Tag Archives: alzheimer’s

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.

Forgetting Your Manners (Among Other Things) in Dementialand

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Several years ago, I was sitting with a group of individuals who had recently been diagnosed with Alzheimer’s. I don’t spend a lot of time with people in the early stages of the disease. Many of the people with Alzheimer’s that I talk to are past the point where they are able to tell me what it’s like to have Alzheimer’s. Although I had been to many caregiver support groups, this was the first time I had been at a support group for individuals who had been diagnosed.

The group was talking about fears. Although Alzheimer’s is a terminal disease, no one mentioned death or dying. No one talked about the anxiety and depression that often accompany Alzheimer’s. Surprisingly, several participants said that their biggest fears were actually related to having limited financial resources for care.

One man, who was still able to drive, was terrified of losing his driver’s license. If he lost his license, he’d have to depend on other people for transportation and he knew it would be difficult for him to ask for rides. A woman in her late 40’s was scared of how her children would negotiate the loss of their mother as the disease progressed. She worried they would feel burdened taking care of her when they should be establishing their careers and starting families.

Then there was a quiet woman, who had not yet spoken much, who told us about her biggest fear. Her biggest fear was forgetting her manners. She feared being in a nursing home and having someone care for her–but not being able to thank them for their help. She worried the basics of etiquette might escape her. Maybe she’d start interrupting people or chewing with her mouth open. If she needed help, she worried she’d ask for it in a rude or demanding way. She was frightened she’d be unable to be polite as the disease progressed.

Maybe this is an obvious point, but it hadn’t hit me until that day. And it goes beyond Alzheimer’s. What we fear losing the most is dependent on how we define ourselves.

The man who was afraid of losing his driver’s license? He had always defined himself as independent. He clung to that. The woman who worried about burdening her children? Being a mom was an important part of her identity. And a good mom launches her kids out in the world to develop successful careers and happy, healthy families. And the lady who worried about losing her manners? She had always aimed to be a poised, polite, kind, and gracious person. Since she was a child, people had complimented her on her manners. That was just who she was.

We all have traits and roles by which we define ourselves. Ask yourself “Who am I?” Then think about the possibility of losing the things that make you who you are. This is why retirement is a struggle for some individuals. Sometimes we lose a part of our identity that we’ve really valued. Who are we if we are not a plumber, a nurse, or a college professor? It may take a while to figure that out.

A few years ago, I had a knee injury. Obviously, the type of loss created by such an injury cannot be compared to dementia, but it did threaten a part of my identity. I am a dedicated and motivated (although not fast) distance runner. I have done two marathons and over 20 half-marathons.

It’s not about winning races. (To be honest, I have won a few 5ks in my age group, but that only happens when I am the only woman 30-39 who shows up without a jog stroller to push. This has actually been the case in a couple very small local races.) It’s about being a runner. Who am I? Among other things, I am a runner. I don’t need to post every run I do to Facebook. I realize that the world doesn’t care if I ran 5.63 or 5.69 miles today or if my pace was over or under a ten-minute mile. But I get out and get my run done. I didn’t realize this was such an integral part of my self-definition until I was faced with letting it go. Fortunately, I had surgery and am back out on the roads. (Sorry to all the female runners pushing jog strollers–I’m back!)

Who am I? In no particular order, I’m a wife, daughter, friend, college professor, Alzheimer’s awareness advocate, runner, public speaker, and fitness instructor. What if I were faced with losing these parts of my identity? What if I couldn’t do the things that I think make me…well…me? I’d like to think I could redefine myself, but it’s not that easy–especially when you’re not doing it by choice.

There are plenty of people who live well with dementia, particularly in the early stages. They may do many of the things that they used to do. They fulfill many of the roles they’ve always fulfilled. But what we miss from the outside is that they must let go of parts of themselves from the time they begin showing symptoms. A golfer can no longer golf. A cook can no longer cook. A writer can no longer write.

These may seem like small things in the big picture, but they are not. Golf, cooking, writing…these are things that make us who we are. If you’re a golfer who can no longer golf, people tell you to find a new hobby…a new way to spend your time. But you’re a golfer. And you get to grieve the loss of that part of your identity. And you get to tell people to be quiet when they keep telling you that you can find other hobbies and that not being able to golf is no big deal. It’s not just a hobby. It’s part of who you are.

The woman who was worried about forgetting her manners? The support group facilitator told her it was okay if she forgot her manners. He said that if she didn’t thank people who took care of her, it was understandable. He told her that it didn’t really matter if she interrupted people or if she chewed with her mouth full.

