Category Archives: families

Stuffed Cats and Real Cats in Dementialand

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I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat.

About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other health conditions) and lived at an assisted living. She was reserved when I first started stopping by, and I had trouble connecting with her.

One day, I notice a stuffed cat sitting on her bed. She sees me looking at it and asks if I like cats. I tell her that I do. She smiles.

“Well,” she says. “You’ll love my Tiger. He is quite a cat.”

I’m not sure if she thinks Tiger was a real cat or not, so I walk over to pet him.

“Be careful,” she warns. “Tiger still has his claws.”

Yep. Linda thinks Tiger is a real cat. I shift gears and start interacting with Tiger as if he is a real cat. In other words, I step into her reality. Linda perks up some, and suddenly we have a connection. I figure out that Tiger is the key to engaging her.

Every time I stop by, I ask about Tiger right after I come in. He’s usually on her bed. Sometimes I pick him up and put him on the windowsill so he can watch the birds. A few times we find a nice sun puddle on the floor for him. One day she mentions that Tiger looks chunkier and accuses me of sneaking him tuna. I confess, and she smiles. I even buy Tiger a toy. Yes, I spend $5 on a toy for a stuffed cat. And Linda is beside herself with excitement, and I’ve forgotten that Tiger isn’t a real, living, breathing feline.

I come by one summer day while her son is visiting. When I ask Linda about Tiger, he rolls his eyes.

He tells me, “I’ve told her time and time again that Tiger has been dead for five years. He got hit by a car on the highway.” Linda looks at him, and then at me. I’m really not sure what to say.

“Actually, Tiger’s okay. He’s right here,” I say tentatively. The son takes a long look at me as I pet Tiger. I’m pretty sure he’s wondering if I’m the biggest idiot he’s ever met.

“You are petting a stuffed cat,” he says. “That’s not a live cat. It’s stuffed.” Let’s just say Linda’s son and I are not on the same page here, and I’m not about to let him break his mother’s heart.

“No, Tiger is a real. Alive and well,” I say. This is awkward. The son is not going to relent, and neither am I. I have now decided I am not going to admit to the son that the cat is stuffed. And once I pick a battle, I’m all in. He glares at me.

“Do you really not know this cat is stuffed? We bought him at Walmart,” he responds. “This is a stuffed cat.” At this point I should take this guy out in the hallway and explain why I am set on insisting Tiger is a real cat, but I don’t think of that at the time.

“Well, Linda knows that Tiger is real, so Tiger is real,” I say. At this point, I have Tiger cradled in my arms. I’m squeezing him tighter and tighter as I get more and more frustrated. If Tiger were alive, I might have suffocated him.

The son stares me down. It’s intense. Linda looks at me, and then at her son. He sighs and walks into the other room. I consider it a victory.

Mistaken Identities in Dementialand

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I spoke at the Illinois and Iowa Quad City Family Conference on Saturday. We had a great turnout, and even had some press coverage:

http://qctimes.com/news/local/caregiver-conference-attracts-its-biggest-crowd-ever/article_ee4294a2-6fb4-5e3e-ba81-64b7666b8288.html

(Please note that I hate my press photo and have no idea why it appears that my hair is longer on one side than the other.)

After I spoke, a small line of people formed by the stage to talk to me. I jumped off the stage because I didn’t want to “talk down” to people. This jump turned out to be a poor decision. I had on heels and should’ve used the steps. I practically took down a lovely woman in her 50s with me when I landed. Fortunately, she seemed willing to break my fall. After I was pretty sure I would not need medical attention, she told me a story.

Her mom has Alzheimer’s. Her father had been an abusive alcoholic and left her mother decades before, and her mom had remarried. On most days, her mom didn’t remember that her first husband had walked out, and she certainly didn’t remember getting remarried. She called her second husband by her first husband’s name. Ugh.

