I don’t mean to criticize dementia caregivers. Caring for someone with dementia can be challenging and draining. But I talk to a lot of caregivers who create problems where I don’t see any.

Here’s an example. A woman approached me after a presentation I gave in the Des Moines area. She was concerned about her mom, who had been diagnosed with Alzheimer’s and recently moved in with her.

Always an avid reader, her mom kept with her life-long habit of reading a chapter each night before bed, except now she reads the same chapter each night. She didn’t remember she had read the first chapter the night before, so she read it again. Her daughter had given her a bookmark and even a short lecture on how to use it, but she was stuck on the first chapter.

I kept waiting for her to get to the problem. Then I realized this WAS the problem. But is that really a problem?

I asked the woman, “So why are you concerned about this?”

The woman responded, “She’s never gonna finish another book.”

I still didn’t see the problem.

I also knew a man with dementia who talked to his IV pole as if it was a guy from work. His wife asked me how to explain to him that it was an IV pole and not a person. I asked if his conversations seemed to create any fear or agitation. She told me that it seemed like his IV pole kept him company and he interacted with him like it was his best friend. Yet she was surprised when I told her not to try to explain his friend was an IV pole. How would you like it if someone to tried to convince you that your best friend was actually an IV pole? Seem ridiculous? It would probably seem just as ridiculous to him.

I had a hospice patient who had dementia about ten years ago. She had a habit of unloading the dishwasher and stacking all the dishes on the counter. Once she finished that, she loaded them right back into the dishwasher. She sometimes did this for a few hours at a time. Her family wanted to know how to stop her. I asked why they should stop her. She seemed purposeful and happy while she loaded and unloaded the dishwasher.

If someone with dementia is happy, safe, and free from pain and anxiety, ask yourself whether their behavior is problematic. It probably isn’t. Now, it may be annoying to you, but that’s totally different. And if it is annoying to you, you need to focus on how you can change something about yourself (your attitude, your environment) so it is less annoying.

Dementia presents plenty of challenges. We may have to find a way to keep people from wandering and getting lost. We may struggle with how to talk to grandpa about giving up his keys. Convincing someone to take medication can be a struggle. Sometimes we even have to stop people from putting inedible items, like marbles, in their mouths. Those are challenges.

Yet I notice that families want to create problems where they are none. And when we do that, sometimes we don’t save enough energy to problem-solve issues that really do need to be solved.

Pop Quizzes in Dementialand

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I’ve just done a program and am leaving a memory care community. I’m just about the put in the “code” to exit the building (which I always mess up) when a woman gets my attention.

“Hey!” she yells. “I’m a grandma!” She’s sitting on a couch with a pink blanket over her lap, and I decide to walk over and chat a few minutes. I’m not in a hurry to get back to campus anyway.

“So you’re a grandma?” I ask.

“Yep,” she says proudly. “My granddaughter was born just a couple of days ago.”

I have no idea whether or not this is true. Her granddaughter could be my age, but it doesn’t matter.

“That’s great. What’s her name?” I ask.

The woman looks at me. Long pause. Then her eyes get sad. Dang. That’s a mistake on my part.

A minute ago this woman was excited to tell me about her granddaughter. Now she’s embarrassed and sad because she doesn’t know her granddaughter’s name. Way to go, Elaine.

Instead of asking her to recall specific info about her granddaughter, I should have said, “Tell me more about your granddaughter.” She might have told me that she was 8 pounds when she was born, that she had blond hair, that she cries a lot. But she would be focusing on what she remembered rather than what she didn’t remember.

I talked to someone recently who had visited her grandpa who had Alzheimer’s at a nursing home. I asked how the visit went.

“Great!” she said. “He remembered what year it was, my name, where he was, and what he had for breakfast.”

All I could think was that it sounded like Grandpa had taken a test. (And, according to his granddaughter, had passed.) But most of us don’t enjoy tests.

But does recalling what year it is make it a “good day” for Grandpa? No, I don’t think so. But we like it when he remembers what year it is because it reaffirms that he’s still Grandpa.

Sometimes we say things like, “You know who I am, right, Grandpa?” This tells Grandpa that he should know who we are. If he doesn’t, he’s given the message that he’s stupid or doing something wrong.

How would you like it if someone walked up to you and made you do an algebra problem? What if they kept saying, “You know how to do this algebra problem, right? I know you do.” What if they stared at you expectantly when you were silent and your mind went completely blank?