“It may be okay with other people if I lose my manners,” she responded. “But it is not okay with me.”

We don’t get to tell people with dementia that these potential losses don’t matter. They do matter.

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.

What You Do For Friends in Dementialand (aka What I Learned From My 5th Grade Teacher Mr. V)

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Flashback. I am in the 5th grade at Mulberry Elementary School. There is a girl in my class who I will call Mindy. Mindy has special needs. She’s very sweet but doesn’t quite fit in as hard as she tries. She’s obsessed with Iowa Hawkeye football and never misses a game on TV. One weekend, she gets to go to a game. It’s a really big deal for her.

The Monday after the game, my teacher (Mr. V as we call him) does something that I haven’t forgotten. He asks Mindy to run an errand to the school office. While she is gone, he tells us that when Mindy returns he will ask her to tell us all about the Hawkeye game.

“I know that many of you have been to lots of Hawkeye games, so it may not seem like a big deal to you, but this is a BIG deal to her,” he tells us while Mindy is out of the room. “So when she talks about it, you will be excited. It’s just what you do for a friend.”

He specifically says you will be excited. He doesn’t say you will try to be excited. He doesn’t say you will pretend to be excited. He says you will be excited. Instead of questioning whether or not a person could actually be excited just because they are told to do so, I tell myself I must be excited. I’m an obedient child and I put a lot of energy into my efforts to impress my teacher. (Yep. I was that kid.)

That was more than 25 years ago. And the lesson stuck.

I went to New York City with my friend Holly a few years ago. Holly was an art history major in college and was excited to visit the Metropolitan Museum of Art on our trip. I hate to admit this, but I appreciate art about as much as I enjoy eating cat food. My previous visits to art museums included me stomping around and pouting like a small child who had their candy stash raided…and that was when I was in my late 20’s.

But this was going to be different. I was going to be excited to go to the museum….because Holly was excited. And it’s just what you do for a friend.

Here’s the funny thing. At first, I was faking it. I was pretending to be interested. I was trying to not spoil Holly’s fun by acting like someone was sticking needles in my eyes. At some point, my fake excitement morphed into real excitement. As we left the museum, Holly bought me a large soft pretzel from a cart on the street and I had to admit it had been a pretty good afternoon.

And I wasn’t just saying that so she didn’t feel bad for subjecting me to the museum. I realized my interest in art had gone from a 2 out of 10 to maybe a 5 or 6 out of 10. (Of course, my favorite piece of art in our home is STILL the print of four dogs playing pool with a cat dartboard behind them. It’s not as tacky as it sounds, really.)

We typically think that we act more enthusiastically about something if we are more enthusiastic about it. However, I also think we become more enthusiastic about something if we act more enthusiastically. Our actions may follow our feelings, but our feelings also follow our actions.

Every month, I visit a memory care community where a woman with dementia greets me. She’s always sitting in the lobby with a Christmas fleece blanket on her lap. Every time I walk in (at least for the last six months), she exclaims, “Did you hear I have a new grandbaby?”

I don’t know this for sure, but I’d guess she says that to every single person who walks through those doors during the day. I would assume she did have a new grandbaby at some point in her past. Maybe that grandbaby is my age now. I have no idea. And it doesn’t matter.

She’s excited. That excitement is rooted in her reality. Even though she may not have a new grandbaby, I get excited to talk to her. My excitement is genuine, whether or not her grandbaby is.

A woman recently told me that her mother, who has dementia, often talks about how she won the Powerball. Of course, her mother didn’t really win the Powerball. However, the woman told me that her mother is so jazzed about winning that it makes everyone around her happy. It seems irrelevant that 2.3 million dollars isn’t coming her way. Her enthusiasm is contagious.

As the woman was leaving her mom’s nursing home room one day, a staff member said to her, “It always makes my day when your mom wins the Powerball! I hope she wins again tomorrow!”

I spend a lot of time being excited about stuff that is rooted in the reality of people who have dementia rather than rooted in my own reality. But why is their reality any less worthy of being celebrated than my reality?

A couple weeks ago, a women with dementia told me that her cat had a litter of 102 kittens. I know the woman has not been out of the nursing home for a year, and I know cats don’t have litters of kittens that large. Still, I found myself getting genuinely excited as we chatted about the kittens. I asked her to tell me more about the kittens. She said most of the them were green and they were all healthy.

“Green? Are you kidding me? They sound adorable!” I said.

“Well, it’s amazing what they do these days,” she told me, shaking her head incredulously. “People can just do it all. You never can tell what color it’s all gonna turn out.”

