Category Archives: alzheimers

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.

 

 

 

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!

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.

What You See in Dementialand

alzheimer's, alzheimers, caregiver, dementia,

This is the fifth of a series of five posts about the senses in Dementialand.

Today we focus on sight.

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when a woman with Alzheimer’s suddenly became very upset.

“Who is watching the children?” she kept asking me. “They are going to get hurt.”

I wasn’t sure what children she was referring to, but I tried to assure her that they were safe. She wasn’t having it.

“They are going to hit each other with that stick and no one will know,” she said. She was becoming agitated, so a staff member removed her from the activity. As she was walking down the hallway, she kept looking back at me and shouting about how I needed to care more about children.

As I wrapped up the activity about fifteen minutes later, I packed up my equipment and turned around to leave. I realized that there was a picture on the wall behind me. The picture was a large framed image of several small children playing baseball. One of the children was holding a bat.

At that point, I realized that this woman’s concern was valid based on how she was viewing the world. It was likely that she saw the picture behind me and thought it was a window. She thought there were children outside of that window playing baseball with no supervision. She saw the child holding a bat (or a “stick”) and was concerned that they were going to get hurt.

Instead of listening to her concern about the children, we had dismissed her and removed her from the situation. No wonder she was frustrated.

Sometimes people with dementia confuse pictures, especially larger ones, for real-life scenes or windows. I also find that they may misinterpret coat racks for people. I was recently asked if the man in the corner would be joining us for lunch. I looked to the corner to see a coat rack with a single coat hanging on it and a hat sitting on top. I told my friend with dementia that I thought that man had already eaten lunch.

Changes in the visual-perceptual system can impact eating. A person with dementia may not see mashed potatoes on a white plate. I know a woman with dementia who refused to eat a piece of lasagna (her favorite food) because she swore there were fleas on top of it. They were actually tiny oregano flakes, but her family could not convince her. She only ate it when they took away that piece and returned with a piece of lasagna with the oregano scraped off.

At a caregiving seminar recently, a woman told me about her husband who ended up in the hospital with dehydration. He had complained about thirst, but when she brought him water he didn’t drink it. She realized later that he couldn’t recognize that there was water in the glass, so he thought it was empty. Her solution to the problem? She added a very small amount of Crystal Light to the water so he could see the fluid in the glass.

Depth perception often becomes an issue with dementia. Again, it’s not that there’s necessarily a problem with the eyes. It’s that the brain struggles to make sense of what the eyes see. Compromised depth perception is often problematic when it comes to flooring. Rugs may look like holes in the floor. Someone might refuse to step onto a blue floor because they believe it’s water. A change in flooring surface may look like a large drop-off. Shiny flooring may appear wet or slippery. Sometimes people have a problem telling where the floor ends and wall begins. It can be helpful to paint the baseboards a contrasting color.

People with dementia might struggle with visual distractions. Keep in mind that the dementia brain has to work hard to interpret visual data. Trying to interpret too much at a time can lead to irritability and agitation. As strange as it might sound, someone might have difficulty focusing on the TV if there is a loud patterned wallpaper on the wall behind the TV. Visual “noise” can keep a person with dementia from being able to focus on what is important visual information. (And you can tell how I feel about wallpaper by my description of it as visual “noise.” On a related note, it takes several weeks to destroy that visual “noise” with chemicals and razor blades when you move into a house whose previous owners obviously found wallpaper quite pleasing.)

It’s important to remember that people are visual data. We know that sometimes people with dementia forget their loved ones or mistake them for others. They don’t recognize their daughter. Maybe they think their grandson is their son. Perhaps they think a nursing home staff member is their mother. Of course, much of this is due to compromised memory.

Sometimes, however, a person with dementia simply needs more time to process the visual image of a person. Let’s say you visit your grandma who has Alzheimer’s. Walk into the room. And then stop about four feet in front her. Just pause. Allow her to process you visually as a still (not moving) image. This gives her the best opportunity to recognize you, and–even if she doesn’t recognize you–she is less anxious as you move toward her. Just like you should give someone with dementia plenty of time to process a question after you ask it, you should give them plenty of time to process an image you put in front of them.

The more I work with people with dementia, the more I realize that their behavior makes sense if I can figure out how they see the world. It’s just that figuring out how they see the world sometimes takes a bit of detective work.

 

What You Hear in Dementialand

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

This is the fourth in a five part series about dementia and the senses.

Today we will focus on hearing.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and the same examples–except in a much louder voice.

Here is my weakness: If someone doesn’t understand what I’m saying, I just say it again…in a louder voice.

I tend to think that my original explanation was so clear that the only reason the other person would need clarification is because they have a hearing problem. If you are thinking that I overestimate my own eloquence, you may have a point.

