Category Archives: dementia

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.

Dementia and Drugs (and Why Bighead Has a Bit More Pep As of Late)

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In late 2008, my husband and I adopted an English mastiff from our local shelter. At the time, he was already a senior citizen at the age of six. Mastiffs only live about seven to nine years, so I feel very fortunate to say Karl is still with us at approximately twelve years of age. We call him Bighead, and if you look at his picture you’ll know why. His head is freakishly huge in an adorable way. Of course, I’m biased because I’m a big fan of the old drooly gentleman.

Last week, Bighead wasn’t moving too fast. He seemed to be having just a bit more trouble getting up and down steps. In addition, I had a feeling he had both a urinary tract infection and an ear infection. Off to the vet we went. I kept my expectations realistic. After all, he is the equivalent of an 105 year old man. To tell you the truth, I was worried.

In addition to the antibiotics, the vet gave Bighead a bottle of Rimadyl, which is a non-steroidal anti-inflammatory medication for dogs that have joint pain and arthritis. I can’t say he’s acting like a puppy, but he’s got a bit more pep in his step. It doesn’t seem like as much of a struggle for him to get up and down stairs. He runs a little bit faster to go bark at his arch nemesis, Bowser the neighbor dog, in the backyard. He even got into his awkward play bow and tried to get our older cat, Teela, to play with him. That didn’t go well for Bighead.

I’m more optimistic about Bighead’s quality of life after he started Rimadyl. I know his arthritis is just as bad as it was before he started the drug. The drug isn’t reversing the aging process. I know it hasn’t really turned back the hands of time. It’s not going to extend his lifespan, but he is functioning at a slighter higher level. He’s still a twelve year old English mastiff, and I know he won’t be with us that much longer–so I enjoy every day we have with the guy. To be fair, I’ve been saying the same thing for the last four years, and he’s still here, sitting in the recliner across the room as I write this.

Rimadyl is what I call a Band-aid drug. It doesn’t really change the outcome or the disease process, but it may cover up issues and improve quality of life. It’s a figurative crutch. Obviously, I’d be happier if the drug were actually repairing his old body, but–and I’m about to use my least favorite phrase here–it is what it is.

Contrary to popular beliefs, the common drugs taken by people with dementia (e.g., Aricept, Razadyne, and Exelon) are also Band-aid drugs. These are often prescribed for people with Alzheimer’s and may also be prescribed for people with other types of dementia, like vascular or Lewy-Body. Although many people who take the drugs believe that they will slow the progression of dementia, that’s not the case.

Last fall, I spoke at an Alzheimer’s Association conference and had the pleasure of being seated at lunch with a neurologist who had just given an enlightening (but also discouraging) presentation on drugs used to treat dementia. His take-home message? The drugs don’t change the progression of the disease, but they do improve functioning for some individuals. He summed it up by saying, “I guess they’re worth a shot.” Not exactly a rousing endorsement. He did mention that, for the most part, individuals don’t have significant side effect from the drugs. Of course, there are people who I know who have experienced side effects, particularly nausea and nightmares.

I’m all about drugs that improve quality of life and treat symptoms. I am in no way saying people with dementia shouldn’t be on these commonly prescribed medications. What I am saying is that we often overestimate what they are capable of doing. They do not cure or slow the progression of Alzheimer’s or other dementias. They are classified as “supportive” medications. Sometimes the people taking these drugs and the families of these individuals don’t seem to understand this….because we haven’t told them.

When someone has dementia, brain cells die (yes, literally) and the connections among brain cells that are still alive become less active. The drugs we have cannot bring back brain cells or slow their dying process, but they can impact chemicals that are involved in carrying messages among nerve cells in the brain.

Basically, they help the damaged areas of the brain function better for some people. They may stabilize symptoms temporarily or even give the illusion that the dementia has been “reversed.” (And I stress that symptoms are not even lessened in all individuals with dementia. Most studies suggest that less than half of patients have any benefit at all. I can guide you to some research articles to support these statements upon request.)

I will also add that a higher level of cognitive functioning (or a more “active” brain), which is the goal of these medications, may not be beneficial to every individual with dementia. In some cases, medications may increase anxiety because individuals are aware enough of their situation to be frightened and disturbed. Higher cognitive functioning doesn’t always equal an improved quality of life.

