Tag: brain

Give yourself a break: dementia care takes practice

I’ve had a lot of people over the years say to me, “Wow! Dementia care? You must be really patient!”  This is actually kind of funny to me, because one of the last ways I’d describe myself is â€śpatient.” One of the main reasons I don’t want to work for someone else is because I can’t stand when things take a long time to accomplish. The corporate world is all about having meetings about having meetings about deciding things in a meeting. I can’t handle it. Needless to say, I am not a patient person, albeit in ONE area of my life: dementia care. I am incredibly patient with people who are living with dementia. Even so, I’ve made plenty of mistakes. I’ve said the wrong thing, made the wrong choice, and upset a person living with dementia here or there. It’s going to happen: you’re going to do the wrong thing. And that’s okay. Dementia care takes practice. I like to tell people that it’s an art form. Most of us didn’t get really good at painting, playing an instrument, performing on stage, or doing anything else just by waking up and magically being great at it. Most of us have worked years at our craft, honing it, learning, experiencing, practicing. Dementia care is the same way. So, give yourself a break. Maybe you said the wrong thing yesterday. Maybe you yelled at your loved one with dementia this morning because he asked (again) what time it was. These things happen. You’re doing the best that you can. And you’ll keep getting better.

Stop trying to “convince” them

Logic and dementia don’t mix. What does that mean? It really means that using logic to “explain yourself” to someone living with dementia won’t work out well. So, saying to someone with dementia, “But you can’t eat lunch, because you already ate lunch” won’t compute. They don’t remember eating, they still feel hungry, and they think you’re making it up! And then what happens? You fight. No one wins, and everyone is mad. Don’t convince. Just EMBRACE THEIR REALITYTM Check out this example from my time working as a Dementia Care Director. “I want my pills,” Molly said. “Can you bring me my pills?” she asked a nearby staff member. “I already brought them to you, you had your pills this morning,” the staff member replied kindly. “No I didn’t, I want my pills now,” Molly shook her head. “But I already gave them to you…” the staff member started. “Hang on,” I offered, walking over. “I have a solution,” I said to the staff member. “Hey, Molly, I’m going to bring you your pills in a little bit!” I smiled. “Okay, thanks,” Molly said, and went back to eating her lunch. What changed? Why did this work? Instead of arguing or attempting to use logic with this resident, I embraced her reality. Trying to “convince” her that she already took her medicine wasn’t going to work: she didn’t remember doing it, and so it didn’t happen. I decided to get into her world and tell her the truth of her reality: that she’d be getting her pills soon. Of course, I never brought them to her, but hearing a positive confirmation calmed her down immediately. Was this “lying”? No! When you’re lying, you’re making something up that will benefit YOU. When you’re Embracing Their RealityTM, you’re doing what’s best for THEM. You’re doing what’s true in their reality. It’s not a “therapeutic lie” or a “filblet” (blegh, I hate that word!) you’re living in their truth. Have you ever dealt with a challenge like this when communicating with a person living with dementia? What happened? What worked?

The Key to Personal Preferences

See a theme this month? We’re reminiscing! This story was originally written in 2015, redrafted for May 2021. It is so important for people living with dementia to continue doing and enjoying the things that they love. One of our residents, Shelly, spends nearly all of her time in her room. She does not want to come out and be with other residents. She doesn’t want to come out for meals. In fact, Shelly has a small table set up in her room where she can eat her meals alone—not something we typically provide in dementia care environments. We keep her door open to keep an eye on her eating, but it’s become clear that, when around others, she won’t eat. She speaks, but it is mostly in small, repetitive sentences. “Momma, momma, momma, momma,” she’ll cry out while lying in bed.  When you speak to Shelly, she may utter a few phrases. Perhaps you’ll get a one-word answer. It is tough to get her out of bed, even when it’s time for her to eat at her little table. Shelly has a lot of anxiety, so it is easier to let her eat alone in her room—because, again, it is all about preferences. The one thing that Shelly will always get out of bed for is coffee. During a fire drill the other day, I knew we had to get Shelly out of bed. I ran into our kitchen and filled up a cup with some coffee while an aide prepared Shelly’s wheelchair. â€śShelly, I brought you some coffee,” I said, â€śI’ll hand it to you once you get in your wheelchair.” Her eyes grew wide. â€śCoffee, coffee, coffee, coffee!” she repeated excitedly, jumping out of bed quicker than I had seen her move before. â€śCoffee! Coffee!” she cried as I handed her the cup.  “Mmmmmmm,” she smiled peacefully as we pushed her wheelchair down the hallway. Are you enjoying my stories and dementia care resources? Then you’ll love my latest eKit: a guide we prepare JUST for you, with audio answers and helpful downloads. Check it out here.