Chances are that I used a loud voice in the first place (no one has ever complained that my voice isn’t loud enough), and chances are that the person doesn’t have a hearing difficulty. It’s likely that my explanation isn’t resonating with them for some other reason. Yet, I just repeat the same explanation that doesn’t resonate–but louder. It’s not helpful.

My weakness tends to extend beyond explaining concepts to college students. If something I say doesn’t make sense to my husband, I’ll just say it louder to clarify. I know it’s not productive, but I do it anyway. If I’m at a work meeting and make a statement that results in quizzical looks from my colleagues, I usually just repeat the statement again. And I step up the volume, of course.

Unfortunately, I do the same thing to my friends with dementia. If I ask someone with dementia a question and don’t get a response when I expect one, I figure they didn’t hear me, so I ask again in the exact same way–except louder. And, I will add, that my louder voice probably also conveys irritation even if that’s not my intention.

People with dementia may have hearing difficulties due to age or other factors, but dementia itself doesn’t impact your ears. However, it does impact how you interpret auditory data.

Sometimes I forget that people with dementia need a bit longer to process any question I ask. I have to force myself to silently count to ten as I wait for a response. After ten seconds, I force myself to rephrase (not just repeat) the question. Maybe I use more hand motions or pointing. Maybe I use a different word for an object. I change something…something other than the volume.

People with dementia often have trouble focusing on the important auditory information and blocking out the rest. While I may be able to have a conversation with the TV turned on, someone with dementia typically finds it easier to focus on our conversation with the TV turned off. When a person with dementia is struggling to have a conversation with me, I look for extraneous auditory data that can be eliminated. Can I shut the door so we can’t hear the conversation of the people in another room? Can I close a window so the noise of the cars driving down the street isn’t a distraction?  Can I turn off the washing machine temporarily so my voice doesn’t have to compete with the swooshing noise?

It’s not that the person with dementia can’t hear over these other sounds. This isn’t a matter of volume. It’s that their brain has to work hard to distinguish important auditory data from unimportant auditory data. They may become tired or overwhelmed after trying to do this for a short time, and we may perceive this as disinterest.

Once I was sitting in a nursing home lounge talking to a man with Alzheimer’s disease. I was struggling to get a response from him. I was likely repeating my questions and increasing my volume. As my attempts at conversation were failing, there was very faint knock from down the hallway. It was a visitor giving a quick tap to a resident’s door before entering their room. I could barely hear the knock and probably wouldn’t have noticed it had the man I was visiting with not responded to the noise.

“Come in! It ain’t locked!” he yelled.

If he could hear that noise, his hearing was obviously not an issue. I closed my eyes for a second and did a quick survey of auditory information.

In the distance, I heard some chatter at the nurses’ station. There was some incessant beeping from residents who had pressed their call buttons for assistance. The window air conditioner in the lounge was making a rattling noise. I could hear the shuffle of nurses’ aides hustling from room to room, and a couple of residents across the lounge seemed to be having a conversation about the weather.

A few moments ago I hadn’t been hearing any of this noise. Sure, I was taking in the auditory data, but my brain was disregarding it in favor of focusing on the conversation I was having. This wasn’t intentional on my part. I did not have to plan to block out all of these extraneous sounds. My brain did that for me automatically.

My conversation partner, who had dementia, was not so fortunate. It’s not that he wasn’t trying to be engaged in our conversation. It’s not that he didn’t care about what I was saying. It was that his mind was not perceiving what I was saying to be any more important than the slightly obnoxious hum of the air conditioning unit.

When we enter Dementialand, we need to set individuals with dementia up for success. In this particular situation, I had not done that. I had asked this man to have a conversation with me in an environment in that was not conducive to the dementia brain. Increasing my volume was not going to help; in fact, a louder voice would likely convey an intensity that would discourage rather than encourage a positive response.

Once I was talking to a woman who had vascular dementia after a series of small strokes. I asked her a question. When she didn’t respond I went to my default next step…I asked her again…only louder. Much louder.

This time she made eye contact with me. She motioned for me to come closer. I figured her voice was weak, and she wanted to make sure I could hear her responses. I put my ear close to her mouth.

“I can hear you!” she yelled in my ear. “I’m not deaf, honey! Stop shouting!”

I guess I deserved that. Apparently this woman would agree with my husband’s assessment of my weakness.

In life…in relationships…and in Dementialand…

Louder is seldom better.

And I’m a work in progress.

Mothers’ Day in Dementialand (aka What You Do Every Day Matters More Than What You Do Once in a While)

alzheimers, caregiver, caregiving, dementia, dementialand

Last week I ran into an acquaintance, Cindy, at the rec center where I teach fitness classes. Cindy is recently retired and in her 60’s. In the summer, she’s an avid outdoor cyclist. When it’s cold or rainy, she comes inside the gym to ride a spin bike.

