Category Archives: alzheimer’s

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.

 

 

 

Dementialand and Nursing Homes and Dying OH MY! (A.K.A. When Your Presentation is Postponed Due to Lack of Interest)

aging, alzheimer's, death, dementia, dying, nursing home

About a month ago, I was contacted by our university’s honors program and asked to do a program for something called “Pizza with a Prof.” The professor (in this case, me) gets to choose a topic to talk about while the students listen and eat pizza. I was assured the prof would get some pizza, too. And, hey, I rarely turn down free pizza–unless it’s from Domino’s.

I thought I’d talk about some of my favorite gerontology-related topics. And–time to get excited here, folks–I put together a short Powerpoint presentation complete with a few photos of some of my favorite people, Drs. Elisabeth Kubler-Ross and Alois Alzheimer.

I chose a title for my presentation: “Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.”

For some odd reason, I thought this title would draw the interest of quite a few students. It would also show that I had a sense of humor. I anticipated that lots of students would sign up. I was wrong.

The presentation was scheduled for last Thursday. I received an email on Wednesday postponing it due to lack of interest. Only five people were planning to attend.

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

My gerontologist heart broke.

Okay, I’m exaggerating. My feelings weren’t hurt, and I didn’t take it personally. Maybe being confronted with one’s own aging process and mortality during lunch isn’t up everyone’s alley, even if the pizza is free.

My friend, Jessica, who coordinates the honors program, said maybe the day just didn’t work well for students. She said, “Your topic is awesome.” Of course, she’s one of my best friends. What is she supposed to say? Students don’t want to hear about death and nursing homes while they eat? That I only talk about totally depressing things?

I’m thinking a presentation titled “Cute Kittens and Funny Memes” might have garnered more interest. Or maybe a Powerpoint on the history of the Obama-Biden bromance.

My area of work as a gerontologist isn’t usually that interesting to people…until it’s really interesting (and relevant) to people. Dementia is boring. Dementia is sad. It’s something we don’t want to discuss. And then it all changes when someone we love has dementia. That’s when I get late night Facebook messages (which I don’t mind, by the way). That’s when people want to take me out for a glass of wine or a latte and talk dementia. Things become interesting when they matter to us. We care about issues when those issues impact us and the people that we care about.

Many of my college students are not comfortable with discussing death. I’d say it’s because they are 18 to 23 years old, but it’s not. I know people much older who are not comfortable with the topic of death. When I do presentations and cover issues related to dying, I see a certain percentage of my audience become visibly uncomfortable. Over time, I’ve learned to become comfortable with their discomfort.

I once had a lady tell me that the information I discussed on end of life issues was useful, but it was just too early in the day to think about such things. She recommended I not talk about death before 3 pm. I told her I’d take that under consideration. (In my defense, I was speaking at a “Families and End of Life” symposium that she had registered to attend.)

Aging is a topic of irrelevance to many people because they cannot wrap their mind around the idea that they will someday be old. It’s not complicated–we all get older (unless we die, of course, which I think is way worse than getting old). However, it’s difficult for most of us to fully grasp that we may someday be the older person who is limited in movement or cognition. We might be the older person who lives at a memory care community, assisted living, or nursing home.

We relate to kids because we are all former kids. In fact, I once heard a six-year-old tell a four-year-old, “I know what you are going through. I used to be four years old.”

None of us are former old people–save those of you who might have been reincarnated. I know what it’s like to be 10, 16, and 19. I don’t know what it’s like to be 79, 86, or 90. Sometimes it’s easier to pretend I’ll never get there and live in denial of the aging process. (I should add that it’s easier to accept the aging process when I see older adults who are healthy and thriving. Although they are typically not my “target” population, there are a lot of them out there.)

As much as I talk about dementia…as much as I talk to people with dementia…as much as I talk to loved ones of people with dementia…I am in denial that I could at some point have dementia. Logically I know it could happen to me, but it won’t happen to me.

When I chat with someone who has dementia, I’d like to tell you that I’m empathetic because I know that someday I could be that person, but I don’t think I really know I could be that person. If I’m being completely honest, I think a little bit of denial is protective for me in this case. If it were constantly in the back of my mind that I could experience dementia, I’m not sure I could hang out with people who have dementia.

I know that the population of individuals with dementia is a population I could join at any point, but it’s just one of those things that won’t happen to me…even though I know it could happen to me. I push any thoughts of being diagnosed with Alzheimer’s, Lewy-Body, or Frontotemporal dementia out of the realm of possibility, and I’m pretty effective at keeping those thoughts buried. I manage to think about dementia without constantly confronting the possibility that I could have dementia at some point.

I can’t judge college students for not wanting be in an environment that forces them to confront death and dementia. I don’t want to confront my own death and potential dementia either. I’m just really good at pushing it out of my mind at will.

My presentation has been rescheduled for this Wednesday. Maybe the last date happened to be a day that just didn’t work out with people’s schedules. Maybe the students planning the presentation didn’t do enough marketing the event. Or maybe I should change the title to “Who’s Going to Get the Final Rose on This Season of the Bachelor and Some Pics of Pug Puppies.”