As I left the nursing home that day, I realized hearing about this exceedingly large, amazingly healthy, and colorful litter of kittens had made my afternoon.

When we care about someone, we get excited when they get excited. It doesn’t matter if what they are excited about isn’t really in our wheelhouse. It doesn’t matter if it’s rooted in our reality. It doesn’t even matter if it doesn’t make sense.

It’s just what you do for a friend.

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.

Pushy Awesome Friends in Dementialand

alzheimer's, caregiver, dementia, friendship, lewy body dementia, , , ,

A few weeks ago, someone made a not-very-nice comment about my blog. It’s okay. I’m over it (sort of), but I can’t say it didn’t sting. It wasn’t constructive criticism. It was mean-spirited rather than useful. I even lost some sleep, and sleeping is my favorite thing in the world. (If you know me, you know that I don’t exactly excel on little sleep.)

I had been on a roll writing my blog, but this took the wind out of my sails. I didn’t want to write anymore. I told a few of my best friends this, and they all had the same response. They didn’t tell me I should keep writing the blog. They told me I would keep writing the blog.

They didn’t entertain my reasons for wanting to stop or take a break. They didn’t want to have a long discussion about it. They just told me that I would keep writing the blog. I would keep writing because there was no other option. And so I did keep writing.

Sometimes that’s what the best of friends do. They don’t talk to you about your options. They don’t tell you what choice you should make. They just tell you what you will do and then they make sure that happens. I’m generally not a fan of pushy people, but there are times when your best friends step in and make a decision for you. It may not be what you want at the time, but it’s what you need.

I spoke at an Alzheimer’s workshop last week. I noticed two older women in my audience. They were well-dressed, attentive, and poised with pen and paper to take notes. They sat in the second row, and I liked them immediately because they laughed at my jokes. After the presentation, we struck up a conversation at the refreshment table. (As an aside, if you want to talk to me after I do a presentation, don’t go to the stage, head to the food table, especially if they have cinnamon rolls.)

One of the women, Ann, was caring for her husband with Alzheimer’s in her home. Her best friend, Carol, had insisted they come to the workshop.

“I didn’t want to come listen to you at all, honey. But this one here made me,” Ann told me as she motioned toward Carol.

I learned that Carol had read about the workshop in the paper and told Ann about it. Ann was somewhat interested, but finding someone to care for her husband would be difficult, so she told Carol it just wouldn’t work.

That’s when Carol said that they would be attending the workshop. She called her own daughter to come stay with Ann’s husband, and she called to reserve their spots at the workshop. She told Ann what time she would be picking her up. She also mentioned that she would be buying lunch after the workshop. To make a long story short, Carol is awesome. And I told her so.

“I still didn’t want to come,” Ann confided. “But I really didn’t get a say in it.”

Ann had a couple of questions as a follow-up to my presentation. We chatted for 15 to 20 minutes about her husband’s challenges with impulse control and anxiety. Carol pulled a small spiral-bound notebook out of her purse and started taking notes on our conversation. At one point, she asked for my business card in case they “needed me” in the future. I happily handed it over. I really hope they do reach out to me in the future.

I can’t stop thinking about how I wish that every caregiver had a friend like Ann had in Carol. If Ann had asked Carol if she should find someone to stay with Ann’s husband so they could go to the workshop, Ann probably would’ve said no. That’s why Carol didn’t ask. She just did it. She didn’t ask if she should call and reserve seats at the workshop. She just did it. And sometimes that’s what the best friends do. They don’t ask. They just do. Maybe it’s pushy, but maybe pushy isn’t always a bad thing.

As one of my best friends was battling cancer about a year ago, she said something that has stuck with me. She was speaking about her neighbors when she said, “They’re the type of friends who don’t ask if they can bring dinner over. They say they will be bringing dinner.” When she said that, I vowed to try to be that type of person (although I can’t cook…so maybe bringing dinner over isn’t really the absolute best way for me to help people).

Unfortunately, I find that many caregivers don’t have supportive friends like Ann does. Dementia can be isolating and take a toll on friendships. Even close friends may not know what to say or do, so they keep their distance. They think it’s better to say or do nothing than to say or do the wrong thing.

This goes for those who are diagnosed with Alzheimer’s and related dementias as well as caregivers. I once asked a woman in her early 40’s who had been diagnosed with Alzheimer’s what the biggest surprise had been. She said that it was that the friends she thought would never leave her side had left her side. She defended them, saying that she knew they were confused and scared. Even though she tried to not take it personally, it hurt.

