Category Archives: caregiving

What You Hear in Dementialand

alzheimer's, alzheimers, caregiver, caregiving, dementia, dementialand

This is the fourth in a five part series about dementia and the senses.

Today we will focus on hearing.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and the same examples–except in a much louder voice.

Here is my weakness: If someone doesn’t understand what I’m saying, I just say it again…in a louder voice.

I tend to think that my original explanation was so clear that the only reason the other person would need clarification is because they have a hearing problem. If you are thinking that I overestimate my own eloquence, you may have a point.

Chances are that I used a loud voice in the first place (no one has ever complained that my voice isn’t loud enough), and chances are that the person doesn’t have a hearing difficulty. It’s likely that my explanation isn’t resonating with them for some other reason. Yet, I just repeat the same explanation that doesn’t resonate–but louder. It’s not helpful.

My weakness tends to extend beyond explaining concepts to college students. If something I say doesn’t make sense to my husband, I’ll just say it louder to clarify. I know it’s not productive, but I do it anyway. If I’m at a work meeting and make a statement that results in quizzical looks from my colleagues, I usually just repeat the statement again. And I step up the volume, of course.

Unfortunately, I do the same thing to my friends with dementia. If I ask someone with dementia a question and don’t get a response when I expect one, I figure they didn’t hear me, so I ask again in the exact same way–except louder. And, I will add, that my louder voice probably also conveys irritation even if that’s not my intention.

People with dementia may have hearing difficulties due to age or other factors, but dementia itself doesn’t impact your ears. However, it does impact how you interpret auditory data.

Sometimes I forget that people with dementia need a bit longer to process any question I ask. I have to force myself to silently count to ten as I wait for a response. After ten seconds, I force myself to rephrase (not just repeat) the question. Maybe I use more hand motions or pointing. Maybe I use a different word for an object. I change something…something other than the volume.

People with dementia often have trouble focusing on the important auditory information and blocking out the rest. While I may be able to have a conversation with the TV turned on, someone with dementia typically finds it easier to focus on our conversation with the TV turned off. When a person with dementia is struggling to have a conversation with me, I look for extraneous auditory data that can be eliminated. Can I shut the door so we can’t hear the conversation of the people in another room? Can I close a window so the noise of the cars driving down the street isn’t a distraction?  Can I turn off the washing machine temporarily so my voice doesn’t have to compete with the swooshing noise?

It’s not that the person with dementia can’t hear over these other sounds. This isn’t a matter of volume. It’s that their brain has to work hard to distinguish important auditory data from unimportant auditory data. They may become tired or overwhelmed after trying to do this for a short time, and we may perceive this as disinterest.

Once I was sitting in a nursing home lounge talking to a man with Alzheimer’s disease. I was struggling to get a response from him. I was likely repeating my questions and increasing my volume. As my attempts at conversation were failing, there was very faint knock from down the hallway. It was a visitor giving a quick tap to a resident’s door before entering their room. I could barely hear the knock and probably wouldn’t have noticed it had the man I was visiting with not responded to the noise.

“Come in! It ain’t locked!” he yelled.

If he could hear that noise, his hearing was obviously not an issue. I closed my eyes for a second and did a quick survey of auditory information.

In the distance, I heard some chatter at the nurses’ station. There was some incessant beeping from residents who had pressed their call buttons for assistance. The window air conditioner in the lounge was making a rattling noise. I could hear the shuffle of nurses’ aides hustling from room to room, and a couple of residents across the lounge seemed to be having a conversation about the weather.

A few moments ago I hadn’t been hearing any of this noise. Sure, I was taking in the auditory data, but my brain was disregarding it in favor of focusing on the conversation I was having. This wasn’t intentional on my part. I did not have to plan to block out all of these extraneous sounds. My brain did that for me automatically.

My conversation partner, who had dementia, was not so fortunate. It’s not that he wasn’t trying to be engaged in our conversation. It’s not that he didn’t care about what I was saying. It was that his mind was not perceiving what I was saying to be any more important than the slightly obnoxious hum of the air conditioning unit.

When we enter Dementialand, we need to set individuals with dementia up for success. In this particular situation, I had not done that. I had asked this man to have a conversation with me in an environment in that was not conducive to the dementia brain. Increasing my volume was not going to help; in fact, a louder voice would likely convey an intensity that would discourage rather than encourage a positive response.

Once I was talking to a woman who had vascular dementia after a series of small strokes. I asked her a question. When she didn’t respond I went to my default next step…I asked her again…only louder. Much louder.

This time she made eye contact with me. She motioned for me to come closer. I figured her voice was weak, and she wanted to make sure I could hear her responses. I put my ear close to her mouth.

“I can hear you!” she yelled in my ear. “I’m not deaf, honey! Stop shouting!”

I guess I deserved that. Apparently this woman would agree with my husband’s assessment of my weakness.

In life…in relationships…and in Dementialand…

Louder is seldom better.

And I’m a work in progress.

Mole Checks and Mammograms in Dementialand

alzheimer's, caregiver, caregiving

“I get all these cards for her,” an older guy in jeans and a Chicago Bears jersey tells me after a community presentation on dementia. “And I don’t know what to do about them.”

At first I think he’s talking about greeting cards, but he’s not. He’s talking about reminder cards from various health care providers that are sent to prompt his wife, who now lives with Alzheimer’s in a nursing home, to make appointments.

“The dentist. The eye doctor. Now she’s due for a mammogram,” he tells me. “I dread taking her. She doesn’t always know what’s going on and then she starts crying.”

I’m not sure exactly what to tell him. I ask some questions about his wife. I ask about her general health. I ask if she is aware of her surroundings. I ask if he has anyone to help him make decisions.

