Category Archives: alzheimer’s

Happy Holidays from Dementialand (aka I Wish You Survival With Some Moments of Joy Thrown In)

alzheimer's, alzheimers, caregiver, caregiving, dementia

I wasn’t going to write a post this week. I’m on holiday break from the university, and I thought I’d take a holiday break from writing as well.

Yet I’m awake late into this Sunday night and rather than watch more reality TV or spend more money on Amazon.com, here I am with my laptop sitting in bed.

And I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.

I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.

The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.

Recently I’ve heard the following statements from family members of those with dementia:

“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”

“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”

“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”

“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”

“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”

“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”

If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.

It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.

I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.

The people who cheerfully work at the nursing home on Christmas day.

The neighbor who understands you are overwhelmed and shovels your driveway.

The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.

The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)

The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.

If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.

And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.

They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)

I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.

This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horrible wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgement here, folks.

Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.

Living in the Moment and Planning Ahead in Dementialand

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

I spoke to a group of professional and family caregivers last week. After talking for an hour and a half, I was gathering my belongings (including some delightful chocolate turtles and a classy purple umbrella that the Alzheimer’s Association gave me for speaking) when a professional-looking woman walked up to chat.

Her mother has Alzheimer’s. Although they’ve discussed a memory care community, she lives at home with her husband, and she has a lot of good days. Once in a while she can’t find the bathroom. She’s no longer able to drive. And they gave their beloved dog to a family member because they were worried she was going to let it outside and forget about it. However, life is okay right now.

She goes to church every week, and she has a great group of friends who pick her up for lunch regularly. She still cooks every evening even if her husband has to help a bit more than in the past. She even volunteers at a local nursing home to help the “old people” play bingo.

But they’re scared. They understand Alzheimer’s is a fatal disease. They’ve watched the Glen Campbell documentary. They’ve scoured the Alzheimer’s Association website. They want to know everything they can to be as prepared as possible for the journey ahead. In many ways, they are the type of family that I appreciate working with–they actively seek out information to assist their loved one now and in the future.

Yet, there’s a point at which people can become too fixated on the diagnosis. There’s a point where education and preparation morph into worry and anxiety.

“All I think about all day is my mom,” the woman tells me. “I think about what her future holds and when she’ll be in a wheelchair. When I close my eyes, I picture her in a smelly nursing home being taken care of by people who don’t even know her.”

She asks me about a timeline. She was diagnosed a year ago, and the doctors says she’s in stage 4. How long will it be until she can’t live at home anymore? How much longer will she be able to walk? And talk? When will she be incontinent? And when will she die?

“We just need some estimates so we can plan, you know, financially,” the woman tells me. I’m a planner by nature, so I understand.

Although I understand, I’m not much help.

You may have read about the seven clinical stages of Alzheimer’s. If you haven’t, you can learn more here:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

There are times I find the seven stage conceptualization useful. When professionals communicate with other professionals, it’s valuable to be able to indicate a person is in stage 3 or stage 6 to quickly relay information. (I will add that I hate when people are referred to by their stage, as in “She’s a stage 6;” she may be in stage 6, but she’s not a stage 6. There’s a difference to me.)

I’ve found that sometimes my attempts to discuss the progression through stages with families have not been successful. When I say someone is in stage 4, they want to know how long stage 4 lasts. They are unsatisfied when I say something vague like, “It varies.” They want to know why their loved on is classified in stage 3 when their verbal skills appear like the verbal skills of someone in stage 6. I say something like, “Various areas of the brain decline at differing paces.”

I typically end up saying that these stages aren’t an exact science…and they’re not. It’s not like a person goes to bed in stage 5 and wakes up having transitioned into stage 6.

I have started to use the terms early stage (mild), middle stage (moderate), and end stage (severe) rather than the seven stage model when I talk to families. Still–families want to know the length of each stage. I don’t know how long early stage will last for each person, nor do I know how long middle stage and end stage will last. My hope is that most of the duration of the disease is spent in the early stage. When I share that thought with families, they usually agree.

I give families a really hard task when I visit with them. I tell them to be prepared, as much as possible, for the realities of the disease. Obviously, you have to look ahead to be prepared. In the next sentence, I tell them to focus on the moment–because that’s how you find joy when you live with dementia.

And, if you think about it, it’s how we find joy in life more generally. We lose the joy in the moment if we think too much about what could happen in the future. Yet, if we fail to plan we plan to fail (or so my high school economics teacher told me).

Plan ahead and live in the moment.

How do you even do that?

