Category Archives: caregiving

Choices in Dementialand (aka Confessions of a Spoiled Dinner Brat)

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At any given time, there are several blog posts in my “drafts” that I haven’t published. Sometimes they aren’t published because I think they are poorly-written and need some polishing. Once in a while I hold something back because I haven’t quite found the right words to explain what I want to explain. And then there are a few that I haven’t published because they are somewhat rambling and pointless.

However, this one has been a “draft” for quite some time for a different reason. I have not published this post yet because it will make everyone think I’m a spoiled brat. In a way, maybe I am.

Let me start by saying that my husband is a really good cook. Not only is he a good cook, he enjoys cooking. On the contrary, I am definitely not known for my cooking. And I don’t enjoy cooking nearly as much as he does. However, I do enjoy eating.

In the middle of any given day, he is likely to ask me, “What do you want for dinner?” He’s not asking which frozen pizza he should throw in the oven or if he should pick something up at Panchero’s (although both of these options are completely acceptable in my book). He’s asking what he should stop at the grocery store to buy and go home to prepare. Whether I say pasta, tuna steak, or an egg sandwich, he’s on it. Pretty amazing, right?

Well, yeah…except I hate the question “What do you want for dinner?” The great thing is that he’d go get and make absolutely anything I name, but that is also the struggle. Even though I’m a vegetarian who generally avoids fried food and doesn’t do spicy, there are probably a million options. That’s precisely why it’s such a hard question to answer. When he asks me what I want for dinner (especially in the midst of a long day at work), I usually can’t come up with a single idea.

I don’t mean to complain. The guy is willing to go grocery shopping and prepare dinner. You’d think I’d have the mental energy to make a decision about what we should have, but sometimes it’s just too overwhelming. When you can choose anything, sometimes it’s hard to chose anything. So when he asks me what I want for dinner, I usually say I don’t know or that I don’t care.

Choice is great. Being able to make our own decisions is what empowers us and makes us the people we are. If you think about some of the punishments that we hand out to criminals, an important factor is that we take away choice. People in prison don’t get too much choice about what to eat or when to go outside. Others make those decisions for them. This is a big part of why people in prison feel dehumanized and stripped of their identity.

While we don’t like our choices made for us, making decisions for ourselves takes mental energy. The other night, we went out for froyo. We were at one of those places where you top your own frozen yogurt and they weigh it to figure your price. (Total tab for my husband and me: Almost $15.) It’s great to be able to have choices in yogurt and toppings, of course. And, yet, I’m not sure choosing from 27 flavors of yogurt really makes a person happier than choosing from six flavors. That’s before you even get to the toppings. (I should add that we now have four top-your-own froyo places in town, so this all happens after we decide which one to visit.)

Evaluating and making choices, whether these choices are big or small, taxes our brains. There are times when we have so many options that we shut down and can’t make a choice. The brain becomes flooded and it’s just easier to not make a decision. I once had an international student in my class from Africa. He told me that the first time he went to buy laundry detergent in the US he looked at all the options and, completely overwhelmed, left the store without buying any. I recently read an article that said that women who have a ridiculous amount of clothes often look in their closet and say they have nothing to wear because the amount of clothing is overwhelming. For that reason, fewer clothes in a well-organized closet may make getting dressed in the morning less stressful.

Choices take mental energy for all of us, and the dementia brain may have even more limited mental energy. Decisions that require evaluating many options can be really difficult, even they are decisions that most of us consider minor and pretty inconsequential. What do you want to do today? What do you want for lunch? Where do you want to go? What do you want to wear? 

Sometimes we can help people (and not just those with dementia) by giving options. As people have more limited mental energy, the number of options should decrease accordingly.

Would you rather go to the park, the coffee shop, or the art museum today?

Do you want to wear your blue shirt or your red shirt?

A family caregiver I once talked to told me that she was worried about her mom’s appetite. She would often ask her mom what she wanted to eat. Her mom would say that she wasn’t hungry. A simple change in how she asked the question made a huge difference. She starting asking questions in a different way. She made her questions multiple-choice and limited the options.

“Would you like a turkey sandwich or a salad?” she would ask. Her mom would respond with her preference. It wasn’t that her mom wasn’t hungry. It was that she was overwhelmed by the question.

Not surprisingly, processing options may take longer for people who have dementia. Often we have the tendency to jump in and make a decision when someone doesn’t respond immediately. Or we ask the question again–in a louder voice. (Why is it so common for us to think someone will be able to process our question more efficiently if we yell at them when the opposite is true?)

When I was in graduate school and first started teaching college classes, I was frustrated that my students were not participating in the discussion when I asked questions in class. My major professor, who had thirty years of teaching experience, observed my teaching and gave me some helpful feedback.

“Elaine, obviously no one is answering your questions in class,” he said in his heavy Dutch accent. “You ask a question and no one responds because you don’t give them a chance. They don’t have time to process the question before you jump in and answer it yourself.”

I taught myself to slowly count to ten in my head (and tolerate the silence) after I ask a question to a classroom of students. Fortunately, my students seem to think silence is awkward so they jump in at about seven to answer–even if they don’t want to.

I’ve started using this same strategy when I talk to someone with dementia. To tell you the truth, I probably should use it with everyone. Because we perceive silence as uncomfortable, we often don’t give people time to process questions they are asked.

So…a note to my husband. Please give me 3-4 dinner options and then plenty of time to process my choices. Maybe a printed menu with photos would be nice.

He packs my lunch for work, too. Yeah, maybe I am a tad spoiled.