A side note about being mistaken for someone else…If we like that person, we generally tolerate it much better. For instance, I went to high school with a girl named Kelly Oliver. I didn’t think we looked all that much alike, but I got called Kelly once in a while. I will add that Kelly was cute, athletic, and the sweetest person you’ll ever meet. I corrected people when they called me by her name, but I also didn’t mind being mistaken for her. I was flattered.

This guy was in a different boat. Not only was his wife unable to correctly identify him, she was mistaking him for someone who was a real jerk. I’m sure he wasn’t a fan of his wife’s first husband, and now (in her reality) that’s who he was. She would even make occasional comments about how needed to stop drinking, go back to Alcoholics Anonymous, and stop cheating on her.

I asked the woman how her mom’s current husband responded when he was mistaken for her first husband. She told me that he had stopped correcting her. He had even apologized for “his” past drinking problems and “his” affairs. Then he promised that this part of life was behind him and he would always be there for her now. It sounded like he made his promise quite a bit, and it seemed to comfort his wife. In fact, she would usually smile and say something about a “new beginning” for them. For the time being, his strategy seemed to be working. I was impressed. Really impressed.

I’m always telling families to stop arguing about who you are. Just roll with it. However, it’s a lot easier to do this when you’re mistaken for someone who you like and respect. When you’re not flattered by who grandma thinks you are, you tend to get a little bit more argumentative.

I once was visiting a memory care community when I heard a young woman tell her grandma in an annoyed tone, “Grandma, I’m Hannah. Liz is my sister. You can tell us apart because Liz is A LOT heavier than I am. And her nose is bigger.”

I think I might have laughed out loud. If grandma can’t tell her granddaughters apart, she is probably not going to remember the next time she sees them that Liz is the heavier of the two and needs a nose job. And, on the off-chance she does remember, she may tell Liz that she recognized her because she’s fat and has a big nose. Not exactly a win-win situation.

The take-home message here is that we can have a connection with someone even if they don’t know who we are or thinks we are someone else. Often times, we destroy that opportunity for connection when we spend time arguing about who we are.

I know it’s hard. And you get to grieve, but you don’t get to do it in front of them. If mom thinks you’re her sister instead of her daughter, continue on and have a positive visit. Talk about the weather. Smile and laugh. Then, after you leave, cry in the car. Or call a friend to vent.

It’s brutal to accept that someone you love no longer recognizes you, but accepting that may be the key to enjoying time with them. Sometimes we have to let go of what was in order to enjoy what is.

“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.

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.

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.

Love and Lipstick in Dementialand

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I used to visit a particular nursing home frequently. I often saw a woman with dementia and her husband. She had been at the facility for several years. He lived down the road at a retirement community but spent most of his days with her at the nursing home.

Her makeup was always perfect. Foundation. Lipstick complete with liner. Blush (or rouge, as I’ve learned it is called by older women). It was a bit dramatic for my taste, to be honest, but applied with professional precision.

Her hair was always matted in the back because she was in and out of bed all day. But never a flaw in her makeup.

She was non-verbal and had what I called the dementia gaze. She was looking at you but not looking at you. I often watched her husband assist her with meals. Although it appeared she had no clue what was on the spoon, her husband made sure she didn’t eat anything she didn’t like–although someone might think she would not have known the difference. He’d say things like, “I’m not giving you any broccoli. I know you hate your broccoli, don’t you?” It took him forever to feed her, but he’d always comment that he was retired and had nowhere else to be.

It didn’t matter to him that she didn’t seem to know who he was. He was there for every meal. He chatted with her constantly, sometimes telling her awful jokes that were often a bit off-color. He talked about their family. One day he brought in a picture their granddaughter had drawn. He was unfazed by his wife’s apparent lack of response.

I saw them in passing for several months. I typically exchanged pleasantries with the husband. One day he told me they were celebrating an anniversary. “You know it’s a special occasion,” he told me, “because she’s wearing her red lipstick instead of her pink.”

I had been curious about the perfect makeup, to say the least, so this peaked my attention. He added, “You know, I’m her makeup artist.”

