Tag Archives: dementia

Assholes in Dementialand

alzheimer's, dementia, lewy body dementia, ,

One of my college students, Hillary, had come with me to a particular adult day center once a month for a couple of years. Today was her last day because she was headed to grad school at Syracuse.

One of the guys, who I will call James, was really attached to Hillary. He would rush in, pushing his walker to make sure he got to sit by her each time we came. He once asked her if her eyelashes were natural or if they were “imposters.” Talk about charming… Although he has vascular dementia, he has never forgotten a detail about Hillary. My male college students could learn a thing or two from James.

I make sure to take a picture of them together that day. I would tape it up in my office. It is right over my computer screen, and every time I look at it I smile. I also gave one to James and one to Hillary.

James has been to visit Syracuse two times in his life. He remembers what county it is in and the main highways that run through the city. I ask him if he thinks it will be a good place for Hillary to live for the new few years. He turns to Hillary and looks her in the eye. Long pause… I feel like he is ready to dispense a life lesson, and I’m right.

“Hillary,” he says. Dramatic pause. “No matter where you go in this world, 10% of people are assholes.”

He goes on to explain that 10% of people in Syracuse are assholes, just like 10% of people in Iowa are assholes, just like 10% of people in Korea are assholes. He tells Hillary to watch out for the assholes, but there won’t be any more there than there are here.

That was about two years ago. I cannot tell you how often I think about what James said. When I am in the checkout line in the grocery store and some jerk elbows his way in front of me, I think about how he’s in the 10%. The other day I was running on the trails and some idiot on a bike refused to move over to give me a little space as he passed. He’s part of that 10%. And I’m sounding sexist here. There are plenty of women in the 10% as well, like the employee at Culver’s who stares me down after I ask for a veggie burger as if I’ve ordered her to hand over her first-born child.

Somehow admitting that 10% of the world is made of assholes makes it easier for me to acknowledge I’ve run into one and then move on with my day. I try to focus on the other 90%.

As for Hillary, she is now almost done with graduate school. She loves hearing updates about James, who still asks about her every month. So much for that generation gap thing.

Writing About Dementialand

alzheimer's, caregiving, dementia, publishing, ,

If you asked me in the first grade what I wanted to do when I grew up, I’d say I wanted to be a writer. If you had asked me a year earlier, I’d had said I wanted to be a gas station man because I liked the smell of gasoline. (That’s a flashback to the 80’s when people still pumped your gas for you, and I still love the smell of gasoline.)

My desire to be a writer stuck around longer than my lofty goal of pumping gas for a living. When I was in the first grade, I wrote a series of books about the Kit family. I think there were about six “books” in the series. At the start of the series, the Kits had maybe seven kids. They had at least one more in each of the books. It was a 1980’s fictional version of the Duggars from TLC.

In the first grade, I decided to form a business relationship with a classmate. She said she liked writing, too. I invited her over for a sleepover where we would co-author a book. As the night went on, I realized she wanted to play board games–and she wasn’t really interested in collaborating in the same way I was. I asked my mom to take her home immediately. My mom refused. I didn’t get a thing written that night.

I have spent much of the last 15 years writing theses, dissertations, and research articles. Although it sounds boring, I like it. As a faculty member, I have to publish–and I enjoy thinking of it as a game. You come up with a research question, do a study, write it up, and then set out to find a research journal that will publish your work. If they publish it, you win.

But coming into 2015, I was looking for something, but I didn’t know quite what. Enter my blog.

I have to be honest and let you know that I had a motive. I was going to start a blog, be discovered by a huge publishing giant, and be offered a cash advance to make my blog a book. And then I would finally have achieved the goal I set in the first grade to be a legit writer.

So I started this blog with the goal of making Welcome to Dementialand a book. Oh, and then maybe there’d be a documentary. Someone from NPR would interview me, and I was pretty sure somehow I’d end up on the Ellen Degeneres Show (and that would make my mom cry tears of joy–my mom LOVES Ellen).

But the more I wrote, and the more I thought about what I was writing, I realized that maybe all of these end goals were really not the point. The more I work with people who have dementia, the more I realize that it’s not about where you’re going. It’s about connecting with people in the moment and enjoying the present regardless of where the future might take you.

