Dementia and the Gift

I get a lot of gifts from people with dementia. And I’m not talking about abstract and intangible gifts. I’m talking about actual stuff.

Sometimes they are gifts “stolen” from another resident at a memory care community. Sometimes they are pulled directly from a dirty clothes hamper. Sometimes they are things that aren’t really useful to me–like a used lipstick.

I have been given family heirlooms only to return them to family members at a later date. People have insisted I accept horse figurines, gently used toothbrushes, expensive and inexpensive jewelry, cat beds, and rocks. People color me pictures. Once someone gave me a photo of their grandbaby so I “wouldn’t forget what babies look like since no one has them nowadays.”

I get a lot of gifts from people with dementia. And I’m not talking about abstract and intangible gifts. I’m talking about actual stuff.

Sometimes they are gifts “stolen” from another resident at a memory care community. Sometimes they are pulled directly from a dirty clothes hamper. Sometimes they are things that aren’t really useful to me–like a used lipstick.

I have been given family heirlooms only to return them to family members at a later date. People have insisted I accept horse figurines, gently used toothbrushes, expensive and inexpensive jewelry, cat beds, and rocks. People color me pictures. Once someone gave me a photo of their grandbaby so I “wouldn’t forget what babies look like since no one has them nowadays.”

My mom worked in activities at a nursing home when I was a kid, and I spent a lot of time running the halls (literally). Many residents kept candy in their rooms to offer to guests. Mostly those butterscotch discs. Sometimes root beer barrels. Often the candy was old–really old. I always took it anyway. I’d put it in my pocket and say I was saving it for later. Spoiler alert: I didn’t always eat the candy.

Once an old guy with dementia gave me his John Deere hat because I said I liked the color green. Later, I gave it to my mom, who put it back in his room. Ironically, those John Deere hats are really in with the hipsters nowadays. Maybe I should have kept it.

I have heard from families who are frustrated that when they give their loved one with dementia a gift they often find it was been re-gifted. Someone I know bought her mother a colorful holiday wreath for her nursing home door and found it hanging on the door of another resident. She thought the other resident might have nabbed it…but realized later that her mother had gleefully presented it to her as a gift.

I was talking recently with a woman with younger-onset Alzheimer’s. She confided in me that the hardest part of having dementia (for her) was the feeling that she was no longer able to give. She hated that she couldn’t contribute to her family and friends the way she used to. She struggled with the idea that she being taken care of and had little to offer those who gave her so much.

As human beings, we want to give. Despite all the frightening and disheartening stuff going on in this world, I believe that most people are good, kind, and have a need to help others. Human beings have a need to make a meaningful difference in the lives of fellow human beings. Dementia can make it harder to meet that need.

To be clear, people with dementia make valuable contributions in this world. On a personal note, my interactions with friends who have dementia are some of the richest and most satisfying interactions I have. When people with dementia say they aren’t making a positive difference, I want to argue with them….but I have to allow them to mourn because they are not able to contribute in the way that they used…and that’s tough.

I know a woman whose family has told her that she won’t be making Thanksgiving dinner for a mega-clan of family and friends this year. In the past, she’s had up to 30 people at her house for the meal. It seems obvious to her family that her dementia has progressed to a point where she’s just not capable of this anymore. She is heartbroken.

Who is she if she can’t feed a crowd for the holidays? What good is a grandma who can’t pull together a Thanksgiving dinner? The ability to give that gift has been taken from her. They’ve told her they will buy the ingredients for her to make the jello salad (if you’re not a Midwesterner, jello salad is marshmallows and random canned fruit suspended in jello–and yes, we call it a salad).

As dementia progresses, people can’t give in the manner that they used to. And that’s hard. When they want to make a difference…when they want to make people smile…they look around for a gift to give.

One man unplugged the alarm clock in his nursing home room and handed it to me. He said, “Here. I know that you really need this.” He was so emphatic that I was pretty sure I did need a used alarm clock.

A woman once insisted I take her walker. I used it to walk out of her room–saying I was so grateful because I had recently hurt my knee (which wasn’t a lie). When she was napping later, a staff member put it beside her bed.

I used to argue when someone with dementia tried to give me a gift.

“Oh, I can’t take that. You need that,” I’d say.

What I’ve learned is that my acceptance of their gift meets a need for them. It meets their need to play the role of giver–a role that dementia can really diminish.

My briefcase is full of pages torn from coloring books. (“How old are your kids?” someone at a conference recently asked me when some fell out as I grabbed my laptop. “I don’t have any,” I said with a smile. I left it at that.)

I have to check my pockets before I put clothes in the washer so I don’t wash those butterscotch discs. Fortunately, it doesn’t ruin your clothes if you do wash them. Tootsie rolls, however, are a different story.

I have a simple rule for those of you who spend time with people who have dementia–Accept the gift. Always accept the gift.

Their need to offer it reminds me that human beings have a need to give that persists even in challenging circumstances, and that makes me think that maybe the world isn’t a horrible, awful place.

 

 

So You Messed Up in Dementialand

If you’re a caregiver, I hope that your mistakes are small and fixable (and maybe that your loved one with dementia forgets about them). And I hope that you move on quickly because guilt and self-blame are a waste of time.

Caregiving is unpredictable. It’s a different experience for everyone. You have unique challenges and joys. Just like dementia looks different on everyone….caregiving looks different on everyone.

If you’re a caregiver, there’s one thing I can guarantee you share with all other caregivers. And that is the inevitable, undeniable, and incredibly human reality that you (yes, I am talking to you) are going to mess up.

Let’s face it. You have made mistakes in all areas of your life. You’ve messed up in your family and romantic relationships. You’ve messed up at work. You’ve messed up in cooking, driving, managing your finances…you name it. If I haven’t messed up something at least once before 9 am, I’m probably still in bed. And then I guess I did mess something up–because I overslept.

I’ve not saying all of these mistakes have been life-changing disasters. Some of them have been issues that can be resolved in a minutes. Some of them, unfortunately, have been issues that aren’t fixable.

Why would caregiving be any different?

You say something to your loved one with dementia that—you realize later—caused them pain.

You help your loved one take a shower, and they fall because you turned your back for one second.

You think it’s a great idea to take them on a little vacation…until you realize that this vacation has taken them out of their routine and increased their anxiety and confusion.

Maybe you decide to pursue hospice, and you regret that you didn’t do it four months sooner.

Or you respond in a harsh tone because you cannot deal with answering the same question for the billionth time. (If you say you haven’t done this, you have much more patience than the average Joe or Joanne…or you are, more likely, a liar.)

Someone I know once gave her husband the dog’s thyroid medication. She called the pharmacy in a panic. When the pharmacist didn’t return her call, she called her vet, who assured her everything would be okay. (“Call me if he starts barking,” he said.) Her husband was no worse for the wear, but she is still horrified that she could make such a scary mistake.

