Tag: ftd

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

3 things you can do to cope with repetitive questions

“Where am I?” Nathan asked. “Where’s my room?” We’d showed Nathan his room about 15 times that day, and it was getting exhausting. I was new to dementia care, and wanted to “solve” this “behavioral issue” with some creativity. Here was the issue, though: you can’t stop repetitive questions. You can, perhaps, distract the person for a while, but you can’t make the questions cease forever. In order to help Nathan, I drew him a map of the community and pointed to his room. I affixed this to his walker. To some degree, this DID calm some of his anxiety: he liked maps. But it certainly didn’t help him find his room, nor delay the question-asking. (Hey, I was new to this, okay?) A lot of family members and staff members will ask me, “How do I stop so-and-so from asking me the same thing a million times a day?” I always smile and laugh, “Bad news, it’s not going to happen.” You can make someone a note, you can make all the signage you want, but it’s not going to stop the questions. Here are 3 things you CAN do: First, take a deep breath. Seriously. Don’t tell them, “You asked that already,” or, “I’ve told you a million times.” Take a deep breath, and this deep breath is for you, not them. Then, smile. Answer the question with a smile. They don’t remember asking you this before. Try answering the same question, but in a different way. Again, this is for YOU. I like to see how many ways I can answer the same question in a different inflection, with a few more or less different words in the sentence, or with a different vocalization. Get the person with dementia involved in something else. You are less likely to hear the same question again and again if they aren’t bored. Above all else, understand that you aren’t going to be able to “get” the person with dementia to “stop with the questions.” It’s more about your coping skills and how you decide to handle it. This is a popular post from a few months back. To get posts like this delivered right to your email inbox, sign up here.

October 29, 2018

“She KNOWS something is wrong with her.”

A woman in the audience raised her hand. “I have a good friend with dementia, and sometimes she’ll say, ‘I know something is wrong with me.’ It really breaks my heart, but I don’t know what to say! Should I tell her she has dementia?” Here’s what I said: She is already aware that there is something wrong, and we don’t want to make her feel worse by reminding her that she’s right. This woman already has something called ANOSOGNOSIA. Anosognosia means that a person is unaware of their own condition. While she knows something is wrong, she doesn’t know what it is. Let’s not tell her that she has a brain disease. What we DO want to do is to put the “blame” back on ourselves! Make your friend feel better by suggesting that you’re having a bad day yourself. When she says, “Something is wrong with me,” you can say, “Me too, I must be having an off day! I don’t feel great today, maybe I’m getting a cold. My brain feels foggy!” No one wants to feel alone. No one wants to feel like they are on a sinking ship, while everyone else is in a lifeboat. Make your friend feel like you’re both in the same boat, and this will alleviate a lot of her anxiety.

October 23, 2018

Always ask people with dementia for help

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! “He’s really combative,” the staff member complained, popping in my doorway. “Christian keeps slapping my hand away when I’m trying to wash his face.” “Okay, let me come check this out with you,” I suggested. We walked back into Christian’s room, where he was pleasantly sitting on a shower bench. He didn’t seem “combative,” but I watched as my staff member took the washcloth and reached for his face. As her hand went up to touch him, he slapped it away. “See!” she cried. “Look what he’s doing.” “Hang on,” I sighed. It seemed pretty obvious: he was afraid. Most people don’t like when someone they don’t know reaches for their face. “Christian, can you help me?” I asked. “Can you hold this washcloth and wash your face while I wash your legs?” Christian nodded and let me put the washcloth in his hand. I guided his own hand to his face and he began calmly washing while we cleaned the rest of him. ALWAYS ask people with dementia for “their help” with starting an activity. This could be anything: a shower, painting a birdhouse, a walk outside, completing a puzzle. When people are asked for help, they are much more likely to agree to do the task. If someone asks you, “Do you want to help me?” you think to yourself, “DO I WANT TO?” and that’s what you respond to. If someone asks you, “CAN YOUhelp me?” you respond to the “Can you” part. By making someone feel necessary and important, you are way more likely to get them to participate. This post is an old favorite. Be sure to sign up for my emails to receive more posts like this in your inbox.