And when they show up–BAM–switcharoo.

Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.

Let’s see how fast they can run carrying their free pizza.

 

 

 

Two Damn Nancy’s in Dementialand: A Love Story

alzheimer's, caregiver, dementia

If you know me, you know I’m not much of a romantic. However, it’s almost Valentine’s Day. And I’m going to tell you a love story.

Maybe it’s not a traditional love story. But a love story nonetheless.

I met John and Lynn (not their real names–and I’ve changed some details here) at a nursing home that I visited to do a series of trainings. John was in his late 50’s and had younger-onset Alzheimer’s. Lynn, his wife, had married him only a few years early. A second marriage for both of them, they had looked forward to retiring together and traveling the world. Instead, they sat in the lounge at the end of a dim nursing home corridor. She was watching Judge Judy. He was sitting in a wheelchair holding a stuffed bear like a baby.

John’s first symptoms of Alzheimer’s had baffled both of them. A female friend came over for dinner one evening, and he kissed her goodbye–on the lips–quite passionately. When Lynn asked him about it later, he denied it ever happened. Soon, his supervisor at work was calling Lynn to ask if he might have come to work drunk. The diagnosis, Lynn told me, was a relief.

Lynn explained that she kept John at home as long as possible, but they didn’t have enough money for in-home caregivers and she couldn’t afford to quit her job at an insurance agency. Also, John had made her promise that she’d place him a nursing home when it was time…and that she wouldn’t feel guilty.

About the time he moved into the nursing home, he stopped recognizing Lynn. Actually, he started calling her Nancy, which was his ex-wife’s name.

At one point, the real Nancy came with Lynn to visit John at the nursing home. (Interestingly, they were pretty good friends.) They were both curious about how John might respond.

“Holy shit!” he exclaimed in all seriousness. “It’s two damn Nancy’s! What the hell am I gonna do now?”

Lynn and Nancy laughed until they cried, and they started jokingly calling themselves the “two damn Nancy’s.”

As his Alzheimer’s progressed, John spoke sparingly. A friend’s toddler had visited with a teddy bear, and John seemed to find comfort in holding and stroking the bear. Lynn bought him his own stuffed bear. Then a lion. And a bunny. Soon he had a dozen stuffed animals carefully arranged in a recliner in his room. Lynn called it “his zoo.” He rarely spoke to people. He more frequently spoke to his zoo.

After John had been in the nursing home a couple of years, Lynn was diagnosed with stage 4 cancer. Surgery and chemo limited her visits with John. She encouraged Nancy to go see John. After all, Lynn told me with a laugh, they’re interchangeable.

Treatment wasn’t effective for Lynn, and she enrolled in hospice. With limited time left, she got to work. Neither she nor John had any children, so she worried about who would be there for him at the end of his life. She compiled a bunch of information–financial, health, etc.–and made a handbook. She gave it to Nancy, who promised she’d be there.

In the midst of her own terminal cancer diagnosis…sitting next to a husband who doesn’t know who she is and intermittently mutters non-sense to a stuffed bear…as she trains her husband’s ex-wife to care for him after she’s gone…somehow Lynn is okay.

Maybe she is a wise Zen-type person who has found inner peace. Maybe it’s her faith. Maybe she’s on some awesome painkillers. I want to ask, but I don’t know how to phrase the question. Whether it’s Zen, faith, or painkillers, I want some.

Lynn knows John won’t miss her when she gone. She considers this a blessing.

“They won’t tell him when I die,” she says. “He won’t understand so there’s no point. He won’t have to be sad.”

Then she says something that I haven’t stopped thinking about: “The best thing is that he won’t even notice I’m not around anymore.”

I feel like there’s a love story in there somewhere, right?

 

 

Why You Shouldn’t Start Statements with “At Least” in Dementialand (And Elsewhere)

alzheimer's, dementia, lewy body dementia, pwd

I read something recently that made me think.

A woman who had been through a heartbreaking crisis that ended in the death of her infant suggested that people who try to console others should avoid statements that start with “At least…..”

This didn’t impact me at first–but then I thought about all the “At least” statements we throw around, trying to help but hurting.

When a woman has a miscarriage, we tell her at least she can have another baby.

When a married couple can’t get pregnant, we tell them at least they can still adopt.

When a person dies suddenly, we say at least they didn’t have to suffer.

When a person dies slowly, we say at least you had time to say goodbye.

When parents lose a child, we say at least they have other children.

These statements come from people who are well-meaning. They come from people who are trying to help…but they don’t help. They don’t help at all.

There are other (less dire) times that we hear statements like this. Last semester I was on a time-consuming, although rewarding, work committee that was somewhat stressful and required me to sacrifice a few weekends and many evenings. As some other committee members and I were sitting around at a hotel bar after a day of tiring meetings and venting about the experience, one of them said to me, “At least you don’t have kids.” Um. Thanks. (I guess not having children makes my time less valuable.)