I used to tell caregivers they’d make all the right decisions. Maybe it was reassuring—but it wasn’t true.

All of the love in the world doesn’t keep you from messing up. Couldn’t you say the same about parenting? Or marriage?

But here’s the important message:

You gotta let it go and move on.

I could tell you not to blame yourself because you’re a human being. I could say you shouldn’t be too hard on yourself because you have a lot of on your plate. As caregivers, we beat ourselves up a lot.

If you don’t think you owe it to yourself to forgive these errors, you owe it to the person with dementia. You see, it takes a lot of energy to beat yourself up. And you don’t have that energy to spare.

I no longer tell caregivers that they will make all the right decisions. I tell them to accept that they will make some wrong ones.

If you’re a caregiver, I hope that your mistakes are small and fixable (and maybe that your loved one with dementia forgets about them). And I hope that you move on quickly because guilt and self-blame are a waste of time.

So…head up, stay strong, let it go, move on.

(I read that on Pinterest.)

Why We Should Keep Talking About Dementia Even if Things Get Weird

At the end of a recent presentation, a guy asked me a question. It was a great question–kind of like a huge softball making its way to the plate so I could hit it out out of the park. (Not that I have any idea what it feel like to hit a softball out of a park. When I play slow pitch I’m just lucky to make contact.)

He asked, “What’s one thing about dementia that you want people to know that they don’t know?”

Maybe I was intimidated by having to narrow my thoughts down to one thing. Maybe I was just not on my game. But my response was not a home run. It wasn’t even a ground rule double.

“It’s just that so many are impacted….” I started. Then I went off on some rambling journey with a bunch of statistics that left my poor audience with glazed eyes and an urge to sneak out the back door. (As a speaker, I can tell when someone is eyeing a door and wondering if emergency alarms will sound if they open it.)

My response was not impactful. It was not engaging. It was just pretty lame. Opportunity blown.

I’ve given it some thought, and I want another chance…except I can’t name one thing. So here are 10 things I want people to know about dementia:

  1. Dementia itself is not a disease. It’s a set of symptoms caused by diseases like Alzheimer’s, Lewy-Body dementia, Huntington’s disease, Korsakoff syndrome, and frontotemporal dementia. (Don’t be offended if I left out your disease–there are dozens). People should not be “diagnosed” with dementia because it is not a diagnosis any more than a cough is a diagnosis.
  2. Memory loss is a part of dementia, but it is only part of a constellation of symptoms including (but not limited to) impaired judgement, speech problems, sleep issues, personality changes, paranoia, hallucinations, perceptual issues, irritability, and anxiousness. Memory loss is usually one of the first symptoms noticed if the dementia is caused by Alzheimer’s. However, dementia is much bigger than just memory loss.
  3. Some people who have dementia know they have dementia. Some people who have dementia do not know they have dementia. Many people know something just isn’t quite right but don’t have the cognitive ability and insight to be able to understand their condition.
  4. These diseases that causes dementia….they also cause death. The general public has not yet figured out that dementia is progressive and fatal. And it doesn’t only kill old people. People die from dementia in their 40s and 50s.
  5. Most people with dementia live in the community–sometimes alone, sometimes with their spouses, sometimes with their families. We tend to think most people with dementia live in nursing homes, but they tend to move to nursing homes only at the end of a marathon disease process.
  6. Having dementia is hard work. The dementia brain has to work incredibly hard to to process information and complete what we consider to be routine tasks. Sometimes we think people with dementia just aren’t trying…or that they’ve given up. Nothing could be further from the truth.
  7. When someone with dementia is aggressive or cruel, you can make the assumption this behavior is a result of fear. It is terrifying to live in a world that doesn’t make sense.
  8. Urinary tract infections are common among those with dementia. If you notice dramatic behavioral changes overnight, check the urine. It is not unusual for someone with dementia to die from a series of events that begins with a urinary tract infection.
  9. Drugs cannot stop or slow the progress of dementia. We do have medications that may help with the symptoms, but they do not change the underlying disease process.
  10. Yes, it’s okay if you’re not completely honest with people who have dementia. We call this therapeutic fibbing, and seriously–IT’S FINE! When Grandma asks where Grandpa (who has been deceased for decades) is, it is okay to say that he’s work, Wal-Mart, or bowling with the guys–wherever he liked to spend his time while he was alive.

If you are one of my regular readers, you are likely pretty disappointed by this post. I mean, you know all this stuff. You probably know it better than I do.

Here is my challenge for you….whether you are living with dementia, a family member or friend of someone living with dementia, or a professional who works in the field.

Talk about dementia. Talk about it without embarrassment or shame. If it makes other people uncomfortable, keep talking. The only way we destroy the stigma that still exists is to push right through it.

Part of my job is to educate people about dementia–but people who are impacted by dementia are much better educators than I am. The conversations you have in your daily life with friends, acquaintances, and coworkers can be more impactful than any formal presentation I am invited to do. Many of you aren’t ready to give a speech to a hundred people, but explaining to a waiter why it’s important to seat your mom with Alzheimer’s in a quieter area of the restaurant—that’s education. Explaining to a hairstylist that Grandma is sometimes confused by mirrors, and it’s best to position her so she can’t see herself in the mirror–that’s education. And that’s what we need.

To my friends living with dementia….the next time someone says, “How are you today?”, remember that you don’t have to say, “Fine.” You are allowed to say, “I’ve had a rough few days.” And you are allowed to explain why. If it’s an awkward conversation, that’s okay. Embrace that awkwardness. Don’t be afraid that your health issues will make someone uncomfortable. Keep talking.

To my friends who are care partners…the next time someone says “How are you today?”, remember that you don’t have to say, “I’m doing okay” if you’re not. You are allowed to tell them that caring for someone with dementia is challenging. You are allowed to tell them that you haven’t slept much lately. They might be taken aback–because no one expects a truthful answer to “How are you today?”–but throw it out there anyway.

Do I promise you are going to get helpful responses? Nope. Do I assure you that your friends and coworkers will impress you with their caring and thoughtful reactions? Not at all. I challenge you to keep talking anyway. It’s only by making dementia a topic of conversation that we put ourselves in a position to educate the general public.

And I need your help with that.

 

 

 

 

Being Right, Being Wrong, and Doing Your Best in Dementialand

Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern.

Let me tell you a story. This story does not have prescribed lesson. And I’m not going to tell you who is right and who is wrong—because I really don’t know.

Melissa (not her real name) was a college student in our program several years ago. She was doing a service-learning project at a local memory care community. One of her tasks, as assigned by staff, was to accompany Edie (spoiler alert: also not her real name) to the beauty shop.

Edie was a woman with Alzheimer’s disease. I did not realize it at the time, but her deceased husband had been a wealthy entrepreneur in our community. Throughout her life, she hung out with movers and shakers in town. She and her husband were generous with both their time and money. They were respected and well-connected.