A Better Approach to “Logic” & Dementia

One thing I encounter often is when caregivers try their hardest to â€śconvince” people with dementia of facts that they no longer understand.  People will say things to me like, “I keep trying to tell my mom that dad is dead, but she doesn’t believe me. How do I convince her?” Here’s my answer: stop trying to “convince” her. You’re starting an uphill battle, and there will never be a clear winner. If your loved one with dementia believes that her husband is still alive, that’s a GOOD thing. Let her believe that. Why try to convince her otherwise, especially when she’s going to forget what you told her? Try this instead: Ask her, â€śWhere do you think he is?” Whatever she says, that is the right answer. So, if she says, â€śHe’s at work,” you can say, â€śYes, he’s at work.” If she says, â€śI think he died,” you can say, â€śYes, I think he died.” What you’re doing is you are finding out what her reality is, and then agreeing with that reality. Logic and dementia don’t mix. Using facts or figures with people who have dementia isn’t going to help them to understand where you’re coming from. For example, taking your mother to the cemetery to show her your father’s gravestone isn’t a good idea. She’s either: not going to believe you, she’s going to get upset, or she’s going to â€śremember” briefly and then quickly forget, starting the process over again.  Stop using logic in dementia care, and, instead, Embrace Their Reality(TM)! When you Embrace Their Reality(TM), you recognize that you CAN go ALL the way to their world WITHOUT feeling like you’re lying! You’re not lying, you’re not “therapeutic fibbing,” you’re actually doing what’s true for that person. Check out one of my videos from YouTube about a similar topic…how do you “convince” someone with memory loss to see a doctor?

Why They Never Initiate Tasks

She’d left her father a â€śto-do” list that included tasks around the house. He was home, by himself, for a good deal of time during the day. When his caregiver was there, Max had the help around the house that he needed. When she left, though, Max was also left to his own devices. Max’s daughter came home to find him, head tilted back, asleep in a chair. The closet was still as she’d left it. Max’s daughter was frustrated, but she didn’t understand that, while Max wanted to do the task, he couldn’t even get started with it. One could argue that it’s because the instructions weren’t clear enough, but even if they’d been explicitly clear, step-by-step instructions, Max wouldn’t have been able to follow them. He was at a stage in his dementia where accomplishing tasks by himself was impossible. People living with dementia have trouble starting tasks because the â€śinitiation” of a new task is too complicated. You know this if you’ve ever had to help someone living with a moderate or later stage of dementia get dressed: what you’ll notice is that you need to â€ścue” each new task before they start it. And, the task needs to be cued verbally or physically. This is why notes around the house don’t work. Reading is difficult because it involves two different processes: being able to understand the words and then being able to interpret what they mean in context. These two things are too complicated for someone with a moderate or more advanced stage of dementia. Sometimes, they are even too complicated for someone in early stages. This is why your reminders don’t work. This is why putting colorful pieces of tape over items you don’t want them using, caution signs over stairs you don’t want them climbing, or big “USE THIS” signs on walkers won’t cut it. It’s not that Max didn’t WANT to help his daughter: he did! He just couldn’t figure out how to get started with the task. If he could, he would. But he can’t. So he doesn’t. I was recently talking to a care partner about something similar. She was frustrated at her husband’s struggle to walk properly using his walker. “I have a sign there for him to remind him, he has PT and OT, we’ve been over it a million times…” It wasn’t the first time we’d talked about the struggle he was having. “Here’s the bottom line,” I said. “It’s just not going to happen. You can’t teach him how to walk properly again at this point in his disease process. It’s not that he doesn’t want to. It’s that he cannot.” This was probably hard to hear, but it’s something care partners need to understand. It’s not that they don’t want to. It’s the disease that makes it impossible.