The B Word in Dementialand

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Burden. It means hardship, mental weight, or strain.

It’s a word caregivers at dementia support groups dance around awkwardly.

Caregivers vent. They talk about their lack of privacy or their dearth of support. They discuss their frustrations and challenges. They say they have no time to care for their own health or spend with friends. Every once in while, someone cries.

But then it usually comes back to a statement that goes something like this: “But it’s not a burden. I love her and I’d have it no other way.” Then they all nod knowingly in a sterile way.

One day, a woman made what I thought may have been a total support group faux-pas. She said it was a burden.

Let me start by saying that she was in her late 30’s with a couple of kids and a full-time job. Her mom had younger-onset Alzheimer’s and had moved in. For a few months, her mom had been able to contribute around the house. She cooked and did dishes. She could watch the kids for short amounts of time. She kept the house clean and pulled weeds. But lately her mom needed so much support to provide help that it really wasn’t help at all.

“Caring for mom is becoming such a burden,” she confided to the group. Everyone cringed at the word burden. “This disease is such a burden on our whole family but most of all it’s a burden on Mom.”

Although some members of the group seemed uncomfortable with her using the word burden, there was something about what she said that made me think. The disease is a burden, she said. The person isn’t a burden. And the disease is a burden to the person who has it even more than the caregivers.

We often say that we don’t mind caring for those we love when they are ill, whether that be with Alzheimer’s, cancer, or another disease. We tell others that we do it out of love. We say we wouldn’t have it any other way. I don’t doubt that this is the truth.

Yet, we wish that we didn’t have to do it at all. We don’t like it when our loved ones need care. We want to see people we care about doing the things that they enjoy. We hate seeing them in pain, whether it be physical or emotional. And that’s why we should hate Alzheimer’s…and cancer…and ALS…and cystic fibrosis.

What this woman acknowledged was not that her mother was a burden but that Alzheimer’s was a burden. And I agree. Alzheimer’s is a burden in a million different ways. Sometimes I feel like caregivers want to deny that the disease is a burden because if they use the b word it means that they don’t love the person who needs care.

You get to love the person but hate the disease. In fact, I encourage you to hate the disease and to tell everyone you know how much you hate it–because we’ve spent too long ignoring the challenges this disease presents to individuals, families, and society.

I talked to a family a few months ago who had lost their father to Alzheimer’s before his 60th birthday. They had been through a lot. He had been asked to leave (in their words, “kicked out”) of several assisted livings and memory care communities for aggressive and inappropriate behavior. They had gone through his savings and the savings of his children to try to secure him decent care. Although they weren’t entirely sure, his family thought he died because he had aspirated food into his lungs and developed pneumonia.

“Is all of this normal?” one of the daughters asked me. “I feel like our experience with Alzheimer’s has to be worse than the normal experience. If it’s like this for everyone, people would be fighting harder for a cure.”

I’m not sure there is a “normal” with Alzheimer’s, but I hear a lot of stories like this. The disease can be a real nightmare. They didn’t want to care for their father. They’d rather he didn’t need care in the first place. We care for people because we love them but it’s that love that makes caregiving so difficult. And it’s okay that sometimes we get angry and sad because we have to be caregivers, particularly when the person who needs care is young enough that they really shouldn’t need care (in a perfect and fair world, anyway). It doesn’t mean that our loved one is a burden. It means that caregiving is hard.

I’ve talked with many individuals who have an Alzheimer’s diagnosis. Keep in mind that this is a life-limiting illness. Eventually Alzheimer’s progresses to the point where life is not sustainable. You will die from the disease or with the disease. I know I may sound harsh in pointing this out, but I still struggle to get individuals to understand it. Life doesn’t end at diagnosis (and I know many individuals living and living well with the disease), but Alzheimer’s is terminal.

However, I’ve never had someone after their diagnosis mention to me that their greatest fear is death. Never. When I talk to individuals who are newly-diagnosed, they almost always say that their fear is becoming a burden to their family. Their family usually jumps in and insists that they could never be a burden.

Sometimes it’s better to acknowledge that they will all be burdened by the disease itself. And they will all be burdened together because that’s the way love works. They didn’t ask for this disease and it’s not going anywhere.

At a memory care community recently, a woman with dementia walked up to me and said, “My brain has a clog and I’m carrying around a ball and chain.” I didn’t ask for further explanation, but I sent a text to myself immediately so I would remember her exact words. It struck me as a better description of dementia than anything I’d read in a textbook.

Her clog? Her ball and chain? Those are her burdens. People with dementia are not burdens. They are burdened.

A Special and Weird Kind of Loneliness in Dementialand

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When I was in graduate school, I had a friend who was going through a rough stretch in her relatively new marriage. She told me something that struck me as interesting…and sad. She said that she was sometimes lonely when she was single, but that loneliness did not compare to the loneliness she now felt when her husband was right next to her. Her husband seemed like a stranger to her.

Shortly after talking to this friend, I came across the following quote:

It’s a lonely feeling when someone you care about becomes a stranger. —Lemony Snicket

I remember sharing it with that same friend after she had decided to file for divorce. And, for several years, I thought that quote was about falling out of love. I thought it was about thinking you knew someone and realizing they weren’t the person you thought they were…or maybe that they were but they changed…or you changed.

I was single at the time. This quote stuck with me. I vowed to never end up in a relationship that made me feel more lonely than I felt as a single person. I didn’t want to marry someone who would make me feel alone even though they were sitting right next to me on the couch. And I didn’t.