And this blog has allowed me to connect with people. I’ve connected with people who have dementia. I’ve connected with caregivers. I’ve heard from old neighbors that I haven’t talked to in years. Friends, acquaintances, and strangers. Maybe that’s what this is all about.

It’s hard for me to say this because I’ve always been a really goal-oriented person. The goal was to get a PhD. The goal was to get tenure. The goal was to run a marathon. I reached all those goals. But sometimes maybe it’s about the journey. In the past, I’ve been so focused on the goal that I totally missed the value of the journey. That’s what people with dementia have forced me to realize.

When you don’t remember your past, and you don’t know what the future will bring, you’ve got the present. There’s a lesson in there for all of us. We are not the same people we used to be, and none of us have a certain future. But we can enjoy the moment and connect with each other.

For the record, I wouldn’t turn down a book deal. But I don’t need a book deal to be a legit writer. After all, I already wrote all those books about the Kit family. And maybe my blog isn’t good enough to be a book, and it’s likely that NPR and Ellen will never have any interest in talking to me. I am absolutely okay with that. For now, I’m taking a lesson from my friends with dementia.

I was at a memory care community a while back, and I overheard two women with dementia having a conversation. One asked the other if she had any weekend plans.

The other responded, “It doesn’t matter. Right now I’m sitting in the dining room with you and it’s nice.”

So…to those of you who are with me on this journey, thanks for sitting in the dining room with me. It really is nice.

Mistaken Identities in Dementialand

aging, alzheimer's, caregiving, dementia, families, , , ,

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.

Candor in Dementialand (aka Notes on Whether My Hair is Scroungy like an Alley Cat)

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I sometimes struggle with apathy when making decisions about the big things in life–like my hair. It used to be closer to chin length and now it’s shoulder length.

I’ve asked a few friends if they like it better shorter or longer and no one gives me a straight answer. They say things like, “Oh, it looks good both ways.” They are being nice…I get that. But sometimes I want honesty.

Fortunately, I work with people who have dementia. I was at a Memory Trunks program last week when a gentleman with vascular dementia asked me, “Is your hair longer these days?”

“Yeah,” I responded. “I don’t know if I should be growing it out or keeping it shorter.” He interrupts.

“Cut it. Cut it. Cut it,” he says. “It looks scroungy and there’s no point.” An honest opinion. He looks me right in the eye. For effect, he adds, “SCROUNGY. And pointless.”

I can tell this makes the staff uncomfortable. An employee steps in and says, “You have such pretty hair. It looks great longer or shorter.” But they don’t need to worry. I enjoy the honesty.

I later told my friend Holly that someone with dementia said my hair was scroungy. She told me that I am the least scroungy-looking person she knows. When I told another friend, Jen, she said, “Scroungy? Like an alley cat?” Yeah, maybe.

I’ve been told that I’ve put on weight (truth….). I’ve been asked why I was wearing combat boots (In fact, they were $150 boots I had saved to splurge on). It’s been suggested that I wear lipstick–because men like women who wear lipstick. I’ve been told my voice is annoying.

And I should point out that none of these comments from people with dementia were mean-spirited. They were simply honest observations.

I have to admit that in life there are times that we shouldn’t be completely honest. Sometimes honestly is hurtful. But I think a little honestly is refreshing sometimes. And sometimes I have to credit people with dementia for making sure I don’t take myself too seriously.

A few months back, I gave a presentation on dementia to a small group of professional woman in the morning. I had been in a rush and grabbed piece of toast with peanut butter to eat in the car on the way there. I gave the presentation and thought it went pretty well. Next I went to do some programming for people with dementia at an assisted living. I sat down in a chair and greeted them.

“Good morning,” I said. “My name is Elaine.”

“Elaine,” said a tiny woman sitting several feet to my left in a wheelchair. “You have peanut butter on your breast.”

I looked down, and sure enough there was a huge glob of peanut butter on my shirt. Keep in mind that I had already spoken to a group of 20 women that morning. I am positive that at least ten of those women had to have noticed the giant mass on peanut butter stuck to my shirt. No one mentioned it. I’m assuming they thought it would be awkward and didn’t want to embarrass me, but someone pointed it out within three minutes of my arrival at an assisted living.