But too often we like to make people with dementia play guessing games, which can be frustrated and tiring for them. A few years ago, a women with Alzheimer’s was sitting in her wheelchair at a nursing home. I watched as a younger man came up behind her, put his hands over her eyes, and said, “Guess who?”

I laughed out loud when she responded, “I have Alzheimer’s. My whole life is a ‘guess who’ game. Just tell me who you are, asshole.”

She had a point.

How Michelle Remold Helped Me Understand Reality in Dementialand

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I’m a college professor, and I have favorite students.

Maybe you think this is a horrible thing to say, but it’s unavoidable. I connect with some students more than others. And there are certain students for which I would go to the end of the earth.

On the top of that list is Michelle Remold, who graduated a couple years ago. And maybe I haven’t literally gone to the end of the earth for her, but I did drive to Minnesota on my own dollar to do a community education at the senior center where she currently works. Of course, she did buy me dinner and a margarita after the presentation.

Michelle created a program called Memory Trunks for our Gerontology program. I still do the program that she started. She actually made me a handbook so I could do it after she graduated. This handbook has been sitting on my desk for three years. In all honestly, I haven’t opened it in two years, but I can’t put it in a drawer because I think it’s so awesome she made it for me.

Michelle came to my office after doing Memory Trunks one day and told me a story that has stuck with me. She had been at a nursing home and was visiting with an activity director who said she “didn’t know what to do with” residents with dementia.

First, Michelle was bothered that an activity director had no idea how to work with individuals with dementia, and she should have been. Second, Michelle had an issue with a statement the activity director made about how the residents with dementia had such “active imaginations.”

Something clicked for me. Michelle was right on. We need to stop thinking that people with dementia have “active imaginations” and accept what they hear, see, feel, and touch as their reality.

One of the most important truths I have discovered over the past several years is that what people with dementia experience is as real as what I experience.

I recently talked to a friend who told me her grandma had dementia and thought a couple with a cat lived in the corner of her bedroom. That couple with their cat? They were just as real to her as the laptop I am typing on right now is to me. If you try to talk her out of thinking that couple lives in her bedroom, you’re gonna have the same result you have if you tell me that there’s no laptop in front of me.

I have a short video clip I show in class. A woman with Alzheimer’s thinks there are snakes in her wheelchair. She’s terrified–as I would be if I were surrounded by snakes as I sit here on the couch. The only effective strategy for eliminating her anxiety is to acknowledge this as reality and remove her from the wheelchair with the snakes. Whether or not these snakes are part of your reality is irrelevant.

We need to stop trying to talk people out of their reality. Furthermore, we need to stop thinking that our reality is more important than their reality.

Thanks, Michelle.

Sex in Dementialand (Yes, You Read Correctly)

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As a society, we don’t like talking about dementia. It’s uncomfortable. But I can top that. Today we are going to talk about dementia and sex. Awkward.

Although I am not going to focus on the specific case and will reflect more on the larger issues at hand, a rape case involving an Iowa state lawmaker got me thinking. If you haven’t heard about the case, here is more info from the Des Moines Register:

http://www.desmoinesregister.com/story/news/crime-and-courts/2014/12/13/former-legislator-charged-raping-wife-dementia/20305991/

Here are the Cliff Notes….Henry Rayhons (who has served nine terms in the Iowa House of Representatives) and Donna Young, both in their 70’s, married in 2007. Donna began showing signs of dementia, was diagnosed with Alzheimer’s, and was eventually admitted to a nursing home. Henry visited frequently, and Donna’s daughters (from her first marriage) alleged that Rayhons often wanted to have sex once or even twice a day. Rayhons was presented with a physician-approved document stating that Donna was unable to consent to sex due to her dementia. He allegedly continued and was charged with rape stemming from a May 23, 2014, incident where he had intercourse with his wife. Donna passed away on August 8, 2014, due to complications of Alzheimer’s.

To be clear, I’ve followed this case closely in the press and have talked casually to a few people who are tangentially involved, but I don’t have any insider information and am not stating an opinion about the case.

I decided that I would discuss the issues involved in this case with my Families and Aging class a few months ago. I walked into the classroom with absolutely no idea how to approach the topic and an expectation of total awkwardness. I decided to attempt to make it seem relatable to them. So how do you make sex in Dementialand relatable to college students? Oy vey.