That’s what I thought that quote was about.

But recently I’ve used the same quote in a different way. And it makes me just as sad.

Dementia makes people lonely for the people right next to them. A woman once told me that she missed her husband even though she was sitting beside him. She cared for him 24/7 in her home. She was rarely not in the same room with him. She asked me how she could be so lonely when she was never alone.

She told me that she loved her husband for 30 years, and she loved the man who lived with her now, but that wasn’t her husband. He didn’t know who she was. He was often aggressive and destructive. She managed to love and take care of him, but it wasn’t her husband. She missed her husband. The hardest part, she told me, was looking at this guy who resembled her husband.

“I didn’t know I’d miss him this much when he was still living,” she said. “Now that’s a special and weird kind of loneliness when your husband doesn’t know who you are.”

A special and weird kind of loneliness? I couldn’t argue with her terminology, but in my field it’s actually called ambiguous loss–someone is psychologically absent but physically present. People in the early stages of dementia can very much be psychologically present in relationships. However, as dementia progresses, relationships change. We must modify our expectations and our perspective. And there is loss…

There’s no way around it. My former neighbor told me once she missed her husband’s conversation skills as his Alzheimer’s progressed. She told me she had always appreciated how he could argue with anyone and then charm his way back into their good graces. She missed that. She still had his smile and his hugs, but she was grieving all the great conversations she had. She was lonely. He was right here, and she was lonely.

It’s not just spouses that go through this. Parents with dementia might not be able to give advice like they used to. Dementia may keep grandparents from being there for us in the ways that they used to be there for us. When we can’t depend on people like we used to be able to, we feel lonely. We feel lonely for people we can see and touch.

A few years ago, I went to the funeral of a man who passed away from Alzheimer’s. His wife was standing up by the casket, dutifully greeting a long line of family and friends. I overheard an interaction that I have not forgotten.

Someone gave the wife a hug and said, “I know you’re going to miss him so much.”

The wife smiled and said, “Oh, it’s okay. I’ve been missing him for years now.”

It was one of the more awkward funeral interactions I’ve experienced.

There’s a lot of love in Dementialand. I see a lot of laughter, hope, and joy. There are families living in Dementialand who make the most of every moment and opportunity. Yet there’s so much loneliness.

And there’s no loneliness like the loneliness that occurs when you’re looking right at the person for which you are lonely. That’s what dementia does.

Why We Can’t Afford to Accept Dementialand (And What the General Public Hasn’t Yet Figured Out)

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I think I’ve given someone the wrong impression about how I feel about Alzheimer’s and related dementias. Someone the other day said to me, “I think you’re right. We just need to accept that old people get dementia and lose their memories.” Hmmmm….. I took a deep breath. It’s not just about old people and it’s not just about memory loss.

Also, I think a point of misunderstanding here is how I’ve used the term acceptance in my blog and public speaking. When someone has dementia, we need to accept the changes the occur. Fighting those changes is a bit like try to herd cats (inefficient and frustrating for all involved).

But should we accept Alzheimer’s and related dementias? Absolutely not. We should fight by increasing education and research. We cannot afford (financially or otherwise) to throw in the towel on this battle.

I could make a case that we need to find a cure or prevention method for diseases that cause dementia because these diseases (e.g., Alzheimer’s, Lewy Body Dementia, Frontotemporal Dementia) cause suffering and end lives. But I am going to take a different approach–one that may be more appealing to legislators, policymakers, and economists.

If Alzheimer’s and related dementias progress to end stage, most individuals need 24/7 care and reside in nursing homes. Keep in mind the most common reason for nursing home admittance is dementia. If we can prevent or cure dementia, more people will be able to stay in their homes (or at least seek out a less intensive care option) as they age. Most people would choose to stay at home given the option. We don’t like to be dependent. We don’t want to be told when and what to eat. But beyond that…nursing home care is expensive at the individual and societal level.

Some people have enough personal wealth to pay for their nursing home care until the end of life. A few people have long term care insurance (and some of these individuals quickly find out that their policies do not cover what they expect they will). But the rest of us….

The rest of us pay until we can’t pay anymore, and our family is decimated financially. At this point, the state pays for our nursing home care. (Contrary to popular belief, Medicare only pays for nursing home care in very limited short-term cases.) As people live longer and more individuals have Alzheimer’s and related dementias, as a society we will struggle to pay for care. And I think the word “struggle” is an understatement.

The cost of nursing home care is dependent on where one lives and a few others factors (e.g., semi vs. private room, level of care). However, a widely-reported mean is $220 to $250 a day. This adds up to $80,300 to $91,250 a year. And you thought college was expensive. Very few of us can pay for an extended stay in a nursing home without long term care insurance or state assistance. And it’s rare that people have long term care insurance because it’s expensive and you have to be pretty healthy to qualify. Sometimes in the end it turns out to be a rip off anyway.

I’m not sure legislators understand the financial crisis this will create. In fact, I have participated in three informational panels for state legislators to learn more about the need for funding for research and support for Alzheimer’s and related dementia. Each time I came in my business suit (a rarity for me) prepared with financial numbers and statistics. The total number of legislators that attended the three sessions combined: Three. Actually, make that two. One legislator attended two sessions, and it’s misleading to count him twice. The general public doesn’t get that this is an impending financial and public health crisis, and apparently legislators don’t get it either.

In my opinion, the biggest challenge we face when we try to rally support for Alzheimer’s and dementia funding is combating the myth the dementia is only about memory loss. The general public still thinks that dementia is the natural process of increasing forgetfulness that occurs as we get older.

