Tag: confusion

What If I Visit and They Don’t Know Who I Am?

Care partners regularly ask me about one of their deepest fears. The fear usually goes like this: at some point, you’ll walk in to visit your loved one, and that person will look at you with a blank stare. “Who are you?” they’ll ask you, as your own eyes fill with tears. Here’s the good news: this fear is mostly nonsense; a myth perpetuated throughout modern society through movies and TV shows. I blame 2004′s “The Notebook” for about half of it. Spoiler alert: if you haven’t seen The Notebook (it came out in 2004, so if you haven’t seen it yet, I doubt you will) — one of the main characters has dementia and her husband comes to read to her every day. She seemingly has no idea who he is, until, suddenly, she remembers everything about him and their past together. Then, just as suddenly, it’s all gone and she’s screaming, crying, “Who are you?! Help me, help me! Who is this man!” Frankly, it’s nonsense. That’s not how dementia works. Yes, people do have more “lucid” moments sometimes, especially when a person has something like Dementia with Lewy Bodies or Parkinson’s disease dementia, but COMPLETE clarity to ZERO clarity doesn’t exist. (If you’re still doubting me, watch that movie and let me know your thoughts…it’s totally Hollywood!) If your loved one doesn’t seem to “know who you are,” it’s not because they don’t love you. It’s not because they don’t know you. It’s not because they don’t recognize you as an important person. It’s because they can’t figure out how you fit onto their timeline. As an example, if you are 65 years old and your father remembers you being only 35, he’s going to wonder who this lovely 65-year-old woman is when you walk through the door. “Wow!” he thinks. “I know I like this person, I know she looks familiar…but from where?” In his mind, you’re 35, not 65. He may call you his wife, his sister, or another female relative or friend. This makes sense, right? I call this idea Timeline Confusion(TM). In this situation, we don’t want to spend time saying things like, “Dad! Don’t you remember? I’m your daughter!” Instead, it’s best to go along with where his timeline is. If he thinks you are your mother, that’s okay. If he suddenly begins touching your thigh, it’s okay to move away and come up with an excuse, but if he just wants to spend time with you, don’t exert effort trying to force him onto your timeline. If the person living with dementia is your grandparent, there may be a very good chance that, in their mind, you don’t even exist yet! If they think of themselves as being your age, how the heck would they have grandkids? I’ve met a LOT of people living with dementia. I’ve only seen this Timeline Confusion happen a handful of times: most of the time, people recognize their loved ones on their timeline throughout the entire course of the disease. If Timeline Confusion DOES happen to your loved one, it will happen slowly. If something changes suddenly, it’s because there’s a medical problem: they may have a Urinary Tract Infection or suffered a small stroke. Change like this doesn’t occur overnight. When you’re seeing a loved one after not seeing them for a bit, introduce yourself slowly. You might walk into the room and say, “Hi! How are you today?” and see what their reaction is. Allow them to identify you. If they struggle, don’t say, “I’m your daughter, Rachael!” but say, “I’m Rachael.” Allow them to tell you who “Rachael” is to them. For more on all this good stuff, check out my eKit on Embracing Their Reality(TM).