We talked about how the university inundates them with information about sexual consent. (I’m not saying that the university should not inundate them with this information, but the students in my class used this word several times.) They are required to take a quiz about sexual consent before they can register for classes. I haven’t seen the quiz, but I am assuming it doesn’t mention dementia. I am assuming it does mention alcohol consumption. We started there.

I asked my class, “Can someone consent to have sex if they’ve had one drink?” The vast majority nod their heads definitively. (Side note: Someone in my class points out that if you cannot consent to sex after having one drink, we’ve just made 90% of sexual encounters on college campuses sexual assault. It may be a fair point.)

Then I ask my class, “Can someone consent to sex if they have had 12 shots of tequila?” The vast majority say no.

Next I ask them how many drinks someone can have and still consent to sex. I tell them I need a number. Silence. We talk about how this is a gray area.

Then comes my challenge as an instructor–trying to show how this is relevant to sex in Dementialand.

Being diagnosed with dementia does not take away your ability to consent. Many people with dementia have active sex lives. However, I would argue that very few people in the end stages of dementia would be able to consent. Just like my students perceive a blurred line in ability to consent due to alcohol, there may be a blurred line in the ability to consent due to dementia.

I will argue that if a person cannot identify their potential sex partner or misidentifies them, they are not able to consent. I will argue that if they cannot comprehend their potential sex partner’s intentions, they are not able to consent. But this still leaves a murky gray area that makes me uncomfortable. And, from my admittedly limited research, state laws do not do much to minimize that murky gray area.

Although the Henry Rayhons case is an interesting one, there are other circumstances (beyond spousal relations) that warrant consideration. It is common for two individuals with dementia who share living space, such as in an assisted living, to spend time together and start relationships. These individuals may or may not be married to other people. When are they just two consenting adults, and when are they…well…not? How do we decide if and when sexual relationships between two people with dementia are okay? Are they ever okay?

I know I’ve presented quite a few questions here, but no answers.

One final note…As I was looking at online newspaper articles about the Henry Rayhons case, I was appalled at the comments readers had made on the internet regarding the situation. Some just showed an ignorance about dementia, and I can deal with that. However, many were disgusting, insensitive, and even inhumane.

If this had been a case where a man was charged with the rape of a child, I would guarantee that these types of comments would not be tolerated. Why is it so much harder for people to have empathy for those who live in Dementialand?

Shattered iPods in Dementialand

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The other day I was getting on the treadmill when I dropped my iPod. It landed precisely on its screen. And, yep, the screen shattered.

It still works. Except if I want to adjust the volume. I’m still deciding how important that is.

My husband, Bill, calls me the Osama bin Laden of electronics. It’s fair (although he recently left a FitBit out in the snow for a week).

This is the third iPod I’ve dropped and broke in the past couple years. And I put one pair of headphones through the washer and dryer on Thanksgiving. Bill bought me a new pair for Christmas. I washed those a few days after the New Year. Miracle of miracles, those still work.

If I continue my electronic terrorist ways and happen to develop dementia, Bill might be in trouble. Because if I don’t remember breaking electronics, I will likely blame him.

Think about it. If I break my iPod and I don’t remember breaking it a couple of hours later, I will see a busted iPod and assume the only other person in our house broke it. Based on my reality, that’s a logical explanation.

Sometimes people with dementia become paranoid and accusatory. It’s frustrating, of course, but it makes total and complete sense.

A man with dementia can’t find his tools in the garage. He may have moved them a few weeks back, but he doesn’t remember that. So he thinks the neighbor stole them. (I cannot even tell you how many times I’ve heard a story about a guy with dementia who thinks the neighbor guy is taking his tools. Sometimes I have to wonder if there is really is a jerk going around northeast Iowa stealing tools from men with dementia.)

A woman gets a call from her doctor’s office to remind her of her appointment tomorrow. She doesn’t remember making the appointment. So she calls her daughter because her daughter must have made the appointment without asking her first. And she doesn’t think she needs to see a doctor in the first place.

People with dementia work within their own realities. For the record, so do people who don’t have dementia. But when the person with dementia and the caregiver live in different realities, it’s tough.

Caregivers tell me stories like:

“My husband thinks I mess up the TV by hitting all the wrong buttons on the remote. But he does it.”

“Mom leaves the oven on all the time. When she notices it’s on, she calls me and yells at me because she thinks I left the oven on when I was at her house.”

