Tag: aging

“But isn’t dementia care sad?”

Another short story from my time as a Dementia Care Director “I am leaving for the day, because my young son is at home with a babysitter,” Agnes told me calmly. “But I just wanted to tell you that I had the best time today, this was just wonderful,” she smiled, motioning to the little kids running in the courtyard. We had just had an Easter egg hunt, and everything had gone smoothly. Families and staff members had brought their little kids into the courtyard to hunt for the colorful eggs we had hidden with the help of some residents. Agnes lived at our dementia care community, but she did not know that. Seeing the kids running in our courtyard reminded her of when she had a young son, and her brain created a happy story where she had to head home to greet him. “I have to make sure I get home and pay the babysitter,” she added. Agnes’ story was as clear and rational as anyone’s, besides the obvious fact that she couldn’t actually leave. She didn’t have anywhere to go, and had she left, Agnes would have found that her son was a grown adult, and her home was no longer where she thought it was. There is no doubt that dementia is a complicated, sad group of diseases. I like to think, though, that dementia creates a happy internal world for many of my residents. This world is populated by beloved people and things, because these are the memories that have stayed around. These memories aren’t merely memories for people with dementia—they are real, and present. No, dementia does not always create a happy world. When it does, though, that world can be just as rich and colorful as any story that you’ve ever read.

June 20, 2021

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”

February 10, 2019

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.”

January 27, 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 if they “remember your name”

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

January 6, 2019

The always-made bed

Two single beds sat beside one another. One, unmade, sheets uneven, looked as though it had just been slept in. The other, made, simple—a single sheet on it. A black winter cap lay at the head of the bed, untouched for days, maybe months on end. The rest of the room contained women’s clothing. Clean clothes hung up in the closet, brand new adult briefs still in the package on the shelf, and women’s socks on the floor beside the bed. Dorothy sat in the other room, watching TV, holding close her little stuffed dog. She smiled and talked to the dog as if he were real. “I’m going to go eat lunch,” she told him. “You can follow me in there.” The unmade bed belonged to Dorothy. The made bed belonged to her husband, a man who had passed away over a year before. Dorothy often asked about her husband. “Where’s Jack?” she’d say. “I think he’s downstairs, working,” the family would offer. “Oh, he’s always working,” she’d smile, accepting this new truth. Dorothy was glad that her husband was still nearby. And, for a woman whose world existed in about 15-minute time frames, this reality was perfect. “We left the bed in the same condition as the day that my dad passed away,” her son said. “It’s better for my mom…I think it’s a comfort for her.”

October 11, 2016

Underestimating what people with dementia can still do

“Wow, I had no idea that she could still do that,” he said. “That’s awesome.” It’s not the first time that I’ve heard something like that: so many times, we underestimate what people with dementia can do. Often, we take tasks away from people with dementia because we don’t want to give them something that is “too challenging.” Really, if we put in a little time and patience, we may find that people with dementia can do a lot more than it seems like they could. This particular woman with dementia, Betty, likes to be busy. She grew up on a farm and is accustomed to doing a lot of different chores. Through some effort, we’ve found that she really enjoys puzzles and pattern-making—and she’s pretty good at those things, too. The task that I brought Betty is both a pattern-making game and a chore-like game. I figured that Betty probably knew how to sew, so I hoped that this task would be perfect. As you can see in the video, once Betty got started, she needed almost zero instruction. It took about 30 seconds to get her going on this task, and I did the first two holes for her. Once she saw how to do it, her fingers took over. Betty even began to hum a song to herself quietly, a sign to me that she had sewn many things before and probably enjoyed the work. [youtube https://www.youtube.com/watch?v=jLi8lkhVQF8?feature=oembed&enablejsapi=1&origin=https://safe.txmblr.com&wmode=opaque&w=540&h=405]

October 5, 2016

Loneliness & soup

I was killing time at the grocery store. Really, I was also hungry, but I would’ve been eating at my house if my friend wasn’t at a nearby doctor’s appointment. And so, I was stuck in an unfamiliar part of town, waiting for him. And so I ended up in the Giant Eagle grocery store. And then in their Self-Serve Soup & Salad area. I stood behind a very petite woman in her 80s as she poured hot soup into a to-go container. I glanced at her cart. It had another to-go container, presumably of salad, and then something else small. That was it. She finished filling up her soup container and paused, putting it down slowly. She glanced around. I watched as this small, fragile-looking person walked up to the sales counter and stood behind a woman in line about twice her size. She popped up onto her toes, trying to see around the other woman to the sales counter. I looked back at her soup, sans to-go lid. She seemed overwhelmed, ignored by the sales counter, and wandered back to her soup debacle. I held up a lid. “I read your mind,” I smiled. “Oh! Yes,” she said, taking it from me. “Thank you,” she smiled, and put the lid on top of the soup container. She moved it around. She flipped it over. She pushed it down, her arthritic hands and fingers struggling. “Do you want me to help you?” I asked. “Please,” she agreed. “My hands…” the woman began. I snapped the lid on with relative ease and passed her the container. She smiled. “Thank you very much.” The woman walked away, pushing a big cart full of three items. I found myself hoping that she had a friend or spouse waiting at home for her; or that, perhaps, this was only the beginning of her shopping trip, that she would get more items. More items, it felt like, would justify that big cart. Or maybe it would somehow make it less sad. I love working in dementia care, but I find myself wanting to do something for these older adults who live in isolation, dementia or not. Loneliness is an epidemic in the aging community.

