Category Archives: aging

“Role Reversal” in Dementialand

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Although I used the term “role reversal” in the title, I’ll be really clear in telling you I don’t like it. I hear people say things about how they’ve become a mother to their own mother, or something to that effect. And I get where they are coming from, but caregiving for an older adult is different from parenting.

First of all, most of us get about nine months to prepare for parenting. We have adequate time to prepare a room. Oh, and people throw us a shower. You even get to go to SuperTarget with a scanner and scan all the items that will be useful to you in your role as a parent. Then all your friends get together and wish you well on your parenting journey.

You might even get to play some games involving wrapping toilet paper around your stomach or melting candy bars in diapers to see if you figure out what candy bars they were. Oh, and there will be cake and punch. Maybe even those melt-in-your-mouth mints.

I’ve never seen anything like this for caregivers. You typically don’t know that in about nine months your mom is going to need a lot of help and you’re going to have to drop everything. No one gives you a due date for when you are going to start your caregiving responsibilities. If there’s a crisis and your dad is moving in, you don’t get time to paint the room baby blue and go shopping for new furniture.

Can you imaging the gifts you might register for before your caregiving shower? I was talking to a friend whose mom has Alzheimer’s and recently moved in with her. She said she’d register for wine. Lots of lots of wine.

Parenting is hard work. Don’t get me wrong here. I understand that parents, like caregivers, lack sleep. I understand that parents, like caregivers, are stressed and short on time. Parenting and caregiving both involve ridiculous amounts of multi-tasking. Both come with extreme highs and extreme lows, but I’d argue that we tend to be more supportive of parents than we are of those who caregive for older adults.

Furthermore, what I find is that “family-friendly” workplaces are more friendly to workers with small children than workers who have to leave in a rush because their mother with dementia is wandering in the road. Caregivers who balance work and caring for a family member may be cut much less slack than parents in the workplace. And often workplace policies are written with employees who have children in mind…without regard for employees who care for older adults. Apparently, that’s not family?

When I browse Facebook posts, I see stuff like from parents about their kids’ accomplishments, from potty training to spelling bees to high school sports achievements. Recently I saw a post from a mom about her son, who had just used the potty for the first time in exchange for a few M&Ms. It was complete with a photo. I’ll leave it at that. Can you imagine if those caring for an older adult made posts like this on Facebook? I’m not sure how many likes they might get.

Lots of my Facebook friends post about funny things their kids say. I see plenty of pictures of little girls who have gotten into mommy’s makeup and smeared lipstick all over their faces. A caregiver I know recently busted her mom heating up cans of Diet Coke in the microwave. Should she have taken a picture and posted it on Facebook?

I talked to a family caregiver who was caring for her aunt. Her aunt would wake up during the night and need to use the bathroom. Not wanting to disturb anyone, she would quietly tip-toe down the hallway. However, she was unsteady on her feet and would (on a good night) knock a bunch of pictures off a table trying to stabilize herself or (on a bad night) take a fall.

Her niece gave her a bell and insisted she ring the bell so someone could come help her to the bathroom. She would never ring the bell–until one night she did.

Her niece was pretty excited that she would now ring the bell, but when she tried to tell her friends and co-workers about this “breakthrough,” they didn’t celebrate with her. They just gave her a look of pity, and that wasn’t really what she was going for. Apparently, this isn’t the type of accomplishment that society celebrates like a kid winning a spelling bee.

Caregivers don’t get a peer group like parents. If you’re a parent, you have the parents of the children on your kids’ soccer team. Or the parents of the kids who are in the play with your daughter. You have a built-in network of people who might be sharing some of the same joys and challenges that you are. It’s harder to find that built-in network if you are taking care of family member who has cancer, dementia, or another serious illness. You have to make an effort to find those people who get it.

After Thanksgiving, holiday cards and letters begin rolling into our house. My husband and I (who are in our 30’s and don’t have kids) are swamped with cards from proud parents. And it’s a good thing. People should be proud of their kids.

But where does caregiving fit into your family Christmas card? How do you fit in that paragraph about how your mom with dementia moved in because she kept overdosing on her meds? Should you add something about how your grandma has no idea who you are but you feel like your connection with her brings you both a lot of joy? There seems to be no place in the family Christmas card for the negative or positive aspects of caregiving.