If you are a loved one of someone with dementia, what do you do when you get accused of something you didn’t do?

You step into their reality–which means you apologize. If you have a loved one who has short term memory problems that lead to accusations, you are gonna be saying “I’m sorry” a lot.

And, for most of us, that’s really hard. It’s difficult enough to apologize when you’re wrong. And now you’ve gotta do it when you’re not wrong.

And after you say, “I’m sorry about that,” you focus on modifying the environment. Can you change the set-up of the remote or TV so it’s harder to screw up? Can you unplug the oven or even take it out of the kitchen so Mom doesn’t leave it on?

So practice this line: “I’m sorry about that. Let’s see what we can do to fix it.”

Did you break it, take it, or mess it up? Nope. And it doesn’t matter.

Welcome to Dementialand.

I Don’t Live In Dementialand

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What is it like to live with dementia? I have no idea.

I have a string of analogies I use to explain to families and caregivers what it’s like to live in Dementialand, but the truth is that I don’t know what it’s like.

I know someone who works in adult day services. She works with a woman who has younger-onset Alzheimer’s. I’ll call her Tina.

Tina is prone to what can be best described as meltdowns. In fact, that’s what Tina calls them. Her meltdowns are due to the smallest of things. Someone sat on the end of the couch–where she was planning to sit. The pants she wanted to wear were in the wash. Her nail polish chipped. And, one time, someone used the term “tippy toes,” which she found childish and annoying.

She cries. She gets angry. She can’t calm down or stop shaking. After the meltdown dissipates, she says to my friend, “I’m sorry about my meltdown, but you have no idea what it’s like to have this disease.”

And it’s true. Sometimes when I am doing my best at trying to help someone with dementia and failing miserably, they will remind me that I don’t get it. Sometimes they don’t even have to remind me. Sometimes people will cry and I can’t figure out exactly what’s wrong. I don’t know what they’re going through. I visit Dementialand, but I don’t live there.

As a person without dementia, I don’t get it. And as many people as I talk to and as many research articles as I read, I won’t ever really get it–unless I’m diagnosed, of course. I’ve been through the Virtual Dementia Tour and several other simulations meant to make a person feel like they have dementia. It’s a valuable experience and one I recommend, but I know I’m just visiting.

So here’s the point of my blog today…THANK YOU to those of you who have dementia who try to show me and tell me what it’s like, even though we both know I will never really get it.

They try to show me and tell me in different ways. People with dementia have blogs. They write books and poetry. They allow themselves to be videotaped. They try to verbalize, even though it is hard, what it’s like to live in Dementialand. They allow me to spend time with them, just so I can understand a little bit better.

But the truth remains. I visit Dementialand but I don’t live there.

Yogis in Dementialand

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Come to hot yoga, they said. It’ll be fun, they said.

And I can’t lie. It is fun–in a sort of brutal way that leaves me dripping wet with mascara running down my cheeks.

Yoga isn’t foreign to me. I’m a certified fitness instructor, and I used to teach some yoga myself. But hot yoga just seems different…intimidating…and really, really hot. Scorching.

The instructor preaches a lot of the same things I preach in Dementialand.

“Let go of your expectations. Stay in the moment,” she says. “Focus on the present without looking forward or back. Appreciate being in the here and now.”

I am ridiculously bad at following these instructions. I continue to think about all the emails I have to send when I get home and what TV shows are waiting for me on our TiVo. I wonder if the soup we made over the weekend is still edible.

“No comparisons,” she reminds us. “Don’t compare yourself to the person in front of you, behind you, to your left, or to your right.”

As she refers to each person around me, I look at them with the sole purpose of comparison. I am definitely the oldest person in my immediate vicinity. The joys of living in a college town.

“And don’t compare what you can do today to what you could do yesterday,” she says. This goes against other things I’ve been told in various areas of my life. Isn’t comparing the “you of yesterday” to the “you of today” the basis for personal growth and improvement? How do you have goals if you don’t look forward and back? I’m not all that philosophical though. I’m just hoping maybe if I do this a few times a week my upper body will be more toned.

Hot yoga is tough. As I enter what I consider to be the stage immediately before one goes into extreme heat exhaustion, the instructions seem to get more cryptic.

“Step your right foot between your hands and look over your left shoulder as you press the top of the left foot to the map,” she says. Left-right-right-WHAT? I need references to one body part at a time. I look at the girl in front of me and think she’s doing it wrong. Then I realize I’m doing it wrong. Or maybe I’m right and she’s wrong after all.