I learn that she is in her early 70’s. She’s been living at the nursing home for a few months. She’s becoming increasingly frail. She’s fallen several times, so she now uses a wheelchair if she has to take more than a dozen or so steps. She knows she is at a nursing home, and she seems to know who her husband is—although she doesn’t remember his name and refers to him as “that nice man” to the nursing staff from time to time. They have two grown daughters who live in another state. The man mentioned to the daughters that he might not take their mother to get a mammogram, and they strongly objected, accusing him of “giving up” on her.

“I still love her, and I don’t want anyone to think I’m quitting on her. Til death do us part,” he says.

A few months before, she injured her shoulder and had an MRI. The doctor seemed to think this was a necessary rather than optional procedure, so her husband went along with it. To say the MRI was anxiety-provoking for the woman would be an understatement. She had a meltdown during the MRI. The doctor then seemed angry that the man had not warned him that the test would be problematic.

“The doctor knew she had Alzheimer’s,” he tells me. “Shouldn’t he have realized she wasn’t a great candidate for an MRI?”

I know it’s a rhetorical question, but I answer anyway.

“Yeah, you’d think it might have crossed his mind,” I say. However, I know this scenario isn’t uncommon. Doctors often need to be reminded that patients with dementia might not tolerate tests well, particularly if those tests involve remaining motionless or any type of confinement.

He tells me that his wife has been religious about getting yearly screenings from a dermatologist after having a few cancerous moles removed over a decade ago. He knows it’s time to schedule that appointment, but he’s not sure how well she will do with taking off her clothes for someone she will likely perceive as a stranger.

“I wouldn’t take her to that,” I blurt out.

I immediately regret saying this because whether or not I would take her is not relevant. It’s his call. She’s not my wife. I don’t know the first thing about this situation. I met him five minutes ago and have never met his wife.

“So it’s okay to not take her?” he asks.

Maybe he’s not looking for someone to tell him whether or not he should take her. Perhaps he’s looking for someone to give him permission to make a decision. Maybe I am that someone.

I tell him he can take her or not take her to whatever appointments he chooses based on what he sees as being in her best interest. As we chat more, I understand that he has a fear of being judged. He worries about being judged by his daughters, by their friends, by the nursing home staff, by doctors.

“You came up to talk to me about this,” I point out. “If you were comfortable taking her to all of these appointments, you wouldn’t have come up to talk to me.”

He nods.

“I feel like you just need someone to give you permission to make the call, especially if that call is to tear up those reminder cards and throw them in the trash,” I continue. “You know it’s your call, right?”

He nods again.

He prods me a little bit to see if he can get me to tell him which appointments she should keep.

“So no to the dermatologist. What about the mammogram?” he asks.

I bite my lip. I tell him it’s not my call. I tell him I shouldn’t have told him that I wouldn’t take her to the dermatologist. I remind him that I’m not a medical doctor, and I’m not familiar with their situation.

“But if it were your mom? Or your grandma? Or your sister?” he says. “The mammogram?”

Ugh. He’s persistent.

“Probably no mammogram,” I finally say. I say this mostly because I know from this discussion that he thinks the mammogram is a bad idea. He just needs someone else to say it.

At this point, something happens that has never happened in my public speaking and community outreach experiences. He reaches in his wallet and pulls out a $5 bill. He tries to hand it to me. I’m confused about his intention as he puts it in front of my face.

“Take this,” he says.  “It’s a tip.”

I tell him that I don’t take tips. (I act like this is a long-standing policy when in fact it’s a brand new policy. I’ve never had a policy on tips before this moment because I’ve never been offered one. To be fair, I have often accepted food after speaking–e.g. chocolates, banana bread, cupcakes, other miscellaneous baked goods.)

My purse is on the floor beside me. He unzips it and stuffs in the $5. I protest, but he walks out the door and doesn’t look back.

I could tell you that I did something noble like donated that $5 to the Alzheimer’s Association or used it to buy a needy child a toy, but I didn’t.

I felt so uncomfortable with that $5 in my purse that I had to spend it right away. On the way home, I stopped to buy a Diet Mountain Dew, a string cheese, and a bag of pretzels.

 

 

Mothers’ Day in Dementialand (aka What You Do Every Day Matters More Than What You Do Once in a While)

alzheimers, caregiver, caregiving, dementia, dementialand

Last week I ran into an acquaintance, Cindy, at the rec center where I teach fitness classes. Cindy is recently retired and in her 60’s. In the summer, she’s an avid outdoor cyclist. When it’s cold or rainy, she comes inside the gym to ride a spin bike.

Her mom, Edna, is in the end stage of Alzheimer’s and resides in a local nursing home. Since her retirement, Cindy typically stops in at the nursing home at least once a day. When the weather allows, she rides her bike.

When I see Cindy, I usually ask how Edna is doing. I feel like Cindy is grateful for the question but struggles to answer it. She feels like Edna is getting good care but at this point doesn’t have much of a quality of life.

“Mom had several good years after her diagnosis,” Cindy has said in the past. “But those good years are over.”

Now Edna stays in bed most of the day. Sometimes the staff puts her in a wheelchair, but she slumps over. She doesn’t speak. She hasn’t recognized anyone for a while now. It’s a struggle to get her to eat. She’s incontinent. She has what Cindy refers to as “glaze eyes.” It’s like she’s looking through people rather than at them. Her immune system doesn’t function well (yes, this is a symptom of end stage Alzheimer’s) so she’s constantly battling urinary tract infections and infected pressure sores.

When I saw Cindy last week at the rec center, she blurted out, “I think I’m a bad person. I’m not going to visit Mom on Mothers’ Day.”