All I knew at the time was that Edie hated going to the beauty shop that was part of her memory care community.

She didn’t understand why this woman she didn’t recognize was messing with her head. She didn’t get why someone was holding a pair scissors (which she perceived as knives) to her head. And she repeatedly told the woman to “F*** off and put down those knives!”

The hairstylist wasn’t offended. Working in this environment meant learning to roll with the punches. The bigger issue was that, despite the hairstylist’s best intentions, Edie would get more and more agitated the longer she sat in the chair. Sometimes she’d curse. Sometimes she’d cry. Occasionally, she would even shake.

And that’s where Melissa came in. She would be responsible for comforting Edie and “managing” her visits to the stylist. It wasn’t just a monthly cut. It was a visit every Friday–sometimes color, sometimes a perm, sometimes a trim. And her family also had her nails done regularly, which was almost as anxiety-provoking. Melissa was a reassuring (if not familiar) face in the midst of a terrifying experience. Even though Edie didn’t seem to remember Melissa, they somehow connected.

After a couple months of this, Melissa showed up in my office. I’ve had some angry students in my office over the past 10 years, but I think she wins the prize for the angriest. Melissa couldn’t understand why Edie’s family was insisting that she spend so much time at the salon when the salon was “hell” for Edie.

I didn’t know either. And, at the time, I was 100% Team Melissa. I could see no excuse for putting Edie through such trauma.

I encouraged Melissa to see if she might be able to talk to Edie’s family. I assumed that if the family understood the extent of how stressed Edie was by getting her hair and nails done, they would forget the whole thing–or at least minimize her visits. Maybe my suggestion that Melissa talk to Edie’s family was a good one…maybe it wasn’t.

Melissa took my advice. She called Edie’s daughter, who explained–not so calmly–that she had promised her mother that she would make sure she would always be “done up” and “looking like herself” for visitors. The daughter also told Melissa that Edie had spent a lot of time maintaining her looks. Her mantra had been “look good, feel good.” Also, she pointed out, Edie may not like the visits to the salon, but she’d be horrified if she looked in the mirror and didn’t look like Edie. That, the daughter said, would throw her into a panic.

In short, Edie’s daughter was not thrilled a college student had called her out on her decision-making.

“You don’t know what this is like, so keep your thoughts to yourself,” the daughter said.

Melissa responded, “And you don’t know what it’s like for her at the salon.”

The daughter made a point to Melissa that she was keeping a promise to her mother, and that this promise was based on her mother’s worry of looking like a “raggedy old woman” in a nursing home. She would never, never look like a “raggedy old woman.”

The conversation escalated into a full-fledged argument. Melissa then left a letter for the daughter in Edie’s room. I don’t know what the letter said, but it did nothing to improve their relations.

Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern.

I wasn’t sure if I should insert myself into the situation. After all, I was Melissa’s supervisor for her project at the memory care community. In the end, I let it play out without my intervention. If I had it to do over again, I might have made a different choice. I could’ve made things better. Of course, there’s a good chance I could’ve made things worse. I mean, I can always make a situation worse.

At the request of Edie’s family, Melissa was told she was no longer going to be attending salon visits with Edie. Devastated at the news, Melissa worried about the anxiety Edie would be experiencing while getting her hair and nails done–without her.

A few months later, I wrote Melissa a letter of recommendation for a graduate program. It was a positive letter. I described her as caring and willing to be a strong advocate for vulnerable populations….or something vague like that. What I should have said is that she went to bat for someone who couldn’t go to bat for herself. Was she right to be so judgmental of Edie’s family? Did she handle it in the best way? I don’t know. However, I respect that she was willing to stand up when she felt someone was being mistreated. We need more people like Melissa.

As for Edie’s daughter…I respect her as well. She was keeping a promise to her mother, and I can’t judge her for that. Her commitment to reflecting the priorities her mother showed throughout her life was admirable.

I tend to think in black and white. I want someone to be right, and someone to be wrong. That makes the world simpler.

Yet…sometimes nobody’s really wrong. Sometimes we are all just people doing the best we can.

Melissa was doing the best that she could for Edie. Edie’s daughter was doing the best that she could for Edie.

It wasn’t long until Edie passed away. She fell at the memory care community and never really recovered. I saw her obituary in the paper. The photo looked relatively recent, and she was a beautiful woman. I remember wondering if she wore sunscreen daily, and I hoped that I would look as good when I was in my 80s.

I hadn’t talked to Melissa in a while, but she emailed me. She wanted to me know if she should go to Edie’s funeral. She really wanted to…but she just wasn’t sure if she should.

I told her no. I told her not to go to the funeral. I thought seeing Melissa at the funeral might put the family in an uncomfortable situation. I don’t know if I was right or wrong, but I was doing the best I could for the family–and for Melissa.

This was about eight years ago. I’ve thought a lot about my role in the conflict between two women who were doing the best that they could. Maybe I could have done…differently.

But I know Melissa and Edie’s daughter were doing their best, and I have to understand that I was doing my best as well.

Sometimes everyone is doing their best, but things don’t turn out the best.

 

 

 

 

Dementia and the Wedding

Your cousin is getting married. Grandma loves weddings. In fact, she used to do all her friends’ hair when they would get married. She’s always adored family gatherings—the bigger, the better.

You plan to go to the nursing home, help her get dressed, assist her with makeup and hair, drive her three hours to the church, hang out with her at the reception, and stay with her at a hotel the evening after the event. You’ll drive home the next day after a gift-opening brunch.

That’s been the plan for months.

But Grandma’s Alzheimer’s seems to have progressed. And this just seems like…a lot.

You think about the time a few weeks ago that you took her out for pizza at her favorite Italian place. She was anxious the entire time. She asked where he husband was—although he’s been dead for a decade. She got up to use the restroom. Ten minutes later you realized she had gotten confused and left the building. When the food finally came, you decided to just have them box it up so you could take it back to the nursing home. Epic fail.

You remember Christmas. You picked her up at the nursing home at 8 am. She was looking perky in her Christmas sweater, but the information about the plans for the day didn’t seem to stick. She kept asking, “Don’t you need to get back to the office, honey? You’re gonna get yourself fired.”

The weather was by no means a blizzard—but a light dusting of snow threw Grandma for a loop. “I sure hope we don’t have to sleep in this car,” she kept saying worriedly on the way to the family Christmas party. “Do we have sleeping bags in the bag? Do you have Triple A, honey?”

Once there, the commotion of Christmas movies, kids playing, and presents being ripped open was just…too much. The look on her face was one of panic, but when you suggested taking her back to the nursing home, your family said she was “fine.” You felt they were more concerned about the guilt they would feel if Grandma wasn’t there for Christmas dinner than the well-being of Grandma, but you kept your mouth shut and Grandma stuck it out for dinner. She didn’t eat anything because she said her stomach was “too excited.” As someone who doesn’t eat when they feel anxious, you sympathized with Grandma as she stared warily at her turkey.