Enter the Gray Area: Communicating with someone living with dementia

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! “We bring Rachael in for a different perspective,” the nursing school’s professor told her class. “As I said before: do what she says in practice, but remember to write the opposite of what she says when you’re taking your boards.” The class nodded, but I was shocked. “Wait, nursing schools still teach reorientation? I thought they stopped teaching that years ago!” “Unfortunately not,” the teacher shook her head. “The textbooks and lesson plans all include information on correcting people living with dementia.” Years ago, newcomers to the world of dementia caregiving were taught to reorient someone living with a dementia disease. Reorientation is the idea that you correct and argue with the individual in the hopes to “fix” what they believe to be true. For example, if a person with dementia said to you, “I saw my mother yesterday!” you would reply, “No, you didn’t, your mother has been dead for twenty years.” Reorientation is cruel, unnecessary, useless, and ultimately painful for everyone involved. The person living with dementia will forget what you told them and ask again. You, in turn, will be forced to restate your case. But what’s the alternative? After getting my Master’s in Gerontology, I began my dementia care journey at an assisted living and dementia care community in Burlington, North Carolina. I learned, at some point, about using “redirection” and “distraction” when communicating with people living with dementia. These ideas mean that, when a person with dementia presents an untrue fact or belief, you redirect the conversation or change it entirely. For example, if the person were to ask, “When can I go home?” you could say something like, “I don’t know. Let’s go fold these towels.” I quickly found that these techniques didn’t cut it, either. I once had a resident say to me, “Why does no one around here ever answer my actual question?” This struck me. I thought, yes, why do we feel like we can’t actually answer your question? We’re taught, too, never “to lie” to someone living with dementia. Then what, I ask, are we supposed to do? Evade every question? Make someone cry by reminding them that their parents died decades ago? Force someone to do the math on their age and the current year? No. I began to work on what I now teach: the idea that we can embrace the reality of the person living with dementia. When we embrace the reality of someone living with dementia, we throw out the word “lying.” Instead, we enter the truth of their reality. As I teach my workshop attendees, readers and podcast listeners, if it’s true for them, it’s true for us, as well. Let’s break this down in an example. Let’s suppose that your mother is 85, has dementia, and lives in your home with you. In her reality, however, she believes that she is 50 years old, works outside the home, and lives in her own house. Which reality is true? If we embrace her reality effectively, we live with her in her truth. When she asks, “When can I go home?” you say, “Let’s go later.” When she asks you where her parents are you say, “Where do you think they are?” Whatever she tells you is the correct answer. “Yes, that makes sense, I think they’re probably at work,” you agree. When we reorient someone living with dementia, we correct them: we tell them that what they believe is wrong. When we redirect or distract them, we throw them off balance by avoiding their questions. When we get scared of the word “lying,” we cautiously avoid letting them live their truth. Dementia care is a gray area and caregiving is an art form, much like a complicated dance for which we can’t quite learn all the steps. Here’s the good news: we don’t need to know all the steps ahead of time. If we find a way to embrace their reality, we can thrive in that gray area. >> Sign up for my blog here to get emails on Mondays & Wednesdays!

5 steps to get you into the world of someone living with dementia

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! I had someone tell me recently that they’d used my Embracing Their Reality techniques when talking to their mother with dementia. “I told her that we were going to see her parents, and she looked confused. She was talking about her parents the week before, so I just started the conversation about seeing them! Embracing her reality didn’t work,” he said. Here’s the problem: he didn’t embrace her reality. All he did was assume that, because she’d talked about her parents the week before, she’d be in the same reality the next week. Use these 5 “L” steps to embrace someone’s reality effectively: 1. Listen Don’t assume that you know where your loved one’s reality is that day. You have to listen before you make a big statement that you think reflects their reality. Listen to their context clues: for example, if she’s talking about her parents as if they are still alive, that’s what she believes that day. We can’t hang onto where she was the week or even day before. It just may not be accurate anymore. 2. Legitimize Legitimize whatever they say to you. If they tell you that their neighbors stole their garden gnome, agree that their gnome seems to be missing, and you’re going to “get to the bottom of it” by talking to the neighbors. You don’t have to 100% jump to conclusions with them, but you do need to listen and legitimize whatever they say. 3. Lean Lean into what they’re saying so that you can embrace their reality effectively. For example, if today she’s speaking about going to her mom’s house, she probably thinks her mom is alive. Lean into that with a small statement or question, something like, “What were you thinking about doing at your mom’s house today?” This gives her the feeling that you’re listening and agreeing, but it also gives you a bit of leeway: if she was just speaking generally about how she used to go over there, you don’t look totally crazy by talking about someone she knows has died. If she’s talking about her parents and asking you a question like, “Where are they right now?” You can say, “Where do you think they are?” 4. Leap You’ll know from step 3, Lean, exactly where her reality is. Now, Leap into that reality with her, wherever it is! Talk about what she’s talking about. Don’t try to bring her back to our world. If she’s talking about going to work, talk about that work with her. Ask what projects she’s working on there currently, how her boss has been, and if her coworkers are fun to be around. 5. Learn Learn from your successes and mistakes when embracing the reality of someone living with dementia. Recognize that while their reality may evolve and change, you’re going to be just fine when you take a moment to figure out where their reality is that day. Learn more about what I do here.

What would YOU want, if you had dementia?