September 28, 2016

“You look like a wicked broad!”

Joan was the second British woman who had lived in one of my dementia care communities. She had moved to the US after meeting her husband, an American soldier, in World War II—a story similar to the one that I heard from my first British resident. If you asked Joan, she could still tell you the story. “We met at a dance,” she’d offer. “They used to do these dances so that we could meet young American soldiers.” You’d ask her how her husband was at dancing. “No, he wasn’t any good. Americans can’t dance,” she’d reply, a shadow of a snarky smile crossing her eyes. That was my favorite thing about Joan: her sense of humor. Her moods were unpredictable, but she was always funny—and she knew it. Her humor was stereotypically English: dry, sarcastic, witty. I’d often tell her that I studied abroad in Bath, England. and this delighted her. Of course, the story was always new, and so was her reaction to it. “Ah! Bath. Yes, a nice little city,” she’d offer. Joan often responded well to me over other staff members. So, one day, when it was time for dinner, I offered her a seat. Joan was in a particularly bad mood that afternoon, though, and was not interested in sitting down. “No, no, no,” she repeated. “I do not want to sit down. I won’t do it.” “It’s okay, Joan, we’re about to have dinner,” I said, gently. “No,” she responded, then looked up at my face. “You look like a wicked broad…” she snapped at me. This really cracked me up. I’d never been called “a wicked broad” before, and I started to laugh, showing my teeth. Joan paused her criticism of me. “…with beautiful teeth!” I started to laugh even harder, and that snarky smile began to cross Joan’s face; she was enjoying this bizarre interaction. “I want your teeth,” she continued. “Please give them to me.”

September 3, 2016

A Tough Conversation

Usually, when a visitor to our community tries to “correct” one of my residents, I jump in and try to save the conversation. For example, if a resident’s daughter is visiting and says, “No, mom, don’t you remember, dad died years ago!” I will try to swoop in and change the interaction so that no one gets upset. When that same conversation is between two residents with dementia, though, I’m kind of stuck watching it happen. The interesting thing about working in a community that’s in a small town is that many of the residents knew each other from years ago.** Two of my residents, Ellen and Isabelle, are related by marriage. **Distantly related—cousins, in fact—but still related. Ellen is very high-functioning. She’s living in our Memory Care because she needs reminders, cues, and other help to keep her safe. Up until recently Ellen was actually living by herself in an apartment, but that was very dangerous. Isabelle can do most things for herself with cueing and assistance, but her short-term memory is awful. **She can’t remember anything that happened more than three minutes ago. **This makes the pair’s interactions difficult to listen to. “Ellen! What are YOU doing here!” Isabelle cried excitedly, spotting her cousin-in-law in the hallway. “I live here, my room is right down the hall,” Ellen replied, trying to be kind about it.** She knew that Isabelle’s memory was poor—she just didn’t realize that her own memory was impaired, too.** “Hey, Ellen, can you get someone to call my husband, Jim?” Isabelle asked. “I want him to come pick me up.” Ellen paused. I could tell that she knew Jim was dead, but she was mystified by Isabelle’s current state of mind. “Honey…I don’t think Jim can come pick you up today,” Ellen offered, slowly. “He’s probably busy,” she tried. Isabelle shook her head. “Nah, he’s retired! Can you call him for me?” Ellen sighed. “Honey…Jim is dead. My husband is dead too. I’m sorry…but don’t you remember? We went to their funerals together.” “What!” Isabelle yelled. “Jim isn’t dead! I just saw him earlier today! He drives a truck,” she reasoned. “No, Isabelle,” Ellen said, growing impatient. “He died years ago.” “Ah, you’re crazy, Ellen!” Isabelle shook her head. “Jim isn’t dead.” Ellen gave up. “Okay, Isabelle,” she said. “I’m going to go to dinner now.” Isabelle paused. “Hey!” she called up the hall. “Ellen! Can you get someone to call my husband!”

August 22, 2016