March 7, 2021

16 Things I Would Want If I Got Dementia

I wrote “16 Things I Would Want If I Got Dementia” back in 2014. I later added four more items to make it 20 Things I Would Want If I Got Dementia. Please note: the one available here on my site is the only one that you should ever repost, and it must be reposted as an image. The idea for the list came to me while I was driving my car, and I pulled over and jotted down a quick note in my phone. If I had known what it would later become, I never would’ve put it on the Internet as a simple text-based poem: I would’ve turned it into a PDF or JPEG image immediately. About every 6-12 months, someone rediscovers my poems from the depths of Facebook and reposts it to their feed. It will read something like, “Copy and paste this if you have a loved one with dementia!” It never has my name. Sometimes, it’s attributed to “author unknown.” This is particularly frustrating. I want to scream, “The author is known! She’s right here!” Often, someone will add something to the copy/paste poem that is incorrect. As an example, they may tell people to introduce themselves and their relationship to a person living with dementia. “No!” I want to cry. “Please don’t do that in that way!” But I can’t. By then, the poem has thousands of likes and hundreds of comments. Typically, some type of “influencer” will spot it, repost it carelessly, and from there it’s off to the races with incorrect information and without my name. This happens about every six months. You may be thinking, “So what? At least your great information is out there to help people.” If you’re feeling this way, I can almost guarantee you’ve never created something that was then taken from you, altered slightly, and tagged as “creator unknown.” There’s a weird, heart-racing feeling I get every time a friend sends me a screenshot of the poem they spotted on their feed. “Hey Rachael, I just saw your poem again!” Ugh. We’ve started sending intellectual property lawyers after these copyright violations, mostly because it’s too painful for my team and I to try and do it ourselves. 75% of the time, people are very nice and will take it down or repost with the image without a battle. The other 25% of the time, the person will launch into a personal attack. “WOW! I thought you wanted to help caregivers but you must be a terrible person because you won’t let me keep this poem on my website!” I don’t know why asking for them to add my name and website, or simply adding the downloadable image, makes me a bad person…but apparently, it does. Now, we try our best to take ourselves out of the equation: we send to the lawyers, I close my eyes as I hit the “pay” button on their invoices.

March 17, 2019

Don’t ask someone with dementia if they “know your name” or “remember you”

If I can, I always opt to ditch my name tag in a dementia care environment. I let my friends with dementia decide what my name is: I’ve been Susan, Gwendolyn, and various peoples’ kids. I’ve been so many identities to my residents, too: a coworker, a boss, a student, a sibling, a friend from home, and more. Don’t ask your friend with dementia if they “remember your name” — especially if that person is your parent, spouse, or other family member. It’s quite likely to embarrass them if they can’t place you, and, frankly, it doesn’t really matter what your name is. What matters is how they feel about you. Here’s my absolute favorite story about what I call, “Timeline Confusion”: Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her. Nick was probably one of the best caregivers I’d ever met. It wasn’t just that he visited his mother often, it was how he visited her. He was patient and kind—really, he just understood dementia care. He got it. Alicia was what I like to call, “pleasantly confused.” She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life. One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, “How do you do!” “Hey, Alicia,” I said. “We’re having a piano player come in to sing and play music for us. Would you like to come listen?” “Ah, yes!” she smiled back. “My husband is a great singer,” she said, motioning to her son. Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, “We’ll be over there soon.” I saw Nick again a few minutes later while his mom was occupied with some other residents. “Nick,” I said. “Does your mom usually think that you’re her husband?” Nick said something that I’ll never forget. “Sometimes I’m me, sometimes I’m my brother, sometimes I’m my dad, and sometimes I’m just a friend. But she always knows that she loves me,” he smiled. Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline. He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he would’ve been a teenager. Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man. This is the concept that I like to call timeline confusion. It’s not that your loved one doesn’t recognize you, it’s that they can’t place you on a timeline. What matters is how they feel about you. Not your name or your exact identity. Are you receiving my emails? Sign up now!

July 24, 2018

Dementia gives us gifts, let’s not reject them

It had been six months since I’d seen Dot, my favorite resident. Dot was what I like to call “pleasantly confused.” She was in her mid-90s, had Alzheimer’s, and just enjoyed everything. One thing that I remember about Dot was that she missed her husband a lot. They had been married for decades, and his passing was probably the worst moment of her whole life. Dot would often say to me, “I miss my husband. He was such a good man.” We’d talk about their trips together: the time he was asked to go on a business trip to Italy, but he said he’d only go “if he could take his wife!” Dot went along, and the two of them had a wonderful time. I don’t think more than a couple days passed without Dot mentioning how much she missed her husband. She’d always say it with a wistful little smile, like she was remembering the good times. Still, it made me sad. Six months went by after I moved up to Pittsburgh, PA. When I went back to Greensboro, NC to visit my friends down there, I stopped by the place I used to work to visit Dot. She recognized me immediately. Interestingly, Dot (and every other resident I’ve ever worked with) never knew my name. She knew me, though, all the same. I was the blonde lady who brought her the newspaper and took her on outings. Dot had tears of happiness in her eyes as she introduced me to her fellow residents. “This is my old friend!” she told them. We got to talking, and she told me about how she worked during the day, but stopped here for lunch. I knew immediately her “timeline” had changed since the last time I’d seen her. “And my husband!” she said, suddenly. “He’s on a business trip right now, but he’s getting back tonight. Oh, I can’t wait to see him!” she smiled. I was surprised to hear this news, but I smiled, too. He’s back, I thought. “That’s great, Dot!” I said. “Do you think y’all will go out for dinner?” We had a great conversation about her husband that afternoon—because he was back in her life. He was alive again. Dementia gives people gifts, sometimes. It brings back happy memories and it brings people who have left back to us. Never reject that gift.