When you’ve got a new baby, you probably have no problem finding a babysitter. Let’s face it–people think babies are cute. Most people, especially women, like to hold them, try to get them to smile, listen to them babble. But asking someone to stay with your loved one who has Alzheimer’s so you and your husband can have a night out? That may not be as easy. We are comfortable with the idea that babies need 24.7 care. We are totally uncomfortable with the idea that some adults may need 24.7 care as well.

A couple of years ago I reported for jury duty. A woman in the jury pool explained to the judge that she was breastfeeding. She wasn’t sure exactly what she should do if she was chosen for a jury and had to stay the entire day. The judge was sympathetic, and he dismissed her.

Recently, someone asked me if I thought she could get out of jury duty because she cared for her 85-year-old mother who wasn’t able to be left home alone. She couldn’t find anyone to stay with her and didn’t think she should bring her to the courthouse. I honestly had no idea if that was an acceptable reason to be excused from jury duty. But I now know that breastfeeding is.

And let’s talk about our goals as parents. We tend to think we are good parents if we send our kids out into the world to be kind, successful, and happy adults. We watch them walk across stages at graduation, get married, get job offers…and we feel a sense of pride, like we’ve done something right.

How do we judge whether or not we’ve done a good job as a caregiver? When do we get to feel that sense of accomplishment? When do we enjoy those milestones where we get to pat ourselves on the back?

I’m not saying caregiving isn’t fulfilling. I’m not saying you don’t have joyous moments where you realize you’ve done something meaningful, valuable, and important by caring for your loved one. But the highs of being a caregiver are different than the highs of being a parent.

Parenting and caregiving are both adventures. I can’t deny that. But they are unique adventures. And the caregivers I know often struggle because they are caregiving within a society that is not set up to support caregiving. Saying we become parents to those adults we provide caregiving to ignores some of the distinct challenges faced by caregivers.

So caring for your mom who is in end-stage Alzheimer’s isn’t like taking care of a newborn baby. I’m gonna guess that no one threw you a shower and brought you gifts.

My Letter to Caregivers in Dementialand

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Back in November, I had a really bad day. Our cat, Macy, had been at the vet’s office for about a week when we had to make the decision to put her down. She was in kidney failure and her back legs had stopped working. My husband and I planned to say goodbye in the late afternoon.

Right before that dreaded appointment, I had an obligation of another type. I had been asked to present to a support group sponsored by the Alzheimer’s Association. Normally, I have at least some idea what I am going to talk about when I walk into something like that, but on that day I honestly hadn’t even thought about it. I was a bit of a mess. Correction. I was a trainwreck.

I took a different approach to presenting that day. I sat back in one of the comfortable chairs in the chapel that held the meeting and asked each person to tell me why they were there. Most were spouses of individuals with dementia, and most were caregiving for their loved ones at home. All mentioned something about being exhausted or stressed.

After they introduced themselves, I decided to focus on demonstrating some skills that are suggested for working with those toward the end-stage of dementia. I showed some techniques from Teepa Snow’s Positive Approach to Care (worth Googling if you’re not familiar) and emphasized using the hand-under-hand method for assisting with feeding.

Maybe it was just that I was having a really crappy day and was struggling to focus, but I stopped in the middle of showing them the “correct” way to assist people with dementia in eating.

I said something like this: “I know this seems like it takes a lot longer than just trying to cram a spoon in somebody’s mouth. And it does. And I know you’ve got other stuff to do. You’ve got laundry, dishes, paying bills, mowing the yard. And although this method sounds great in theory, do you really have an extra 15 minutes a day to do it this way? And is your own food gonna get cold while you’re working this method with your loved one?”

I didn’t plan to say this. And I’ve never really stopped a presentation before to interject a statement like this, but somehow it worked. They felt listened to. They felt like I got them.

From that point forward, they tuned in and heard what I had to say. I think it might have been because I made it clear that I had listened to them. It was a good reminder that sometimes when I work with caregivers I do too much talking and far too little listening.

For the record, they bought into the hand-under-hand idea for feeding and wanted to learn more. Most of them told me they were going to try it with their loved one. I actually think they bought into the idea more strongly after I acknowledged the reasons it would be challenging to fit it into their daily routine.

A couple of years ago, I presented to a similar group. A man who was likely in his 80’s came up to me after the meeting.