The more you think about it, the more you realize that taking Grandma to this wedding might be…too much. You mention this to a few other family members. They are appalled. They cannot believe that you would be so selfish. How could you consider leaving Grandma at the nursing home during such a special family event? Don’t you know how much she enjoys celebrating the milestones of her grandchildren? How could you do this to her? And your sister actually made a comment about how you were putting your own enjoyment of the wedding over the opportunity to allow Grandma to be a part of a family event. (Of course, your sister had not volunteered to help Grandma attend the wedding…she was a bridesmaid so that wasn’t a possibility.)

You mention that you brought her to the bridal shower—and she seemed to enjoy that for a while. Then she got a bit overwhelmed and said to her sister-in-law, “I apologize for crashing this party. I’m just sick that I don’t seem to know anyone here.” When her sister-in-law explained she knew everyone at the party, she said, “I think you must have be mixed up with another woman. I need to find a bus to take me home.” As the shower wraps up, you find her crying in the bathroom because she doesn’t know how to call a taxi.

Nonetheless, your family says that’s she Grandma, after all, and Grandma needs to be at this wedding. You stop arguing and agree that she will be at the wedding.

When you pick her up at the nursing home, the staff already has her in her best dress. You take a few minutes to add some makeup and curl her hair. You smile because she looks beautiful. She looks in the mirror at herself and said, “That woman is looking sharp.” You aren’t sure if she is referring to herself in the third person or doesn’t recognize herself. You’re not sure you want to know.

When she gets a bit disoriented, you keep reminding her where you are headed. You finally decide to stop telling her you’re going to a wedding because you realize this sends her into a state of panic—since she doesn’t have a gift to give the bride and groom. (You should’ve known this would bother her and kick yourself for not wrapping up something for her to give the couple.) Arriving at the wedding just before it starts, you sit with her in the front of the church. She keeps saying she has a great seat for not even having a ticket. It becomes apparent that most of the people in the church, although they are close friends and family, are not familiar to Grandma on this particular day.

When your cousin walks down the aisle in her exquisite wedding dress, Grandma turns to you and says in a loud voice, “She’s sooo beautiful. I wonder who she is.” A distant relative sitting a few rows behind you chuckles uncomfortably.

The wedding goes okay…Grandma seems to think she is at a theatrical performance rather than a wedding, but she enjoys commenting on the dresses in what could be described as a loud whisper. When the officiant asks if anyone knows of a reason why the couple should not be united in marriage, Grandma shouts, “No! They should get married!” Some people laugh; others looks horrified.

Later your mother will make a comment about how you could have done a better job “babysitting” Grandma during the ceremony. You find the term “babysitting” insulting to both you and Grandma—and to people with dementia, in general. You just nod and say you’ll do better next time. It’s an easy promise to make because you don’t anticipate that there will be a next time.

When everyone is mingling at the church after the ceremony, Grandma is confused but pleasant. She keeps telling relatives, “I don’t think we’ve met, but you just seem so nice.” You get her back in the car and are ready to drive to the hotel where the reception will be held.

Grandma says, “That was a fun show, but I’ll be glad to get home.” You tell her that you aren’t headed home yet. Rather, you are going to a reception to celebrate the marriage. She gets quiet for a few moments, and then she begins to cry. You ask her why she’s crying, but she’s not able to tell you.

“Grandma,” you ask, “Do you just want to be done for the day?” She nods. You start the three hour drive back to the nursing home.

You call a few family members. They are upset with you. They think she would have been fine when she arrived at the reception. They say that Grandma would never want to miss any part of the wedding of any of her grandkids, no matter the circumstances. They point out that there’s still time to turn the car around and take her to the reception. You don’t turn the car around.

In the passenger seat, Grandma sits quietly. Occasional tears roll down her cheeks. You want to know why, but asking her to explain her sadness only seems to compound her frustration. You turn on a country radio station because you know it’s her favorite. You count the miles until you are back at the nursing home. You keep thinking about how you’re not going to get your money back on that hotel room. (And despite a few phone calls, you don’t. Apparently hotel staff isn’t sympathetic to changes in plans due to dementia.)

When you drop Grandma off at the nursing home, she says, “This was quite a day. I hope the tickets to that show weren’t too expensive. Why don’t you take some money off my dresser, honey?” You pretend to take a few coins. You feel terrible about how you can’t wait to leave the nursing home and drive home in silence. No country music (which you hate). No random sobs from Grandma (which make you feel like crap). You feel an obligation to go to the gift-opening brunch in the morning, but you won’t. You’re tired, and you’re pretty annoyed with your family.

As you leave the nursing home, you see your family texted photos of the reception. Most of them have a caption that reads “Miss you and Grandma!” or something similar. Your least favorite is a photo of the entire family (excluding you and Grandma) with a comment from your sister that says “Wish you had decided to bring Grandma so EVERYONE could be here!” You swear you are going to give your sister the silent treatment over this, but you don’t. You hate yourself for not being more assertive.

At the end of the day, you feel guilt. Guilt for not coming through for your family. They wanted Grandma to be a part of all the wedding activities, but you couldn’t make it happen. A bigger sense of guilt comes from knowing that you put Grandma in a position that was anxiety-inducing for her.

Seeing her tears roll down her cheeks on the way home made you wonder if you should’ve listened to your gut and realized taking on the wedding was just…too much. You don’t know if you made the right call. She had some moments of joy, even if she didn’t recognize the bride as her own granddaughter. Maybe taking her to the wedding was the right thing to do. Then you think of the tears rolling down her cheeks on the ride home…It’s going to take a while to get that image out of your head.

You don’t know if you did the right thing. You think your family is still mad at you. And, really, you are mad at you. You are mad at you for not listening to you. You knew this plan was unrealistic. You didn’t have the nerve to tell your family that you spend the most time with Grandma and know her the best. You didn’t have the nerve to tell them that you should get to make the call on whether she was up for the wedding.

But you go to visit Grandma tomorrow, and she’s not mad at you. She’s back to her “normal.” You have the same conversation about the weather and your cat that you have most days.

When you mention going to the wedding yesterday, she seems to have no recollection of it. You ask about the show where they women wore the pretty dresses. She says, with a smile, that she hasn’t been to a show in decades.

When you leave, she tells you she loves you. You aren’t quite sure she knows who you are, but you never doubt that she knows exactly what she means when she says she loves you.

(Thank you to the woman who shared this story with me and allowed me to take my own liberties in creating this piece. She didn’t want her name used because she worries her family members would be upset if they came across the story.)

 

 

Positive Things in Dementialand

There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.)