Recently, a woman at one of my presentations told me–along with the rest of the audience–that her father (who had been diagnosed with early-onset Alzheimer’s last year and is only 56) was considering stopping his Aricept and smoking pot instead. I had to take a deep breath and think carefully about my response. All I could come up with was, “No comment.” Everyone laughed, and I awkwardly moved on to the next question.

That’s a post for another day. Besides, my peppy guy Bighead and I have to go outside so he can run to the fence and bark at Bowser.

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.

Here’s to Hoping We Lose Bad Memories If We End Up in Dementialand

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There are certain memories that never fail to make me smile.

In elementary school, my friend Heather and I spent a lot of time producing radio commercials. We had a tape recorder that was state-of-the-art. We wrote a script. There were sound effects. Heather’s little brother, Brian, played a supporting role. I specifically remember making commercials for vacuum cleaners. We said they “sucked” but in a good way. (See what we did there? Looking back, we were pretty clever.)

I don’t think our mothers were all that impressed with that particular commercial. In 1985, second-graders weren’t really supposed to be using the word “sucks.” We were in uncharted territory. You might call us rebels. I’m smiling just thinking about it.

Then there’s our wedding. It’s a good memory for all the reasons people typically say their wedding is a good memory, but what makes me smile the most is when I think about a specific moment when my stepfather, Dennis, was taking some pictures of my husband and me. He didn’t like the shadow that the sun was creating. My dad, who is quite tall, stepped in awkwardly right behind my stepfather with his arms arching over him–practically on top of him–to block the sun. Then there was my mom standing about ten feet away yelling directions at her ex-husband and current husband on how to work together to avoid the shadows in pictures. (As in, “Roy, step to the left and lean over Dennis a little more! Dennis, get down lower! Bend your knees!”) I am laughing as I write about it.

I also have memories that aren’t so positive. I’m not trying to portray myself as a pitiful victim, but I’ve been through some rough times. I’m not unique in this. I know you’ve probably been through rough times, too. Life isn’t all roses and unicorns, after all. I know you likely have a few images that pop up at night when you can’t sleep. You tell them to get lost, but they don’t.

They are memories I’d like to forget, but I can’t. They relate to painful times in my life. Things I saw happen that I would give anything to have not seen…or that I would give anything to have not happened at all. But that’s not an option. Just like those good memories that are imprinted in my mind, those bad memories aren’t going anywhere. I’m stuck with them.

I’d like to say those awful memories make me a stronger and better person. I’d love to tell you that they’ve forced me to grow and helped me to develop valuable new self-insights. Maybe some of that is true in a small way. Yet…really…bad memories just suck. (I can use that word now because I’m no longer in the second grade…unless Heather’s mom or my mom want to chime in here and veto it, which I would completely respect.)

Dementia can take those good memories. Dementia can take those bad memories, too.

I had to laugh uncomfortably recently when someone said to me, “The bad news is that Dad has Alzheimer’s. The good news is that he doesn’t have PTSD anymore.” It sounded like the punch line to a bad dementia joke. (Note: I’ll talk about dementia jokes in an upcoming post. I thought I had heard them all until I heard one the other day that happened to be both derogatory to people with dementia and racist, but I digress.)

If you can’t remember the traumatic event anymore, post-traumatic stress disorder (PTSD) is often relieved. This woman told me that her father had been in Vietnam. He came home and struggled with depression, fatigue, nightmares, flashbacks, and aggressive episodes. This cost him his marriage and strained his relationships with friends and family members. Then along came Alzheimer’s. As he gradually lost his memories of Vietnam, his PTSD subsided.

Certain types of dementia, such as Alzheimer’s, often work by impacting short-term memory at the start of the disease. Then you don’t remember the last year. Gradually, you lose the last 5 years, 10 years, 20 years….And if you don’t remember the last 60, maybe you see yourself as a child. You look in the mirror and don’t recognize that old person looking back at you. With Alzheimer’s and memory loss, we often use the phrase, “Last in, first out.”

Sometimes with Alzheimer’s, and even more so with some other types of dementia, the memory loss isn’t so predictable. The progression doesn’t always make sense. I once met a man with Alzheimer’s who remembered that his son had committed suicide five years earlier. However, he didn’t remember the wife that he had been married to for over thirty years or that he had been a well-respected lawyer. He couldn’t name the last four presidents.

