Tag: cognitive

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 “patient.” 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.

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!

“Therapeutic lying” is a ridiculous phrase

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 work very, very hard to dispel myths about dementia. I work particularly hard to dispel myths regarding communication with individuals living with dementia. One of these myths is the idea of “therapeutic lying.” Depending on who they learned from, care partners were taught to “never lie” to someone living with dementia, or they were taught to “therapeutically lie.” I’ll tell you right now: neither of these tactics are good options. And I’ll tell you why in a little bit. “Therapeutic lying” is a phrase many care partners were taught at some point in their caregiving journey. Essentially, it means that you should go along with a person’s reality, but lie to them only if it’s therapeutic. What does that mean? (I certainly don’t know.) The other option is even worse: you’re taught to “never lie,” which essentially means that you have to tell the individual the truth of our reality. For example, if your mother is asking where her parents are, then you’d tell her that they’ve passed away. DO NOT DO THIS. Ever. Under any circumstances.  What I teach is something called Embracing Someone’s Reality. Embracing someone’s reality means that you take the word “lying” and throw it away. Instead, enter into their reality. If it’s true for them, it’s true for you. It’s not about “lying” or doing it “therapeutically” — it’s about living in the truth of someone else’s reality. Dementia caregiving is not black-and-white. It’s such a gray area, and invoking the word “lie,” in either context, is really confusing. Make it a point to change your vocabulary when it comes to dementia care education! Words matter.

The 10 most important things about 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! Communicating with people living with dementia can be challenging. Understand that their world may be different from our world, and that’s okay. We want to EMBRACE THEIR REALITY rather than trying to convince them of things that are true in our reality. Just because their reality is a different shape, it doesn’t make it wrong.   Don’t get hung up on the word, “lying”: realize that if you are telling them the facts of their reality, you are doing the best thing for both of you. Here are 3 questions you want to use when talking to people with dementia: “Where do you think they are?” when someone asks you about loved one “Can you help me?” when getting them to do something with you “What do you think about this?” when introducing a baby doll or animal Get to know them on a personal level, and this will help you live in their reality. Ask, “What did you used to like to do?” instead of, “What do you like to do?” Offer them 2-3 choices instead of asking open-ended questions like, “What do you want to eat for breakfast?” or, “What did you do today?” TIMELINE CONFUSION is the concept that time isn’t linear in dementia. If the individual cannot identify their loved ones, it isn’t because they don’t know them or love them, it’s because these people don’t fit on their timeline. Never try to “convince” someone living with dementia of something. Don’t use “logic” to try to help them understand. No weddings, no funerals, no cemeteries.  Not everything is Alzheimer disease! The phrase “Altttttheimer’s and dementia” sounds ridiculous. Recognize that their timeline and reality may change, and that we can learn to be flexible and change with it. Dementia caregiving is an art form that takes practice and patience to learn.

Dementia-Friendly Days Out

A guest post by Ruby Clarkson | Writer, editor, animal lover and coffee enthusiast Dementia is a challenging group of diseases that causes many different problems, but that doesn’t mean that those who are living with dementia can’t enjoy a lovely day out. In fact, it is good for them to get out and see different things – any kind of stimulation for the brain can help them to feel more like their old selves, even if the feeling is not a permanent one.  And for those caring for friends or relatives who have dementia, it can be difficult to decide where to go and what to do. A day out is good, but where is safe and secure? Where will make the person happy? Where will cause more upset? It can often cause stress and anxiety for the carer, and in the end the idea of a day out can be mooted, which is a shame.  I reached out to Dorothy, an individual that has her dementia care provided by Helping Hands in order to obtain an insight into how a day out can be friendly. Dorothy stated that  “There really is no place like home, and with Magda’s support I am able to keep in touch with all of my friends and neighbours. We visit church every week for the Sunday morning service, I can visit the shops and I also take part in a local knitting group. This really is one of the greatest joys of staying in my own home around people I know.” With Dorothy’s case in mind, here are some places to go and things to see that are particularly dementia friendly. You’ll see the difference immediately, and hopefully make your loved one happy for a while. A Trip To The Past  What many people find with those with dementia is that although their short term memory is not good – perhaps it doesn’t even exist – their long term memory is almost entirely intact. Therefore, a day trip that offers a glimpse into their past will be ideal, and help them to feel at ease.  Think about places they used to go to as children, for example. It might be that a day at the seaside is perfect, complete with deckchairs, ice creams, and even donkey rides. Let them enjoy the sun and build sandcastles and feel the wind in their hair. Or perhaps a museum with plenty of exhibits that link back to when they were younger. They will happily be able to talk about what they see and enjoy the day immensely.  Relaxation  It can be tempting to try to do as much as possible when you go for a day out, to make the most of the time you have together. Yet this isn’t always a good idea, especially for someone with dementia who can be easily overwhelmed by too much stimulation.  It might be better to enjoy a nice, relaxing day together instead. It could start with a trip to the hairdressers or barbers, and then you could have a spot of afternoon tea together (this links in with the memory trips as mentioned above). Afterwards, you could go to a library or go to a spa for a swim and some treatments.  Fresh Air  Outdoor pursuits are always a good idea. People with dementia can often feel cooped up and anxious when they are indoors, and as well as that, fresh air is good for you. So it makes sense to get outside and enjoy what nature has to offer. Not only is it a healthy option, but it is relaxing too.  The local park is always a good place to take someone for a day out, no matter what their age or what their condition might be. Arrange a picnic with their favourite foods and feed the ducks if there are any there. Take a stroll, notice the clouds and the trees, enjoy every moment. It is these simple pleasures that really make a difference.  A Sing-along  Although a lot of the memory of a person living with dementia will be affected, there is something about song lyrics that seems to linger, and it is for this reason that a good old sing-along might be exactly what the patient needs to enjoy their day and feel better. You can do this in your own home if you like, simply downloading songs from the past to listen to and song along with. Alternatively, you can find a concert venue that is offering this kind of music too.  The Cinema  If you take a look at the film listings for your local cinema you might be able to spot some special screenings that are labelled as ‘dementia friendly’. If there aren’t any, you might need to search for a larger venue, but these films do exist. The lighting is brighter, there are no trailers or ads before the film starts, and the environment is relaxed and friendly. 