Cindy told me that her own daughter and granddaughters live about four hours away. She’d be headed to visit them on Mothers’ Day, and there just wouldn’t be time to visit Edna.

Cindy had mentioned to a few people that she wouldn’t be going to see her mother at the nursing home on Mothers’ Day. They asked if Edna would have other visitors. Nope. She would have no visitors. Cindy felt like these people responded as if she was a horrible monster.

“So I’m leaving my poor mom alone at the nursing home on Mothers’ Day,” she said as her eyes welled up with tears.

It didn’t matter that Edna would not know it was Mothers’ Day or even that she was a mother. It didn’t matter that Edna wouldn’t acknowledge Cindy when she showed up or that Edna wasn’t capable of having a conversation. It didn’t matter than Edna might even be asleep for the entire time her daughter was there.

Not visiting your mother at the nursing home on Mothers’ Day still makes you feel like a loser.

And Cindy…is anything but a loser as a daughter. She invited Edna to move in with her and her own husband after diagnosis. When Edna’s care become too much for them, she researched nursing homes and found the absolute best option for care. It was a rare day when she didn’t stop by at least once, even after her mother stopped recognizing her. She made a special effort to thank the staff when they went out of their way to care for Edna. She even took her mom’s laundry home once a week and did it herself.

As Cindy was telling me about how she made the difficult decision to leave town to see her daughter and granddaughter for Mothers’ Day, my mind wandered to the people I’ve met who do visit their moms with dementia at the nursing home on Mothers’ Day–but rarely on other days. They go on Mothers’ Day because it’s Mothers’ Day and that’s what you do. Yet Mothers’ Day is only one day. Where are they the rest of the time?

I can’t be a jerk to my mom 364 days a year and make up for it by taking her out for an expensive Mothers’ Day brunch and buying her flowers. It doesn’t work that way for any of us, whether our mothers are well or sick.

I’m not saying Mothers’ Day isn’t important. I am saying that what you do most days is more important than what you do one day, even if that day has a special label.

One of my favorite authors is Gretchen Rubin, who wrote The Happiness Project, a book that changed the way I look at habits and happiness. A quote from her book that stuck with me is: What you do every day matters more than what you do once in a while.

It’s a pretty simple concept, but it’s helped me to change my life in subtle but meaningful ways. I have to create a daily life that reflects my goals and values. For instance, I have to be kind to the people I come in contact with each day to be a kind person. I can’t just go on a mission trip to a third world country once a year and call it good. My priorities have to be shown in my actions each day, not just once in a while, or they really aren’t my priorities.

I think about this in terms of marriage. If you’re not nice to your spouse every day, you can’t save your marriage by going on a romantic trip once in a while.

I think about it in terms of health and fitness. It’s better to consistently incorporate more walking into your daily life than go for an occasional run.

Your daily routine matters. Your life is made up of your daily routines. Cindy’s routine tells me that her mother is a priority to her…that she’s a caring person…that she’s doing the best she can.

I fumbled to explain my thinking to Cindy.

Finally, I asked her what advice she would give her daughter if she were in a similar situation on Mothers’ Day.

“Oh, I’d be angry if my daughter chose sitting in a boring nursing home on Mothers’ Day when she could be playing with her beautiful granddaughters,” she said.

As we parted ways, I said awkwardly, “Have a happy Mothers’ Day. You’re not a bad person!” (The term awkward is an understatement in this case.)

I have no doubt that Cindy was at the nursing home Saturday. I have no doubt she will be there today.

I hope she has found peace with not being there yesterday.

 

 

Knowing Better and Doing Better in Dementialand

alzheimer's, caregiver, caregiving, dementia, dementialand, hospice, pwd

I am driving a couple hours to southern Iowa to present at a community center. It’s a drive full of soybean fields, cornfields, and an occasional Casey’s Convenience Store. I’m listening to a Spotify playlist including (embarrassingly) artists such as Flo Rida, Salt-N-Pepa, Tracy Chapman, the Jayhawks, and the Jackson 5. There may or may not be one, and only one, Justin Bieber song.

I’m not sure if there will be fifteen people or a hundred at this deal. I’m not even really sure exactly what I’m going to talk about. I don’t know if most of my audience will have experience with dementia or have shown up because they saw a flyer and didn’t have anything better to do on a Tuesday night.

When I arrive, the woman who invited me to speak gives me a BP gift card and a small loaf of homemade zucchini bread. (I will later eat 3/4 of the bread on the drive home when I realize the Subway in this town closes at 9pm.) About 70 people show up, and they are overly thankful that I’ve made the trip. My audience is seated in folding chairs. I am at a podium on a stage. One woman tells me that her granddaughter was in a dance recital on the very same stage over the weekend. I tell her that’s a hard act to follow.

I give what I call my “Dementia 101” info. Then I do a little role play and demonstration to show how to approach and communicate with people who are in the later stages of dementia. My crowd is fantastic. They laugh at all the appropriate times. No one’s cell phone rings. Sometimes when I do public speaking I feel like I’m on my game (I could also write multiple blog posts about when I’m not on my game), and tonight I’m on my game.

An older woman sitting in the back row asks a lot of questions during my presentation. They’re good questions. They are questions that only someone caring with a loved one who has dementia asks.

How do you know when it’s time to take someone to a nursing home?

What do you do when someone with dementia tries to take their clothes off in public? (When she asks this question, a few people in the front row turn around to look at her.)

Should you take someone off their dementia medication, like Namenda, when they are in the end stages?

What’s the best way to handle it when they don’t know who you are anymore?

How do you feel about feeding tubes when people stop eating at the end of life? (The first words out of my mouth are “Not good.”)

I do my best to address her questions. To be honest, I think I do a pretty good job providing her with some options and ideas that might be effective.