Dear Friends,

I don’t know how you’re feeling lately, but the world has me a bit deflated. Hurricanes and other natural disasters. Mass shootings. Arguments about the national anthem. I could go on, but unless you live under a rock, you can probably complete your own list.

So here I am…searching for a way to be positive. Maybe you are in the same boat.

Today I’m all about the positive. Dementia itself certainly isn’t a blessing, but my journey in this field has brought me many heartfelt moments, much joy, and a lot of laughter. I need to take a moment to focus on those blessings.

Let me start here.

Last Saturday I was the emcee for our local Walk to End Alzheimer’s. Beautiful day. Great turnout. Lots of money raised. To me, one of the most impactful parts of the morning was seeing the number of people with Alzheimer’s who came out to be a part of the event. It’s not always easy for people with dementia to deal with the crowds at a walk with over 600 participants.

They do it anyway.

A gentleman with Alzheimer’s even took the mic to talk about his experiences. I struggled a bit with the echo of speaking from a microphone on the pitcher’s mound of a minor league ballpark. This guy put me to shame. His heartfelt speech left me in awe.

I’m extremely grateful for his willingness to speak. People with dementia and their families have been silenced too long. I am seeing a huge increase in the number of people who have dementia and are willing to step forward and participate in advocacy. Sure, it’d be easier to stay home and live life, but more people are choosing to put themselves out there after diagnosis and not be silenced. They do this not because their advocacy work will result in a cure that will benefit them. They know it won’t. They challenge themselves to make a difference for future generations.

To those of you who have dementia and tell others about your experiences (whether it’s on Facebook, through a blog, at a fundraising or legislative event, or sitting with friends at a coffee shop), you are awesome. Thank you for what you have taught me. I understand that I don’t know what you’re going through. Keep telling me. I’ll never fully get it—unless I have dementia in my future, but learning about your experiences makes me a more effective professional…and a better person.

Until we find a cure or prevention method, I will brag about some of the college students in our gerontology program who want to make a difference in the lives of those with dementia. Last week my online students had to watch a documentary that focused on elder abuse. I received an email at 11:00 pm last Friday night from a student who apologized for emailing me so late but really wanted me to know how disgusted she was by the elder abuse documented in the film. She said she wasn’t sure if she was going to be able to sleep because of the images that she couldn’t get out of her head. And she thanked me for exposing her to this social injustice. The documentary had reinforced that she was headed into the right field. (FYI–If you are a college student who wants to make a professor’s Friday night, thank them for giving you an assignment.)

If you worry about this terrible self-absorbed Millennials generation and fear for our future, stop. Sure, some young people have misguided priorities and don’t care about anyone except themselves. This is not unique to Millennials. (Haven’t we always felt like the current generation of 18-24 years olds was going to ruin the world—no matter what year it was?) Please know that I have college students who care about older adults and want to spend their careers making a meaningful difference in the field of gerontology.

One of our gerontology majors is currently living at a local assisted living facility as part of a Students in Residence program. He adores the residents, and they adore him. I wish you could see how this student lights up when he talks about spending time with his neighbors at the assisting living. He sees living there as a privilege, and he’s found the sense of purpose in life that he’s been missing. Forget the generation gap. We’re all just people. Some of us have just been here longer.

One of the greatest sources of encouragement I have in my life is individuals living with dementia. I know that dementia can make people disagreeable and even aggressive, but the majority of my interaction with people who have dementia is overwhelmingly positive. To be fair, I’m not the person who must insist individuals take a bath when they don’t want to and take medication they think they don’t need. When I spend time with people, the purpose is to spend time with people.

There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.)

In fact, I was recently at a nursing home where two women with Alzheimer’s sat by the nurses’ station holding hands. An employee explained that one was a mom of six with a grade school education and the other was a never married lawyer who broke gender barriers by being the first female attorney in her area. Day in and day out, they sat together holding hands and exchanging smiles. They never talked to each other (or to anyone else, for that matter), but were best friends nonetheless. I wondered if they would’ve been friends 40 years ago. They had little in common. Somehow, at this point in life, they brought each other comfort. I’m not sure I know of a more genuine friendship. Life has this funny way of bringing people together.

People with dementia tell me that I’m pretty, that I have a nice smile, and that they like my haircut. If I wear heels, I can be sure somebody is going to comment on my fancy shoes. A while back, a woman living at a memory care community literally chased me down the hall yelling, “You’re so good at your job, honey!” It took her comment to heart, even though I know she had no idea what I did for a living. I’m not discriminating about accepting compliments. In fact, I went back to the office with a little extra swagger.

They don’t care if there are three baskets of laundry in my laundry room that I haven’t had time to put away (or maybe I have had time to put them away but am just lazy). They don’t ask about that report at work that’s due in a week that I haven’t started yet. People seem to think I’m some kind of saint for spending time with people who have dementia. Au contraire. I feel like I’m tricking the world…my friends with dementia are good to me.

Every once in a while there is a comment that’s inappropriate, but that’s a rarity. A while back someone mentioned that I had gained weight. I wasn’t offended…it was a true statement delivered purely as an observation with no judgment attached. I was actually rather impressed a guy who couldn’t remember his wife’s name remembered me well enough to identify I was carrying an extra ten pounds. Good for him.

I turn 40 this week. To be clear, this is not one of the reasons I’m struggling to remain positive lately. I’m fortunate to be healthy and live an imperfect but good life. Complaining about turning 40 would be disrespectful to all the people I’ve known who never made it to 40. Last week I walked into an adult day center that I visit and found that they had made me an entire stack of homemade birthday cards. Is there anything better than a homemade card? The only problem is that there isn’t room for all of the cards of my fridge.

Finally, I am grateful for those of you who regularly read my blog. There is something that is still a bit scary about putting myself out there. Are people going to think this idea is stupid? What if they think I’m trying too hard to be funny? Worse yet, what if I accidentally say something that is misunderstood and offends my readers? I’m less confident than I sometimes seem. Thank you to those who subscribe and reach out to me with positive comments. I’d like to say I’m not dependent on the approval of others, but I would never have kept writing if it weren’t for you.

If you’ve read to this point, I thank for indulging me and should let you get on with your day. I’ve realized this blog post wasn’t really for you. It was for me. And I feel a little better.

As my mom once commented, “This world is messed up. But I’m happy to be here.”

I’m ready to ring in my 40’s.

XOXOXO,

Elaine

Nursing Homes and Guilt Traps in Dementialand

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

If your loved one is living in a nursing home and this makes you feel like an awful person, STOP. Just stop. You are not an awful person. You are a human being who is doing the best that they can.

Let’s face it. We don’t know many people who say, “I hope someday I get to live in a nursing home.” Sure, some nursing homes are better than others. Yet, even the best nursing homes are not home—even if we allow people to move in their own furniture and plaster family pictures everywhere. Bringing a recliner from home doesn’t make a place home.