October 7, 2018

Finding Calm in Repetitive Questions

Like many people with dementia, Lucille had a “phrase” that she used often. Well, it wasn’t so much a “phrase” as it was a line of questioning that she asked every 10-20 minutes. “HEY!” she’d call, whenever she saw me. “What time of day is it?” or “HEY! What day of the week is it?” Fortunately for Lucille (and, perhaps, unfortunately for me) Lucille’s favorite couch was located right outside of my office—so, she saw me a lot. There were days where I was the Queen of All That is Patient and I’d answer each time she asked with a sense of ethereal calm. “It’s 2:00, Lucille,” I’d smile, genuinely. And then, of course, there were other days when her line of questioning drove me absolutely nuts. “HEY!” she’d call out, and before she could finish her question, I’d say, “It’s Tuesday at 2:00.” Lucille, no matter what my answer was or how exactly I’d answer, was always pleased with the information. In a way, Lucille reminded me of an old cat. She had this perfectly-wrinkled face that would give way to a big smile when she got her answer. “Thank you very much,” she’d say genuinely, closing her eyes and letting a big smile cross her face. I liked Lucille, which made it easier to answer her repetitive questions. There were definitely days, though, where I would take a deep breath before answering. Taking a moment to myself and taking a deep breath gave me just enough calm that I could answer her without an attitude. That trick worked for me a lot. I tried to remember that, even though she’d literally just asked me 10 minutes ago, she did not remember that she’d asked. It was a new question and answer for her. One day, we were all on a bus ride together. “HEY!” she called up from a few seats back. I was in the middle of checking the time and ready to say, “It’s—” when she interrupted me. “What season of the year is it?” she finished. “What?” I was completely caught off-guard: I hadn’t expected this new question! “Um,” I paused, “Uh, it’s fall,” I replied. “Thank you very much,” Lucille said, closing her eyes and leaning back into her seat, a smile crossing her pleasant face.

September 7, 2017

“Mom remembers dad, but has a new boyfriend.”

Anonymous writes: My mother has been in a memory care center for 2-½ years. She has recently started kissing a fellow resident even though she still recognizes my dad when he comes to visit. Most recently, she has now been found in this other man’s bed twice. My dad and my sister are using humor to deal with the situation but I am heartbroken. I do realize that it is the disease and not my mom making these choices. How do you deal with these situations? A reader wrote in and asked me this question last week, and I answered it quickly, but wanted to go into more detail in a full blog post. The first, and most important thing that we need to deal with is the issue of CONSENT. Consent is a really challenging thing to measure when people have dementia. Honestly, due to the fact that we don’t know exactly what is going on in the brain of someone with dementia (does she think that he is her husband?, etc.) all we can ask ourselves is this: does she seem happy and willing to consent? Does the man in this relationship seem happy and willing to engage with this woman? If the answer is, “Yes, both parties seem happy,” then we can agree that the relationship is consensual. Once we get that difficult topic out of the way, we can deal with our own feelings regarding mom’s relationship with a new man. First—and, honestly, most importantly—mom is an adult. Mom can do whatever she wants. We might not like it, but she has lived a full life, and she has learned a lot about herself and about relationships. If mom wants to have a relationship with someone, we have to let her do it. Secondly, I think the “dad and sister” in this situation are handling everything really well. They are using humor to deal with it, and I really think that this is the best way to look at mom’s new relationship. Thirdly, we are not ever going to know exactly what is going on in mom’s head. Just because she recognizes dad, doesn’t mean that she doesn’t also think that this other man is dad, as well. Maybe she just likes this guy. Maybe she thinks he’s another version of her husband. Who knows. The point is, we don’t know for sure, but we do know that she likes this man. While relationships in dementia can be very complicated, the only two things that we need to worry about are consent and our response to the relationship. That is all we can control, and all we should try to control. I have seen some truly beautiful relationships develop between adults in dementia care communities, and they blossom best when all families and parties are on board.

August 28, 2017

How do I stop fighting with mom?

“Mom’s room is a mess!” Joe complained. “Every time I go in there, we argue about her clothes and her dirty briefs and all of that!” 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 briefs 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. Unfortunately, however, he had done just the opposite, for 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, matter-of-factly. “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. They stopped fighting, and, finally, started getting along again.