July 26, 2017

"You’re not my son.”

Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her. Nick was probably one of the best caregivers I’d ever met. It wasn’t just that he visited his mother often, it was how he visited her. He was patient and kind—really, he just understood dementia care. He got it. Alicia was what I like to call, “pleasantly confused.” She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life. One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, “How do you do!” “Hey, Alicia,” I said. “We’re having a piano player come in to sing and play music for us. Would you like to come listen?” “Ah, yes!” she smiled back. “My husband is a great singer,” she said, motioning to her son. Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, “We’ll be over there soon.” I saw Nick again a few minutes later while his mom was occupied with some other residents. “Nick,” I said. “Does your mom usually think that you’re her husband?” Nick said something that I’ll never forget. “Sometimes I’m me, sometimes I’m my brother, sometimes I’m my dad, and sometimes I’m just a friend. But she always knows that she loves me,” he smiled. Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline. He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he would’ve been a teenager. Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man. This is the concept that I like to call timeline confusion. It’s not that your loved one doesn’t recognize you, it’s that they can’t place you on a timeline.

June 20, 2017

Elsie & The Boy Who Wasn’t There

Elsie had been acting strangely for a couple days now. It was our morning meeting, and the team had assembled in the dining room to talk about our residents. I liked this practice: it gave us a chance to talk about each resident, which made everyone in the community important. Every resident was spoken about, and every staff member was there to comment. Elsie had managed to stay in the dining room, and, as was the practice, we didn’t ask her to leave. We carried on with our meeting, using only first names for residents. Elsie had Alzheimer’s disease and was generally very high-functioning. She could get herself dressed, participate in activities, and walk without much assistance. Today, however, Elsie was off. “Can someone get this little boy a glass of water?” she asked, nicely. Elsie patted the invisible boy on the head. “What a nice young fellow you are,” she smiled. “And…we need to get her checked for a UTI,” I said, nodding to Elsie. “Can someone get her friend a glass of water?” A couple of the staff members looked at me strangely. “But, there’s no–” one started. “Yes, I know, but I’m sure Elsie would like the water, anyway,” I explained. One of the CNAs dutifully went into the kitchen and brought out a glass of water, which Elsie held to the invisible boy’s lips. (Thankfully, she didn’t hand it to him.) Normally, Elsie did not hallucinate, so we knew something was wrong. As it turned out, she did indeed have a UTI (urinary tract infection) and this was causing a good deal of extra confusion. Here’s a quick article with more info on this topic.

June 10, 2017

In dementia world, you can live wherever you want

Picture from Klavon’s in Pittsburgh, PA (2017) I was busy setting up an old fashioned “ice cream parlor” look where the Nurses’ Station was at the dementia care community. The Nurses’ Station wasn’t going anywhere, of course, but it really did make the place look like a hospital. I didn’t want that. I wanted the residents with dementia to feel like that counter was a pleasant place, and a reminder that they lived in a location that would protect and care for them. So, I was turning it into a “5 & Dime” store, with the idea that this particular spot would be one of those old-timey ice cream soda fountain areas. One of the residents and her daughter sat nearby. The daughter smiled. “You know what’s funny,” she said to me as I hung up a “ICE CREAM FLAVORS” sign. “My dad used to live here, too,” she said. “And when he did, he really did think that this counter sold ice cream floats,” the daughter laughed. “So this is pretty cool.” I loved that story. This made me feel even better about recreating this counter space into something that the residents would recognize. It also reminded me that, in dementia world, you can live wherever you want to live. I have had a few residents who told me that we “were sailing on a cruise ship” when we were really just walking down the hallway of a care community. It makes sense, though: long hallways may remind them of a cruise ship, and some people with dementia get dizzy walking around or standing up too quickly. Wouldn’t you rather believe that you’re taking a vacation than living in a dementia care community? In that way, embracing someone’s reality and making their environment match that reality…is really priceless.