After I get done with my presentation, several people come up front and form a line to chat with me. For experience, I know that listening to these people’s stories will take almost as long as my presentation itself. This is the reason by husband knows to expect me home at 11 when I say I’ll be home by 10.

The woman from the back row is in line. When she gets her chance to talk to me, she has a few more questions. Again, they are good questions. She wants to know what a person should tell their grandchildren about why grandpa doesn’t know who they are. She asks why people with dementia may not be able to sit up straight, why they slump in their wheelchairs, and what you can do to get them to sit up when they won’t. Then she wants to know if people in end stage dementia should just be left alone when they lie with their eyes closed and refuse to open them–or if it’s okay to shake them just a little to get them to open their eyes.

I do my best, but I admit I don’t have all the answers. Maybe I really don’t have any answers, just some thoughts and ideas based on my experiences. She thanks me for making the drive and tells me to watch out for deer on the way home. And then she says something that makes my heart leap to my throat.

“My husband died from Alzheimer’s a few months ago,” she confides. “Now I know all the mistakes I’ve made. I had no idea about all this stuff.”

She says this in a way that is matter-of-fact and not bitter. However, it stings me. I thought I was giving her helpful advice, whereas I was actually unintentionally pointing out her mistakes. She manages a smile and walks away.

I turn my attention to the next person in the line, but something nags at me. A part of me wants to catch the woman as she walks out of the community center. I have no idea what to say when I catch her, and I’m not sure if she’d want to be caught. I let her go.

On the way home, I think about the woman. She’s weighing so heavily on my mind that I don’t think to start my Spotify playlist until half an hour into the drive. My favorite Maya Angelou quote keeps coming to mind:

Do the best you can until you know better. Then when you know better, do better.

It’s something I tell myself a lot when I think about my own professional and personal life. When things go wrong, it’s often because I didn’t have the experience or knowledge to do better. (Of course, there are those times I mess up even though I do know better.) I also use this quote a lot with my college students. You didn’t know better. Now you know better. Don’t screw it up again. 

The reason the quote keeps coming to mind is that, in this particular case, it doesn’t work. The woman doesn’t have another chance. She did the best she could with the knowledge she had. She probably wouldn’t admit it, but she probably did okay. Yet now she has more information….because for better or worse I gave her more information. Now she knows better, but she can’t do better. It’s too late.

If I had known her husband was dead, I might have answered her questions differently. I’m not sure exactly how…but I might have at least changed my delivery even if I didn’t change my content. I wish I had known. There’s no real way I should’ve known, of course, but I wish I had.

I have to wonder if she made the right call by coming to listen to me speak. I’ll probably never know.

Maybe it’s better to think you did your best and not realize there’s more you could have done.

 

 

 

 

 

The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)

alzheimer's, caregiver, caregiving, death, dementia, dementialand, dying

When I first started writing this blog about 16 months ago, the only feedback I received was positive. Overwhelmingly and sometimes ridiculously positive. I repeatedly heard that it was smart, insightful, funny, and poignant. At that point, my readership included only my mother, my husband, and about four friends. None of them had a negative word to say unless it was to point out a typo.

My readership has expanded. I have “subscribers.” Sometimes I see that my blog gets shared on Facebook by people I don’t know. Of course, most people who write a blog hope that more than six people read it, so this is a good thing. However, it’s forced me to realize that not everyone always finds my blog smart, insightful, funny, and poignant.

At first, I wasn’t okay with this. People’s criticisms (especially when they are mean rather than constructive) cut me hard. I lost sleep. I was in a foul mood. I spent hours crafting email rebuttals to the emails I received. If you’re wondering what types of critical emails I received, here’s a brief summary (paraphrased) of some readers’ thoughts….

You don’t know anything about dementia unless you care for someone with dementia 24/7. You can’t learn about Alzheimer’s by getting a PhD. You probably have never even provided care for someone with dementia. You act like everyone with dementia is the same when they’re not. You don’t know the difference between the terms Alzheimer’s and dementia (this person was kind enough to send me a Wikipedia link to clarify–ummm–thanks?). You need to write from a Christian perspective. There are diets that cure Alzheimer’s, and you should be writing about that.

I once had a guy email me and insist that the Alzheimer’s Association already had a cure for Alzheimer’s but didn’t want to reveal this because they’d all lose their jobs. He seemed to think I was in on this conspiracy. I was a bit flattered that he’d think I, of all people, would be in on this conspiracy.

There’s a reason I only look in my spam folder about once an month, and it’s not those Nigerian princes whose whole families have died in tragic bus accidents.

Comments like this used to sting, even if they were off-the-wall and ridiculous. I’ve gotten in a few passive-aggressive email and Facebook arguments in an effort to defend myself. In fact, it’s hard for me to revisit these criticisms here without writing a rebuttal to each, but I’m not going to give in to that urge. That’s not what this post is about. (And I must admit writing this blog has really helped me develop thicker skin. Furthermore, I’ve realized that people’s comments are more a reflection of where they are in their journeys with dementia than my work, and I’m not saying that some people have not had valid points.)

This post is actually about the two most common criticisms I get about my blog. And that’s where I will squeeze in that rebuttal.

One of these criticisms, which commonly comes from caregivers, is that I portray dementia in too positive of a light…that I look at this through rose-colored glasses…that I find positivity and humor where there is none. The other criticism, ironically, is that I portray dementia too negatively…that I focus too much on the end and not enough on the years that people with dementia can live purposeful and fulfilling lives.

My hope is that someone who reads my blog regularly (although I don’t expect anyone except my mother and husband has read all 101 posts) would not make either of these claims, but I can understand these criticisms coming from someone who has read a few posts here and there. Sometimes I am more negative, and sometimes I am more positive. That’s a reflection of my recent experiences with dementia and likely a reflection of my mood and other events in my life as well. I have my own ups and downs. Sorry not sorry.