He said cheerfully, “Dr. Eshbaugh, I am so glad you came here tonight to tell us all the stuff we are doing wrong so we can do it right.”

He wasn’t being sarcastic. He meant it as a compliment. He was genuinely grateful and appreciative. But it broke my heart. And I felt like a jerk. I don’t want to give caregivers the impression that they are doing it wrong.

I came home that night and wrote a letter to caregivers. I wanted to send a copy to that gentleman, but I didn’t have his name or address, so I kept a draft of the letter on my computer. And, to be honest, I really wrote the letter for myself because I realized that somehow I had gotten so focused on teaching dementia caregivers techniques and skills that I had stopped listening.

Here is the letter:

Dear Caregiver:

Your loved one has dementia, and here I am the “expert” trying to tell you how to deal with it. I don’t mean to come off as being critical. I may have some knowledge that you don’t have, but I know I don’t get your unique situation and all the challenges in your life.

I spout lots of information about how to deal with certain “challenging” behaviors, but I know not all of them will work all the time. And that’s not because you’re not doing them right. It’s just because dementia is awful. I hope that out of the 1000 tips I give you, maybe one or two will make your life just a little bit easier.

I’m not going to tell you that there’s some magic cure for dementia. If someone tries to sell you a magic cure in the form of a pill, vitamin, or diet, they are full of crap. Run the other way. I wish I had some magic to sell you, but I don’t.

What I’m selling isn’t as fancy. I want to give you an arsenal of strategies (new ways to think, different techniques to try) that will help you and your loved one to live with more love and laughter on this journey. That’s the best I can do. 

I also want you to know that you are a resource for me. At least once a week, a caregiver will tell me some strategy that they use in negotiating dementia and I am in awe because it’s brilliant. And I want to know those stories because they can help me to help other people.

I’m up to date on all the evidence-methods for working with people who have dementia. I read research article after research article, and I even publish research articles of my own. But unless I can continue to connect with caregivers, I’m really pretty useless.

Sincerely, 

Elaine

 

Til Death Do Us Part in Dementialand

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This is not the post you expect it to be. If you’re looking for a heartwarming tale, you might want to check out “Chicken Soup for the Soul: Living with Alzheimer’s and Other Forms of Dementia.” (Yes, it really does exist, and it’s not a bad book if you’re into that type of thing.) But I’m not sure you’re gonna get warm fuzzies from my post today. In fact, I have no idea how you’re going to feel after you read this post.

In my visits to a nursing home, I met a bubbly nursing home visitor in her 50’s who I will call Jean. Although I tell this story with her permission, I have changed her name. Jean’s husband, who I’ll call Gary, was also in his 50’s, but his appearance would have lead me to guess he was in his 80’s. Gary, who had younger-onset Alzheimer’s, had lived at the nursing home several years. He was in end-stage Alzheimer’s and seemed somewhat stalled there.

He spent most of his time in bed. He had to be turned every few hours to avoid pressure sores. When the staff got him up in a wheelchair, he slumped over to one side–usually unable to keep his eyes open. He fought a constant battle against pneumonia (common among people in end-stage Alzheimer’s due to compromised immunity) and was on a thickened liquid diet to avoid aspiration. He had not spoken for over a year. Jean told me he stopped recognizing her long before that.

Jean worked full-time and stopped by every evening. Sometimes she sat with him and watched Wheel of Fortune while holding his hand. Once in a while, I saw her doing crossword puzzles. She enjoyed talking to other residents and their families. She was bright, caring, and always laughing.

If you’ve spent any time in nursing homes, you know that they can be gossip mills. I found out through the nursing home gossip mill that Jean had boyfriend. Not that she was hiding it. It had just never come up when I made small talk with her.

As I got to know her a little better, she’d mention her weekend plans or what she did the previous evening, casually dropping the name of her boyfriend. I didn’t ask too many questions. I’m sure she had enough judgement in her life, and I didn’t want her to misinterpret my curiosity as disdain. Frankly, it was none of my business.

But I learned more as time went on. Gary was diagnosed with Alzheimer’s in his mid-40’s. His mom had younger-onset Alzheimer’s as well, so they weren’t shocked, and they had an idea of the path ahead. They went on a few trips right after the diagnosis. Jean knew these trips would be bittersweet, but they ended up being more bitter than sweet.

