#rachael wonderlin

[dementia-by-day]

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.

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[amj2101]

[AMAZON]: Believable Babies "Sarah" Reborn Girl- Doll Therapy for People with Memory Loss with Aging and Caregivers

[AMAZON]: Believable Babies "Sarah" Reborn Girl- Doll Therapy for People with Memory Loss with Aging and Caregivers

Believable Babies “Sarah” Reborn Girl- Doll Therapy for People with Memory Loss with Aging and Caregivers List Price: $340.00 Believable Babies are adult appropriate, realistic looking baby dolls developed with input by Memory Care Director, Rachael Wonderlin, MGS of PA. Rachael’s blog is at http://www.dementia-by-day.com Believable Babies can provide loving comfort, a sense of security, and are…

[dementiadesignforum-blog]

16 things I want if i get dementia

So much more than a wish-list. In the nicest possible way, Rachael Wonderlin has created this gentle yet powerful reminder that a person with dementia is still a person.

1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.....read more

[dementia-by-day]

How to call someone who isn’t alive anymore

This post is inspired by a question I received the other day on my Facebook page about my podcast. (So many mediums to find me!) Anyway, this reader asked about her mother, who constantly wants to visit and call her own parents. My reader is distraught by how frustrated her mother is—“Why don’t they ever visit or call me?”—and doesn’t know what to tell her. I completely understand, and I have a solution based on something I actually did years ago.

About three years ago, I was working at a dementia care community and sitting in my office when one of my residents approached. “Hey hun,” Renata started. “Can you help me with something?”

“Of course,” I smiled. “What’s up?”

“Well,” Renata paused. “I...haven’t heard from my son in a while...do you think I could use your phone to call him?”

Damn it, I thought. Renata’s son had died a couple years earlier. Certainly, I did not want to remind her of this awful fact, but how could I help her? She was asking me a very direct question with a very obvious solution. I thought quickly and responded, “Sure!”

I picked up my office phone and dialed my cell phone’s number. I waited until it rang a few times and heard the start of my voicemail, “Hi, you’ve reached Rachael Wonderlin...” and turned to Renata. “It’s going to voicemail,” I said. “Would you like to leave him a message?”

“Oh yes,” she said, accepting the phone. “Hi Lenny, it’s your mother...I hope you’re doing well, just wanted to check in with you. Please call me back soon and let me know how you’re feeling.”

She hung up and handed the phone back to me. “Thanks, hun,” she said, sighing lightly. “I feel a little bit better.”

Renata never asked about calling her son again. Instead of solving the FACTUAL problem—whether or not she could actually reach this man—I solved the emotional one.

This is how you solve a dementia-related “problem” like this: focus on the emotional problem, not the physical, tangible one. Use the tangible things around you to help the person feel better, like a phone call. Never, ever use these tangible things to convince that person that their loved ones have passed away. Instead, find ways to make them feel like they’ve done what they set out to do.

Learn more about what I offer.

[dementia-by-day]

People with dementia WILL move your stuff around

...and that’s okay, because it’s really normal.

This is a hard thing for a lot of caregivers, including ones who work in senior living communities. 

Everywhere that I have worked, I’ve set up different interactive stations for my residents with dementia. These stations include places like a baby doll nursery or even an interactive kitchen. 

Anytime I’ve set one of these places up, some members of the staff complain. “But the residents take the baby dolls!” they’ll say. “They put them in their rooms and then we have to go get them.”

My response is always the same: “So what?”

The point of these interactive stations is for residents to do just that: take items that interest them, and move them around. Is it a little annoying when things go missing? Yes, of course it is. But, that’s the point: residents should be able to interact with their environment.

I have also had family caregivers complain of the same thing with their loved ones at home. “My dad takes all of the socks out of his drawer, and then he puts them in the kitchen,” one woman said to me. “How do I get him to stop doing that?”

While that is an annoying thing (having to go collect socks every day) it is not really that bad of a behavior. Her father probably thought he was being helpful. Dementia is a group of brain diseases—it changes the way that the person interacts with and understands the world. For one reason or another, moving socks from the drawer to the kitchen made sense to this man.

So, the conclusion is this: people with dementia will move your stuff. They’ll pick it up, enjoy it for a while, and then go stash it somewhere else. That’s normal. 

The key is for you to spend a couple extra minutes putting it back where it came from, so they can relocate it again the next day.

[dementia-by-day]

https://www.enlivant.com/blog/memory-care-rachael-wonderlin

Had a fun time doing this video blog post for Enlivant!

[dementia-by-day]

My Shadow.

One of my residents, Vera*, was laughing so hard that tears were brimming at the corners of her eyes. She dabbed them away with a tissue and tried hard not to continue laughing. 