When I started this blog, I didn’t have a master plan. You give me too much credit if you think I set out to portray dementia negatively or positively. There was certainly never an agenda. I set out to share my own insights and experiences. I just desperately hoped I could find something to write about each week and not make a fool of myself. In time, that hope turned into fear that at some point I would not be able to find a way to work “Dementialand” into each and every blog post title. I had a dream one night that I wrote an absolutely brilliant post but never published it because there was no way to incorporate “Dementialand” in the title. I woke up in a cold sweat.

This blog is where I’m at on a particular day. And, although I had no intention of portraying dementia positively or negatively, I’m somewhat glad that I can fall on both ends of the spectrum. In a way, I’m proud that I get criticized for being both overly positive and overly negative.

There’s a risk in shedding a positive light on dementia. The general public doesn’t understand what Alzheimer’s and related dementias do to people. People still think this is just about forgetfulness–telling the same annoying stories repeatedly–having to be reminded to brush your teeth–calling your grandkids by the wrong names. As a society, we need to understand it’s much more. We need to understand that dementia kills people…and not just old people. The risk in minimizing the seriousness of diseases that cause dementia is that this hurts the efforts of those who fundraise to increase support and research.

However, there are people out there diagnosed with Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia, and vascular dementia living quite well. There is something between diagnosis and death. It’s called life. Someone with early-onset Alzheimer’s recently told me that she’s dying from Alzheimer’s and living with Alzheimer’s all at once, but she’s thinking about the living part. She estimates she has one or two “good” years left. She refuses to waste them. As I write this, she’s in Hawaii with her family. She knows it’s probably one of her last vacations, but she’s there now.

Dementia is about death and dying. Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia…all terminal diseases. Dementia kills people, and I can’t apologize for being blunt on that. I give several community presentations on dementia each month, and people are still not getting this. They act offended when I mention that dementia is fatal.

And yet many of my friends with dementia have good lives. They smile. They laugh. They love. They spend time doing things that are meaningful to them. Some people with dementia are happier than some people without dementia. Some people with dementia are happier than…me. I can use the terms hope and dementia in the same sentence.

None of that changes the reality of the struggles and challenges of dementia. None of that changes the need for more funding and research. None of that changes the fact that no one should have to forget their loved ones. And none of that changes the devastation of these diseases.

So before you send me an email about how my blog is too positive or too negative…a couple things. First of all, make sure you’ve read more than one post. And second, know that I’m not trying to convince you of anything. I’m not trying to tell you that dementia is no big deal. I’m not trying to tell you that dementia steals every joy in life upon diagnosis. Neither is true.

Life ain’t a fairytale–whether or not you have dementia. Stuff goes all wrong, but you have to find a way to survive and (when you are able) thrive. It’s not that life is good and then bad and then good again. Life can be good and bad..and funny and sad and poignant and a million other things…all at once.

Coloring Contests in Dementialand (aka Simple Things in a Complicated Situation)

alzheimer's, caregiver, caregiving, childhood, dementia, dementialand

They are having a coloring contest, I am told.

“They’ll sit there pretty much all afternoon,” Kathy says, as I watch her mother and her daughter sit in the dining room at the nursing home with a tub of crayons and a stack of coloring books.

There is something about it that fascinates me. A grandmother and a granddaughter, separated by about 60 years, but somehow in the same place in this moment.

“It used to break my heart,” Kathy tells me. “But now it makes me smile.”

Kathy explains to me that her mom was a successful career woman. She has a master’s degree and was the superintendent of a small school district. In her spare time, she was an avid reader and loved photography.

“She was a real intellectual-type person, but now she’s…this,” Kathy says, gesturing toward the coloring contest. When Kathy says “this,” she’s not saying it in a condescending or negative way. She’s just in awe of the way her mother has changed over the past several years. “This” is different, but maybe not all bad.

Kathy tells me that she always pictured her mom babysitting her daughter. She thought her mom would teach her daughter to love classic literature and encourage her to go to an Ivy League university. She never pictured them coloring together (and sometimes arguing about who gets to use the blue crayon) like peers.  It’s not what Kathy pictured, but it’s what she’s got, and she’s learned to appreciate it in a way that I find admirable.

“My mom never would’ve taken the time to color with my daughter for hours before she had dementia. She’d be too busy doing other things,” Kathy says.

The scene that Kathy never saw coming and used to break her heart is one she knows she will long for in the future. She knows that soon her mom won’t be able to color. She won’t know what to do with a crayon. She won’t understand what a coloring book is. That day is coming. Kathy knows it. And her daughter will lose interest in coloring. Someday soon she’ll see it as childish and move on to other things. Kathy knows she’ll think about the coloring contests and wish she could go back in time to watch them contently coloring together again.

It’s like they’re crossing, she tells me. Her mom is going backward. Her daughter is going forward. But right now…right now they seem to be in the same place. I can’t help but think it’s beautiful and sad all at once. Kathy has found a way to focus on the beautiful. She knows there’s some sad in the future, but right now there’s a coloring contest.

Every once in a while, Kathy’s daughter walks up with a page torn out of a coloring book to show Kathy. She sometimes asks who is winning the coloring contest. When she asks, Kathy’s mom stops coloring and holds up her project for Kathy to review.

“It’s a tie, ” Kathy says. I asked if it’s always a tie. Kathy tells me that it usually is…because once she pronounced her daughter the winner and her mother started to cry.