Unlike many people who tell their loved ones to never put them in a nursing home, Gary told Jean that he didn’t want her to care for him at home as the disease progressed. He made the choice to put his mother in a nursing home although she repeatedly requested that he never do so. He lived with that guilt, and he didn’t want to Jean to have to do so.

When the time came, she placed him in a nursing home. She visited every evening. A few years later she met someone. She continued to visit Gary every evening. She told me she loved Gary as much as ever, but she no longer viewed him as her husband.

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

I can’t say Jean’s situation is the norm when a spouse has dementia, but I also can’t say it is rare. In fact, on the very same nursing home hallway where Gary lived, there were two other wives in similar situations. I am not speaking of wives who had abandoned their husbands at a nursing home. I’m talking about wives who visited at least once a day, were active participants in their husbands’ care, and had boyfriends.

It’s common enough that the Wall Street Journal wrote a story about it several years ago:

http://www.wsj.com/articles/SB10001424052748704317704574503631569278424

Even religious authorities are split on whether this is okay or not. I’ve kicked it around quite a bit, and all I can say for sure is this:

If I had dementia, needed 24/7 care, and no longer recognized my spouse, would I be okay with my husband dating someone else? The answer (for me) is absolutely yes. And I would not want him to feel guilty about it for one second. Of course, I haven’t been diagnosed with dementia. Could my thoughts on this change if I were diagnosed tomorrow and saw dementia a real rather than hypothetical part of my future? Of course.

I know that Jean was with Gary when he passed away. Til death do us part. Or something like that.

 

Family Ties in Dementialand

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A friend who works in the health care field sent me a text to tell me that she was reading my blog. She mentioned having experience with a patient who had dementia, but that the woman always showed up at her appointments with a neighbor. Her family wasn’t around–or at least wasn’t interested in her care. My friend was sad that the woman’s family wasn’t there for her.

I sent a text back, telling my friend that the neighbor was this woman’s family.

It’s been a common theme over the past several years in both my personal and professional life.

Family is related to you by blood. Family is created by legal ties. And then there’s family that doesn’t fit into either of the previous categories. But when you need something, they’re around just the same.

I gave a community presentation on dementia caregiving about a year ago. Two middle-aged women came up after the presentation to ask a few questions: What if she’s not sleeping? Is it normal that she’s losing weight? Why does she have so much trouble keeping her balance? How do we get her to move into a facility when she doesn’t want to?

I made the assumption that the two women were partners and that the woman they were asking about was one of their mothers. As it turns out, I was half right.

They were partners, but the woman with dementia wasn’t one of their mothers. Or grandmothers. Or aunts. Or siblings. She was a woman who lived a few blocks down the street.

“How did you come to be a caregiver for a woman who lives a few blocks down?” I asked them.

They explained. This woman had been welcoming when they moved to the neighborhood twenty years ago. Not everyone in the neighborhood was so welcoming to a lesbian couple in the 1990’s. When they started noticing she needed a little extra help, they stepped in. They mentioned that she didn’t seem to have much family.

“But she does have family,” I said. “She has you guys.”

Anthropologists and family scientists call this “fictive kin”–family that is not defined by blood or legal ties. I actually don’t like this term because it makes me think of “fiction,” and there’s nothing fictional about fictive kin.

My students and I talk about family in the courses I teach. I ask them who their family is and what makes them family. We come up with a variety of definitions–not necessarily right or wrong, but maybe a little different for everyone.

One of my students came up with a definition that I can relate to. She said that the first few people you have to text when you get really good or really bad news are your family. Many of my students nodded knowingly.

To be fair, maybe it’s not texting for you. Maybe it’s calling them or stopping by their house. But those people who you can’t wait to share good news with? Those people who support you through tough times even when you don’t ask them to? I’m not sure I can think of a better definition of family.

Sure, I see people with dementia who have little support. But most of them are loved. Some are loved by people who are related to them by blood or legal ties. Some are loved by people who aren’t related to them. And the really lucky ones are loved by both.

About ten years ago, I got to know a hospice patient that I’ll call Lydia. She had Alzheimer’s and end-stage cancer. She was staying at a hospice house, and I visited her a couple times each week. I really didn’t know a lot about Lydia. She had a son, but I knew they weren’t close, and her husband had passed away decades earlier.

One day hospice social worker called me to let me know Lydia’s time was quite limited. I stopped at the hospice house knowing it would likely be the last time I’d get to see her.