I struggle to do it in so many areas of my own life. Sometimes I can’t even enjoy a Sunday evening at home because I’m too focused on the tasks I have to accomplish in the week ahead. And, if I’m being honest, I have anxiety that boils down (like most anxiety) to not being able to focus on life in the moment. Like many of us, I can’t shut down a fixation on potential future events that may or may not ever actually occur.

A few years ago I read a book called Always Looking Up: The Adventures of an Incurable Optimistic by Michael J. Fox, who is an admirably optimistic person, as you might guess by the title of his book. He points out that we often worry about the worst case scenario, and the worst case scenario rarely happens. He also mentions that, even if the worst case scenario does occur, worrying forces you to live that experience over and over when you really only need to live it once.

This part of the book had such an impact on me that I remember exactly where I was when I read it. I was sitting in the Minneapolis airport right next to a fast food Chinese place called “Wok & Roll.” Now whenever I pass that same “Wok & Roll” during layovers in Minneapolis I think of Alex P. Keaton and Marty McFly. Never in my life has a book had such a strong association with a place.

Michael J. Fox is right, of course. Worry is a waste of time. Although it may be that simple, it’s not that easy. Worry cannot be that easily turned off by those of who are prone to it. Logically reasoning yourself to shut down your anxiety isn’t necessarily effective. In fact, it may increase worry because then you worry that you’re worrying too much. Meta-worry.

As you can probably sense, minimizing worry because worry isn’t productive is something that’s challenging for me. And I know I’m not alone in this.

How am I supposed to give people tips on how to plan ahead and live in the moment in the face of a dementia diagnosis?  I can think of few things I’m less qualified to do.

The woman I spoke with last week was trying to planning ahead. I couldn’t fault her approach. She had toured memory care communities. She had taken her parents to speak with a financial planner. She’d put a package of Depends in her parents’ laundry room…for when the times comes. She was trying her best to, as she put it, “brace for a storm.”

I want her to be able to find joy where her mom is at today. I try to figuratively pat her on the back for her efforts to prepare for the future. Then I tell her that there are no estimates for when her mom will reach certain milestones. She pushes me again to guess how many years her mom has left. I’m tempted to throw a range of numbers out, but I resist. Alzheimer’s is fatal, but each individual has their own trajectory.

She gives it one more shot.

“My daughter is three,” she tells me. “I want to know if Mom will be around when she graduates high school.”

“I’d be pretty surprised if she were,” I say. I don’t know if this is the right thing to say. I’m sure I could have been more eloquent. In that moment, she seems grateful to me.

She thanks me for chatting, compliments my sweater, and wishes me a safe drive home.

 

 

 

 

 

 

 

 

 

 

What You See in Dementialand

alzheimer's, alzheimers, caregiver, dementia,

This is the fifth of a series of five posts about the senses in Dementialand.

Today we focus on sight.

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when a woman with Alzheimer’s suddenly became very upset.

“Who is watching the children?” she kept asking me. “They are going to get hurt.”

I wasn’t sure what children she was referring to, but I tried to assure her that they were safe. She wasn’t having it.

“They are going to hit each other with that stick and no one will know,” she said. She was becoming agitated, so a staff member removed her from the activity. As she was walking down the hallway, she kept looking back at me and shouting about how I needed to care more about children.

As I wrapped up the activity about fifteen minutes later, I packed up my equipment and turned around to leave. I realized that there was a picture on the wall behind me. The picture was a large framed image of several small children playing baseball. One of the children was holding a bat.

At that point, I realized that this woman’s concern was valid based on how she was viewing the world. It was likely that she saw the picture behind me and thought it was a window. She thought there were children outside of that window playing baseball with no supervision. She saw the child holding a bat (or a “stick”) and was concerned that they were going to get hurt.

Instead of listening to her concern about the children, we had dismissed her and removed her from the situation. No wonder she was frustrated.

Sometimes people with dementia confuse pictures, especially larger ones, for real-life scenes or windows. I also find that they may misinterpret coat racks for people. I was recently asked if the man in the corner would be joining us for lunch. I looked to the corner to see a coat rack with a single coat hanging on it and a hat sitting on top. I told my friend with dementia that I thought that man had already eaten lunch.

Changes in the visual-perceptual system can impact eating. A person with dementia may not see mashed potatoes on a white plate. I know a woman with dementia who refused to eat a piece of lasagna (her favorite food) because she swore there were fleas on top of it. They were actually tiny oregano flakes, but her family could not convince her. She only ate it when they took away that piece and returned with a piece of lasagna with the oregano scraped off.