First of all, dementia is not normal aging. (And I will add the dementia doesn’t only impact old people. I know people in their late 30’s with Alzheimer’s and related dementias.) There are some normal age-related memory changes, but these normal changes do not severely impact daily life.

I speak to many older women who worry they have dementia because they used to be able to bake their signature cake from memory and now they need to look at the recipe. Sometimes people think they have Alzheimer’s because they used to be able to remember several items at the grocery store without writing them down. Now they need to write a list. Those are normal age-related memory changes. When we have these changes, we can use strategies (e.g., recipes and lists) so that they don’t negatively impact our lives. These strategies may work at the start of dementia, but over time a person becomes incapable of following a recipe or creating a list.

The other piece of the myth of dementia that has held us back in terms of research and funding is the incorrect assumption that this is just about memory. Memory loss is one part of dementia. I hate to be this harsh, but dementia is about eventual complete and total brain failure. Take a second and think about what your brain controls…. Actually, it may be easier to think of what your brain doesn’t control. Your brain is the control center for EVERYTHING about you.

What does your brain control? Your mood. Your movement. Your memory. Your swallowing. Your immune system. Your impulses. Your breathing. Your speech. Your language. Your non-verbal communication. Your facial expressions. And this is by no means a complete list.

So here are some things that may happen with Alzheimer’s and related dementias that are not memory related:

1. People with dementia might eat things that aren’t edible, like marbles or rubber bands. They might not realize the food they are eating is spoiled or that it’s not prepared (e.g., eating cake mix or raw eggs).

2. Dementia can cause a person to have issues with balance and movement. It is common for dementia to cause someone to be unsteady on their feet and fall down stairs. Eventually, it can progress to the point that the person can no longer walk. At the end stage, people are bed bound and pressure sores are problematic.

3. An early sign of dementia is being unable to detect sarcasm. A person with dementia may also be unable to figure out that someone is lying even when it is apparent to others.

5. Compulsive behavior (such as repeatedly locking doors or buying a large number of food items even though the pantry is already stocked) can be a sign of dementia. Someone who starts pacing around the house compulsively might have dementia.

6. A lack of eye contact during conversation or inappropriate staring in public places might be a sign of dementia. A person’s non-verbal communication skills can become compromised.

7. Often dementia is mistaken for depression. Many people go to the doctor early in their disease process and are misdiagnosed as having clinical depression. This can be tricky because, not surprisingly, people who have dementia are often also depressed.

8. Dementia impacts the part of the brain that regulates mood, so being moody or displaying inappropriate moods can be a sign of dementia. If someone starts laughing at things that aren’t funny, they may have dementia.

9. Dementia can impact swallowing, and individuals are at an increased risk for choking. Often families must make a decision about whether or not a feeding tube is an option. People at the end stage of their illness may also aspirate on oral secretions.

10. At the end stage, the immune system is compromised. The brain activates the immune system. As brain cells die, the immune system doesn’t respond as it should. It is common for someone with end stage Alzheimer’s to die of a urinary tract infection that has spread.

It’s not just about memory. It’s not normal.

And we can’t afford to just accept Alzheimer’s and related dementias. It’s time to fight.

Before and After in Dementialand (Or Why I Watch TLC and HGTV)

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I was talking to some friends a few weeks back, and the TV show My 600-Pound Life on TLC came up in conversation. It’s a reality show about super-obese individuals who get weight loss surgery and attempt to change their lives for the better.

For some reason, I was hesitant to admit to my friends that I watch the show. I wanted to say I had never heard of it. I wanted to say I had no interest in watching a reality show like that. Yet, the truth is that I have a season pass on my DVR. I started thinking about what it was about this particular show that I enjoy, and I finally realized why it appeals me. I love a good before-and-after.

I used to watch What Not to Wear. I DVR’ed that one as well. I would watch the beginning but then fast forward to the end. I didn’t care about all the shopping and hair talk in the middle. The make-up tips didn’t interest me. I only cared about the before and the after.

I’m really not that into homes, design, or decorating, but I watch a bunch of shows on HGTV. Why? Because I enjoy the transformation. I love the idea of taking something that is in shambles and making it something wonderful. I also have somewhat of a crush on the Property Brother that does the construction. (The one that does the real estate number-crunching stuff just isn’t my type.)

I really get into those house-flipping shows. There’s Flip or Flop, Rehab Addict, Fixer Upper… If you know me at all, you know I have no interest in flipping a house. If I ever talk about flipping a house, please do an intervention. I like the idea of flipping a house, although it’s not something I have the skills to pursue. I just like the notion of transforming something into something much better. It’s about the before-and-after. The before is dull and drab. The after is bright and shiny.

I also watch Intervention on A&E for the before-and-after effect. Someone might be a drug addict before but maybe–just maybe–they can be a productive member of society after. There a certain level of hope in that.

In grad school, I lived with my friend, Lisa. We would watch Intervention every Sunday at 9 pm. Exactly at 9:40 (as the family was just gathering for the intervention), Lisa would say it was time for her to go to bed. It still bothers me that she didn’t get to see the after of all those drug addicts. Why watch if you don’t get a chance to see the after? Couldn’t she stay up past her bedtime just one night a week? (As a side note: Lisa was a pretty great roommate. My only complaints about her are that she wouldn’t watch the end of Intervention with me and she had the willpower to eat only one cookie per day out of a huge bag in the freezer.)

