Category Archives: caregiving

Dementia and the Wedding

alzheimer's, caregiver, caregiving, dementia, dementialand, nursing home

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.)

 

 

Nursing Homes and Guilt Traps in Dementialand

aging, alzheimer's, caregiver, caregiving, dementia, families, nursing home

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.

When You Are Accused of Being a Diva in Dementialand

alzheimer's, alzheimers, caregiver, caregiving, dementia, families

Today is my third (of a still undetermined number) of Q & A’s in Dementialand. Today’s question is from an individual who has been diagnosed with Frontotemporal Dementia.

Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).

I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.

All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.

D

Dear D,

Let me start with this…I did a series of posts on dementia and the senses. Here you go:

Sight: What You See in Dementialand

Hearing: What You Hear in Dementialand

Taste: What You Taste in Dementialand

Touch: What You Touch in Dementialand

Smell: What You Smell in Dementialand

You can email these to your friends and family.  You can send them text links. You can print them out and mail them. You can even read them aloud or deliver them on a silver platter while wearing a tuxedo or ballgown. If I’m being honest, my friend, I don’t think this is going to make a bit of difference.

You see, these people have not yet been responsive to your diagnosis and the changes occurring in your life. They could have googled to learn more about Frontotemporal Dementia. They could have asked you or your caregiver questions. They could have shown an interest in learning how to support you. And they haven’t.

I wish I could tell you the words to say when they are disrespectful and doubtful of your diagnosis to make them understand. I regret to tell you that these words don’t exist.

You are not a diva. You have a disease. It is a real disease; you can “see” the disease at autopsy–and many times on various scans during life. And while most people associate dementia with memory loss, it’s about total brain failure. And sensory overload is a large part of this. In fact, I believe the anxiety caused by sensory overload is one of the least talked about–but most debilitating–aspects of various types of dementia.

The dementia brain works very hard to interpret its surroundings. When it gets tired (which doesn’t take long), the individual with dementia is no longer able to control their emotions and impulses. At this point, the person who has dementia may become irritable and difficult to be around. Or they may shut down completely. We sometimes say they are giving us a hard time, but they are really having a hard time.

You can tell your loved ones this, but I am not convinced it’s going to make a bit of difference. In fact, explaining the symptoms of a disease that they believe doesn’t exist in the first place probably won’t get you too far.

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

So why can’t you come when it’s just family? Because you’re not feeling up to it. Because you’re feeling overwhelmed. Because you need a break. Because spending your precious mental energy on being around people who don’t make an effort to understand you just isn’t worth it. I don’t care what you tell them. There’s never going to an explanation that’s good enough–so tell them what you want. And leave it at that.

You have a reason (and a valid one) for not attending your father’s funeral. If people ask, explain it once. If they don’t get it, stop. Just stop explaining yourself. It’s not worth your time, and it’s not worth your limited energy. Walk away, figuratively and literally, from people who question whether you really have a disease. In the best of circumstances, arguing with family is energy-zapping and frustrating as heck. To you, it’s positively toxic.

You ain’t got time for this.

 

Why Does My Mom Hum in Dementialand?

alzheimer's, alzheimers, caregiver, caregiving, dementia, music

This morning I present to you the second in my series of an as-of-yet undetermined number of Q & As. Today’s question is to the point:

Why does my mom hum?

I’m not much of a musician. In fact, I lipsynced my way through middle school chorus because when I actually sang on the first day the director said, “Someone over there in the front sounds really off.” After deducing that someone was me, I became skilled at looking like I was singing when I actually was not. I was so skilled that the next year I won third place in a lipsync contest at a school fundraiser. If I remember correctly, I got a gift certificate to Pizza Hut.

When I was in high school, I joined in singing the national anthem at an event. Apparently I was so bad that someone thought I was mocking America and being disrespectful to the flag. Now I stand proudly with my hand across my heart–and my lips tightly shut. It’s my gift to America.

That being said, I love music. It’s just that I’m more of a connoisseur than a performer. The perfect song at the perfect time can change my day for the better. I’ve spent hours creating the ideal playlist for a party to give it the right “vibe.” And sometimes a song comes on my Pandora playlist that reminds me a of a moment twenty years ago that makes me smile. Music can be a powerful ally in changing your mood.