At a caregiving seminar recently, a woman told me about her husband who ended up in the hospital with dehydration. He had complained about thirst, but when she brought him water he didn’t drink it. She realized later that he couldn’t recognize that there was water in the glass, so he thought it was empty. Her solution to the problem? She added a very small amount of Crystal Light to the water so he could see the fluid in the glass.

Depth perception often becomes an issue with dementia. Again, it’s not that there’s necessarily a problem with the eyes. It’s that the brain struggles to make sense of what the eyes see. Compromised depth perception is often problematic when it comes to flooring. Rugs may look like holes in the floor. Someone might refuse to step onto a blue floor because they believe it’s water. A change in flooring surface may look like a large drop-off. Shiny flooring may appear wet or slippery. Sometimes people have a problem telling where the floor ends and wall begins. It can be helpful to paint the baseboards a contrasting color.

People with dementia might struggle with visual distractions. Keep in mind that the dementia brain has to work hard to interpret visual data. Trying to interpret too much at a time can lead to irritability and agitation. As strange as it might sound, someone might have difficulty focusing on the TV if there is a loud patterned wallpaper on the wall behind the TV. Visual “noise” can keep a person with dementia from being able to focus on what is important visual information. (And you can tell how I feel about wallpaper by my description of it as visual “noise.” On a related note, it takes several weeks to destroy that visual “noise” with chemicals and razor blades when you move into a house whose previous owners obviously found wallpaper quite pleasing.)

It’s important to remember that people are visual data. We know that sometimes people with dementia forget their loved ones or mistake them for others. They don’t recognize their daughter. Maybe they think their grandson is their son. Perhaps they think a nursing home staff member is their mother. Of course, much of this is due to compromised memory.

Sometimes, however, a person with dementia simply needs more time to process the visual image of a person. Let’s say you visit your grandma who has Alzheimer’s. Walk into the room. And then stop about four feet in front her. Just pause. Allow her to process you visually as a still (not moving) image. This gives her the best opportunity to recognize you, and–even if she doesn’t recognize you–she is less anxious as you move toward her. Just like you should give someone with dementia plenty of time to process a question after you ask it, you should give them plenty of time to process an image you put in front of them.

The more I work with people with dementia, the more I realize that their behavior makes sense if I can figure out how they see the world. It’s just that figuring out how they see the world sometimes takes a bit of detective work.

 

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.

 

 

Mirrors, Strangers, and Friends in Dementialand

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When I was a kid, my mom worked at a nursing home. I remember one particular incident like it was yesterday–although it was (gasp) about 30 years ago.

My mom, a resident, and I were walking down a hallway. There was an expansive mirror on one side of the hallway. The resident had taken a fall a few days before. The fall had left her with nasty black eye and bruising all over one side of her face.

The resident caught a glimpse of herself in the mirror and froze. I thought she was about to make a comment about how awful her face looked, but she didn’t. She didn’t even know it was her face.

“What the hell happened to that old bag?” she exclaimed.

I remember being fascinated with how this person could look in a mirror at herself and think it was someone else. As I sit here thirty years later, I still find this one of the saddest, scariest, and most interesting things about dementia. Seeing a person look in the mirror and not recognize themselves always takes my breath away.

I know a man who accused his wife of cheating because this old guy showed up in their bedroom at night. I recently talked to the daughter of a man who refuses to take showers because he is sick of a creepy dude watching him. A woman at a local nursing home thinks that the woman in the mirror is actually the woman in the next room, and she keeps telling that woman to find a hobby instead of sitting there all day. And I know multiple individuals with dementia who have told family members that people are breaking into their homes. A few have even called the police.

A woman in a support group told me that one day she walked into the bathroom to see her mother washing her face–except it was the face in the mirror. She was getting angry that the woman wouldn’t stay still.

Mirrors are confusing and often agitating for people with dementia. There’s an easy solution, of course. You can take them down. In a family home, curtain rods can be placed over mirrors so that they have adjustable curtains or drapes.

I do know several people with dementia who have made friends with the figure in the mirror. One man chats away to his buddy as he brushes his teeth and bathes. He seems to think it’s someone he served with when he was in the Navy. Another women I know is convinced it is her mother who stares back at her, and she finds this comforting.

The grandmother of one of my friends used her friend in the mirror to reinforce her own opinions. My friend would walk into the nursing home room, and her grandma would say something like “Your shirt is too low cut. You look like a hussy.” Then her grandma would motion to her friend in the mirror and say, “And she agrees with me.”