Life with dementia can be pretty complicated. As we watch the coloring contest, Kathy tells me about the challenges of getting her mom the care she needs, the financial struggles of their family, and how she’s not getting along with her siblings. She starts to talk about the problems she’s having with her husband because she spends most of her free time at the nursing home, but then waves her hand and shakes her head. Her voice trails off for a moment.

“This dementia thing really sucks, but I brought in a new box of 48 Crayolas this morning, and it made both of them so happy,” she says.

Kathy knows that crayons won’t always make her mother and daughter smile…but today they will. And that’s enough.

And you know what you do when the loser of the coloring contest cries? You always say it’s a tie.

Sometimes dementia makes life really complicated, but sometimes things are pretty simple.

 

 

 

Happy Holidays from Dementialand (And What Clark Griswold Reminded Me About the Holiday Season)

alzheimer's, caregiving, dementia

Welcome to Dementialand is on hiatus until 2016.

In the meantime, I wish you tremendous holiday season. I’m not going to battle about language here. I accept well-wishes in any form. I’m not Jewish, but I’d rather you tell me Happy Hanukah with a warm smile than give me a sharp elbow or a middle finger during holiday shopping in the toy aisle. (On a related note, I really want to try matzo.)

Don’t forget to do something you enjoy over the next few weeks. Don’t forget to be nice to other people. Don’t forget to buy a couple of generic gifts for the awkward moment when someone presents you with a present…and you didn’t think to buy them anything.

And don’t forget that the holidays are not a competition. It is okay if your sugar cookies look like they were decorated by fourth graders. Own it. And, if you can’t cook, remember that someone has to volunteer to bring the red Solo cups to holiday gatherings. Show up with some adorable paper plates. Make it your thing. And if you don’t do that Elf on a Shelf deal, bless you. I still don’t understand it.

If you visit a nursing home this holiday season, take a few minutes to say hi to residents who might not have visitors. If it’s a tough visit, cry on the way home, not at the nursing home. If you have a loved one who is nearing the end of their life, don’t worry about making this the best holiday season ever. It probably won’t be, but try to smile and laugh as much as possible anyway. Don’t feel obligated to make it Lifetime movie sentimental. Just do the best you can. Trust me that it’s enough.

And if you’ve ever made a positive comment about my blog, if you’ve subscribed, if you’ve ever liked it on Facebook or shared it, or even if I’ve written something that you relate to and you’ve nodded knowingly, THANK YOU. From the bottom of my heart, THANK YOU. Writing this blog has been a journey for me, and I’m grateful for everyone who has been a part of that journey. You mean the world to me.

To those of you who have made negative comments or sent me critical emails, I’m gonna be the bigger person here and thank you as well. A part of this journey for me has been developing thicker skin. I’m getting there. Now I only spend one day obsessing about your critical (and sometimes mean) comments. If I think they are gonna keep me up at night, I take a Bendryl before I hit the hay. I used to focus on them for about a week. We are all works in progress, right?

Oh, and one more thing…When you catch your cat on the counter licking the turkey or your relatives arguing about Starbucks red cups/Donald Trump/gun control/gay marriage, remember that holiday horrors often make the best memories. I would not have watched National Lampoon’s Christmas Vacation twice in the last week if everything had gone right for poor Clark Griswold. I bet Clark and Cousin Eddie still laugh about that cat electrocuting itself by chewing on those Christmas lights.

See you in 2016.

The Cubs Always Win in Dementialand

alzheimer's, caregiver, caregiving,

What I’m about to say is even more shocking if you consider I am a St. Louis Native and forever obligated to root for the Cardinals. In fact, one of my vivid memories about the day my Grandma passed away was that we had the Cardinals game on in her hospital room. We knew she was leaving us, but my family didn’t want to miss the game. (And I guarantee you that my Grandma would have thought it was weird if we had turned the game off just because she was in the final stages of her life.)

Here goes…

I must tell you that I am happy that the Chicago Cubs are in the playoffs. Do not tell my family this. I may not be welcome at family Christmas anymore. At the very least, someone might spit in my green bean casserole. I do hope the Cardinals beat them in the National League Division Series, of course, but I’m glad the Cubs made it this far.

I have a thing about rooting for the underdog. It’s most prominent during college basketball’s March Madness when I sit in front of three TVs at once in our living room (thanks to my husband for the NCAA Tournament TV arrangement) hoping to see a 16-seed beat a 1-seed, but I do it with other sports as well. From that perspective, it’s not all bad to see the Cubs in the play-offs.

There’s something else as well, though. There’s another reason I smile because the Cubs have the 3rd best reason in baseball in 2015. It’s because of a guy I know whose name is Paul.

Paul has always been a Cubs fan, and he’s been through losing season after losing season, never allowing his loyalty to waver. Something odd happened a few years that made Paul’s family realize that perhaps Paul was having some difficulties.

They’d walk into the family room and see Paul watching a Cubs game on TV, just like he had done for most of his life. They would ask who was winning.

“Cubs,” he would respond. However, they’d glance at the TV and realize that the Cubs weren’t winning. It was the first dementia symptom that they noticed. They told friends that they were concerned about Paul–because he thought the Cubs were winning when they weren’t. Friends shrugged them off. Paul probably just wasn’t paying attention. Or maybe it was something with his eyesight. His wife, however, knew there was a problem. She was frustrated when their family doctor wouldn’t listen.

About six months later, she became more concerned. She would walk into the family room when Paul was watching a game and ask who was winning. He’d tell her the Cubs were winning, but she’d glance at the TV and realize that not only were the Cubs not winning, they weren’t even playing. Maybe it was the Cardinals and the Pirates. Or the Phillies and the Mets. But not the Cubs. At this point, Paul was showing other symptoms. He had gotten lost driving in their small town. He seemed more irritable and got his feelings hurt more easily. Furthermore, he no longer wanted to spend time with friends. He preferred to sit home alone and isolated himself.