My work with those who have dementia has only reinforced my belief in the power of music. While the impact of music might seem like magic, it’s based in science. You see, rhythm comes from a part of the brain that isn’t generally affected by dementia until late in the disease process. When language is gone…when logical reasoning is gone…when motor control is gone…when memory is gone…song and prayer often remain present because they are based in rhythm. If you’re interested in seeing the impact of music on those with dementia, do yourself a favor and watch the documentary, Alive Inside.

Call it a miracle or a scientific fact. Either way, it’s a gift in the midst of what can be a cruel disease process. Dementia can be pretty stingy with presents. When you get one, accept it.

So why does your mom hum? Your mom hums because she may not be able to find the words to express herself. She may feel a frustrating inability to control the world around her. Yet her brain can still identify and express rhythm.

It’s what she’s got left.

We want to focus on what people who have dementia have left rather than what they have lost. If your mom’s got rhythm (which is common), use it. Make music a part of her everyday life. If you want her to walk, turn on a tune and make it feel like a dance. Rhythm might be your connection to her after other connections have failed. Use it.

If you’re unsure how to use music as a tool for those with dementia, check out this video by occupational therapist, Teepa Snow:

http://teepasnow.com/resources/teepa-tips-videos/music/

And while you’re at it, check out some of the other videos on the site.

P.S. I’ve written about music and dementia at length before. If you’re interested, check it out: 

https://welcometodementialand.com/2015/08/17/the-miracle-and-science-of-music-in-dementialand/

 

 

Delivering Bad News in Dementialand (Or Do I Tell Mom Her Sister Died?)

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

As promised, I am starting my series of Q & A today. Wading through your emails and comments has made me realize how many important topics I have not yet written about in my blog.

Today I address one of these issues. I can tell you exactly why I haven’t discussed it before–because it’s a hard topic. And my response on this one tends to make some people uncomfortable. I’m gonna tell you that it’s not always best to tell the truth.

Dear Elaine,

I love your posts! So many of them have been so helpful for me. My mom is 85 and has moderate dementia. She is in an assisted living and has adapted pretty well. Her biggest issue is short term memory. She will literally reboot every 10 to 15 minutes and ask the same question. We have struggled with the question of “Where is all my stuff” and have simply told her it’s all in storage.

A few months ago her last remaining sibling passed away and I was given the job of telling her. So I took the 2 hour drive to go see her and let her know.  And as expected, 15 minutes after I got there and told her about her sister, she forgot. I told her one more time and then she forgot.

I talked with my brothers and said that I didn’t think she should go to the service for her sister. My feelings were that there was no point in having her grieve over and over again. She was not close with her sister anyway. Did I screw up? Should I have taken her? 

Thanks again for the great blog!

Karen

 

Dear Karen,

Well, I’m actually a bit embarrassed here. This is my 136th blog post, and I’ve never discussed this before. So here goes…

I want you to take a moment to think about what it felt like when you were told a loved one had passed away. I remember being in high school when I was at a friend’s house. I got a call from my mom who told me that my grandfather had died of a heart attack. He wasn’t a young man, but it was a surprise.

Everyone has a unique response to devastating news. You might feel like you were punched in the stomach. You may become sick to your stomach or start sweating. Maybe you get short of breath or begin trembling. My go-to response when I get bad news is a sensation that a racquetball is lodged in my throat.

I want you to remember that when you give someone bad news, you are inflicting on them this type of response. And, sometimes, it is necessary to do this. In life, we are sometimes charged with the task of delivering terrible news to people we love. It’s not easy, and it’s not fun.

I know pain is a part of life, and pain is unfortunately often present in Dementialand. Giving someone news that a loved one has passed causes them pain. (I should add that it causes no less pain when someone is told that their loved one died ten years ago than when you tell them they died yesterday. If you work in a nursing home, please keep this in mind when a widow asks where her husband went.)

What we want to avoid is inflicting pain unnecessarily. If a person will not be able to process and remember that a loved one has died, giving them this information causes them unnecessary pain. If you must tell them repeatedly because they are not able to store the information, you are causing pain with no purpose. It’s like poking someone with a needle but not giving a shot.