January 6, 2017

Lunch & Old Friends

A memory of mine from two years ago: I had taken a few of my residents out to lunch when I noticed a woman across the restaurant quietly observing us. It’s not uncommon for me to get a few looks or smiles when I’m out with my residents, but this woman looked as though she wanted to speak to us. A minute passed, and the woman from across the room walked over to our table. She was older, perhaps in her late 70s. She smiled at one of my residents, Ruth, and gently touched her on the shoulder. “You look so familiar to me. I know you from somewhere,” the woman said. Ruth looked up at her. “You look familiar, too!” she responded. “What is your name?” the woman asked Ruth. Ruth told her, and the woman smiled. “My husband worked with you at the department store down the road for years. Do you remember James Quinn?” the woman asked Ruth. I bit my lip. She doesn’t know that Ruth has dementia, I thought. Fortunately, Ruth’s long-term memory is very much intact. “Oh! James Quinn! He is such a lovely man! He was my manager at the department store,” she smiled, clutching the woman’s hand. The woman’s eyes twinkled and she held Ruth’s fingers in hers. “He was a wonderful husband,” she said. “Unfortunately, he passed away last year.” “Oh, I’m so sorry,” Ruth replied. The woman told Ruth a couple more stories. Ruth smiled and asked questions. “Now, your husband…did you say that he had passed away?” Ruth asked. The woman looked slightly confused. “Well, yes, sadly, he died last year. A long battle with cancer,” she explained. The two exchanged a couple more words and gave each other a hug. The woman left the restaurant. Ruth turned to me. “I didn’t have the heart to ask if her husband James was still alive,” she whispered, eyes wide. “I’m sure he’s doing fine,” I replied, softly. “I hope so. He was such a nice man,” Ruth said, thoughtfully.

August 6, 2016

“Dad, do you remember my name?”

Oh, please don’t ask him that, I thought to myself. The old man stood in the doorway, smiling, confused; an uncertain grin, looking at his two sons and daughter-in-law. “Dad, don’t you remember me?” the one son repeated again. “He doesn’t know what year it is,” I whispered under my breath, unsure of who I was even whispering it to. Mel, still smiling, still confused, said, “…You’re all grown up now?” “He doesn’t know what year it is,” I repeated, this time to one of the sons, the more arrogant one, in an attempt to explain that Mel had no idea why his sons, who he thought were 13 and 15, were now 55+ years old. “Oh, it’s okay,” the more arrogant son said. He turned to his wife, motioning to the woman. “Hey, dad, remember my…girlfriend?” he asked, winking at me. It was a little late to play the now-we-are-all-on-board-with-the-dementia-timeline-confusion-game. Mel was pretty sure that his wife was coming to pick him up, that his sons were young men, and now, seeing his grown, adult sons in his doorway, he was confused. And of course he was! We would all be confused. His sons visited infrequently, and every time they did, Mel was more confused about his own timeline. He didn’t know what year it was. Why would he recognize his grown adult sons when he expected them to be children?

July 24, 2016

Mistaken for a Man.

“Get away from him! That’s my husband and he wants to come with me!” Gladys yelled. Gladys stood, holding Margaret’s walker, pointing at her female companion. A number of staff members crowded the pair, attempting to extricate Margaret from Gladys’ grasp. They had to get Margaret into the bathroom, but Gladys was trying to pull her elsewhere. Afraid that Margaret would fall, a staff member began to argue with Gladys. “That’s NOT your husband, Gladys! This is a woman named Margaret!” Gladys was enraged. “You think I don’t know who my own husband is?” she cried out. The problem stemmed from a few things: 1. Margaret had very short hair, which confused a number of the residents. Gladys was not the first, nor the last, to mistake Margaret for a male. 2. Dementia changes a person’s perception and reality. Just as many people with dementia believe that baby dolls are real, Gladys believed that this woman was a man. The best approach here would have been two-fold: 1. Stop arguing immediately. No one would have convinced Gladys that Margaret wasn’t her husband, so it was just agitating her further. 2. If the staff needed Margaret without Gladys, they should have distracted Gladys while getting Margaret to follow them. Arguing—or reality orientation—is NEVER the answer.

March 31, 2015