Tag: caregiver

“But Don’t You Remember?”

“But don’t you remember…?” I can’t tell you how many times I’ve heard people ask this of individuals living with dementia. Honestly, it’s almost comical the statements and questions I’ve heard. “Mom! Don’t you remember that you have a memory problem?” Ehhhhh…really? Okay, I’ve never heard anyone ask this EXACT question, but something like, “Don’t you remember, the doctor said you have to live here now because of your dementia” is about the same thing. We never want to QUIZ someone living with dementia. If you know the answer, you don’t need to ask them the question. It’s not going to “help” their memory. And, if you don’t know the answer, ask someone else. Here’s a great example if your loved one lives in a dementia care community: instead of asking your loved one, “What did you eat for breakfast today?” ask a staff member, “Did my mom eat well at breakfast today?” You’ll get much more reliable information and you won’t put your loved one in a tough spot where they need to recall something from their short-term memory. When I worked as a Dementia Care Director, I regularly watched families “quiz” loved ones about facts. I once even caught a visitor asking a loved one, “Do you remember me?” I cringed. “Of course!” I heard my resident exclaim, giving the woman a hug. Instead of stopping there, the visitor asked, “Do you remember my name?” Ugh. I bit my lip with irritation and anxiety as my resident struggled to remember the woman’s name. “Um, well…yes…it’s…it’s…I’m sorry, I must be slow today!” she said, trying to laugh off the awkward moment. My resident didn’t realize that she had a memory problem, and she was upset and embarrassed by her inability to remember her guest’s name. This was awful to watch, but there was nothing I could’ve done in that moment. Check out last week’s post on Timeline Confusion for more on this specific topic. The only thing that I can do now is tell you this: please don’t quiz someone with dementia. Don’t ask him what he ate for breakfast. Don’t ask her if she’s able to recall yesterday’s events. As I often tell care partners: if he could, he would, but he can’t, so he doesn’t. What you can do is bring up long-term memories. Ask a leading question in order to get him to understand the context of the conversation. “Remember how hilarious it was when Sarah used to hide behind curtains as a child?” People with dementia retain their long-term memory, or at least many pieces of it, for most of their lives. You may need to assist with context, but focus on things that you shared with this person. Ask her how she feels about something, how she enjoyed her job at the local soda shop as a kid, or what her favorite pastime is. Just don’t quiz her.

March 14, 2021

Socialization is important for people with dementia

Jean had become pretty isolated in Assisted Living, Her dementia had progressed, and suddenly the other women were picking on her about it. Because she did not live in a Dementia Care environment, Jean’s peers were nothing like her. She stopped coming to meals, and she stopped going on outings—two things she had previously enjoyed. We had two buildings right next to each other: a dementia-specific community (where I worked) and then a typical assisted living building next-door. Jean had been living in the assisted living side for a couple years, but her dementia had gotten progressively worse. Eventually, it just didn’t make sense for her to stay in assisted living. I convinced Jean’s daughter to move her to my dementia care community so that we could “try it out.” On the first day she moved, I was actually able to take her out to lunch with a few of my other residents. She fit in perfectly: it was like she’d been there the whole time. No longer was Jean isolated by her peers. Because she now lived in a dementia-specific community, her peers were much like she was. In fact, they didn’t even notice that Jean was confused. To them, she was like anyone else: a perfectly happy, normal person. Seeing her come out of her shell reminded me of how important socialization is. We need to be around people who support us, and this is particularly true of people with dementia.

February 8, 2018

"You’re not my son.”

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.

June 20, 2017

“I don’t really remember it, but I know it’s there.”

We were playing a “fill in the blank” game. I had gathered six of the residents in the front hallway of the Skilled Nursing Facility, in the hopes that more would join as they walked by. My little trick worked, and soon I had 10 people gathered around, engaging in the game. This fill-in-the-blank book is one of my absolute favorite things to do with people who have dementia. It never ceases to amaze me how many of the residents can recall lyrics, sayings, or phrases that they know. Sometimes, a lyric will even inspire everyone to start singing. Julia stood next to me. She was a thin, pleasant woman of 86 years old. Julia loved dancing, which I had recently learned, and particularly loved anything with a fast beat. Julia’s dementia was fairly progressed, so it was challenging to hold full conversations with her. She always responded to your questions or comments, but sometimes the response was about something completely off-topic. In this game, however, Julia was a master. “You ain’t nothin’ but a…” I started. “Hound dog!” the group said, and Julia, faithfully on my left, also added quietly in my ear. “A penny saved…” I started. “Is a penny earned,” the group responded. Julia touched my arm to get my attention. “I don’t really remember it, but I know it’s there,” she said, pointing to her head. What a great way to describe the complexities of dementia care, I thought.

February 10, 2017

You are here because you have memory problems, remember?