How Joe stopped arguing with his mom

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! “Mom’s room is a mess!” Joe complained. “Every time I go in there, we argue about her clothes! She’s got them strewn all over the floor, and she keeps claiming that they don’t belong to her.” It was true. Joe and his mom, Bethany, argued nonstop when he came to visit her at our dementia care community. He’d go into her room, find her dirty clothes stuck into drawers, and get mad at her. “Those aren’t mine!” she’d insist, when, of course, she had stuck them in the drawer only an hour before. When Joe had moved his mom into our community, he felt like he was doing her a favor when he threw out all of her old tops and got her new ones. His wife had sewn Bethany’s name into each article of clothing so that she’d “recognize it as her own.” Unfortunately, however, despite the name tag, Bethany no longer recognized the new clothes. “These aren’t mine!” she’d yell, her eyes full of tears, pointing to the clothes in her closet. “Ugh, mom!” Joe would exclaim. “I just got you those, and look! We labeled them for you!” Joe came to me, exhausted, looking for a solution to end the battles with his mom. “Stop going in her room,” I said. “What do you mean?” he asked. “I mean, don’t go in her room when you visit her. Come here, get her to come out in the hallway, and then hang out in common spaces. You can’t help yourself, Joe! You point out what’s wrong with her room, and she can’t help herself, either: she’s confused. She’s confused, and then she fights back. Stay out of her room,” I explained. Joe took my advice (begrudgingly) and stayed out of his mom’s room the next time that he came to visit. Instead, he sat in the dining room with her and they enjoyed lunch together.  They stopped fighting, and, finally, started getting along again. Joe realized that seeing her room (and, really, her confusion in full-swing) was a big trigger for him. When he got upset, she got upset. By removing his own trigger, he added some positivity to his relationship with Bethany. 

Dementia isn’t a loss of intelligence

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 comment to me recently that they “didn’t think they’d fit in” with the participants of the Mild Cognitive Impairment (MCI) program I work with because they “would be smarter than everyone.”  My defenses immediately went up—the way they always do when I feel that someone is insulting my clients living with MCI or dementia. “Yeah…no,” I responded casually, trying to hide my annoyance at this arrogant proclamation. “First of all, most of our participants have at least a Masters degree education. They’re all incredibly intelligent, well-rounded individuals. And secondly, dementia is not a loss of intelligence.” There’s an assumption that, if you get dementia, you will lose not only your skills and abilities, but that you’ll also get dumber.  This just isn’t true. Dementia isn’t making anyone “revert back to childhood” or “lose their intelligence” – it just makes people lose the gains they’ve made as adults. It’s a completely different thing. The way that we measure “intelligence” isn’t really measurable when someone begins to lose their cognitive functioning, but that person isn’t losing their smarts. They’re losing the things that they’ve learned to do, they’re losing short-term memory, reaction time, judgement, etc, etc…but this is not a loss of intelligence.  You know this is true if you’ve ever listened to your loved one with dementia talk about their favorite topics. They’re still just as clever, smart and focused as they ever were. One of my favorite moments was leaving a resident of mine–a previous event-planner–to work on the decorations for our Christmas party. Her skills and her intelligence in this area were far greater than mine. Dementia is not a loss of intelligence.

“Why can’t I…find…the words?”