Fortunately, her family decided to accept the friend in the mirror as part of their grandma’s reality rather than argue with her perception. My friend says she was outvoted on everything–because of that dang lady in the mirror who seemed to agree with grandma on fashion, politics, religion, and TV shows. (The lady in the mirror always wanted to watch Divorce Court, which happened to be grandma’s favorite show as well. What a coincidence.)

The young adult son of a woman with Alzheimer’s told me that he was somewhat prepared for the day that his mother didn’t recognize them. It wasn’t easy, but he saw it coming. He expected there’d be a moment when his mother would look at him blankly and not recall who he was. All the brochures and website had warned him.

He told me was unprepared for the day their mom did not recognize herself. She looked in a mirror and asked about the person looking back at her.

Her son said, “That’s my beautiful mom.”

She responded, “Oh, I don’t know your mom, honey.”

How strange is a disease that it can make you forget yourself?

 

 

Will Ferrell, Ronald Reagan, and Dementialand

alzheimer's, dementia, Will Ferrell

A few days ago, I read a plethora of news stories about how Will Ferrell was planning to play an Alzheimer’s-striken Ronald Reagan in a comedy.

Yeah, a comedy. I had to read this in several sources before I believed the news was legitimate. It just seemed like a strange project. I can’t even say I was offended when I first read about this. I was just…confused.

Reagan’s daughter seemed to learn this news at the same time as the rest of the world. She wasn’t pleased. I can’t blame her.

She penned a letter to Ferrell:

http://booksbypattidavis.com/an-open-letter-to-will-ferrell/#more-1732

Ferrell pulled out of the project, and his camp downplayed his interest in participating in the movie. I’ve read news reports that he had only read a script to see if he might be interested. However, other reports indicate he was considering producing the movie.

I did happen to read about a few samples scenes from the script. One scene has a Reagan referring to a wardrobe assistant named Libby, saying “I want Libby out! No more Libby!” In the movie, this would lead to a confused Reagan bombing Libya.

This got me thinking about a few things that annoy me… I frequently hear people joking about having OCD (obsessive compulsive disorder)–when they don’t have OCD. Someone on Facebook mentions that they are staying home to clean on Friday night because they have OCD. Or they say that they like to see the lines on the carpet after they vacuum because they have OCD. But they do not have OCD. It seems harmless enough…unless you think about the people whose lives are debilitated because they actually do have diagnosed and severe OCD. Please don’t say you have OCD because you like to be organized and enjoy having a clean house. It’s not funny or cute. OCD is an illness. If you don’t have it, be grateful.

I know someone who always says she has ADHD (attention deficit hyperactivity disorder). She says makes comments about her “ADHD” on social media. She talks about how she can’t stay on the treadmill more than 30 miles–because she has ADHD. She gets bored in yoga–because she has ADHD. She can’t eat the same thing for lunch two days in a row–because she has ADHD. But she doesn’t have ADHD. None of these “symptoms” truly disrupt her life, and she’s never been diagnosed with ADHD. I would expect that someone who actually had ADHD might be offended by her disregard of what ADHD is and the struggles it causes.

I find it interesting that people always make Alzheimer’s jokes around me. If they can’t remember something, they say they must have Alzheimer’s, and then they laugh. (It’s not even a creative joke, people. I hear it all the time. Come up with something better.)

Let me put this in a different context…

What if I had a bad cough and starting telling people I had cystic fibrosis–and expecting them to think I was cute and funny?

What if I had a pain in my stomach and continually made jokes about having cancer? What if I did this around people who actually had cancer or people who had lost loved ones to cancer?

What if I had a tension headache and kept referring to it on Facebook as “my brain tumor” even though I had not seen a doctor and there had been no mention of a tumor?

To be fair, I’ve been known to refer to humor as my religion. I can find humor in almost anything. Without this skill, I don’t know if I’d survive in this world.

But finding humor in a situation is different than seeing someone else’s life as a comedy. I tell my dementia families that it’s okay to laugh. In fact, it’s good to laugh. They succeed when they find humor in a difficult situation. But that doesn’t make dementia a comedy.

 

 

 

 

 

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.

 

 

 

 

 

Why You Shouldn’t Tell People in Dementialand to Calm Down (Oh, and Avoid Telling Other People to Calm Down, Too)

alzheimer's, dementia, dementialand

No one, in the history of the world, ever calmed down because someone else told them to calm down.

Case in point.

A few years ago, I was in the emergency room for kidney stones. As they were admitting me for pain control and eventual surgery, a nurse came in to put an IV in my arm.

Needless to say, it wasn’t one of my best nights. I was rolling around in pain and gripping the sides of the bed. I remember sweating profusely. I had been vomiting and couldn’t stop trembling. I wasn’t sure if they could get the pain under control, so in addition to pain I was dealing with anxiety.