Families impacted by dementia are often caught up in the before-and-after. There are the years before dementia. Then there’s the after. Everyone with dementia is different, and dementia affects everyone in a different way. But there’s no doubt that the after is not the same as the before. (A person with Alzheimer’s once said to me, “I’m still me but I’m a different me.”)

When I meet someone with dementia that has progressed past the earlier stages, I notice that their family often needs to tell me about the before. Maybe she used to be a successful real estate agent who could sell any house in a week. Maybe he was a teacher who touched a thousand lives. Maybe he was a cop or a firefighter who selflessly served his community. Maybe she made the absolute best apple pies on the face of the earth.

And I always listen when they tell me about the before. There is value in knowing about the before. It helps us to connect with an individual with dementia when we know where they’ve been, but I feel like the family is sometimes telling us this for a different reason. They are telling us about the before because the after isn’t enough. They want us to understand that this person is more than what we see in front of us.

I once met a woman with Alzheimer’s who had been a fantastic golfer. She and her husband traveled around the country playing in golf tournaments. Her family told me that she had been incredibly competitive…to the point where she would trash talk other female golfers. Her kids told me that she didn’t make a lot of friends on the golf course, but she won a lot of huge trophies which now decorated her room at the memory care community as reminder of her before. She once told an employee that she won all the trophies for having the largest cow at the state fair. Obviously, they didn’t hold the same meaning to her that they did to her family. They were a before thing. She was in the after.

As her Alzheimer’s progressed, she could no longer go out and play nine holes of golf. Her kids started taking her to the driving range until she was unable to do that. After she moved into memory care, a creative staff member went to Walmart and bought a few items so they could set up a mini-golf course in the hallway. The woman lit up like the staff had not seen before. The ball never went in the hole, but she would putt up and down the hallway for hours.

The staff expected her family to be excited when they arrived and saw how much fun she was having. They were not excited. In fact, they were angry and saddened. They thought it was demeaning that a woman who had once been a competitive golfer was now aimlessly pushing a wiffle ball up and down the hallway with a plastic golf club. They were caught up in comparing the before to the after.

I realized recently that my love of the before-and-after does not extend to working with individuals with dementia. It’s not that I don’t care about the before. It’s fun to hear about a person’s past, and the before holds some keys to what might work when you try to improve the qualify of life for someone with dementia. Most importantly, no one wants their life to be forgotten. We want to know that people will remember what we did and how we did it. We want to know that what we’ve done has been meaningful and worthy of remembering–especially if don’t remember it ourselves.

Although we should remember the before, we also need to let go of it. If we don’t let go of the before, we can’t appreciate the after. This is easier for a professional caregiver than a family caregiver. Professional caregivers don’t have a before in their mind when they work with someone who has dementia. Family caregivers often can’t get the before out of their mind.

I have recently realized that I must not be the only person who enjoys TV shows based on the before-and-after concept. There’s Restaurant: Impossible, Biggest Loser, Extreme Weight Loss, Flea Market Flip….You can probably name many more if you think about.
But there is no before-and-after reality TV show about Dementialand. I’m not sure how many people would tune in. When the after isn’t always bright and shiny, sometimes the show loses its appeal.

Why Dementialand Needs an Orientation

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There’s a lot people don’t tell you about dementia.

The doctor says your loved one has dementia. Maybe it’s Alzheimer’s. Maybe it’s Vascular Dementia, Lewy-Body, or Frontotemporal Dementia.

The doctor only has a limited amount of time because that’s how our medical system works. You go home. No one teaches you how to live with dementia. No one tells you what challenges might lie ahead. You think it’s about forgetfulness, but you will learn that it’s much more than that. It’s about brain failure, and your brain is the control center for your body. Dementia can cause a person to be unable to swallow and control motion. If it progresses far enough, a person isn’t able to eat, talk, or walk. Maybe no one told you that.

No one tells you what to do when your loved one forgets they can’t drive anymore or when they insist that they have to go to work when they haven’t worked in 15 years. No one teaches you how to deal with a previously mild mannered mother who is screaming obscenities you didn’t know she knew. What do you do when you have to buy Depends for your dad and he takes them off and tries to flush them down the toilet? How do you make sure Grandpa doesn’t leave the house and get lost when he gets up at 3 am?

When your mom starts saying she doesn’t have any kids, should you tell her she actually has three? Should you explain to her that your dad passed away years ago when she asks when he’s coming home? And if your grandma starts slapping you when you tell her she has to take a bath, should you push the issue? How often does she really need to bathe, anyway? No one told you how to deal with this.

I spoke to a woman this week whose mother has dementia. Her mother constantly apologizes to her, making statements like, “I’m sorry I’m not the mother I used to be. I’m sorry I can’t be there for you.” And then they both cry.

After a few years of this, she finally came up with a response. Now she says, “You may be a little different than you were. I loved the person you were, and I love the person you are now.” She says she regrets that it took her years to learn how to figure out the right thing to say.

No one tells you how to help your loved one through the extreme anxiety that may come with navigating an unfamiliar world. No one tells you what to do when they cry but can’t tell you why they are sad. And what do you do when they get really pissed about something that never even happened? What if they think another family member is stealing from them?

You promised them you’d never put them in a nursing home. But what do you do when someone needs to be with them 24/7 and you have a full-time job? How can you break that promise without feeling guilty for the rest of your life? And how do you figure out which nursing homes are best for people who have dementia anyway? Also, you can’t figure out how you’re going to get your 250 pound father in the car and to the nursing home when he says he’d kill himself before moving there.