"He's following you around," she said, pointing to the man behind me.

Charles* stood there quietly, not two feet away.

"Where are we going?" he asked in his usual soft tone.

Charles has recently begun following me around the dementia care community where I work. It's not always just me: sometimes he'll attach himself to other people who work there.

He can't come with me everywhere, of course, so I often try to get him engaged in an activity or introduce him to another resident. Usually, other residents are happy to have a friend to walk with.

"I would ditch him, quick," Vera whispered, smiling, dabbing at her eyes.

Sometimes people with dementia will "shadow" someone who they care about for a sense of comfort. Charles didn't realize that his behavior was slightly disconcerting. In fact, he was most interested in where we were going next.

Most of all, he didn't want to be alone.

Check out an article on Alzheimer's Reading Room for more information.

[dementia-by-day]

You Live Here Now.

One of the worst things that you can do to a person who lives in long-term memory care is to remind them that they live in long-term memory care. Most of my residents with dementia still believe that they live at home, so it's very confusing for them to hear otherwise.

"Hey. What are we doing here? Why are we here?" JoAnn asked. 

"Well, mom, we're visiting you. This is where you live," JoAnn's daughter explained, slowly.

JoAnn has Alzheimer's. She doesn't understand or realize that she lives in a memory care community. JoAnn also has a lot of trouble hearing, so you have to get pretty close to her to speak. When she likes something that you tell her, she'll touch her forehead to yours. 

As JoAnn's eyes narrowed, and a concerned look crossed her face, I decided to step in. JoAnn's daughter wasn't doing her mother any favors by "reminding" her about the memory care community, and I didn't want to see this negative situation play out.

"JoAnn, you're here to hang out with me," I smiled. "I want to spend time with you." 

Her eyes lit up and a smile grew on her face. "Oh, good. You're the sweetest!" she exclaimed, and pulled me in, touching her forehead to mine. 

[dementia-by-day]

Lewy Body.

I recently had a resident's husband come up to me and ask about moving his wife to another room.

"I think Bethany* should be in her own room, not sharing one," he said.

"Why's that?" I asked. "Is she not getting along with her roommate?"

"No, it's not that...it's just that, well, she's seeing things. She says that she keeps seeing people in the room and it bothers her," he explained. 

I knew that she had Dementia with Lewy Bodies. "I'm sorry to say this, but it doesn't matter what room your wife is in," I said. "She's going to be hallucinating no matter where she lives."

Lewy Body has gotten a lot of attention lately. That's because the late, great Robin Williams had apparently been diagnosed with Parkinson's before he decided to take his own life. What does that have to do with Lewy Body? Lewy Body Diseases include Parkinson's Disease without dementia, Parkinson's Disease Dementia, and Dementia with Lewy Bodies. Essentially, you can have Parkinson's without dementia, but if you have Dementia with Lewy Bodies, you'll probably have some Parkinsonism. I've heard that Robin Williams was coping with some dementia symptoms. 

To keep it simple, there are a few things that make Lewy Body Dementias different from Alzheimer's and Frontotemporal Dementia, and these are:

Fluctuating levels of impairment

Parkinsonism 

Visual hallucinations 

Possible sleep disorders

Possible repeated falls and syncope 

The thing that makes Lewy Body Dementias extra challenging are the visual hallucinations. The best thing that you can do to help someone with DLB? "See" what he or she is seeing. The worst thing you can do? Tell your loved one that the things she's seeing aren't actually there. Embrace her reality: if she's seeing people in her room, tell those people to get out! If she thinks that dogs are living in her bathroom, put down some dog food for them. If she believes that snakes are biting her toes while she's sleeping, buy some snake repellent. Get creative. It's your job to go with the flow and help your loved one cope with hallucinations that may come from DLB. 

[dementia-by-day]

Dementia Is Not A Time Machine.

Originally written for Alzheimer's Reading Room.

“She’s reverting back to how she was when she was a child,” you’ll hear people say.

Nobody with dementia is going back in time. Dementia is not a time machine.

I can’t tell you how many times I’ve heard people make a connection between child-like behavior and the behavior of older adults with dementia. Yes, people with dementia do seem to gain some childish behaviors as their disease progresses. This isn’t because they are “reverting” back to being children, however: it’s because they are losing things that they’ve learned as adults.

When you’re a child (and especially when you’re a teenager) you often find yourself reacting poorly to various situations. You argue, you accuse, you get yourself into trouble. As you age, however, you learn. Your brain finally finishes forming by the time that you’re done with your early twenties, and you make better decisions. Instead of blurting something out, you hold it in. You’ve learned to hold back, and your fully-formed brain helps you manage your speech and your behavior.

