Tag: care

Never ask someone with dementia if they “remember your name”

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! 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 living 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. Hungry for more information? Check out my site for information on classes, workshops, and more.

May 14, 2019

3 keys to accepting change in 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 host a monthly support group in my area, and yesterday’s meeting made me think a lot about acceptance. We had a great discussion: all the attendees are care partners of people living with Mild Cognitive Impairment or early stages of dementia, and they each expressed some level of learning to “accept” their loved one’s changing condition. When we talked about why and how people learn to accept a loved one’s changing condition, we also talked about the need to put resentment behind us. We acknowledged that it can be really difficult to not resent that a loved one can’t do everything they used to do: the chores around the house, moving from one task to another, even putting on a coat without reminders and assistance. Here are my 3 keys to accepting change in dementia. You probably have a few other ideas, so be sure to email me with those thoughts! I may add them to a new list. Recognize that if they could do it, they would. They aren’t not-doing-something to get on your nerves. They literally can’t. do. it. In fact, I’d argue that they probably don’t want to feel like a “burden” to you at all, and would be mortified if they ever truly realized how much they can’t do anymore. Dementia gives the person with dementia a “gift” every now and then: while it takes things away, it also prevents a person from realizing how much they’ve actually lost. You know, of course, which makes it all the more difficult for you as the caregiver. It’s about education and support. I find that the more people learn about dementia, the more accepting of a loved one’s condition they become. Consider this: the don’t-get-it-won’t-get-it people never come to my workshops or training sessions: they don’t want to “get” it! If you’re reading this, you want to get it. That’s huge. It speaks volumes of your character that you’re out here, searching for more information, educating yourself. I also recommend support. Support for you may mean many things, but most of all, try to find a support group in your area. I 100% guarantee that other care partners have very similar stories to your’s. It’s okay to get frustrated. Don’t beat yourself up for snapping at them yesterday after they asked about that thing for the 15th time. You’re allowed to get annoyed, as long as it’s not all the time. If you find yourself snapping at your loved one daily, it’s time for you to get some extra help. This means time to yourself, caregiving assistance, maybe therapy, and definitely a support group. Remember that even if your loved one forgets day-to-day interactions, they won’t forget ongoing emotional battles. Are you subscribed to my blog? Never miss a post!

April 30, 2019

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.

March 28, 2019

Improv comedy and dementia care workshop now online

Our workshop is officially ONLINE which means you can take it from wherever (and whenever) you want! This is a cool opportunity for you to see how improvisational comedy works with dementia caregiving, especially if you can’t make it to Pittsburgh, PA for our workshops. We travel, so we’re happy to come to you, but if you’re just one person it’s more cost-effective to take the class online! If you see this before the end of the day, use code MARCH28SALE for $25 off the normal price of the class. HERE’S THE LINK!

March 28, 2019

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. “Stop messing with my checkbook!” she yelled at her son. “When 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 “feel 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 “behaviors” 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 “for 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 “for 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?

March 10, 2019

At home, in adult day care, in assisted living…how do you know if it’s a good fit?

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! How can you tell if where your loved one with dementia is currently living is…well, working? How do you know if it’s the right fit? It’s pretty difficult to ask someone living with dementia what their opinion is on the subject. Even if you were to move them, would that make them happier? Would it be safer? “It’s getting late,” Maryann said, looking out the window. “I think it’s time I head home.” I’d heard this phrase a million times from a million different people. “I want to go home,” is a common phrase from someone living with dementia. There’s always a sense that, where they are, isn’t where they ought to be. In this case, however, Maryann was home: she’d been living in the same house for over fifty years! In her mind, however, she wasn’t home at all. For her, I came to realize, “home” was where she’d grown up. “Let’s go tomorrow morning,” I offered. “It’s getting dark. I don’t like to drive in the dark.” Maryann agreed. “Me neither,” she said, shaking her head. Remember that we never, ever want to “convince” someone with dementia of something. We don’t want to tell them that their loved ones are dead, we don’t want to tell them that where they are living IS their home, we don’t want to remind them that they have dementia. So, we can’t really ask someone living with dementia if they like where they are living: that’s a very open-ended question that supposes they understand their options. And most people with dementia cannot understand their options. Then, how do we know if where they are living is a good fit? Let’s see: Is it safe? For them and for you, we need to ensure that where they are living is safe. Does home have way, way too many stairs? Does the assisted living building not keep track of their comings and goings? Do they socialize? I’ve had residents in my dementia care communities who will tell their family members that “they have no friends and they are bored all the time” and after the family leaves, they’re sitting at a table laughing and talking with their friends while doing a craft. (So, you may need to remove any bias you have while evaluating this.) Do they seem happy, generally? Again, we can’t really ask someone if they are happy, we just need to evaluate. Do they get the right nutrition? Not just food, but water. Are they eating and drinking enough? Are there things to do to alleviate boredom—and are these things at their level of need and skill? I’ve seen many people with dementia living in independent living communities who have such a hard time “keeping up.” They don’t know what to do when or how. Their level of need is much greater than the population that independent living was designed for. My point is this: your loved one living with dementia will probably, at some point, mention “going home.” Assuming that a MOVE is the right answer is probably too quick of an assumption. There are a lot of factors worth evaluating! Sign up for my blog emails here!