And when is it okay to laugh? A woman once asked me if she had done the right thing when her husband forgot to pull up his pants and waddled out of the bathroom with his Dockers around his ankles in front of company. I asked what her response was. She said, “I laughed, but I don’t know if I’m supposed to.”

No one tells you if it’s okay if you aren’t always completely honest with someone who has dementia. I recently talked to a man whose dad died of Alzheimer’s. He said, “I wish I have known it was okay to lie sometimes. That would’ve made it a lot easier.”

Although I’ve referred to how a family is unprepared for the challenges they might encounter, the same is true for individuals who have been diagnosed. How do I cope with changing abilities? How do I tell other people about my diagnosis? Am I able to handle my own finances? What can I do to make sure I remember to take my medication each day? (Once someone with Alzheimer’s said to me, “I’m on some meds for my Alzheimer’s, but I don’t always remember if I’ve taken them. Maybe if I remembered to take it, I’d remember to take it.” How’s that for irony?)

There’s a recent research study by the Alzheimer’s Association that suggests less than 50% of people with Alzheimer’s are even told of their diagnosis. How can you prepare for something when you’re not given all of the information?

According to the Alzheimer’s Association, one out of three older adults dies with Alzheimer’s or a related dementia. In a nation where dementia is so common, how can we be so unprepared? Sure, we wait and hope for a cure…but in the meantime, how can we neglect to provide the education and support so many families need? And why can’t we talk about dementia without embarrassment or stigma?

And although I am confident we will someday find a cure, it will not be today. I’m not a pessimist, but I am a realist. Medical technology has increased our lifespan–which has in turn increased the likelihood that we will experience dementia. In other words, we can save you from all this other stuff so you’ll live long enough to get dementia. Yet, we are completely unprepared for the challenges dementia brings.

And it’s not just about old people. I know several people who were diagnosed in their 30’s. And I don’t think I fully understood this tragedy of this disease until I stood face to face with someone who was my age and had just been diagnosed. She even looked a little like me…I went from knowing ‘this could be me someday’ to ‘this could be me.’ There’s a difference.

Alzheimer’s is a fatal disease. Lewy-Body Dementia and Frontotemporal Dementia are terminal illnesses. Dementia kills people. I hate to be this blunt, but I think society’s lack of understanding of the terminal nature of dementia stagnated research for many years. We think it’s just about old people becoming forgetful, but it’s not just about old people and it’s not just about forgetfulness. It’s about total brain failure. Alzheimer’s has no survivors. You will die from it or with it.

I have to be careful when I mention that dementia is fatal. Many individuals and families impacted by dementia don’t realize this. In the past, I have stated this in a very matter-of-fact way, but sometimes it’s the first time that people are hearing it. No one tells them.

There are also positive things that no one told you about. You might smile because your mom laughs at something that she sees…but no one else sees. You don’t care that she’s having visual hallucinations or has issues interpreting what she sees. You’re just grateful she finds humor in something.

It might make your day that your dad thinks he is a New York City subway station as he wanders around the nursing home. After all, he loved the subway and New York was his favorite city. Grandma has been retired as a teacher for many years, but she conducts class in her memory care unit using dolls as her pupils. She finally has a sense of purpose again, and it makes you happy. No one told you that you that such things would make you happy. You didn’t realize the challenges of caregiving for someone with dementia, but you also didn’t know about these unexpected moments in which you would find joy.

No one told you that some friends and family would abandoned you. Sure, maybe they say that they pray for you and think of you all the time, but they aren’t there offering to run to the grocery story or stay with dad so you can go out to lunch. On the other hand, no one told you that some people would step in and amaze you. Maybe they’re not the support system you expected, but they get you through the day.

I advise incoming college freshmen at summer orientation each year. When young people graduate high school and progress to college, they must adapt to a new set of norms, an entirely different culture, and different goals. What worked in high school may not work in college. For that reason, there is an extensive two-day orientation to Collegeland. It includes sessions on financial issues and tips for success. There is no such orientation to Dementialand.

I wish there were an orientation because there are a lot of things about Dementialand that no one told you.

Small Victories in Dementialand

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I try to respect people’s privacy. Within my blog, I change names and identifying details of individuals. And, when possible, I ask for permission to tell stories.

Almost without exception, people want their stories told. They are excited about the possibility they have had an insight or experience that others might find interesting or useful. They may not want their names given, but they want their stories out there. They want their stories told not because they want attention or credit, but because their story might help someone in a similar situation. And I love that most people are like this. When it is possible, they want to use their own struggles to make life a little easier for someone else, even if they’ve never met that someone.

I had a “first” of sorts this week. I was out running errands wearing bleach-stained sweats and a baseball hat. It was one of those days when you hope you don’t see anyone you know, but I did. I happened to run into an acquaintance, Shirley, who reads my blog, and she told me a story.

After she finished the story and was walking away, she said, “If you think this story could help someone else, please feel free to repeat.” I do think it could help someone else, so I will repeat.

Shirley’s mom has Alzheimer’s and lives in a nursing home. At this point, she rarely remembers family members, and Shirley has started calling her by her first name because “Mom” doesn’t make sense to someone who doesn’t remember she has kids.

A while back, Shirley and a family friend were visiting the nursing home. They had brought in some Blizzards from Dairy Queen and were helping Shirley eat hers.

With a mouthful of Oreo Blizzard, Shirley’s mom said to Shirley, “Honey, you make good food. Is there a comment box here? I want to write a comment about how nice you are. Maybe you’ll get a raise.”