After he was diagnosed with Alzheimer’s, he continued to spend a lot of time in front of the TV watching sports. When his family asked who was winning, he would tell them that the Cubs were…except now it wasn’t always baseball. Maybe it was hockey, basketball, or football. He once insisted that the Cubs were winning a 4×100 relay.

His wife told me that this used to break her heart. Paul had been a loyal and knowledgeable sports fan. Now he couldn’t even tell if the Cubs were winning, or playing, or even if he was watching baseball. Over time, she developed a new perspective. She stopped correcting him. In fact, she would smile and act pleased when the Cubs were winning. Sometimes she went as far as to cheer for them, even when they weren’t playing.

She told me, “The Cubs don’t win a lot in the real world. He deserves this.”

I guess the Cubs always win in Dementialand. And last night Dementialand wasn’t all that different from the world most of us live in. The Cubs beat the Cardinals, 8 to 6.

Looking for a Sign in Dementialand (Or When You Just Gotta Make the Call)

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After one of my friends excitedly told me she was pregnant, she launched into a long monologue about whether or not it was the right time to have a baby. She explained that she and her husband had been talking for years about when the right time to have a child might be. First, she was in a grad school. Then, he got a promotion and had to do a lot of traveling for work. Just when they thought the timing might be right, her mom was diagnosed with cancer.

She told me, “We came to the conclusion that maybe there is no exact right time to do it. Maybe you just have to make a decision.”

Those words stuck with me. When I think about my life, there have not been definitive signs telling me when it’s time to make a life decision or major change. If I would’ve waited for those signs, I’d still be sitting there–in the same life stage I was in many years ago. At some point, you just have to make a decision and move forward.

I remember having to make a series of career decisions in the couple of years after finishing graduate school. I went on a job interview at the university where I currently work as a faculty member. I wanted a sign that I should take the job if I was offered it.

I’m not sure what I would’ve considered a sign. Perhaps a carrier pigeon that would drop me a note telling me I should work at the university. Maybe a fortune cookie at dinner that said, “Take the freaking job, Elaine.” I would’ve settled for a well-done piece of toast with burn marks in the shape of the Northern Iowa mascot (which is an adorable Panther named TC who I’ve become quite close with over the past nine years, by the way). I got nothing. No signs. No signals. In the end, I just had to make a decision.

Maybe it’s getting engaged. Maybe it’s having a baby. Perhaps it’s going back to school or changing jobs. It could be something less monumental but potentially life-changing, like starting a fitness program or registering for your first 5k. You can always find a reason to not do it. There’s always something that makes the timing not exactly right. Sometimes you need to do it anyway. God, the Universe, or whatever power you believe in will not present you with the perfect time and circumstances to do anything. If we wait for perfect, we’ll always stand still.

In the past week, I’ve been asked the same question three times. The question is: How do you know when it’s time for your loved one to move to a nursing home?

A typical response to this question is, “You’ll know when the time is right.” I’m not sure why everyone says this, except that perhaps it’s comforting to think that God or the universe will put a billboard in your life to signal that you should consider a nursing home for someone you care about. As comforting as this might be, it doesn’t always happen.

A woman approached me at an event last week and asked if there was any “test” a doctor or psychologist could give her mom that would give her a definitive answer as to whether or not she should live in a nursing home. After talking to this woman a bit, I realized that she knew the best choice for her mom at this point was probably a nursing home. She had information that could never be assessed by a test, and she had more knowledge of her mom than any doctor or psychologist could ever have. And, yet, she wanted a checked box that signaled that it was time for mom to move to a nursing home.

I can’t check a box that indicates it’s time for nursing home care. First of all, I don’t know your mom, your dad, your grandparents, your sibling, or your partner. You are the person who has the information to make this decision. You may like the idea of a “professional” giving you a definitive answer, but it doesn’t work that way. I get really annoyed with people who answer questions with questions, but if you ask me if your loved one should live in a nursing home, I’m likely to ask what you think. Then I generally just repeat this back to you. Sometimes I rephrase it, and sometimes I don’t even go to the trouble. Later on you thank me for my brilliant advice when I never gave you any advice. You had the answer all along.

Second, decisions about nursing homes are about more than the person who needs care. People with dementia do not exist in isolation. You must consider the health, social support, and knowledge of family members and friends who provide care at home. We hate to make decisions based on finances, but money impacts the choice to consider nursing home care. You even have to consider issues like the layout of one’s home (e.g., Is it accessible?). I can ask you a series of questions about your loved one’s health in order to assess whether or not a nursing home might be the right choice, but that’s not the whole picture. Life ain’t that simple. Sorry, folks.

When I worked with individuals in hospice care, I had a few conversations about the choices they had to make throughout their illnesses in regards to stopping life-saving treatment (particularly chemo). One woman told me that she was looking for a sign that it was time to give up on chemo. If she had some sign, she could tell her family that the time had come to stop. However, that sign never came. She had to make a decision, and it was more difficult to tell her family because it was her choice. There was no real signal that the timing was right to forget chemo and call hospice. She just had to make a decision. It was her life, her choice.

It’s a little different with dementia. Obviously, as dementia progresses it becomes more unlikely that people can make their own choices about care. Family members and friends step in. Sometimes people with dementia and their loved ones are proactive enough to have discussions years before these difficult choices must be made. Often they are not.

We often anticipate that these decisions will be made based solely on the health of the person with dementia, but they are not. I know a man who cared for his wife with Alzheimer’s in their home until he fell and broke his hip while cleaning out the gutters. It was at this point that she moved to a nursing home. He felt guilty that this decision was made based on him and not her, but that’s how things often work. Another woman who had Alzheimer’s received in-home care for several hours a day for a few years. When her money ran out, she went on state aid and moved to a nursing home. Her family felt awful that they didn’t have enough money to pitch in and keep her at home. Love doesn’t pay the bills. (If it did, the world would be a different place.)