If you’ve heard someone say, “I could never place my loved one in a nursing home,” and it broke your heart a little bit when you pictured your dad in his nursing home room….please know that this person has not experienced what you have. They’ve never been at a hospital when a social worker told them that their mother absolutely, positively could not go back home but needed to be out of the hospital within 24 hours. They’ve never had to have a talk with their dad about how the money the family had pooled for in-home care was depleted, and there was no way for him to continue living in his own home. They have never been in a position where a nursing home is their best—although not a great—option.

In a perfect world, nursing homes would be unnecessary. We would all live healthy, independent lives until we dropped dead suddenly at the gym at the age of 95. We’d wave goodbye to fellow gym rats as we fell off the treadmill, and that’d be that. I’d love for that to be my farewell to the world. My goal is to die very old and very suddenly—and to inconvenience no one in the process. As a gerontologist, I’m smart enough to know that’s unlikely.

Medical technology can cure us of ailments that used to kill us. We survive acute illnesses but must live with chronic ones. And people, because of this annoying issue of having to earn a living, can’t always quit their jobs to provide 24-7 care to Grandma, Grandpa, Mom, or Dad. (And, to be honest, not everyone is physically and emotionally capable of being a full-time in-home caregiver.)

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

I can’t promise him I will never get in a car accident. I can’t promise him I’ll never lose my job. And I can’t promise him that he will never live in a nursing home.

There are things in life that are out of our control.

So we sometimes must consider a nursing home. Not because we love the idea—but because this is reality and we have limited options. Few of us have the money to pay for round-the-clock home care. And our homes often aren’t equipped to provide the type of environment to keep an individual with Alzheimer’s or related dementia safe. So we check out nursing homes.

And we get a sick feeling in our stomach when we see the people who live there. They are sitting in wheelchairs by the nurses’ station. They are waiting…but for what? For dinner? For bingo? For death? Some of the staff members are smiley, pleasant, and kind. Others seem to hate their jobs. Most are rushing around without time to chat. We identify what we consider to be the best nursing home in our desired area. Maybe it has a bed available; maybe it doesn’t. And that’s the sometimes ugly, often painful process.

We move our loved one with dementia into the nursing home. Sometimes they are aware of where they are and exactly what’s happening…sometimes they aren’t. Maybe they are pleasantly confused; maybe they are terrified. Either way, we feel like the most disgusting scum on the face of the earth.

And what other people say doesn’t help. Maybe someone in your support group says something like, “I’ll never put Harold in a place like that after what a great husband he’s been.” (In fact, this is a direct quote from a support group I once visited—except his name wasn’t Harold.) Maybe if Harold had been a jackass of a husband she’d already have placed him in a nursing home?

Perhaps someone in your own family makes a backhanded comment about how you didn’t invite Mom to live in your basement bedroom. What they don’t understand is that you’d be terrified she’d fall down the steps to the basement and you can’t quit your job—and honestly don’t want to—to be home with her all day. Maybe they don’t understand that her disease will leave her unable to bathe herself and use the toilet on her own. Your own physical health makes you incapable of taking on those challenges. And you didn’t see a line of people volunteering to let her live in their spare bedroom.

Maybe your siblings weren’t anywhere to be found during this process. Maybe they weren’t willing to be involved in making a decision but showed up just in the time to tell you that you made the wrong one. Perhaps they visited Dad once in the last year and he really rose to the occasion. He had the energy of a teenager and mental sharpness he hasn’t possessed in five years…for that one day. (Yeah, that happens a lot when you’re trying to convince someone that your loved one is struggling—just like when your car doesn’t make that clunking noise when you take it to the mechanic.)

Now your siblings can’t figure out why you have turned into such a villain and are insisting on imprisoning your dad in a nursing home. It wouldn’t be so awful that they thought you were a villain if there weren’t this voice in the back of your head echoing the sentiment each time you visit the nursing home.

So stop. Just stop. You aren’t a villain. You aren’t a bad person. You are just a person—doing the best you can under circumstances that aren’t great. And you’re not alone.

Sometimes a nursing home really is the best option. It doesn’t mean we like the idea. It doesn’t mean we’re abandoning our loved one. It means that we had to make a hard decision.

And sometimes the best of our limited options isn’t great.

Impulse Control (Or Lack Thereof) in Dementialand

When I do presentations and explain how dementia can impact impulse control, I ask groups, “How many of you have ever felt like hitting someone, kicking someone, or verbally berating someone…but didn’t?”

It’s funny. I’ve asked this question to quite a few groups: nursing home administrators, nurses, nursing assistants, social workers, family caregivers, nuns, cops, city bus drivers, college students, and legislators—to name a few. The initial response of most groups is to passively look around to see if anyone else raises their hand. It’s almost like they think it’s a trick question and that I’m setting them up to look like dregs of humanity.

And then I say, “Okay. Only me, then.”

The two notable exceptions are city bus drivers and (get this) nuns. When presenting to both of these groups, hands shot up and heads nodded. Maybe bus drivers admitting that they sometimes suppress angry responses isn’t surprising…but the nuns?

Let’s face it. We all feel that way once in a while—maybe more than once in a while. Even nuns.

When the nuns readily (and honestly) admitted that they have felt like lashing out at people, it reminded me that those passing thoughts are part of being human. And, for most of us most of the time, they are just that–passing thoughts.

It’s not the absence of these urges that make us kind people and upstanding citizens. It’s the decision to take a deep breath, push those thoughts aside, and respond in a different—and more acceptable—manner. Our goodness is not dependent on the absence of frustration (and even rage) with others. It’s more dependent on our choice to respond in a way that doesn’t demand someone call the cops.

For the majority of our population, it is a decision. However, the ability to make that decision depends on the activity in a certain part of our brain: the prefrontal cortex. The prefrontal cortex is responsible for impulse control, emotional regulation, self-regulation, and social skills.

Yeah, it’s pretty important.

When this part of the brain is damaged by dementia, people struggle to control their emotions. They may even become physically aggressive. At the very least, what goes through their head comes right out the mouth (whether it’s kind or not).

We’ve all been told “If you can’t say anything nice, don’t say anything at all.” However, let’s imagine what life is like when you really can’t stop yourself from saying those things that float through your head. I wouldn’t have many friends, I’d probably be divorced, and I’m pretty sure I would’ve lost my job by now.

And I’m not unique. We all have thoughts, urges, and desires that ain’t pretty. It’s seeing someone drop a $100 on the bill while walking down the street and thinking—just for a split second—that you could keep it and no one would know. But you give it back. It’s getting so frustrated with a coworker that you have this moment when you clench your jaw and having the word “asshole” float through your consciousness. But you don’t call them an asshole. It’s seeing a woman you haven’t seen in a year and realizing she’s put on an impressive amount of weight in that time. Thank you, prefrontal cortex, for the ability to notice but say “I love the way you’re wearing your hair,” rather than, “Wow! You’re a lot bigger than you were at the Christmas party!”