As Shirley told me this story, tears welled up in her eyes. She explained that as a kid she had always sought her mom’s approval but never felt like her mom was able to express admiration or pride. She never felt quite good enough for her mom. Despite her mom identifying her as a nursing home staff member, Shirley had this overwhelming feeling of satisfaction that she had done something that met her mom’s approval.

As they left the nursing home, the family friend said to Shirley, “It’s so hard for me to watch how your mom doesn’t even recognize you. I feel so bad for you.”

I talked with Shirley about how two people can perceive the same situation very differently. Although the friend saw this interaction as sad, Shirley left the nursing home with a sense of peace and contentment she hadn’t felt in a long time. What her mom had said was so meaningful that it took her breath away. And her friend simply saw a woman with dementia who no longer recognized her own daughter.

Dementia is not a “look on the bright side” type of thing. It’s a fatal disease that leads to emotional and physical pain. It gradually robs us of our friends and family members. We can’t prevent it, and we can’t slow its progress. I would never tell a family or individual to see the glass as half full after there is a diagnosis of Alzheimer’s or a related dementia.

And, yet, sometimes there are these poignant moments, and you have a choice about how you interpret them. When you are able to find a positive way to interpret an interaction with someone who has dementia (when you could interpret it negatively), you win. It’s absolutely a victory.

Sometimes you don’t get a lot of victories with dementia. So you gotta grab them when you can.

In that moment, it was Shirley 1, Alzheimer’s 0. Maybe the score would be different the next day, or even in 10 minutes. But you only focus on the game you’re playing right now.

Thank you for sharing that story with me, Shirley. I rarely cry, but you almost made me tear up in the snack aisle at Walgreens.

Changing the Environment in Dementialand (and How I Broke One of My Worst Habits Ever)

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Recently I realized I had developed a really bad habit. Not just bad but dangerous. I had started glancing at my phone while driving. I’d hear it buzz and couldn’t resist taking a look to see who had sent me a text or email. I wasn’t that person driving in traffic with my phone in my hand, but I wasn’t proud that I couldn’t drive the 12 1/2 minutes home without looking at my phone at stoplights.

So I tried to stop. And I couldn’t. It had become a habit, and habits can be hard to break. I wasn’t going to be able to easily extinguish my urge my look at my phone, so I was going to have to change my environment.

I made a decision to silence my phone and put it on the floor of the backseat where I could not see or hear it. For a couple of days, I found myself wanting to look at it. Eventually I stopped thinking about it as much. Putting my phone out of reach and out of sight (literally) made all the difference.

I decided to try this strategy after thinking about the advice I give many family and professional caregivers who have loved ones with dementia. I am always using the phrase “Change the environment.” Changing the environment is easier than changing a person’s impulses, thoughts, and behaviors. In other words, putting my phone where I couldn’t reach it was easier than not reaching for my phone when it was on the seat next to me.

At a caregiver support group, I spoke to a woman who said that her husband with Alzheimer’s was destroying things around their home. For instance, he had stood on a chair, taken the clock off the wall, and yanked the hands off of the clock’s face. He had also slammed some of her collectible dolls onto the floor, cracking off their heads. One day he even took some framed photos of the wall and literally threw them out the back door. She found herself losing patience with him.

She asked what she could do to get him to stop. I only had one idea. She needed to change the environment. I suggested she take anything she found valuable, meaningful, or important and place it in one room of the house. She could then use a lock system to keep him out of this room. As long as the items were around and available to him, he was going to continue to destroy them (and she was going to yell at him). As I saw it, the only option was to change the environment.

I gave the same advice to staff at a nursing home recently. A woman with dementia had a room that overlooked a fantastic garden. In the middle of the garden was a large concrete rabbit. The woman thought the rabbit was a stray cat, and she spent a lot of time worrying about this stray cat. She didn’t know if someone was feeding it or if it had a home. All day long, she tried to go outside to help the cat. It was to the point that the woman was sometimes in tears because she wanted to check on the cat but couldn’t get outside. She was wondering around the facility in hysterics. Obviously, telling her the concrete rabbit wasn’t a cat was not helpful. Again, I only had one suggestion–change the environment.

I asked an employee if it was possible to move the concrete rabbit. She explained that it was purchased specifically for that spot. Then I proposed another idea…move the resident to room where she could not see the rabbit. In the end, they did move the rabbit. I guess that was the easier option. They changed the environment.

Changing the environment can set us all up for success. I’m not just referring to those with dementia. If we don’t want to be tempted to get ice cream on our way home from work everyday, we should modify our route so we don’t drive by Dairy Queen. If we don’t want to spend more than $50 on a trip to Target, we should take $50 cash and leave the credit cards at home. If we are trying to curb drinking, we should stay out of bars. It’s easier to modify the environment than to depend on our willpower and reasoning when challenges arise.

When it comes to “challenging behaviors” in dementia, sometimes changing the environment seems to be an obvious solution, but it doesn’t occur to the people closest to the situation. I once spoke to a woman whose mom had Alzheimer’s and was hospitalized for a urinary tract infection. A friend had sent beautiful (and likely expensive) flowers to the hospital. The flowers sat in a large vase in the corner of the room. However, the mother thought the flowers were a scary clown face. She kept complaining about the clown in the corner staring her down.

The daughter and the nurses kept bringing the flowers over to show her that they were indeed flowers rather than a clown face. Of course, she was not convinced and become more and more agitated. Then a 10-year-old relative stopped in. He sized up the situation, picked up the flowers, and slammed them in the trash. Then he yelled, “I killed Scary Clown!” Problem solved. (In retrospect, he could’ve taken them out to the nurses’ station, but I guess he had a taste for the dramatic.)