Quite often, a person with dementia lands in a nursing home as a result of a crisis. Maybe they fall and injure themselves. Perhaps they end up wandering around town, confused and scared, and their family realizes they can’t provide supervision at home anymore. Unfortunately, nursing home admissions in crisis are not ideal. They are stressful for the person with dementia, as well as for the family. Also, when we must admit someone to a nursing home on very short notice, we seldom get that person into our first choice of nursing home. I encourage families to make a decision before a crisis happens.

There is no pre-determined right time to get married, have a baby, go back to school, or change jobs. You don’t have a prescribed timeline for your life. There is not an exact right time to choose a nursing home for a loved one. Sometimes there’s just a difficult decision.

A carrier pigeon isn’t going to drop you a note, and sometimes fortune cookies just aren’t that helpful. And, as a professional in the field, I’ll certainly chat with you about it, but I can’t make the decisions for you. In the end, you just have to make the call.

And not look back.

Critical Nitwits in Dementialand

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I was speaking at a support group when an older woman told me that her husband, who had Alzheimer’s, needed 24/7 care. She said she was able to be home most of the time, but she was continuing to work about ten hours a week at a liquor store. She explained that her job paid little more than minimum wage. She paid more for her husband’s care than she made at the liquor store. A lot more.

Then she listed off the reasons that she kept the job. First, she enjoyed it. She liked the social aspect of talking to people about booze. Second, she wasn’t sure if she could get the job back if she quit, and she didn’t know what the future held. Third, she needed to get out of the house sometimes or she would lose her mind. Fourth…I stopped her before the got to the fourth reason. I don’t know how many reasons were on the list.

“You can stop justifying this to me,” I told her.

“So you understand?” she asked.

I did understand, but that didn’t really matter. What did matter was that she understood. She understood her reasons for continuing to work, and they made sense to her. That’s what mattered. She may have been looking for some support for her decision to keep working, and I get that. However, the way she justified her decision to me indicated that she felt the need to justify it to others in her life as well. It bothered me that she felt the need to defend her choice to continue working.

Caregivers have to make a lot of rough decisions. Sometimes those decisions are supported by others. Sometimes they are not.

I don’t understand how you can put Dad in a nursing home.

I don’t get why you are touring assisted livings. Grandma is fine at home.

It doesn’t make sense that you took her off that drug.

Mom is a safe driver. You broke her heart when you took her keys away.

Most people with dementia have one or two primary care partners. I often work with these primary care partners, who feel that their decisions are criticized by those a bit more removed from the situation. And these care partners spend a lot of time explaining and justifying their decisions.

I used to try to help these care partners come up with ways to effectively communicate their reasoning. To some extent, I still do this. However, I’ve shifted my focus to helping care partners cope with those in their life who might be judgmental of their decision-making.

If you are a care partner who is questioned about your decisions, explain concisely why you did what you chose to do. And then…stop explaining it. Just stop. If they don’t get it after one explanation, they won’t get it after 27 explanations. Just move on with the knowledge that you are doing the best that you can. And that’s all you can do.

We make the best decisions we can with the knowledge we have at the time. Sometimes we make bad decisions in caregiving, as we are prone to doing in other areas of life as well. Maybe your family and friends are eager to point out when you’ve made a bad decision. Some people are like that. You can’t change them.

Often it’s a relative who shows up in town for a weekend and has “all the answers.” (Yeah, that’s sarcasm. In fact, I speak fluent sarcasm.) Sometimes it’s a friend whose well-intentioned advice isn’t that helpful. I see caregivers who spend a lot of time and energy explaining their decisions to these people, and caregivers don’t have excess time and energy. So you know what? Stop explaining yourself. Stop justifying your decisions. Just stop.

There are two types of people. The first type of person understands you and supports you. There is no reason you need to explain or defend yourself to them. They understand that maybe your decision is different than the one they would have made, but they are a different person than you are. They understand that you have to do what works in your situation. They get it. If you are lucky, you have many people like this in your life. If you don’t, you need to find more…immediately.

Then there’s the second type of person. Perhaps you have a few of these people in your life. (Well, if you are lucky, it’s only a few.) They look for fault in the people around them. They forget that different things work for different people. They expect that everyone is like them and should make the same decisions they would make in similar circumstances. They listen with the goal of finding fault in what they hear rather than finding understanding or common ground. If you have many people like this in your life, you may need to reassess your social circle…immediately.

There’s no reason to justify your decisions to the first type of person, and it’s futile to explain them to the second type of person. Save your breath.

We can’t always eliminate the second type of person from our lives–although when it’s reasonable, it’s worth considering. What we can do is stop trying to win their approval…because we never will. You set yourself up for failure when your confidence about your caregiving decisions is dependent on critical nitwits. You have to find a way to care less about they think. You’ve got to tune them out.

The best way to do this is to fill your life with as many supportive people as possible. You need to find people whose supportive voices drown out the unsupportive voices. Maybe you find these people at a support group. Maybe you find them online. Maybe they’re at your church. But you find them.

If my husband had Alzheimer’s and needed 24/7 care, would I work ten hours a week at a liquor store even if the job actually cost me more money than it paid?

Maybe. I’m honestly not sure. But it doesn’t matter.

It doesn’t matter because the woman at the support group is not me. We are different people. What works for one caregiver may not work for someone else.

She didn’t have to explain to me why she kept her job. It doesn’t matter if I get it. It matters that she gets it.