August 19, 2017

5 tips for awesome outings

I spoke to a great family recently. They do a lot of fun things with their mom, who has dementia, and they take her on a lot of outings. Mom always has fun on their outings, but when they get back to the dementia care community to drop her off…everything falls apart. I gave them a few tips to help make their outings more successful: 1. Plan to be back before 2:00. In fact, the earlier the better. People with dementia are like Cinderella, but with 12-noon instead of 12-midnight. Many people with dementia sundown in the mid-afternoon, some people even starting at 2:00 or 3:00. 2. Have a goal in mind. Plan to go out for lunch, and then come back. Plan to have some ice cream out at the mall, and then come back. Don’t linger, and instead plan the day and stick to that plan. 3. Do NOT go to your house. Or your loved one’s house. Basically, don’t go to anyone’s house. It’s a reminder to your loved one that they no longer live at home, and that can be really painful. 4. Do not get back to the dementia community and say, “We’re home,” or “You live here now.” If your loved one is like most people in moderate stages of dementia, this is going to start a fight. They often do not believe that they live there, and you’re contradicting what they know to be true. 5. Get your loved one settled in for lunch or with an activity, and then leave. Do not drop your loved one off at the door and make a break for it! On the other hand, you also don’t want to hang out all day after an outing. Find a way to get them involved in something at the care community, and then leave.

August 16, 2017

“He sleeps all day!”

Most people with dementia, especially in later stages, will sleep all day if you let them. A lot of caregivers come to me with the same problem. “I don’t know what to do! He/she sleeps all day. Is that normal?” It’s normal, if you let it be normal. Most people with dementia will err on the side of sleep if they’re given the opportunity. What I’ve found, honestly, is that if people are bored (and, especially, depressed) they will sleep. My advice is always the same: stop putting your loved one in front of the television all day and find something for them to do! Here are a few simple ideas that you can try immediately. They all revolve around the same concept: asking your loved one “for help” (even when you don’t need it) Ask them “for help” to: – Fold towels – Clean off the table and set up for a meal – Bake something – Match up socks – Read the newspaper aloud to you (maybe your eyes are “too tired” to read) – Come up with some new recipes – Show you the best way to garden – Help you label old photographs I wrote that list in about 30 seconds. There are a ton of things that you can get your loved one with dementia to do that don’t involve sleeping. Now, this all works great…unless your loved one is in a particularly late stage of dementia. People in end stages of dementia will sleep no matter what kind of activity goes on around them. That is the body’s way of slowly turning off. It’s hard to watch, but it IS normal. If your loved one is NOT in an end-stage of dementia, though, they should only be taking small naps throughout the day, not sleeping the whole way through it. Small naps are normal, and many older adults, even those without dementia, will do this as part of the aging process. What we don’t want to reinforce as normal, though, is the act of sleeping all day.

August 4, 2017

We aren’t talking about FTD enough

Samuel walked into the room and started immediately yelling about his boss. “I can’t believe this mother [explicative deleted]! He laid me off!” It was particularly sad because we all knew why Sam had been laid off: his FTD was nearing the unbearable. He was often very kind and funny, but when he got hooked on a topic, he was explosive. “You know what! [Explicative] this guy! You know what I mean!” he yelled to no one in particular. Sam slapped his forehead hard, three times in a row. “Ugh!” Most people don’t even know what Frontotemporal Lobar Dementia is until someone they love gets the diagnosis. FTD is a rare form of dementia, although it’s still one of the “top four” that I discuss in workshops on dementia care (Alzheimers, Vascular Dementia, and Dementia with Lewy Bodies are the other 3 “big” dementias.) FTD affects the frontal and temporal lobes of the brain, which control a lot of person’s ability to make decisions and control their “filter.” People with FTD often have trouble with one of three (or a mix) of the following: behavioral inhibitions, movement, and speech. It also tends to affect people before the age of 65, which makes it extra challenging. People with FTD often don’t fit in well at senior care communities because they are often 20+ years younger than everyone else and have a completely different type of impairment. They’re often very behavioral disinhibited, and will say whatever comes to their mind at any given moment. Your frontal lobe is the part of your brain that helps you “filter” your speech and actions. People with FTD have an impaired frontal lobe, so their filter is almost nonexistent. Poor Sam was a younger man, much younger than a lot of his peers with dementia. He also alarmed them, at times. His mouth was alarming to the older adults with Alzheimer’s disease and vascular dementia. They didn’t talk like that, and couldn’t believe that someone would. FTD is a particularly challenging form of dementia. I think that we need to spend more time talking about it. People who have loved ones with FTD need to know that others are struggling with this diagnosis in their families, as well. For more on this topic, check out my review of Fractured Memories.

July 8, 2017