The nurse, yielding a needle, got in my face. With her nose about three inches from mine (at least as my memory serves), she said firmly, “Now just calm down.”

I’m hoping that’s not a line she uses a lot. If it is, I’m surprised a patient in pain hasn’t managed to stick that needle through her forehead yet.

If I hadn’t been such a mess, I would’ve said something like, “Thanks for the tip. I thought I was looking pretty cool by writhing around in pain here, but you’re right. I’m gonna just chill.”

Rather than calming down, as my unhelpful nurse had suggested, I became more anxious.

The more I think about it, the more I realize that this is a natural response to the suggestion of “Just calm down.”

There was the time someone tried to steal $63,o00 from our bank account by, in short, stealing my identity. (Like most people, we don’t have $63,000 to steal, and this actually helped the situation be resolved more quickly in the end.) I got on the phone and called our bank. As I was trying to explain what happened, the bank employee on the other end said, “Okay, now just calm down here.”

As if panic was not a valid response to having your identity and more money that you technically had stolen from you?

I’m not sure she could’ve said anything that frustrated me more.

Why does being told to calm down have the opposite effect?

When we are told to calm down, the other person implies that we don’t have reason to be upset or frustrated. It implies that we are overreacting or that our feelings about a situation don’t matter. It implies that we aren’t being listened to or understood.

Unfortunately, we frequently tell people with dementia to calm down. If you have said this to person with dementia (which I have), I’m gonna go out on a limb and guess it wasn’t an effective strategy. My guess is that they felt like you weren’t listening to them. And you probably weren’t. They likely felt disregarded. And, they didn’t calm down. I’d be willing to bet that they got more anxious. They might have even become aggressive.

A woman at a memory care community in my town was once convinced that there was a bomb under the building. She tried to leave, and she encouraged everyone to come with her. When she realized she couldn’t leave, she freaked out. And that’s a logical reaction to her reality. If I thought there was a bomb under the building I was in and realized there was a code on the door that no one would tell me, I’d freak out as well.

She was told to….just calm down. Imagine yourself in her situation. You have information that you and others in the vicinity are in a dangerous situation. And you are being told to….just calm down.

The woman tried to explain the situation to yet another person, who cut her off dismissively yet again. Finally, she shouted, “If one more person tells me to f***ing calm down, I am going to f***ing slap them!”

I like to promote peace rather than physical violence, but if you work in a memory care community and frequently use the phrase calm down, maybe this wouldn’t be the worst way to learn a lesson.

So what works instead?

I’m not sure it matters if someone has dementia or not. When someone is upset, you take the time to listen to what they are upset about. You don’t dismiss their concerns (even if you don’t share them). You try to see their reality (even if it’s not your own).

Think about it. How do you like people to respond when you are frustrated, sad, anxious, or angry? How do you feel when someone tells you that you need to calm down? And how is that feeling any different if the reality you are upset about is a different reality than the one the others around you are experiencing (and I’m not just referring to dementia here–we all live in different realities)?

Recently I was doing a group discussion with ten individuals who have dementia. In about five seconds, a women went from enjoying a chat with the group to being convinced that no one liked her and everyone was “stabbing her in the back.” Of course, in my reality (which is irrelevant in this situation) her perspective made no sense. No one had said anything negative to her. All of the conversation had been pleasant. How could she be okay with everyone…and then not okay?

As she got up (and I worried she might hit someone), my instinct was to say “Now calm down.” But–keeping in mind that I’m quite ineffective when I use this direction with my husband, my college students, or my friends with dementia–I stopped myself.

“Can we step outside for a second?” I asked her.

She followed me outside the room. It took a minute for her to maneuver with her cane, so I had a moment to think about what direction I wanted to go.

I said, “I want to understand why you’re upset.”

She gave me a long explanation of why she felt alienated by the group. To be honest, I couldn’t follow most of it. I listened anyway. Then she told me someone had kicked her under the table. I had no idea if this was true or not, and I didn’t waste effort trying to figure it out. It made no difference.

“I can understand why you’re upset,” I told her. “Do you want to go back in or would you rather go watch TV in your room? I totally get it if you don’t want to hang out with these people.”

There was a long silence before she said, “I want to go back in. It’s okay.”

I’m not giving myself too much credit here. I don’t want to act like I have all the answers because it’s common for me to have situations like this blow up in my face.

But sometimes the best way to get someone to calm down is to deliberately avoid the words “calm down.”

I’m trying to strike those words from my vocabulary.

 

 

 

 

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.