I am not a big fan of the stages of Elizabeth Kubler-Ross’s stages  of grief (denial, anger, bargaining, depression, and finally acceptance) because they are a far too simplistic conceptualization of the grief process, but most of us do work through a variety of difficult emotions and eventually–or hopefully–come to something that resembles acceptance or peace.

However, that’s not a possibility for someone who has short-term memory issues. When we tell someone who cannot store information that loved one is dead, they experience those negative emotions that all of us experience upon hearing this type of news. Yet they cannot remember the information long enough to come out on the other side and find peace. Their peace comes from forgetting what we have told them…and unfortunately that is the point at which we tell them again.

The trick, of course, is figuring out when someone moves from a place where they have the ability to process the information of a loved one’s death to where they cannot. People in the early stages of dementia must suffer through bad news just like the rest of us. As the disease progresses, we must ask ourselves whether or not they are capable of holding on to this information. If they aren’t, we shouldn’t dole it out repeatedly.

A friend once told me how she went to the nursing home to tell her grandpa that her grandma had passed away. Her grandpa had Alzheimer’s, and she wasn’t sure how he would respond to the news. She told him how his wife had passed away peacefully at the hospital surrounded by family.

He teared up, but soon got distracted. About five minutes later, he asked where his wife was. My friend told him again that his wife had passed away. He once again got teary, but in a few minutes he was talking about the weather. Then he circled around and asked where his wife was. My friend took a different approach this time.

“She’s at Hobby Lobby,” she told her grandpa.

“That woman could spend the whole damn day at Hobby Lobby. I’m gonna need another job if I can’t win the Powerball,” he responded with an eye roll.

From that moment forward, Hobby Lobby became the stock response when he would ask where his wife was. Not only was he spared the repeated (and purposeless) pain of being told his wife had passed away, he was given an opportunity to make snide remarks about her shopping.

The short answer, Karen, is that you did not screw up.

Elaine

 

 

 

 

 

 

 

 

Playing Dear Abby in Dementialand (And My Overdue Apology to My Muscatine High School Peers)

alzheimer's, alzheimers, caregiver, caregiving, dementia, dementialand, depression

Today’s blog post is a little different. I am here asking for your help. Yes, you.

I am talking to you.

I am asking you to submit a question. Obviously, the question should be limited in scope because I don’t know everything–or so I am often reminded by my husband. I can answer questions about Alzheimer’s and related dementias. Heck, I can even answer questions about The Bachelor, which you know I am keeping in my closet if you read last week’s post.

However, that’s about where my knowledge ends. I would avoid questions about remodeling kitchens, how to avoid backing into your garage door frame, and general cooking. Those are topics I am have shown that I am not qualified to advise on.

In future weeks, I will focus on answering questions. Maybe I’ll answer one in a post. Maybe I’ll answer six in a post. I haven’t decided on a format yet. However, find that box below where it says “LEAVE A REPLY” and write me a question. If you would rather send me something anonymously, you can email me at elaine.eshbaugh@uni.edu. Sometimes I find reader emails in my spam folder months later, so put “Dementialand” in the subject line and I promise I won’t miss your email. I’ll be like Dear Abby with a slightly more modern haircut and without the bright red lipstick.

This Dear Abby thing isn’t new to me. I wrote an advice column in my high school newspaper. In four years of high school, only one person wrote me for advice. (And I remember the letter vividly. It was from an anonymous kid who thought he might be gay. My friend Lory who is a counselor helped me write a response. I still think about that guy and hope he’s doing okay. If you’re out there, please tell me you’re okay.)

Full disclosure to my high school peers….I made up the rest of the letters. Yep, I asked myself for advice and then responded. And this is the very first time I’ve fessed up to this. I thought I’d go to my grave with that weighing on my heart, but it feels good to get it out there.

Sorry, Muscatine High School. I deceived you. But really, it was sort of your fault for not writing me any letters!

Readers, do not make me repeat this behavior. Shoot me some questions!

Shrinking and Cluttered Closets in Dementialand

alzheimer's, alzheimers, cancer, caregiver, caregiving, dementia, depression

I don’t often get the opportunity to chat with people in the very early stages of dementia. The nature of what I do more typically puts me in the presence of caregivers and–when I am with people who have dementia–those who are in need of extensive care. However, sometimes I get the opportunity to chat with an individual who I certainly would not have identified as having dementia had they not told me of their diagnosis.