As I walked into her room, I was met by Lydia’s lifelong friend Ellen, Ellen’s husband, and Ellen’s niece. Lydia had mentioned Ellen before, and I was excited to meet her. The three of them were sitting around Lydia’s bed, talking about fun times together, and doing a lot of laughing. Lydia wasn’t responsive, but I told them I certainly wouldn’t doubt that she could hear them. Ellen and her niece were drinking wine, which they joked about smuggling into the hospice house (although I’m guessing they probably did ask the staff for permission).

The hospice pastor stopped by. He asked if we’d like to say a prayer. Before he started praying, he asked, “Will her family be coming to say goodbye? Should we wait for them?”

Ellen looked at the pastor, somewhat annoyed, and responded, “Her family is here.” He proceeded with the prayer.

Blood makes you related, but shared DNA can’t make you family. Recounting someone’s life at their bedside while drinking wine at the hospice house? That makes you family in my book.

Missed Potential in Dementialand

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We spend too much time thinking about what people can’t do rather than focusing on what they can do. And I am no exception. Sometimes I forget to look for the abilities and strengths of people with dementia. How blind can I be?

Speaking of abilities…My friend Jen Eby is amazingly talented. She made me a beautiful quilt for Christmas. It matches the colors we just painted the living and dining room. I am like Linus from the Peanuts gang with this quilt. I carry it from the couch, to the recliner, to bed…If it were acceptable, I would take it to work. And, considering Iowa’s recent weather, I may consider this even if it’s not acceptable.

I was texting with Jen about how much I love this quilt and how I wish I had a hobby like quilting that I could do at night to unwind. We were talking about how I could learn crocheting. (If you know me, you may be laughing at this thought. I’m not offended.) Jen said there were plenty of online resources, including YouTube tutorials, for people who want to learn to crochet. She said it’s not that hard to teach yourself.

Then she reminded me that I was a gerontologist and asked if I knew any older ladies who might like to teach me.

Wow. I was disappointed in myself that it was so obvious and yet I hadn’t thought of it. I walk in and out of nursing homes, memory care units, and adult day services a few times a week. I see many women knitting or crocheting. Some of them have dementia. They may struggle to tell me what season it is or what they had for breakfast, but they continue making blankets, hats, gloves, you name it….But when thinking about how I could learn to crochet, it never occurred to me to use them as a resource.

Why hadn’t it occurred to me? I am always promoting positive views of dementia (or at least trying to). Yet I hadn’t thought about asking one of my friends with dementia to teach me to crochet until Jen suggested it.

As dementia progresses, affected persons may struggle to learn new things because of compromised short-term memory. But sometimes the ability to teach remains long after the ability to learn heads south.

Just like the rest of us, individuals with dementia are unique. As the saying goes, “If you’ve seen one person with dementia, you’ve seen one person with dementia.” And their skills and capabilities are unique.

We talk a lot about what people with dementia can’t do. We discuss their challenges. We know it’s a struggle.

And, yet, they sometimes amaze me.

I once talked to a woman who was in her 50’s and working on her master’s degree when she was diagnosed with younger-onset Alzheimer’s. She was able to finish up her degree. She got it done faster because she knew it might get harder if she procrastinated and her dementia progressed.

I am continually impressed with those who have dementia but remain involved in advocacy work. They lobby for more money to be put toward research, work to reduce stigma, and talk about their experiences to help the rest of us “get it.” I know a lot of people in the earlier stages of dementia who participate in significant amounts of volunteer work in a variety of settings. Of course, some are in the workplace. Sure, they may have limitations, but really don’t we all have our limitations?

I like to think that every person I come in contact with knows something I don’t know. Everyone has something to teach me–whether or they are aware they are teaching me or not. Dementia doesn’t change this. In fact, over the past few years people with dementia have been some of my best teachers. They’ve taught me historical lessons (about things like flagpole sitting, D-Day, and why we use tinsel on Christmas trees) and life lessons (e.g., the stuff that really matters in life).

And to think it never occurred to me that someone with dementia could teach me to crochet.

P.S. I still haven’t learned to crochet. Not that I don’t have anyone to teach me. Just that I decided it seems kinda boring and tedious. As I said, we all have our strengths. I’ve come to the realization that crocheting might not be one of mine.

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?