They don’t care that I have a PhD. My credentials mean nothing to them, and that’s as it should be. To them, I’m not Dr. Eshbaugh. I’m just a woman with scroungy hair and peanut butter on her shirt. And there’s something about this that I really like.

The day after I was told I have scroungy hair, I made a hair appointment. I didn’t get it all cut off, but I did get it texturized and have some layers cut around my face. I’m hoping I look less like an alley cat.

Issues in Identifying Dementialand (aka Why I Shouldn’t Be Left Home Alone)

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My husband was at a conference all week, and I had a plan. I was going to paint the kitchen and put up a new light fixture.

I sent a text to my friend CJ who lives in Michigan to ask if he thought I was capable of putting up a light fixture. CJ happens to be an electrician. He told me it shouldn’t be that hard. There will be white wires and black wires. I just have to match them up.

Then he texts, “You got this.” And, a few seconds later, “TURN OFF THE POWER.” What he’s really saying here is that he wants to instill confidence in me but doesn’t have quite enough confidence to trust that I will turn off the power, but I appreciate that he doesn’t want me to die.

I buy a light fixture and some paint. I remove the existing light fixture. I lift the new light fixture over my head. I promptly drop it, and it shatters. Not a great start, but I can buy another light fixture the next day.

The next day I go back to Home Depot and buy a new light fixture. I give it another shot. Then I realize that the whole white and black wire deal doesn’t apply if you have a house that is 80 years old. All I have are two cloth covered wires.

I am not exactly a practical hands-on problem solver, so I text CJ (who is a practical hands-on problem solver) a picture of the situation and then call him. He tells me I am going to have to take a guess on the wires and then switch them if the light doesn’t work. After we hang up, I get a text: “YOU TURNED THE POWER OFF, RIGHT?” I appreciate that he cares so much about my personal safety. I follow his instructions but the light doesn’t work.

I get frustrated and quit. I decide to start painting. I am standing on my oven when I realize the top of our oven vent hood needs a coat of paint. Without thinking (obviously), I use the wall paint. Yeah, I know. You can’t do that. But it gets worse. I haven’t hit rock bottom quite yet.

I find some spray paint that says it can be used on metal, so I spray a coat of that over the top. Yeah, I know you can’t do that either.

I realize that this is a fairly large error in judgement. I text CJ a picture. He texts back, “HOLY MOSES.” Yeah, I know.

Then I go into full meltdown mode. I’m on the verge of tears and decide I need some wine. The kitchen is a mess because of my projects, so all I can find is a mug. I pour some wine into it. Then I sit on the kitchen floor, drinking wine out of a mug, and thinking about my weaknesses as a person.

A few weeks after my “incident,” I am visiting with an acquaintance. She has concerns about her grandpa (who she refers to as Grandpa Freddy) and is wondering if he might have dementia. I ask her why she’s concerned. She tells me that he was working on a simple bathroom project, got flustered, and just gave up. When her grandma came home, she found him sitting on the edge of the tub in tears.

This reminds me of my “incident.” Except Grandpa Freddy didn’t seem to do any actual damage and wasn’t drinking wine out of a mug while crying. And her grandpa’s behavior seemed to be more worrisome to family and friends than my behavior. No one wondered if I had dementia when I had a complete home improvement disaster followed by a meltdown.

You might attribute that to age. People are more likely to suspect you have dementia when you are older. However, there are people who are my age diagnosed with dementia everyday.

There’s another factor. We are different people. If I pull something similar when I’m in my 60’s, it’s probably not dementia. It’s just how I roll. Apparently, this wasn’t how her grandpa typically rolled.

He had done dozens of household projects. He was very competent, and this was a simple project that brought him to tears. Could he have dementia? Maybe, because it’s a change in behavior. We really don’t change that much as we age unless we have health issues.

The take-home message here is that when competent home do-it-yourselfers and rational problem-solvers start acting like I do regularly, they might have dementia. As for me, I’m fine. I just have a tendency to turn into an idiot when I attempt home improvement projects.