Jackie (not her real name) was such a person. A petite woman who looked to be in her early 50’s with a blonde bob haircut and funky glasses, she struck up a conversation with me at a senior fair where I had earlier presented on family dynamics and caregiving. I expected her to tell me that she was a caregiver for a parent, but she told me that she had recently been diagnosed with younger-onset Alzheimer’s. I asked how she had been adjusting to her diagnosis, not knowing if this was the appropriate way to phrase the question.

She shrugged and told me she wasn’t okay but that her life wasn’t over either. She said she was working on adjusting to this disease rather than fighting it. She believed working with it rather than against it would work best. I liked her perspective, so I asked her to tell me more.

“I had to give up some stuff, so I gave up taking care of things others can take care of themselves,” she said.

She gave me an example.

She used to pack a suitcase for her husband when he traveled for work. Before her diagnosis, she was feeling increasingly tired and frazzled. Her husband was headed out of town, and she decided she wasn’t up to packing for him.

“You know what he said?” she asked me. “He said, ‘No problem.'”

And I guess it wasn’t a problem.

“So he’s perfectly capable of packing his own suitcase?” I inquired. She laughed.

She explained that he often forgot his toothbrush…his deodorant…his razor…(which he could easily buy at his destination). And that he didn’t know how to fold his clothes so they didn’t wrinkle.

“But,” she told me, “The world didn’t end. Wrinkled clothes don’t kill a man.”

(The next time my husband walks out of the bedroom headed to work in wrinkled clothes and I debate whether to say something, I’ll remember that phrase. Wrinkled clothes don’t kill a man.)

She also explained that she no longer gets up early when her kids and grandkids visit to make them breakfast. She knew she would have a limited amount of mental and physical energy, and she felt like getting up a little later made for a more pleasant day for everyone.

“You know what?” she asked. “They just eat cereal. They’re fine with it.”

Jackie told me that it took an Alzheimer’s diagnosis to put her in a position to stop feeling obligated to do things that her family members could do for themselves.

“I thought that my family would fall apart if I didn’t do all these little things for them. Turns out, they can take care of themselves,” she said.

All of us have limited time and energy. All of us have to decide how we want to spend that limited time and energy.

Jackie decided she didn’t want to spend it packing a suitcase for her husband and getting up early to make a huge breakfast for her family. More power to her.

Whether or not we have an Alzheimer’s diagnosis, we can consider whether or not we are spending our time and energy in ways that work for us. I should add that energy doesn’t only represent physical energy. We are talking emotional, mental, spiritual energy as well.

My husband was talking recently about conceptualizing how we spend our efforts as a closet. Once the closet is full, we can’t fit anything else in. Some of us can do more than others, but we can all only do so much.

If you know me at all, you know I do well with literal rather than figurative. However, this closet deal really spoke to me. When I am asked to join a committee or take on a new project, I think of my closet. If I say yes, do I need to throw something else in the proverbial goodwill pile to make room for the new endeavor? Do I have to make a decision to be less invested in something I’m already doing? Will I end up jamming everything into the closet and being less proficient at everything I do?

Here are some of the things in my conceptual “closet” in no particular order:

  1. Writing this blog
  2. Teaching my college classes
  3. Overseeing interns
  4. Speaking engagements
  5. Taking care of our dogs and cats
  6. Watching “The Bachelor” (most weeks this is a two hours commitment!)
  7. Keeping the house clean-ish
  8. Doing Next Level Extreme Fitness
  9. Going to athletic events at our university
  10. Being on boards/committees on campus and in the community
  11. Making overnight oats every night for my husband and me
  12. Administrative responsibilities at work
  13. Working on research articles
  14. Running–when it’s nice outside
  15. Visiting memory care community, adult day centers, and nursing homes
  16. Serving as NCAA Faculty Athletics Rep at our university
  17. Advising Family Service and Gerontology majors and mnors

Some weeks my closet seems pretty dang full. (To be fair, other weeks are a bit more sparse.) A few months ago, I felt like I was having trouble keeping my closet manageable. Everything was overflowing. I felt like the door wouldn’t even shut, so something had to change.