People with dementia don’t have the same ability to control their reactions, their speech, their memory, or, eventually, even their ability to walk. The brain of someone with dementia is, quite literally, degrading slowly over time. 

She isn’t turning back into a child—her brain has just lost the momentous gains it made throughout her life.

I hate to compare the destruction that dementia causes in the brain to the beauty and innocence of childhood. It feels almost, to me, that we’re making dementia seem…simple. It’s as though we’re suggesting that the people who have dementia are silly and cute in the way that children are. 

When a child stumbles, he or she will probably bounce back up. When an 80-year-old man with dementia falls, the injuries he sustains could end his life.

When children make a mess feeding themselves, everyone congratulates them for trying. “Isn’t she so cute?” they’ll ask. When a woman with dementia makes a mess while eating, people shake their heads. “What a sad disease,” they’ll say.

We can’t make a simple comparison between dementia and child-like behavior. A child is a person who has not yet grown up. A person with dementia is an adult who is struggling to regain their place in the world. 

Dementia is not a time machine.

[dementia-by-day]

An Old Friend.

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?"

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 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. 

[dementia-by-day]

A Sunrise.

I hope that I can convey this beautiful moment as well as I want to.

I worked on the floor the other day because we were short-handed. I was making my rounds and helping to get some of the residents up and ready for the day.

I knew that Ella* was going to be one of my more challenging wake-up calls.

Ella speaks often, but does not often make sense. She is quick to anger, and will respond to questions, but usually with answers that convey her inability to understand what she’s been asked. Ella does not typically make sense when she speaks, either. Her words are jumbled and nonsensical. She also does not like being woken up.

I approached Ella’s bed and crouched down beside it. “Hi, Ella, are you ready to get out of bed?” I said, softly.

"Oh!" she exclaimed, startled.

"I’m sorry!" I whispered quickly, starting to back away in case she wanted to hit me.

Instead, she turned towards me and opened her eyes. A sweet smile moved across her face and she reached her hand out to touch my forehead. “Oh, honey, why are you awake?” she asked, calmly. “Did something scare you?” She gently pushed my hair out of my eyes. “You’re so sweaty! Are you scared? Is that why you came to see me?”

I was taken aback. Because of her dementia and half sleep-state, I was, I believe, reliving a moment with her. The way she spoke to me, calm and caring, was the way you’d speak to your young son or daughter by your bedside. I think she believed, for a moment, that I was her daughter, waking up from a bad dream.

Ella kissed my head. “It will be okay, honey.” I fought back tears. I felt, in that moment, truly special to this woman.

[dementia-by-day]

Home.

I used to look after a woman with dementia in her own house. By the time I had met her, however, she had forgotten it was her house. From what I could ascertain, she believed that we were staying at a hotel.

“What do you think they’ll have for breakfast tomorrow?” she’d ask me. “This is a nice place, but I didn’t expect to stay overnight,” she’d add.

The human brain is very pattern-seeking. By that I mean, when things don’t make sense, our brains seek to make sense of them. Elizabeth* didn’t recognize her house, and there were always people staying overnight with her, so she assumed it was a hotel.

I think most people would agree that “home” is more than just a physical space: it’s made up of the people and things that bring us comfort. For Elizabeth, her comfort was with her husband and her children, but her husband was dead and her children were grown and had families of their own. So, in turn, “home” wasn’t home anymore.

When your loved one with dementia says “I want to go home,” he or she is really just searching for comfort. Provide your loved one with comfort by talking about people and things that they love. “Home” is a lot more than just a location.

[dementia-by-day]

College.

Before I say anything to someone with dementia, I like to listen to them. I want to know where they believe they are. In order to embrace someone's reality, you have to first know what that "reality" looks like.

Oftentimes I’ll find that residents think that they are in their 20s or 30s. Some residents believe that their parents are still alive. For some, they are still in college.

MaryAnn* often believes that she’s still living in a dorm and taking classes. This is convenient for me because I can turn any activity or program into a “college class” with ease.

"Now, how do I get a code for that door?" she asked me, motioning to the locked door at the front of the building.

It is locked for a reason: we’re in a memory care community, and we have to keep our residents safe and prevent them from leaving without supervision.

I know her story because I’ve listened to her. I’ve pieced together where she believes she is.

"Well, MaryAnn, you have to sign up for some classes here first," I suggested.

"Oh! Well, sign me up!" she exclaimed. "What kind of courses can I take?"

Conveniently, our chef was showing residents how to make smoothies. She sat down, excited for “cooking class” to start. MaryAnn loved the smoothies and even asked for the recipe.

She was no longer concerned with getting the code for the door.