If my prefrontal cortex fails me, I’m screwed.

With Alzheimer’s, the prefrontal cortex is eventually impacted, but it is generally not affected until a bit later in the disease process. However, this part of the brain is usually impacted early in the disease process for those with frontotemporal dementia and chronic traumatic encephalopathy (CTE).

When I was in graduate school, I started volunteering for a hospice. My first hospice patient had frontotemporal dementia. I was told by the volunteer coordinator that several volunteers had already visited this guy, but none of them were willing to go back. She wasn’t sure why.

As I entered his house for the first time, I greeted him by saying “Hi! I’m Elaine, the hospice volunteer!”

His response was “Hi, Elaine, the hospice volunteer. Can I get a kiss?”

Except…he didn’t ask for a kiss. It was something a bit more sexually explicit, and I’m trying to keep my blog PG-13 here.

I called the volunteer coordinator that afternoon and said, “I think I know why the other volunteers don’t wanna go back.”

I didn’t know a lot about dementia at the time, but for some reason I was comfortable being around him. His wife worked two mornings a week, and I’d come over and stay with him during that time. I’d sit on the floor with my laptop and work on my thesis. He’d watch movies and pipe up every 15 minutes or so to ask for a sexual favor. I’d tell him I was pretty busy at the moment with my thesis. He seemed to respect that. I’m not sure how my 23-year-old self found normalcy in that routine, but we did it for about four months. Then he moved to a nursing home.

I can’t come across a copy of my thesis without thinking of this guy and wondering how many times I was asked for sexual favors in the process of writing it. And somehow it makes me smile. Despite the weirdness of our situation, I really liked him.

I didn’t know it at the time, but his prefrontal cortex was degenerating. I don’t think he ever had an MRI done, but an image of his brain would have likely shown atrophy of this area. He wasn’t a dirty old pervert harassing a young woman. His brain was broken.

I once heard someone say that the prefrontal cortex is what separates man from beast. When it doesn’t function correctly, we want what we want—and we want it now. We are unable to think ahead to predict the consequences of our words and actions. And we don’t process emotions like guilt and empathy.

For those of us without dementia, our prefrontal cortex is constantly functioning to help us make decisions that preserve our relationships and jobs. And all of us, from nuns to bus drivers to college professors, depend on it to keep us out of trouble.

The Hilarious World of…Dementialand?

There’s a risk in associating humor and dementia that I cannot deny. I don’t want people to think dementia itself is funny. As a society, we do have a challenge in getting people to understand that dementia isn’t just about forgetting in old age. It’s so much more than that. The memory loss, as I often say, isn’t the worst part for many individuals and families. Alzheimer’s and related dementia diagnoses are serious and life-altering, but funny things do happen along the way. It’s okay to laugh when those funny things happen.

This is it, guys. My final post before I go on summer break. (To be fair, summer break seems a long way away since it’s about 35 degrees and rainy in Iowa right now.) I’ll be back in the fall. I’ll miss you. Really.

I was on the road for work last week. During this trip, I became very grateful for two things: 1) podcasts, and 2) my friend CJ who recommends the best podcasts.

CJ recently recommended I listen to “The Hilarious World of Depression,” a podcast where comedians talk about their issues with depression. Good call, CJ. I love it. It’s equal parts funny and depressing, as you might expect. I have to admit it’s reassuring in an odd way. (And, to be honest, it’s less depressing than “S-Town,” which I listened to before “The Hilarious World of Depression” and brought me to the verge of tears at least twice somewhere on I-90 in central Illinois. I won’t be a spoiler, but “S-Town” is a real downer.)

Early in the podcast, the host makes a comment about how his life has been full of both comedy and depression. It occurred to me that these are two independent variables which may not always be negatively correlated. Comedy doesn’t mean the absence of depression. Depression doesn’t mean the absence of comedy. They can co-exist.

And it got me thinking….could there be a podcast called “The Hilarious World of Dementia?” (Not that I’m considering starting one. I don’t like my voice when I hear recordings of it, and I might get in trouble for copying the depression podcast anyway.)

Is dementia funny? My answer, I guess, is that it’s no less funny than depression. Dementia kills…then again, so does depression. Two serious issues. In fact, two issues that are public health crises. Where’s the humor in that?

If I have been given a natural gift, it’s that I am almost always able to see the humor in difficult situations. I’ve only recently starting viewing this as a gift. In fact, it’s gotten me in a trouble a few times, usually because I see situations as hilarious when others don’t get the humor. I can come off as insensitive if I’m not careful.

What I’ve realized is that finding humor doesn’t make situations less sad or scary. It just helps me cope with the sadness and the fear. Maybe you can apply that to dementia–or depression. Or just about anything else. Comedy doesn’t take away the bad stuff, but it helps you get through it.

Once I spoke to a woman whose mother had Alzheimer’s. Her mother’s favorite restaurant was Steak and Shake, home of those controversial skinny greasy fries you either love or hate. As her mother’s disease progressed, she thought she’d take her out of the nursing home for an afternoon and head to Steak and Shake.

As they finished eating, her mom said she needed to use the restroom. The woman thought she might need help, so she went with her. Although her mom was physically capable of using the restroom, she needed some prompting.

The woman prompted her mother to pull down her pants, and her mother balked.

“I can’t take off my pants or the man won’t bring me Skittles,” the mother said. The daughter had no idea what “man” she was referring to, and she was surprised to hear her mom talk about a candy she had probably eaten three times in her life. Yet, the mother could not be convinced to pull her pants down. A battle ensued.

The daughter got creative and pulled out her cell phone. She put the phone up to her ear and had a conversation with the “man.”

“Will my mom still be able to have Skittles if she pulls her pants down?” she asked. Then she nodded. “Okay, great, thank you.”

And the mother pulled her pants down and used the restroom. Well-played.

As the daughter told me this story, she explained that there was a moment where she had to make a conscious decision about whether she would find the humor in this.

“I’m standing in the restroom at Steak and Shake making a fake phone call to try to convince my mother that she can still have Skittles if she pulls her pants down,” she recounted. “It was sad. And then I decided I was gonna appreciate how ridiculously funny it was as well. Because if I couldn’t find the humor, I wasn’t gonna survive.”

Dementia isn’t a joke. Dementia is brutal and fatal. And I know you can’t always laugh, but if you have the choice between laughing and crying, go ahead and laugh….because laughing won’t always be an option. And don’t ever apologize for finding humor in the strange world that is dementia. Sometimes things are just funny. You aren’t making fun of your loved one; you are just getting through in the best way you know how.