Her mom, Edna, is in the end stage of Alzheimer’s and resides in a local nursing home. Since her retirement, Cindy typically stops in at the nursing home at least once a day. When the weather allows, she rides her bike.

When I see Cindy, I usually ask how Edna is doing. I feel like Cindy is grateful for the question but struggles to answer it. She feels like Edna is getting good care but at this point doesn’t have much of a quality of life.

“Mom had several good years after her diagnosis,” Cindy has said in the past. “But those good years are over.”

Now Edna stays in bed most of the day. Sometimes the staff puts her in a wheelchair, but she slumps over. She doesn’t speak. She hasn’t recognized anyone for a while now. It’s a struggle to get her to eat. She’s incontinent. She has what Cindy refers to as “glaze eyes.” It’s like she’s looking through people rather than at them. Her immune system doesn’t function well (yes, this is a symptom of end stage Alzheimer’s) so she’s constantly battling urinary tract infections and infected pressure sores.

When I saw Cindy last week at the rec center, she blurted out, “I think I’m a bad person. I’m not going to visit Mom on Mothers’ Day.”

Cindy told me that her own daughter and granddaughters live about four hours away. She’d be headed to visit them on Mothers’ Day, and there just wouldn’t be time to visit Edna.

Cindy had mentioned to a few people that she wouldn’t be going to see her mother at the nursing home on Mothers’ Day. They asked if Edna would have other visitors. Nope. She would have no visitors. Cindy felt like these people responded as if she was a horrible monster.

“So I’m leaving my poor mom alone at the nursing home on Mothers’ Day,” she said as her eyes welled up with tears.

It didn’t matter that Edna would not know it was Mothers’ Day or even that she was a mother. It didn’t matter that Edna wouldn’t acknowledge Cindy when she showed up or that Edna wasn’t capable of having a conversation. It didn’t matter than Edna might even be asleep for the entire time her daughter was there.

Not visiting your mother at the nursing home on Mothers’ Day still makes you feel like a loser.

And Cindy…is anything but a loser as a daughter. She invited Edna to move in with her and her own husband after diagnosis. When Edna’s care become too much for them, she researched nursing homes and found the absolute best option for care. It was a rare day when she didn’t stop by at least once, even after her mother stopped recognizing her. She made a special effort to thank the staff when they went out of their way to care for Edna. She even took her mom’s laundry home once a week and did it herself.

As Cindy was telling me about how she made the difficult decision to leave town to see her daughter and granddaughter for Mothers’ Day, my mind wandered to the people I’ve met who do visit their moms with dementia at the nursing home on Mothers’ Day–but rarely on other days. They go on Mothers’ Day because it’s Mothers’ Day and that’s what you do. Yet Mothers’ Day is only one day. Where are they the rest of the time?

I can’t be a jerk to my mom 364 days a year and make up for it by taking her out for an expensive Mothers’ Day brunch and buying her flowers. It doesn’t work that way for any of us, whether our mothers are well or sick.

I’m not saying Mothers’ Day isn’t important. I am saying that what you do most days is more important than what you do one day, even if that day has a special label.

One of my favorite authors is Gretchen Rubin, who wrote The Happiness Project, a book that changed the way I look at habits and happiness. A quote from her book that stuck with me is: What you do every day matters more than what you do once in a while.

It’s a pretty simple concept, but it’s helped me to change my life in subtle but meaningful ways. I have to create a daily life that reflects my goals and values. For instance, I have to be kind to the people I come in contact with each day to be a kind person. I can’t just go on a mission trip to a third world country once a year and call it good. My priorities have to be shown in my actions each day, not just once in a while, or they really aren’t my priorities.

I think about this in terms of marriage. If you’re not nice to your spouse every day, you can’t save your marriage by going on a romantic trip once in a while.

I think about it in terms of health and fitness. It’s better to consistently incorporate more walking into your daily life than go for an occasional run.

Your daily routine matters. Your life is made up of your daily routines. Cindy’s routine tells me that her mother is a priority to her…that she’s a caring person…that she’s doing the best she can.

I fumbled to explain my thinking to Cindy.

Finally, I asked her what advice she would give her daughter if she were in a similar situation on Mothers’ Day.

“Oh, I’d be angry if my daughter chose sitting in a boring nursing home on Mothers’ Day when she could be playing with her beautiful granddaughters,” she said.

As we parted ways, I said awkwardly, “Have a happy Mothers’ Day. You’re not a bad person!” (The term awkward is an understatement in this case.)

I have no doubt that Cindy was at the nursing home Saturday. I have no doubt she will be there today.

I hope she has found peace with not being there yesterday.