That’s why it’s so hard to diagnose Alzheimer’s and related dementias. We are all different to start. A doctor gives someone easy math problems. If they can’t do them, they might have dementia. Well, what if that person wasn’t good at math to start with? A person has flat affect and doesn’t show emotion. This could certainly be related to a dementia, but they may have been that way their entire life.

Using the wrong “there” and “their” may be related to dementia if you’re an English teacher, but I see people on Facebook may that mistake everyday. I’m not worried they have dementia. I know of an older woman who yells inappropriate comments at sporting events. A part of me wonders if she has dementia, but maybe she’s just inappropriate. I didn’t know her forty years ago.

And everyone, no matter how competent they are at something, messes up from time to time. Everyone uses poor judgment once in a while. We are talking about patterns of behavior here, not isolated incidents. And if something seems wrong, it could be something other than dementia (e.g., depression, cancer).

Final note on my “incident”… I got the light to work on the third day. As for the oven vent hood, I had to strip all the paint off with some crap that made my eyes burn and then repaint it with some epoxy stuff. It looks passable. CJ said he knew I had it in me all along. He may not have been telling the truth, but I appreciate it anyway.

“Role Reversal” in Dementialand

aging, alzheimer's, caregiving, dementia, families, parenting, , ,

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.

 

Oscar Night in Dementialand

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A little over a week ago, Julianne Moore accepted an Oscar for her role in “Still Alice,” a movie about a woman with younger-onset Alzheimer’s disease. She made the following statement in her speech:

“So many people with this disease feel isolated and marginalized and one of the wonderful things about movies is it makes us feel seen and not alone. And people with Alzheimer’s deserve to be seen, so that we can find a cure.”

I loved it. Except for the last seven words.

People with Alzheimer’s deserve to be seen. Period. Because all people deserve to be seen.

Don’t get me wrong. Finding a cure for Alzheimer’s is an important goal. We absolutely need to find a cure because the social and economic costs of not doing so are just too staggering. I continually advocate for more resources for Alzheimer’s research. I certainly don’t think we put too much emphasis on finding a cure. However, I do think we put too little emphasis on improving the lives of people who have all types of dementia today.

We’ve seen increased funding for Alzheimer’s research, and I cannot express to you how excited I am about this. Yet, we still write people off after a diagnosis. We give up on their quality of life as we renew our hope for finding a cure so future generations don’t have to deal with Alzheimer’s.

When we acknowledge people with Alzheimer’s, it’s often to put them forward and say, “Look what Alzheimer’s does to people. We don’t all wanna be like this. We need to find a cure.” It’s somewhat of a scare tactic. And maybe that’s okay, to some extent. But it’s only part of the equation.

Let’s acknowledge people with Alzheimer’s and ask what we can do to be more supportive of them and their families. What changes can we make to create a more dementia-friendly society? How can we educate people (from cops to nurses to bus drivers) to provide better services for people with dementia? What can we do to help community members learn to positively interact with people who have dementia–whether those people are friends, family members, or just individuals who need a little bit of extra time counting their cash when they’re ahead of you in line at the store?

I recently spoke with a man who is currently caring for his wife with Alzheimer’s at home. He told me that last year a large group of family and friends participated in the Walk to End Alzheimer’s in his wife’s honor. I told him I thought it was great that so many individuals were supporting him and his wife. He sighed.

He explained that he didn’t want to sound ungrateful because he was humbled by how much money they raised and how they designed and wore purple t-shirts in her honor, but that the same individuals were hesitant to come over because they were so uncomfortable around someone with Alzheimer’s. Very few of them talked to his wife like she was an actual human being if they did stop by for a few awkward minutes. They had little understanding of the disease but a lot of fear.

He tells me that everyone says they are praying for him. Long pause as he tries to find the right words. He is a nice guy and doesn’t want to seem negative. He says he appreciates prayers but what he really needs is someone to stay with his wife for an afternoon so he can run some errands.

“It was great that they all turned out in purple for the walk,” he told me. “But they don’t get it.”

He wants people to see his wife. Not because that will help us find a cure. But because all people deserve to be seen. And our society is falling short in seeing people with Alzheimer’s and other types of dementias.

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.