Caregivers often say to me “I know I shouldn’t find this funny but….” And then comes a story that they feel guilty for finding humorous. Stop feeling guilty, caregivers. It’s okay to laugh. You will be a better caregiver if you can find at least a small amount of humor in your everyday life.

There’s a risk in associating humor and dementia that I cannot deny. I don’t want people to think dementia itself is funny. As a society, we do have a challenge in getting people to understand that dementia isn’t just about forgetting in old age. It’s so much more than that. The memory loss, as I often say, isn’t the worst part for many individuals and families. Alzheimer’s and related dementia diagnoses are serious and life-altering, but funny things do happen along the way. It’s okay to laugh when those funny things happen.

Now that I think about it, I’d probably say the same thing about life in general. You laugh when you can–because you never know when your next chance to laugh might be.

Another revelation from my new podcast obsession…

A comedian makes the point that having depression is like knowing there’s a magic wand that’s five feet away from you that could make you feel better but not being able to get up of the couch and grab that magic wand–and thinking it wouldn’t work for you anyway. This made me realize that the cruelest illnesses are those that take away your ability to help yourself.

There are things that might make a person with depression feel better. Exercise. Spending time with friends. Going to see a counselor. All of these things take motivation and effort, which depression targets. In a way, depression takes away your ability to fight depression. How do you battle a disease that inflicts symptoms that prevent you from battling that disease?

The more I think about it, the more I realize dementia is similar to depression in this sense.

Dementia makes self-care so difficult. First of all, it saps your energy and makes you unable to follow through with tasks. When I meet someone with dementia symptoms and explain the resources available to them (or even how to get an appointment with a neurologist), I might as well be telling them that they need to run six consecutive marathons and solve a mathematical proof.

In all honestly, there are many individuals who have dementia and are unable to seek or accept assistance because their disease is telling them that they’re just fine…that they don’t need help at all. How do you fight a disease when the disease is telling you that you have don’t have a disease? Sure, I can talk to their family as well, but families are often times so shell-shocked that seeking resources can be overwhelming and challenging. And how does a family member help an individual with dementia when that person doesn’t have the self-insight to realize they have dementia?

Thank you to the creators of “The Hilarious World of Depression” for making my long drives in smoky-smelling rental cars more tolerable. Thank you for giving me something interesting to think about as I drove past cornfields and….well, mostly cornfields.

My next podcast? I’ll have to ask CJ. But how about something a bit more lighthearted?

 

Fatigue in Dementialand (aka Why the Dementia Brain is So Tired)

People with dementia are often perceived as not trying when in fact they are working extremely hard. The dementia brain must work constantly to make sense of the world. It is struggling to interpret one’s environment in the way that the non-dementia brain might struggle to understand a calculus problem when one never took a calculus class.

Today we are back to Q’s and A’s. Today’s question is from Carole…

My husband is very fatigued, and sleeps way more than he used to. There are no medication changes, and he is on the same medications he has been for years (low dose ramipril, Lipitor, and hydrochlorthiazide). If we go for a very short walk, he is “exhausted” and will complain of his leg muscles being sore. All labs are within a normal range. Does anyone know the cause of increased fatigue associated with dementia?

Carole

Dear Carole,

Because I have to do my due diligence, I’ll go through some things that can cause fatigue in someone with dementia–medications (and he might react to some medications differently as he progresses), sleep issues (it’s likely he’s not sleeping as well as he used to), poor nutrition (people with dementia sometimes crave less healthy food like sugary treats), and depression (which is not surprisingly common among those with dementia). Kudos to you for making sure those labs are in the normal range.

But you know what? Even if none of the above factors are in play, dementia makes people tired. In short, it is exhausting to have dementia.

We often look at people with dementia, and it seems like they’re not trying. Let me assure you they are actually working really hard to do things that us folks without dementia do quite effortlessly.

I’m going to give you an analogy here, and it’s a really awful one. I played several sports in high school. I looked pretty athletic. However, I was–and still am–a very slow sprinter. When we ran sprints in sports, I always got in trouble for not hustling. My coaches thought I wasn’t trying when I was running my heart out. I was just really slow. I’d look at my teammates, who were effortlessly running 100 yards in the time it took me to run 60. And it was frustrating as heck. I remember telling a basketball coach in high school, “I know I look fit and it seems like I should be able to run fast, but I’m trying my best and I’m just super slow.”

No, high school basketball and dementia are not the same. Yet we can all think of a time when we were putting a lot of effort into something that was difficult for us (but easy for others) and another person accused us of not trying. It’s maddening.

You probably see where I’m going here. People with dementia are often perceived as not trying when in fact they are working extremely hard. The dementia brain must work constantly to make sense of the world. It is struggling to interpret one’s environment in the way that the non-dementia brain might struggle to understand a calculus problem when one never took a calculus class.

And, Carole, when you mention a walk, I think of all the changing sights, smells, and sounds your husband’s brain must constantly interpret. An effortless chat (on your part) is probably quite challenging for him as he must filter all the stimuli he encounters to focus on your voice and interpret what you say. And that’s tiring.

I have a friend with dementia who told me she’d meet with friends that would say something like, “You don’t seem like you have dementia. You just seem normal.”

What they didn’t realize, she conveyed to me, was how hard her brain was working to carry on a “normal” conversation while they were together–and how tired she would be after their visit. The longer the visit lasted, the less likely she was able to be “normal.” Her brain just got too tired.

(Notice I put “normal” in quotes. I don’t like when we allude to people without dementia as normal and those with dementia as not normal. We’re all weird, anyway. It’s what I like about people.)

Mental energy is a precious resource for all of us, especially those with dementia, and mental energy isn’t independent of physical energy. Think about….When you are mentally exhausted from a long and stressful day at work, it’s hard to get yourself to the gym for a workout.

People with dementia often have high levels of anxiety. Here is the tricky thing about anxiety–being keyed up all the time makes you tired but makes it hard to sleep well. Then you end up exhausted but jittery and tense, which is an uncomfortable feeling that leads to more fatigue and more anxiety.

Sometimes my brain gets tired. Maybe I’ve been grading too long. Maybe I’ve been working on a tedious report for the university. Perhaps I’m looking at data for a research study. My brain, just like every brain, needs a break sometimes. And I can give it a break. In fact, I have to give my brain a break at some point or my productivity suffers.

It’s harder to give the dementia brain a break. I can stop doing something that is mentally strenuous and do something that is mindless. Unfortunately, for someone with dementia, it becomes harder to find something mindless. Even doing something seemingly simple (like watching TV, having a conversation, listening to the birds), isn’t a break for the advanced dementia brain. The person may feel an urge to sleep in an effort to protect their brain from being overwhelmed.

Carole, I hope that’s somewhat helpful. If you ask someone else, they might conceptualize the association between dementia and fatigue differently. My answer, really, is pretty simple.

Your husband is tired because having dementia is tiring.

Elaine