I can’t say I hate it. It’s challenging, and I eventually buy a membership to the hot yoga studio. But I can’t help but think that Yogaland is a little bit like Dementialand.

In Dementialand, we tell you to let go of expectations. We tell you to live in the moment. We tell you to stop comparing yourself. That’s what you have to do to get the most out of life with dementia. It’s also what you need to do to get the best out of hot yoga, but I really wouldn’t know. I’m too busy thinking about what I have to do and comparing myself to others. If I ever enter Dementialand full-time, I hope I can do better at following instructions.

A few weeks back I talked to a woman in the early stages of Alzheimer’s. Although still functioning at a really high level, she was depressed. Throughout her life, she was fantastic at designing and sewing clothes. She could still do simple patterns, but her work paled in comparison to what she could do a few years back. As someone who can’t sew, I was still impressed with her projects. I told her it was 100 times better than anything I could do. Probably the wrong thing to say.

“So I’m better at sewing than someone who has never sewn. Great,” she said sarcastically. Obviously, attempting to get her to compare her work to my (lack of) work was not going to make her feel better. She was set on comparing her current work to what she used to be able to do.

I tried again. I tried to tell her to focus on the joy of sewing and not the outcome. She told me that I really had no idea how great she used to be at sewing. She even made wedding dresses. She couldn’t do stuff like that anymore.

“My whole life people have told me to work hard and get better at things. Now everyone is telling me to let go of that and be okay with being bad at stuff I used to be good at it. How do I flip that switch?” she asked. I really had no idea.

What I didn’t tell her was that there may come a point when she can enjoy sewing again. Why? Because she will likely forget that she used to be an all-star at sewing. There will likely come a point when she has no memory of making wedding dresses for friends and family.  I don’t know whether to hope that comes soon for her or not.

Avoiding Dementialand

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I hadn’t been volunteering for hospice too long when I was asked to stay with Isabel (not her real name) on Sunday mornings. Her family would be at church, and she couldn’t be home alone. Her daughter and son-in-law would be fine with staying home from church, but Isabel would have none of it. So I would come on Sunday mornings.

I was in my mid-20s and in grad school. I was still a bit unsure if I really had the skills to do this hospice thing. I worried a lot about saying the wrong thing. (Side note: I eventually overcame this fear by acknowledging that I would say the wrong thing from time to time, and that’s okay.)

I showed up to find a tiny lady in her early 80’s who was in congestive heart failure. Isabel put me at ease immediately. She was on oxygen and scooted around with a walker. I worried about her tripping over the oxygen line but tried not to hover. She tired easily but somehow had a positive energy about her. She didn’t have dementia. In fact, when I arrived she was watching Suze Orman and launched into an insightful lecture about how women should take responsibility for their own finances.

She asked if I was married. When I said no, she told me that I should not wait until I got married to start making sound financial decisions. I felt like I should be taking notes. I liked her immediately.

Isabel told me in the first five minute of our visit that she was ready to leave this earth at any point. She said she would miss her family but “had her bags packed.”

One thing about volunteering for hospice that surprised me was the ease at which hospice patients jump from talking about the mundane (the puzzle on Wheel of Fortune, toilet paper brands, whether they like asparagus) to the meaningful (how long they had to live, what happens after death, whether they’ll ever see snow again) and right back. Isabel was a classic example. One minute she was telling me she liked my shoes and the next minute she was talking about how she wasn’t scared of death. And then back to Suze Orman. She really liked Suze Orman’s haircut.

But our conversation kept coming back to how lucky she was. She couldn’t help but tell me how fortunate and happy she was that she didn’t have Alzheimer’s. She had seen her mother and her sister die from it, and all she ever wished for was to not have Alzheimer’s.

As she sat in her recliner with her oxygen, she told me that when she entered hospice care she had a realization that it was congestive heart failure that would kill her–before Alzheimer’s would have a chance. And she kept coming back to this point….she was incredibly grateful she would not have Alzheimer’s.

She also told me that for many years she had been a part of a bridge club. She explained how horrifying it was to watch many of her friends suddenly make “dumb” plays. She said that’s how they knew someone had Alzheimer’s. They’d start playing “dumb cards.” Finally, enough of the members had dementia that the club folded.