My point here is ridiculously simple. We all need friends. Having dementia or being a caregiver for someone with dementia doesn’t change that.

And maybe friends need to stop saying, “Let me know if you need anything,” and instead say, “I thought you needed this, so I already did it.”

Finally…to my friends who told me I would keep writing my blog…thanks. I owe you guys.

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.

Limitations in Dementialand (and Comments on Why I Am Not a Nashville Recording Artist)

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When I was growing up, my parents told me I could be whatever I wanted to be. I could do whatever I wanted to do. They said that the sky was the limit. I should aim high and I could accomplish anything in the entire world.

MY PARENTS WERE LIARS.

I cannot accomplish anything in the entire world.

For instance, I’d love to tour and sing with a band. As I child, I spent a lot of time singing in front of the mirror to my favorite tapes (yes, tapes) using a remote control as a microphone. As time went on, it become apparent that my dream of singing with a band would not come true.

I have twice been accused of mocking the national anthem. In my defense, I was just singing it along with a group. However, people have actually thought I was making fun of our country because my rendition of it was so awful. Now I always lip sync the national anthem. It’s just the best way for me to show respect for our country.

Despite being voice-challenged, I love karaoke. In my early 20s, I sang karaoke with a friend at a bar in Des Moines called Miss Kitty’s. After our rendition of “Should’ve Been a Cowboy” by Toby Keith, we walked back to our table. My boyfriend at the time said to my friend, “You sounded really good.” Then he looked at me awkwardly and took a long pause. He finally said, “Elaine, you looked kinda cute up there.”

I won’t ever tour and sing with a band. There will be no record deal for me. I think I started the long journey toward acceptance of this when I hit 30, although every once in a while I relive that childhood fantasy I had to be Reba McEntire and sing “Fancy” to a packed crowd. (By the way, it was only a couple years ago that I realized “Fancy” was about prostitution. I just thought it was about a girl heading off to the big city to grow as a person.)

We tell our kids they can do whatever they want in life. We tell them that they can be whoever they want. And I really think we are all capable of being successful, but we need to pick goals that fit with our strengths. We have to know ourselves, and that means knowing what we are good at–and what we aren’t good it. We gotta figure out what we can do and what we can’t do. Success is about hard work and determination. It’s also about “fit.”

I met a wonderful woman who volunteered for many years at a hospital’s gift shop. The hospital staff loved visiting with her, and she enjoyed helping hospital visitors pick out gifts for friends and family. After being diagnosed with Alzheimer’s, she struggled to run the cash register. A few times she made errors in counting cash at the end of her shift. It was time for the volunteer coordinator to tell her that she just wasn’t able to volunteer at the gift shop anymore. It broke both of their hearts.

To her credit, the volunteer coordinator told her that she didn’t want to lose such a valuable member of their team. They had a long conversation and another plan was put in place. The woman would volunteer for the gift shop in a different way. She would knit scarves, hats, and mittens. Then her husband would deliver her work to the gift shop to be sold. All proceeds would go to the hospital’s pediatric cancer unit.

No matter how determined that woman had been to keep running the cash register at the gift shop, it just wasn’t a fit for her any longer. And, to be truthful, there may be a time in her future when knitting for charity isn’t a fit for her. It’s not a matter of strength or will. Our skills and capabilities change. That’s true for people with dementia, and it’s true for the rest of us.

The challenge is accepting those limitations and finding goals that make the most of present abilities. We all struggle to accept our limitations. In other words, sometimes we need to let go. We need to let go of what we can’t do in order to fully appreciate what we can do. And that’s not easy. There are times we need to push hard to pursue our dreams, and there are times when we need to realize that we could make more of a difference in this world if we put our talents toward a different dream. However, sometimes accepting our limitations and letting go means that we have make uncomfortable admissions to ourselves. It might mean we have to admit that we’re not good enough at biology to go to med school, that we aren’t genetically made to run a marathon in under three hours, or that our Alzheimer’s disease is progressing and there’s nothing we can do to stop this.

With dementia it may be more of a struggle to accept limitations because abilities change quickly and the disease itself may make it difficult to have insight about one’s functioning. Someone with dementia may also forget their limitations. They may forget they can’t drive or forget they no longer go to work everyday.

If I’m being honest, I sometimes forget my limitations as well. About once a year, I decided I’m going to sing karaoke. I’m reminded very quickly of why I am a college professor and not a music sensation. And it’s a good way to affirm that I’ve made some wise choices along my career path. Thank goodness I didn’t move to Nashville when I was 18 like my heart was telling me to.