He told me the story. She had been diagnosed with Alzheimer’s a decade earlier. Always a beautiful woman (and never seen without makeup in public), the thought of not being able to apply her own foundation, rouge, and lipstick was terrifying. He told her that was no big deal…he would learn to apply her makeup. And he did. I told him that I’d let him put makeup on me anytime, and he seemed flattered.

Life had another curve ball in store for this couple. He was diagnosed with cancer and underwent surgery to remove a large mass from his pelvis. Sadly, he never woke up. She lived several more years. It’s not unusual that the caregiver passes away before the person with dementia, but this situation was really difficult for me to process. I hated going to the nursing home and seeing her without her makeup.

But I don’t think she missed her husband. You can’t miss your husband if you don’t remember you had one.

I didn’t mean for this post to be so sad, really. What I want you to pull out of their story is not sadness or tragedy (although there’s certainly a great deal of sadness and tragedy here); it’s LOVE. Focus on the love. The world would be a better place if everyone was loved like she was loved.

I’ve seen love in Dementialand that I’ve seen few other places. We continue to love people who don’t know who we are. Our spouses and parents view us as strangers. If someone doesn’t know who are you, can they still love you? Or does it even matter? Because you love them anyway. On most days, I am more in awe of the love that exists in Dementialand than the sadness than inhibits it.

But Is Alzheimer’s the Same Thing As Dementia?

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Question: Is Alzheimer’s the same thing as dementia?

Answer: Alzheimer’s is to dementia….as chair is to furniture. Alzheimer’s is to dementia….as orange is to fruit. Alzheimer’s is to dementia….as beagle is to dog.

You got that? If so, stop reading now. You won’t hurt my feelings.

If that doesn’t make sense or you want to learn more, read on.

Dementia is a set of symptoms. These symptoms might include changes in memory and/or personality, poor judgment, inappropriate behavior, impulsiveness, attention problems, and faulty reasoning. Notice I mentioned that dementia is MORE than memory problems. As a society, we tend to think that getting dementia just means we get forgetful. We lose our keys. We call people by the wrong names. We forget what day it is. And that’s a complete underestimation of how dementia can destroy a life.

People with dementia may show inappropriate sexual behavior toward family and friends. They may make racial slurs toward ethnic minorities at the grocery store. They might forget to pay their bills and find that their utilities are disconnected. It is common for people with dementia to wear clothing that is not appropriate for the weather (i.e., shorts in Iowa in the of middle of January). I once got a call from a woman who was horrified that her mother left her infant granddaughter home alone–because she forgot she was babysitting.

But does someone with dementia have Alzheimer’s? The answer is MAYBE. Alzheimer’s can cause dementia, but many other diseases can cause dementia as well. There’s Lewy-Body Dementia, Parkinson’s, vascular dementia (common after a stroke), Frontotemporal Dementia….Although there are many more causes of dementia, these are among the most common. When someone shows signs of dementia, it’s important to get an accurate diagnosis, and this typically comes from a neurologist, a neuropsychologist, or a psychiatrist.

Alzheimer’s is the LEADING CAUSE OF DEMENTIA. What many people don’t know about Alzheimer’s is that it is a terminal disease. Alzheimer’s kills. It kills because is causes total brain failure. Our bodies cannot continue to function after enough of our brain cells die. When I do public speaking, I often mention in far too casual of a manner that Alzheimer’s is fatal. I am working on that. I need to be gentler with this information. I throw it out there assuming that the families of those with Alzheimer’s know that Alzheimer’s is terminal. I should know better.

My grandmother died of pancreatic cancer. We knew it was terminal cancer at the point of diagnosis. She passed away less than a week later. For those days, my family lived in crisis. We struggled to eat. We struggled to sleep. We cried. But we survived. You can live like that for four days. You don’t do permanent damage to your physical or mental health.