I would not have expected anyone to have such relief at a terminal congestive heart failure diagnosis. And maybe relief isn’t the right word. It was almost as if she felt entitled to taunt Alzheimer’s like “You didn’t get me!” and then stick out her tongue at the disease. Maybe even throwing in a “nanny nanny boo boo” for good measure. And, after watching the disease turn her mother and sister into what she referred to as “shells,” she had every right to feel that way. She had avoided Dementialand. Isabel 1; Alzheimer’s 0.

But her happy realization that she had avoided Alzheimer’s made me realize that for many years she likely lived in fear of it. She had probably been terrified for decades. I hate that Alzheimer’s does this to people. It makes older people panic when they lose the remote or mix up their kids’ names. It makes them anxious when they can’t find their car in the mall parking lot.

I appreciate that Alzheimer’s disease is getting increased attention in TV and the movies (e.g., Grey’s Anatomy, The Notebook, Still Alice). I can’t help but say I almost always have a gripe about how the disease is portrayed, but still it is being portrayed, and that’s something. All of the increased awareness is fantastic, but it does also increase anxiety among people as they get older. Alzheimer’s is scary for the people who have it, but also for the people who don’t.

The following Saturday night I got a phone call. It was Isabel’s daughter. Isabel had passed away the day before. I was disappointed because I wouldn’t get to watch Suze Orman with her in the morning, but I knew Isabel was ready to go. Her daughter told me that her entire family had been with her when she passed, and her final journey (as her daughter called it) was beautiful.

A few weeks later, I put an offer on a condo. I decided that Isabel was right. I shouldn’t wait to get married to start making good financial decisions, and there was no reason to keep paying rent.

Inappropriate Tales From Dementialand

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“We knew something was up when Mom told this weird story about Dad’s penis at a party,” a woman told me.

Oh, boy.

And it wasn’t just any party. It was a party with friends from church.

And this wasn’t a woman who was known for disclosing inappropriate details about her life or her family’s lives. In fact, she was a private person who rarely talked at parties. She wasn’t known for talking about her husband’s penis in public, particularly when her pastor was present.

Her family was horrified. And embarrassed.

There had been some other signs that something was just off.

She had been at the grocery store and spotted an old friend she hadn’t seen for years.

“Wow! I barely recognized you because you put on so much weight!” she exclaimed.

Her husband was mortified. It was completely out of character…and completely embarrassing.

At home, she stopped shutting the bathroom door–even when they had company. She sometimes walked around the house without a shirt on. When her husband told her to put a shirt on because some friends might be stopping by, she refused.

Her husband made excuses for why they couldn’t participate in social events. He didn’t know what was wrong with her, and he didn’t know what to say when she did inappropriate stuff. He got sick of being embarrassed so they stayed home.

After a couple years, she was diagnosed with Frontotemporal dementia. She was in her mid-50’s at diagnosis.

Now her two daughters had come to one of my community presentations. As we discussed their mom’s symptoms, they had a question I really couldn’t answer.

“How do we stop Dad from being so embarrassed?” they asked. He didn’t want to take her to the store, to social gatherings, to the movies…he had even suggested cancelling family Christmas because he worried she’d say something inappropriate to their grandkids.

I have a stock answer about accepting the changes dementia brings and not being embarrassed that our loved ones are impacted by a disease.

But when your wife is telling stories about your penis and pointing out how much weight people have gained, none of this advice is helpful. It can be embarrassing.

When people approach more advanced levels of dementia, they may live in nursing homes or memory care units. They might need 24/7 care. And it may be apparent upon first glance that something is not quite right.

But most (yes, most) people with dementia do not live in institutions. They live in the community with family or even alone. They may be living with only one foot in Dementialand. They may teeter tot between Dementialand and the reality that the rest of us know.

When these people say inappropriate things at parties and in the grocery store, we may not identify them as a people with dementia. We may just think they are rude and weird. And family members and caregivers struggle with how to negotiate these situations.

There are some strategies I suggest. For instance, a man I knew whose wife had Alzheimer’s carried slips of paper that said in handwritten letters, “I apologize if my wife has inconvenienced you. She has Alzheimer’s. Have a great day and God Bless!” (For the record, that’s not exactly the wording I might recommend, but I appreciate the idea.) A quick email before a social gathering encouraging people to “roll with the punches” can work in some situations.

But how can we keep Dad from being embarrassed when Mom is talking about his penis at a party? I’ve got nothing.