Statements that start with “At least” are often made to those in Dementialand. Here are some comments that families have relayed to me or that I have overheard:

At least it’s not cancer. (Comparing who has the worst disease is seldom helpful to anyone.)

At least it’s not terminal. (Ummmmm….insensitive and also inaccurate.)

At least you have a great family. (One guy told me a friend said this to him and he responded, “Yeah, and I love the idea of putting them through this.”)

At least it’s not something physical. (This one typically comes from someone without a knowledge of dementia.)

At least it’s something that progresses slowly. (I find that the idea of the slow progression is one of the scariest pieces of dementia to some people.)

At least there’s a medicine you can take for that. (Yeah–but the medications don’t slow or stop the disease.)

At least you won’t know what’s happening when things get really bad. (REALLY?)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful. The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting.

 

 

 

Urinary Tract Infections in Dementialand

alzheimer's, alzheimers, dementia, pwd

For better or worse, dementia progresses slowly. If someone with dementia shows a sudden behavior change, my suggestion is always to consider whether they might have pain that they are unable to express verbally.

Obviously, pain can be a result of numerous physical conditions–but I recommend checking for a urinary tract infection (UTI) first. People always think I have some sort of magical powers when I correctly diagnose a UTI without seeing their loved one (and without being a medical doctor), but I’m just playing the odds.

UTIs are incredibly common among those with dementia.

First of all, dementia causes individuals to have a compromised immune system. Once a UTI sets in, it may spread quickly. I can think of about ten people with dementia that I have known who have passed away as a result of a UTI that was identified too late and not contained. Yes, UTIs can often be fatal in those with dementia.

A UTI can cause “delirium,” an acute state that might include hallucinations, delusions, agitation, and restlessness. For someone who typically shows symptoms of dementia, it often appears that their condition has worsened quickly. These sudden changes are not a result of dementia but rather an indicator that the person has another health issue.

Sometimes a person with dementia expressing UTI symptoms might be mistaken for being overtly sexual. For instance, I have known several of men whose loved ones were called by the nursing home staff because they were taking off their pants and fondling their genitals in front of other residents. In many cases, a quick urinalysis will show a UTI.

At the risk of TMI (e.g., too much information), I have had urinary tract infections. In a span of 24 hours, I have gone from “something might be wrong” to the type of pain that is constant and disrupts sleep. It is horrifying to me to think of not being able to express this pain to others around me and seek help. However, I have seen many individuals with dementia be accused of giving their caregivers a “hard time” when in fact they had no other way to express that they were in pain. (Even worse, this happens with kidney stones.)

Dehydration can also be an issue with people who have dementia, and dehydration makes one prone to UTIs. It’s important to keep fluids in reach of someone with dementia when they may not remember or be motivated to get beverages on their own. People should also be encouraged to use the restroom frequently. Not surprisingly, poor hygiene can increase one’s risk. If someone lives alone and doesn’t remember to change their underwear, it’s likely that they will eventually end up with a UTI.

So…here are some of the changes in people with dementia that caregivers have noticed when a UTI had set in (note that is not an all-inclusive list):

  1. The person is unusually cold or hot for the environment (shivering, fever, etc.).
  2. The person sleeps a lot more than usual–or the person doesn’t sleep when sleeping is usually not a problem.
  3. The person grabs at their genitals or tries to take their clothes off.
  4. The person becomes incontinent.
  5. The person becomes aggressive toward themselves and/or caregivers.
  6. The person appears to be in pain when urinating (perhaps indicated by change in body posture or facial expression).
  7. The person starts to fall more often or have issues with balance.
  8. The person is suddenly much more confused than usual.

Obviously, some of these are symptoms of dementia, but keep in mind that dementia is a slow-moving condition. Changes that occur quickly may be a result of a UTI or another medical condition.

A woman I know was recently concerned about how quickly her mother’s Alzheimer’s was progressing. In a period of about 72 hours, she went from being calm and good-natured to lashing out when someone tried to assist her. She was suddenly confused about who her daughter was and her environment. She also refused to get dressed and would fight anyone who tried to convince her to take off her nightgown. I was asked if it’s normal for Alzheimer’s to progress so quickly.

Although aggression and confusion are part of Alzheimer’s, it’s not normal for these changes to occur so quickly. I suggested starting with a urinalysis. Sure enough, she had a raging UTI.

I often tell caregivers to bring a urine sample (if possible) to any doctor’s office visit. The good news is that a urine screening is fast and cheap. The bad news is that collecting urine might become more challenging as dementia progresses.

I recently heard the term “dementia detective.” The term was used to describe someone who pays attention to someone with dementia with the goal of figuring out their needs. We need more dementia detectives.

When someone with dementia shows changes in behavior, we need to stop saying that they are giving us a hard time. We need to understand that they are having a hard time.

And sometimes when they are having a hard time, it’s because they are experiencing pain.

 

 

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!