I found it cruel that Alzheimer’s had stolen so many memories but left him with what was likely the most traumatic memory of his life. Dementia should have to take the bad memories if it’s gonna take the good ones. That only seems fair. But when it comes to dementia, what’s fair is irrelevant. Dementia, like life itself, is tremendously unfair.

If I have dementia in my future, I want to forget those life events that I can’t forget now as hard as I try. And I want to remember making commercials about vacuum cleaners that suck and how my dad and my stepfather ended up making the world’s oddest and most awkward pose in order to get the perfect wedding picture.

But dementia doesn’t let you choose.

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

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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.

Groundhog Day in Dementialand

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You wake up in the morning. You open your closet to find something to wear. You realize immediately that something is wrong. Most of the clothes in your closet are unfamiliar. They look like women’s clothes, but you’ve never seen them before. So you call your daughter, and you are angry. You know she has a smaller house and not a lot of closet space. You’re pretty sure she’s storing her clothes at your house without asking you. You tell her she needs to come over immediately and pick up the clothes. You just don’t have room for her stuff at your house. 

Your daughter denies that she knows anything about the clothes. In fact, she says you bought those clothes yourself. You would know if you bought those clothes, obviously, so an argument erupts. Your daughter drives over and insists you try on the clothes. She wants to prove to you that they fit, that they are your clothes. You think this is ridiculous, so you refuse. She keeps holding up the clothes in front of you to show they are your size, but you slap them away. She leaves in a huff. You don’t understand why she just can’t take her clothes back to her own house. 

What you don’t realize is that this happens every morning. Your daughter knows to expect the call between 7 and 7:30 am. She knows she will get accused of putting clothes in your closet. She’s tempted to not answer the phone, but she always does. She tries her best to be rational and reason with you, but it never seems to work. She thinks that if she can convince you to put on the clothes you will realize that they fit you and that you bought them. However, the plan never seems to work. She’s sick of the accusations. Every morning she storms out and sits at work all day feeling guilty for losing her patience.

She wonders if you should live with her, but she just doesn’t know if she can handle it. She worries that her relationship with her husband would suffer and her kids wouldn’t understand what was going on with grandma. She thinks about an assisted living, but doesn’t know how to approach the subject with you and has no idea about your financial situation. She knows you wouldn’t go willingly. After all, you don’t see why you can’t live alone. The neighbors are stealing from your garage and the utility company didn’t process your last payment even though you sent the check, but everybody has some bad luck now and then. It’s tough because your husband has been gone for quite a while now. You’re not certain where he is, but you’re sure he’ll be back soon, so obviously you can’t sell the house.

You’re doing fine. You’re not sure why your kids keep getting so upset with you. You don’t know why your grandkids don’t stop by like they used to after school. And you can’t figure out why you haven’t been asked to babysit lately. You used to help the ladies at church make food for funeral luncheons, but there was recently a misunderstanding where you were supposed to bring the pies but no one told you. That resulted in an argument, and they haven’t asked you to help since. Maybe they realized they were wrong and are embarrassed.

Your daughter wants to have holidays at her house, although you’ve always hosted them at yours. She says you need a break, although you really enjoyed putting together the menu and cooking for your whole family. You told her to call everyone and tell them you’d do Christmas this year, but she didn’t. You were pretty insulted. You’re a really good cook. Everyone who ate your potato salad last year got sick, but that was because the mayonnaise you bought from Super Walmart was expired when you bought it. 

Tomorrow you will wake up again and look in your closet again. You will realize again that these aren’t your clothes. You will call your daughter. She will take a deep breath and promise herself she will be more patient on this day. She’ll stop by on the way to work, and she’ll leave once again in the midst of a tense argument. Then she will feel guilty for her lack of patience. She will do the same internet search for assisted livings that she does everyday at her desk. 

I met the daughter in this scenario recently. She told me that she feels like she’s in the Bill Murray movie “Groundhog Day.” She said she just can’t do it anymore, but she doesn’t know how not to do it. She feels powerless. It’s the same cycle, the same pattern. It will change, I reassured her. Except it’s not really reassurance because I can’t say it will change for the better.