January 20, 2019

“Don’t ask for permission, beg for forgiveness.”

So many family caregivers will say to me, “But mom/dad/aunt/brother/spouse will not let me…” Take the car Move them into a care community Pay the bills for them Take over the healthcare Power of Attorney Send caregivers to the house Do the grocery shopping Make any decisions for them Bring them to the doctor What I always tell these caregivers is, “Too bad.” When your loved ones have dementia and can no longer may healthy decisions for themselves, it is no longer up to them what happens. This may sound harsh, but think of it this way: would you want your loved one with dementia driving down the highway alone? No, probably not. If that’s the case, why are you letting the car stay in the driveway? Why are you keeping the stove plugged in? Why are they at home by themselves most of the day? The answer is this: someone needs to take over their decision-making. And that person is you. This is a “don’t ask for permission, beg for forgiveness” situation. If you’re waiting for permission to do something regarding your loved one’s care, you’re going to be waiting forever. Your loved one is never going to say, “You know what, I woke up this morning and decided to let you take over the bills, plan my day, and move me into a care community.” It’s just never going to happen. The hard truth is this: you need to be their decision-maker. When he or she can no longer make safe choices, you need to make those safe choices on their behalf. (And this doesn’t involve asking first!) So shrug off that guilt, take a deep breath, and blame it on me. I know that you don’t want to be the “bad guy,” but, sometimes, the bad guy IS the good guy.

June 15, 2017

Senior Care Communities: Just because they look nice, doesn’t mean they are

“I moved my dad into the nicest place ever,” she exclaimed. “They have this beautiful lobby and all of these brand new chairs!” I have heard family caregivers talk about this idea a lot. They think, “Ah, this place looks so fancy, it must be nice.” This could be true, and the dementia care community that you’re looking at could be great…but often, looks are deceiving. Just because a community looks nice for families doesn’t mean that it is dementia-friendly. Many communities that I’ve been to have been recently developed by architects outside of the industry. Despite the fact that architects have a great sense of design and style, they often lack any clues about what people with dementia really need. When a place looks really nice and pristine, but lacks any real character, you can be sure that it is not actually dementia-friendly. I recently toured a community with a beautiful exterior and interior. They had nice furniture, a large bird menagerie, and a nice garden. But…that was it. They didn’t have a place for baby dolls, they didn’t have music playing, and they lacked any sort of organized activities. Why? Because it was designed for families to enjoy, not for residents with dementia. The families are the decision-makers. They decide when and where to move a loved one, and so often they panic when they see things that are actually dementia-friendly. “Well, my mom wouldn’t want to play with a baby doll!” they’ll say, upon seeing a resident pleasantly interacting with what she believes is a real baby. Some communities have unfortunately caught onto this, and will take away or hide anything that makes the place dementia-positive in the hopes of attracting more residents’ family members. Do not fall prey to this. Your loved one with dementia is the one who needs the care—not you.

May 21, 2017

The Importance of Flooring Selections in Dementia Care Communities – Designing for Dementia

April 9, 2017

5 Tips: Visit your loved one and leave without a fight

Beverly and her husband stood at the doorway of the care community, pointing fingers (literally) and arguing. “What do you mean, you’re ‘going home!’” she cried. “I’m coming with you!” “No,” Beverly’s husband argued back. “You live here now!” We’ve all seen this same type of fight a million times, but how can you avoid it? 1. Don’t tell your loved one that you’re “going home.” When someone with dementia thinks about “home,” they probably aren’t thinking that the place where they currently live is “home.” They may be expecting to go with you, and this starts a huge fight over the definition of “home.” 2. Never tell your loved one, “You live here now.” This is always the start of a major argument. People with dementia have a hard time understanding logic, even when presented in a logical way. Something that makes sense to you and I does not always make sense to someone with dementia. 3. DO tell your loved one that you’ll “be back soon.” This is true. You don’t need to tell them when, but you can leave your loved one’s room and say, “Hey mom, I’ll be back soon.” This is a perfectly reasonable way to leave. You didn’t say that you were going home, and you didn’t have to come up with an excuse. 4. Come up with a reason why you can’t take them home right now. Things like, “My car is packed full of stuff and I can’t fit you right now,” or, “I’m going to the doctor and I’ll be waiting in the waiting room for a long time,” are good reasons to not take a person home. Remember that, in dementia care, it’s okay to take the word “lying” and throw it out of your vocabulary. It’s all about living in their world. 5. Get your loved one involved in an activity before leaving. I’ve literally watched families run to the door of a care community, which usually isn’t the nicest way to exit. Bring your loved one to the next arts and crafts project, to listen to the guy playing piano, or to a meal. Don’t just ditch and run—take a moment to ensure that they are actively engaged in something fun.

April 8, 2017