I could have quit teaching my college classes. I could have just gone MIA on campus. I could have stopped coordinating the Gerontology major. No more responding to emails from other areas of the university or turning in reports about the major. I could have not shown up at speaking engagements. Because these are responsibilities related to my paycheck and my professional reputation, tossing them out of the closet didn’t seem like a good option.

I had to look elsewhere to make a change. For years I had taught fitness classes at our community rec center. I quit.

Could I have given up “The Bachelor” instead? Yep, but I didn’t. Could I have decided to keep the house less clean?  Definitely, and I’m not a clean freak anyway. I could have even chosen to forget about this whole blogging endeavor except that I recently invested in a whole year of an upgraded membership to WordPress so you all wouldn’t have to see ads. I guess I have to blog another year to make that worthwhile.

I have a limited amount of time and energy to spend as I wish, and teaching fitness classes is what I pitched out of my closet for the time being. It’s the decision I made. Someone else might have made a different decision. Someone else is not me.

If I were diagnosed with Alzheimer’s or another disease, my time and energy would be more limited, and I would likely have to make more decisions about what I throw out of my closet. (If you are following me with this whole closet analogy, picture that closet getting smaller.) This is what I see people in the early stages of dementia doing whether or not they realize it.

You can also picture that shrinking closet for someone who has depression, cancer, or fibromyalgia. The more limits life puts on us, the smaller that closet gets. As health declines, the closet may be 10% of the size it used to be. It’s increasingly important to evaluate what the heck you are trying to manage in that shrinking closet.

It’s adaptive to acknowledge that your closet is no longer the size of the one Mr. Big built for Carrie on Sex & the City. It’s a closet you’d find in a studio apartment in downtown Chicago. Accept it, and evaluate its contents. You can focus more positively on what is left in your closet when you throw out things that are no longer working for you.

I should also add that an empty closet is…empty. Even a tiny closet needs some contents. We must have something we perceive as meaningful in which to invest ourselves. When we lose that, we lose our purpose.

Sometimes you find, like Jackie did, that giving up some of the things in your closet isn’t as traumatic as you might predict. Many of us, Jackie and myself included, think we are irreplaceable. I didn’t know what my fitness class participants would do without me. You know what? They still exercise–just with a different instructor. I miss them, but they are fine.

Similarly, Jackie’s husband is able to manage to pack for work trips on his own. Even a crisis like forgetting a toothbrush isn’t really a crisis. And although Jackie’s family enjoyed the breakfast she made, they are fine without it as well.

I once spoke with a woman who had cancer about the minimal energy she had while doing chemo. I remember her telling me that she couldn’t do everything so she had to choose what was most important.

“But really,” she told me, “that’s what I should’ve been doing all along.”

So here goes my attempt at something poetic and meaningful, keeping in mind I’m notably bad at poetic and meaningful.

Whatever life throws at you, may you keep your closet full but not cluttered. We can’t control everything about our lives, but we can control where we invest our time and effort. We can’t invest time and effort in everything. We may have less to invest than we’ve had in the past. Invest it in the right things for you. Don’t let how other people organize their closet make you feel like you’re organizing yours wrong. They aren’t you. They may have a bigger or smaller closet, and they may have different priorities.

For now, I’m keeping The Bachelor in my closet. Don’t judge.

 

 

 

Lessons Learned From Writing About Dementialand for Two Years

alzheimer's, alzheimers, caregiver, caregiving, dementia, dementialand, Uncategorized

It’s hard for me to believe, but I’ve been writing this blog for almost two years now. This is my 125th post. Some good; some not as good; some fairly mediocre at best.

This adventure has been a far greater learning experience for me than for any of my readers.

Here are some things I’ve learned:

  1. I can’t write a blog post before 9 pm. I just…can’t. I’ve tried and nothing happens. The only exception occurs if I am at a coffee shop.
  2. I am better writer with exactly one glass of wine. One glass makes me more productive, but two glasses makes me fall asleep. (And, for the record, red gives me acid reflux.)
  3. I’m a writer. When I was a kid, I said I wanted to be a writer when I grew up. I even had a pen name, Keisha Wrippen (inspired by the actor, Keisha Pulliam who played Rudy on The Cosby Show). I wrote a series of books about the Kit family. They either had 7 or 17 kids. As a child, I loved to write. As a grown up, I love to write. Writing may not be my full-time job, and I may not make a cent off of this blog, but I’m a writer. Maybe I have been since I started that series on the Kits.
  4. My mom doesn’t like it when I use the word “crap,” as in “what a bunch of crap,” in my blog. I do it anyway because I’m a rebel.
  5. People are nice. I cannot tell you how much those of you who have reached out to me with a compliment or an interesting anecdote mean to me. I appreciate when you let me know that you relate to something I wrote. From the bottom of my heart, thank you. Connecting with all of you has been the highlight of writing this blog. (And a special shout out to those of you who subscribe via email. I am proud that you let me clog up your inbox along with those Nigerian princes.)
  6. People are not nice. I am not referring to most people, fortunately. Really, I think most people are nice, but I have had a few not-so-nice people write not-so-nice things in the comments of my blog. They are usually not directed at me. They are typically negative  and derogatory comments about people with dementia and/or older adults. I don’t “approve” these comments, so you can’t see them. For the record, I won’t “approve” them in the future, so don’t waste your time. If you are going to spread negativity, you’re going to have to do it elsewhere.
  7. Dementia is a tragedy, a comedy, and a love story all at once. The comments and emails I get from people range from sad, to funny, to heartwarming. To those who have started off a message to me with “I shouldn’t find this funny but….,” it is okay that you find it funny.
  8. On a related note, families impacted by dementia amaze me with their humor. They can find humor in the most challenging situations, and they need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.
  9. You can get Facebook messages from people you aren’t friends with on Facebook, but they seem to end up somewhere beyond the normal Facebook realm. I just discovered about 25 Facebook messages that readers have sent me over the past couple of years. I apologize for not responding. I wasn’t blowing you off. I still have a lot of learn about the intricacies of social media.
  10. Writing makes me look at the world differently. Instead of thinking a situation has gone poorly or feeling that something is futile, I ask myself what I have learned that I can share with my readers. Realizing that there is a lesson to be learned or even a conversation to be started has made me look at the world with a bit less negativity and more of an eye toward progress.
  11. People with dementia are pretty amazing. Many of you write insightful responses to my blog in the comments, and some of you have your own writing outlets where you express your experiences and ideas. I want you to know that I appreciate this. It’s not easy to put yourself out there when you have a dementia. You are brave, and I cannot thank you enough for teaching me. Your voice will always be stronger than mine when it comes to educating people about dementia. Special thank you to Melanie and Lisa, who have courageously put a face on younger-onset dementia. When I think of the reasons we need to continue to do research on dementia, you and your families are at the top of my list.
  12. I need to stop making assumptions. There are so many times when I size up a situation and think someone is going to be struggling, and they’re okay. Sometimes I think a certain situation is going to be difficult for a caregiver, and they tell me it really wasn’t that bad. On the other hand, I sometimes don’t think much about a situation and realize later how difficult it was for a family. I don’t know unless I ask. We are diverse human beings. We interpret the world differently. Sometimes I try to empathize with a person, but what I’m really doing its projecting how I think I would feel onto them–but they are not me. That’s not really empathizing. It’s assuming.
  13. Reality isn’t as important as connection. If there’s a lesson I’ve tried to convey repeatedly, it can be summed up by that phrase. As I write about Dementialand, visit Dementialand, and talk about Dementialand, I am pleasantly surprised at how people can connect in a positive way despite not sharing a perception of their relationship and the world around them. I could write pages of transcripts of conversations that would make no sense to outsiders. The sense comes from those of us who choose to connect with people with dementia rather than correct them. I’ve noticed that ironically sometimes those with dementia are choosing to do their same in their interactions with us. Sometimes reality isn’t all it’s cracked up to be. We can see the world differently and still connect…I think there’s a lesson there in this age of America.

So that’s it. Or maybe that’s not it–because this is only a small portion of what I’ve learned.

See you in 2017!

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

alzheimer's, alzheimers, caregiver, caregiving, dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Living in the Moment and Planning Ahead in Dementialand

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

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

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

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

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

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

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

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

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

Although I understand, I’m not much help.

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

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

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

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

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

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

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

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

Plan ahead and live in the moment.

How do you even do that?

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

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

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

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

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

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

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

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

She gives it one more shot.

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

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

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