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 was thrilled: we’d made it through an entire class without Ava getting upset. And, to top it all off, she was doing so well! We’d been playing a word-finding game, which I knew that she might struggle with. Still, she’d done so well! Ava spent the majority of the class laughing and smiling.  Ava knew that she Alzheimer disease, and she often expressed her pain over this diagnosis. She often began to cry when she had trouble finding words. As we got up to leave the class, Ava touched my arm. “Can I talk to you…out…?” she asked, pointing to the hallway. “Sure,” I smiled, my hopes still high. She’s done so well! I thought. The second we got to the hallway, however, I knew I’d been wrong: she was upset. “Why can’t I…” she started, slowly. Then, suddenly, tears sprang to her eyes. “…find…the…” she could barely speak now, she was so devastated by her word-loss. “Find…the…” Taken slightly aback, I touched her arm. I tried not to show her that I was alarmed by her tears, or worried at all. “…Words can be hard to find,” I offered calmly. I said this sentence the way that I did so that I’d be able to do things: one, fill in her sentence, and two, make the conversation flow together as though it had never stopped. As though she’d never lost the word, “words.” We talked briefly about her diagnosis. I assured her that this was normal, but that she was doing really well. I told her how impressed I’d been with her abilities playing word games.  I made a joke about losing my phone, saying that I’d lost it just the other day, while I was still on it. I’d been talking on the phone and looking for it at the same time, which was ridiculous, because it was in my hand and resting on my cheek.  Ava laughed through her tears. “We all do that, don’t we?” she smiled, dabbing at her eyes with her fingers.  For more posts like these, be sure to follow my blog.

Assisted Living is NOT your enemy

“We want to keep her out of assisted living as long as possible.” “My brother thinks it’s horrible that we want to move dad.” “I’m exhausted caring for my loved one at home, but moving them just seems cruel.” “She took care of me when I was younger, so now it’s my turn.” “I don’t want to move him to a home.” I’ve heard all of these phrases time and time again. Occasionally I’ll even get a comment on a post that echoes these same sentiments. I published a post recently, “The one-sentence answer to when it’s time to move someone” and somebody on LinkedIn commented one word, “Never.” Frustrated, I commented back. “When you say something like that, you make it even more difficult for stressed and exhausted caregivers to make a decision they may need to make. You’re stigmatizing something that is already over-stigmatized.” I didn’t get a response—no surprise there—but it encouraged me to write this post. Assisted living is not the enemy. Society has beat into us this idea that you “must take care of your person at home forever!” when, for some people, this isn’t feasible, reasonable, responsible, or safe. Honestly, that’s why I wrote my book. I realized that there were so many people in the same boat: they felt guilty about moving a loved one and didn’t know where to turn for answers. I wanted to write something that not only answered their questions but also made them feel OKAY but making a hard choice. Don’t let someone tell you what is right for you or your loved ones’ living situation. Learn from me online by taking one of my classes! Use the code DEMENTIABYDAY for $10 off “Everything You Need To Know About Dementia”

SOLVE their fear of water

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 a reader write in recently and ask me about her grandfather’s fear of water. Although it had started with the shower, the problem had migrated to even brushing his teeth. He was afraid of the water in the sink, not just the water from the shower faucet! She asked how they could solve this issue, and hopefully get him to wash his hands and brush his teeth. First, I challenged her to help me figure out what the problem actually was. Was it a fear of water or was it a fear of something else, such as being naked in front of people, being too cold/hot, the unnatural feel of water hitting his skin, etc.? (Let’s also remember that trying to “convince” someone with dementia that they “need to bathe” isn’t going to work. Even if you need to bribe your loved one a little bit, “We’re going to go to your favorite restaurant after this,” or, “I will have cookies for us when we’re done,” that’s okay.) Here are some solutions, laid out by problem: FEAR OF WATER Two potential solutions here, depending on the situation: first, if there is an actual fear of water, it’s probably because your loved one can’t SEE the water. If  the water is clear—and I sure hope it is—they may not be able to actually see it. Suddenly, their hand is under the faucet and it’s wet! How creepy and surprising would that be! I recommend filling a bowl with water and even dropping in a little bit of food dye so they can see that there’s water. Try this for teeth brushing or for sipping. To lessen the surprise factor, switch to a bath. You could even drop a bath bomb in there (like a true Millennial) or wrap a towel around them to ensure that the towel absorbs the feeling of water before their skin does. UNCOMFORTABLE WITH TEMPERATURE The towel trick works well here, too. I also recommend warming up the room ahead of time…no one likes taking a shower or bath in a cold room! DISLIKE OF BEING NUDE Again, the towel trick is a good one. You can also alleviate this problem by having a bed bath or a bath where they can keep some clothing on, such as a shirt while they’re sitting in a shower chair. LOSS OF CONTROL Personally, this would probably be the big one for me if i was living with dementia. Instead of “doing” the shower TO them, involve them in the process. For example, ask your loved one to “help you” finish the task. “Can you help me? Can you wash your face while I wash your feet?” and then some encouragement, like, “Wow, that’s great, this is so much faster with your help! I couldn’t do this without you.”

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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!