Monthly Archives: March 2017

A Special Tuesday Message From Dementialand

dementia

Hi friends!

If you don’t reside in Northeast Iowa, consider this a message to remind you to have a great Tuesday. You can stop reading and carry on with your day.

If you are lucky enough to live in Northeast Iowa, this is a special Tuesday post to let you know of an educational event I will be having on the University of Northern Iowa campus.

At 7 pm on Wednesday, April 12, I will be presenting  Changing Perspectives: Dementia and the Senses. You can check out this flyer for details:

Changing Perspectives April 12

To answer a couple of questions proactively, it is free and it will last until I am done talking (maybe 8:15-ish?) or everyone gets up and leaves, whichever comes first.

If you are interested in coming but unfamiliar with campus (and have no idea how to find Schindler Education Center 220), here’s a map to help you out…. Campus Map

A couple recommendations…stop at Sidecar on College Hill and get some coffee and a cookie before the presentation–you can see it on the map.

And come a few minutes early. I did offer my college students extra credit for their attendance, and college students are willing to trample others in the name of extra credit.

That’s all. Continue with your Tuesday.

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

 

 

 

 

 

 

 

 

Spring Break in Dementialand

dementia

I’m not writing a blog post this week because it’s my spring break. Although I wish I was basking in the sun in a tropical destination like Cancun, nothing could be further from the truth. I am sitting in my living room in Cedar Falls, Iowa, while we experience winter’s last hurrah. We are expecting somewhere between six and nine inches of snow.

If you read my blog last week, you know that I invited you to submit questions. You were welcome to write them in the comments box or email me. Let me just say that I got plenty.

And I will start attacking them next week.

 

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!