I received a great question from a reader just the other day on my blog:  I was told that I have early onset dementia about 5 years ago. My Dad and 4 of his siblings have died or have Alzheimer’s. I try to learn as much as I can about dementia care. I was just wondering if I should try to teach the people who will be helping me about dementia care or just let nature take its course? My wife isn’t open to thinking about this care yet. I responded: Absolutely, teach those who will be helping you. Make a list of things you want people to know, like little habits and likes and dislikes you have. For example, I always sleep holding a pillow. A spouse will know something like this about you, but not everyone. It would be great if your wife would start learning now, rather than wait. Hard choices only get harder when we procrastinate on talking about them. If you’re open to more care (home care agency, adult day, assisted living) let your family know this. Families have a hard time making decisions when they think their loved one doesn’t want any extra help (and it sounds like you’re open to it, which is great.) I wrote “16 Things I Would Want If I Got Dementia” probably five years ago at this point. Despite the fact that I wrote an entire book, am working on two more, and publish blogs posts weekly, my “16 Things” list is STILL the most popular piece I’ve ever written! I think I figured out why, too: it really speaks to people. Probably the best thing that you can do is to start a conversation. Write down items that you want people to know about you, and talk to your loved ones about what they want you to know. So, what would you want people to know if you got a diagnosis of dementia? STAY TUNED: New stuff coming on Dementia By Day! Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox!

Only 3 Questions You Need in Dementia Caregiving

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! These are my best 3 tried-and-true questions that you need in dementia caregiving. Are you ready? 1. “Where do you think they are?” This is the question that you’re going to use with someone who has dementia when they are talking about a loved one who has passed away. For example, perhaps your mom is saying, “Hey, where’s my dad?” You know that her father (your grandfather) died years ago, but saying, “Don’t you remember? He’s been dead for years!” is a terrible answer. Let’s figure out where her reality is so that we can embrace it! Ask her, “Where do you think he is?” and then repeat that answer back to her. For example, it may go like this: “Where’s my dad?” / “Where do you think he is?” / “I think he’s at work.” / “That sounds right, he must be at work.” The great thing about this answer is that it takes you completely off the hook: you don’t have to come up with anything, and you won’t accidentally give them the wrong answer! I spoke to a staff member at a local SNF recently who told me about the wrong answer she gave one of her residents. “Uhh…I think your husband is at work,” she offered. “My husband is on disability, so he doesn’t work!” the resident called back, annoyed. If the person you are caring for believes that their loved one is dead, you can also confirm this. The trick is to always repeat their answer back to them. You can also reuse their answer, without re-asking the question, multiple times in a row! 2. “What do you think about this?” This is the question that you’re going to use when introducing a stuffed animal or baby doll to a person with dementia. Just like in the first question, we give the person with dementia the opportunity to tell us what THEIR reality is! We don’t want to introduce a stuffed dog and say, “Look at this real dog!” because they may say, “That’s not a real dog.” Let them guide you to what their reality is, and then do that. 3. “Can you help me?” If you ask someone with dementia if they “want” to do something, what will they probably tell you? They’ll probably tell you, “no,” even if they may have been interested in the thing you were asking about. If you ask someone “for help,” you’re actually asking a completely different question! I’ve done this many, many times with people who have dementia. The phrase, “Do you want to help me?” or, “Do you want to…” is very different from, “CAN you help me?” “Can you” inspires a sense that you are the one needing assistance, and everyone wants to feel helpful and needed! Like this article? Follow me here Love this list? Buy it in poster form on my website!

Why the loss of control motivates most “behaviors”

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! Cecilia was having a hard time. Suddenly, she couldn’t do all the things she used to do. She had once owned her own business, handled all her finances, made her own daily plans, raised children, and more. Now, with dementia, she couldn’t manage those tasks. Now, her family was doing everything for her, and it made her angry. â€śStop messing with my checkbook!” she yelled at her son. â€śWhen did you last take the trash out?” she asked her husband with a tone of frustration. Often, she stayed in bed, saying she didn’t â€śfeel well.” This was very new for her family—they’d never seen her like this! It was no wonder that Cecilia seemed annoyed, detached, and anxious! She was once a woman who handled everything in her life, but now, with dementia, she had lost a lot of control. A feeling of control is important to most everyone: we want to know that we have the ability to make choices and change things in our lives if we want to. When we feel like we have no control, we start to panic. It makes a lot of sense that Cecilia was so agitated and irritable with her family: it stemmed from fear.  Many of the â€śbehaviors” we see in dementia (hoarding, irritability, accusations, etc.) come from a place of fear, and that fear is usually based on a loss of control.  How do we help someone who feels this way? The best thing to do is to give them back some of that control. Obviously, you can’t let your confused loved one fill out the checkbook, but you can let them help you make a budget. Ask your loved one â€śfor help” when completing a task, even if you don’t need (or want) help with that task. This is another reason why chores are such a great thing to try with people living with dementia: they are task-based, often simple, and part of daily life. Even in late stages, most people are able to fold a hand towel or match up socks with some assistance.  Ask â€śfor help” (not if they WANT to help, but rather if they CAN help you) and see the change in your loved one’s behavior. No one wants to feel like they lack control over the most basic parts of their existence. Have you signed up to receive my blog posts?

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Rachael wrote "16 Things I'd Want If I Got Dementia" in 2014 and it's circulated the globe many times over. Download your free copy here!