It’s much easier to move a concrete rabbit than to convince a woman with dementia that the concrete rabbit is not a stray cat who might be hungry. It’s much easier to put valuables in another room than to nag a guy with Alzheimer’s about why he shouldn’t demolish them. And it’s easier for me to put my iPhone in the backseat than to try to resist the urge to look at it while driving.

If you interact with someone who has dementia, consider changing the environment in particularly in response to behaviors that might be harmful and dangerous. If you have a goal or are trying to break a bad habit, consider changing your environment to set yourself up for success.

Oh, and if you can’t help but look at your phone while driving, throw it in the backseat. If that doesn’t work, consider the trunk.

But When Are You Supposed to Grieve in Dementialand?

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I gave a presentation for dementia family caregivers at a memory care community last fall. A middle-aged woman in the front row did not seem impressed with me at all. She almost scowled at me when we did make eye contact, but for most of my presentation she stared at the wall above my head. I wondered if I had said something to offend her. After I was done talking, she came up to me.

She blurted out, “My husband has early onset Alzheimer’s. So when am I supposed to grieve?”

I asked her what she meant. She said she grieved when he was diagnosed. She grieved when he had to move to the memory care community. She grieved again when he no longer knew who she was.

She seemed so angry. I wasn’t sure if she was angry at Alzheimer’s, grief, or me. Maybe all three of us.

“When he dies, am I supposed to grieve again?” she asked me. She seemed almost annoyed at the idea of having to grieve again after all the grieving she had already done.

This question likely stemmed from concept I mentioned during my presentation. I had talked briefly about “ambiguous loss,” which means that there is some uncertainty about whether someone is gone. Examples would be soldiers who are missing in action and people who are in comas. More recently, we’ve applied this term to people with dementia.

When do you grieve when you’re not sure if people are dead or alive? Do you grieve if they’re right there with you but they linger somewhere between this world and another? Those are the types of questions families undergoing ambiguous loss encounter.

When someone dies in a car accident, grief comes all at once. When someone dies of Alzheimer’s, the loss is much different. I’m not making the case that it’s easier or harder, better or worse. But it’s a different journey. We may feel like we’ve lost our loved one little by little over years. In some ways, we might feel like there is little left to lose when death comes. And yet, even if there is relief, there is still a loss.

I’m not an expert on grief, but I will tell you this… I hate Elisabeth Kubler-Ross’s stages of grief. You know the model. There’s denial, anger, bargaining, depression, and acceptance. I used to think these stages didn’t work for dementia because of the long goodbyes and multiple gradual losses involved in diseases that cause dementia. But it’s only recently that I’ve realized that these stages don’t work for grief in general.

In defense of Kubler-Ross, she eventually came to state that all stages were not experienced by everyone, that the stages did not always occur in order, and that some people experienced emotions outside of the five that she listed. Most thanatologists (those are people who study death–fun, right?) acknowledge there is no real research or evidence to support Kubler-Ross’s stages.

Despite these limitations, people generally really like the theory. Why? Because it’s comforting to think we progress through these stages and come out at the other end (acceptance). But when we lose someone close to us, it’s not that simple. Grief just isn’t that clean and tidy.

And when we grieve, we often have the expectation that the progress will be linear. That we will “progress” forward at a steady rate toward some end goal. But in reality, there is no end goal. There’s no point where we won’t hurt. The best case scenario is that we get to a point where life is enjoyable despite the pain.

We often are also told that our grief will make us better, stronger people. I think that’s a bunch of crap. A college student of mine lost her sister and received a sympathy card that suggested she would emerge on the other edge of her grief as a wiser and more loving individual. She said she didn’t want to be wiser and more loving; she just wanted her sister back.

I once talked to a woman who had just lost her husband to dementia. She was relatively young (probably in her 50’s). She told me she was scared she could never enjoy life again, but her bigger fear was that she could enjoy life again. And if she could enjoy life again, what would that mean about her? It terrified her that a week or so after her husband’s death she went out with some friends for margaritas and actually had a pretty good time.

“But my husband hadn’t known me for a year,” she said, as if she needed to defend herself. She certainly didn’t need to defend herself–not to me, anyway. “It’s like I didn’t know what stage to be in…so I went out for margaritas. In my mind, I shouldn’t have gone out for margaritas until he was gone at least a month.”

And then there was the woman who had lost her husband to Alzheimer’s after taking care of him for 15 years. She said when she passed she felt a lot of things, but the overwhelming feeling was uselessness. Who was she if she was no longer his caregiver? Was there even a reason to get up in the morning? Although she was continually frustrated by her husband’s dependence on her (and resentful of her caregiving responsibilities), she cried after he passed because no one needed her. Kubler-Ross never mentioned uselessness.

The problem with the Kuber-Ross stage theory is that it sets up some expectations and predictions for grief. And when we don’t follow the path we expect, we think we’re doing something wrong. This is even more evident when we experience “long goodbyes” like those that happen in Alzheimer’s.

When that woman asked me if she was supposed to grieve again when her husband died, I didn’t have a good answer. I told her however she felt at his death would be okay, and she wouldn’t really know until she got there. I drove two hours home that night (in a blizzard, nonetheless) thinking about what would have been a better response.

I wish I had said that there is no “supposed to” when it comes to grief.

Writing About Dementialand

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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