But Alzheimer’s is different. You can’t live in survival mode for the duration of the disease. It is not unusual for someone with Alzheimer’s to live ten years after diagnosis. People cannot exist in crisis for the length of the journey. Care partners must take care of their own health, and they must find a way to seek out hope and laughter. Furthermore, they MUST accept help. In our society, we glamorize the person who sacrifices their own life to care for a loved one. But Alzheimer’s is a marathon. Caregiving for someone with Alzheimer’s and not accepting help is like running that marathon and not drinking water.

So does someone with Alzheimer’s have dementia? YES. Does someone with dementia have Alzheimer’s? MAYBE.

Gifts from Dementialand

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I’ll start by saying that dementia is NOT a gift.

It’s not a normal part of aging. It is cruel and debilitating.

And, yet, there may be gifts that come along with dementia. And when we are given a gift by dementia, we must accept it.

(I tell the following story with the permission of the family it is about.)

I spoke at an Alzheimer’s support group a few years ago. A woman came up after I was done talking to ask a question. She explained that her sister, Suzy (not her real name), had died by suicide eight years earlier. Suzy had been a drug addict who was diagnosed with bipolar disorder. She’d struggled to hold a job and had rocky relationships with her family, including her parents.

Her mother, Millie (again, not her real name) had found Suzy after she passed of a gun shot wound, and not surprisingly Millie had been plagued by depression since the death of Suzy. The situation was even more heart-breaking because Millie and Suzy had a big fight the evening before Suzy’s passing, and Millie had said some things for which she would never forgive herself.

Millie had been on several antidepressants and seen multiple therapists in the years following Suzy’s passing, but nothing relieved the depression which plagued her. In fact, it only seemed to get worse. Millie quit her part-time job, stopped seeing her friends, and barely left the house.

As Millie entered her 70’s, she received a diagnosis of Alzheimer’s. Soon after her diagnosis, Millie began saying things like, “Suzy hasn’t been around much lately. I wonder what she’s up to,” and “I’m hoping Suzy can make it to dinner this week.” Her family realized that she had no memory of finding Suzy after she had passed away. Although Millie struggled to do everyday things like make dinner, put away laundry, and take care of her dog, the depression seemed to lift.

The woman telling me this story could hardly get the next part out without tears. She said, “And it’s so hard telling Mom over and over that Suzy is dead. We have to tell her at least once a day.”

I asked what Millie’s response was when they told her Suzy had passed away several years ago. The woman said, “Well, even though it happened eight years ago, she breaks down just like it’s the first time someone’s told her.”

WAIT. STOP. It’s not “like” the first time someone’s told her. It IS the first time someone’s told her. Each and every time. It is the first time she’s hearing that her daughter is dead. It makes no difference that eight years have passed. It makes no difference that she’s been told literally hundreds of times.

In retrospect, I could have been gentler in my delivery, but I asked the woman to explain to me what it felt like when she was told her sister died by suicide. She told me her legs wouldn’t hold her up and that her gag reflex kicked in. She told me that she called friends to let them know but no words would come out when they answered the phone.

I pointed out that this was similar to what Millie felt every single day when she was told that Suzy was gone. The woman looked horrified but then asked a question that people ask me a lot: “But is it okay to lie?”

YES.

And if you don’t want to think of it as lying, you can call it “therapeutic fibbing” or “stepping into their reality.” Whatever makes you feel better about it. But YES.

Millie lived in what I sometimes refer to as Dementialand. In Dementialand, Suzy was still alive. And, in that sense, Millie’s reality was far more comforting than the reality that her family tried to insist upon.

Her family can argue and correct her all day long (as they were doing), but they can’t get her out of Dementialand. This is apparent when Millie asked again the following day where Suzy was. As a family, you have to learn to step into Dementialand instead of fighting it. And in this particular case, Dementialand had some advantages.

Living with dementia is hard work for the individual who has it. You may question others; you may question yourself. You may have debilitating anxiety. Dementia is about complete brain failure. It’s cruel, unrelenting, and terrifying.

This is why when dementia gives us a gift, we take it and run.