The pair stood in the hallway, both with their hands on their hips. “Mom,” Andrea sighed, exhausted. “You’re here because you have memory problems, remember?” she asked. Well, that’s kind of a paradox, I thought. “My memory is just fine!” Elena yelled back. “I don’t have any trouble with my memory!” Of course Elena does not realize she has memory problems—she can’t remember long enough to realize there’s an issue! I have heard this type of argument again, and again, and again. So many caregivers desperately want their loved ones with dementia to understand…and they can’t. There is no use in trying to convince someone with dementia of the facts. My best advice in this kind of situation—the situation a loved one keeps asking “why am I here?” or “why can’t I go home?”—is to answer the question in a way that makes sense. You could say, “We’ll go home later,” or, “You’re here because the nurses and doctors can see you,” or, “You’re here because of that brace on your arm, and when that heals, we can talk about you going back home.” You don’t need to make someone with dementia understand. Instead, it is best if you help them feel better about their current situation.

September 23, 2016

These are a few of my favorite things…for dementia caregivers! Block & Pattern Boards Coloring Books Finishing Lyrics Big-Piece Puzzles Lace & Trace Kits Source: dementia-by-day.com

September 20, 2016

How to move mom into assisted living without a battle

I get asked about moving loved ones to dementia care communities all the time. Families usually feel guilty, panicked, and concerned that their loved one with dementia will be very angry with them. Here are some of my favorite tips to make it go smoother! Order my book and get a whole chapter on this topic 1. Understand that, at some point, the person with dementia can no longer make a safe choice regarding their own care. So, when your mom told you that she “never wanted to move to an old folks home” that was probably when she was in her best state of mind. Now, she’s not in her best state of mind. Now, she needs more care than you can probably give. So give yourself a break! 2. Visit a few communities before making a choice. You should look at location, affordability, levels of care (do they have resources available if mom needs some physical rehab?) and general environment, which includes smell, look, feel, and taste (check out the dining rooms!) 3. If your loved one is going to panic when they hear about the move, DON’T TELL THEM. Suggest that they are going to be staying there for a doctor’s appointment, to eat meals, or just to meet new people. Never say, “you live here now,” which implies an indefinite amount of time. 4. If they will handle the move without much trouble, let them have some control over where their new room is and how it’s set up. Put them in charge. Let your loved one with dementia feel as though she can still make some choices regarding her care. 5. Visit as often as you want. There is no right or wrong answer here. It depends entirely on you and your loved one. When can you take your loved one out for lunch? As soon as you feel it’s appropriate! Those are just a few quick tips. If you’re considering moving your loved one into long-term care, and need some more specific advice, I recommend giving me a call! I help a lot of family members make that transition.

September 16, 2016

The dementia time machine

She laughed. “Yes, my father and I were just talking about it the other night.” Mimi was nearly 100 years old. Her father had probably died 40 years ago, but she talked about him as if he was living nearby. “He was telling me about the chores we had to do, and we were both laughing. He doesn’t work us kids too hard, though,” she smiled. Talking to Mimi is so fascinating. For me, it’s about striking a balance between the past and the present. I never know for sure what world she’s going to be living in: is her father still alive, or has his passed away? Sometimes, Mimi talks about her family members as though they’ve passed. “My mother and father were very good parents,” she says at times. “My sister is still with me, which is good.” Her sister, in our world, is not alive. But I am glad, that in Mimi’s world, her sister is alive and well. In order for me to avoid contradicting her reality, I always speak to Mimi in the present tense, until I hear her switch to the past tense. I let her do the correcting, and it’s better when she corrects me than if I were to correct her.

September 9, 2016

Wonderlin Caregiver Hotline

Whenever someone finds out I work in dementia care, they always have questions for me about themselves or a loved one. I love helping people find answers to their questions. That’s why, now, I offer a caregiver hotline. Pay online ahead of time, send me an email and let me know some times and dates that work for you, and we’ll talk on the phone for an hour! $25 gets you an hour-long call and all the questions you can ask. Feeling guilty about moving a loved one into a care community? Not sure if a loved one’s behavior is normal, or what you can do to fix it? Check out my portfolio page for more information.

August 22, 2016

Lunch & Old Friends

A memory of mine from two years ago: I had taken a few of my residents out to lunch when I noticed a woman across the restaurant quietly observing us. It’s not uncommon for me to get a few looks or smiles when I’m out with my residents, but this woman looked as though she wanted to speak to us. A minute passed, and the woman from across the room walked over to our table. She was older, perhaps in her late 70s. She smiled at one of my residents, Ruth, and gently touched her on the shoulder. “You look so familiar to me. I know you from somewhere,” the woman said. Ruth looked up at her. “You look familiar, too!” she responded. “What is your name?” the woman asked Ruth. Ruth told her, and the woman smiled. “My husband worked with you at the department store down the road for years. Do you remember James Quinn?” the woman asked Ruth. I bit my lip. She doesn’t know that Ruth has dementia, I thought. Fortunately, Ruth’s long-term memory is very much intact. “Oh! James Quinn! He is such a lovely man! He was my manager at the department store,” she smiled, clutching the woman’s hand. The woman’s eyes twinkled and she held Ruth’s fingers in hers. “He was a wonderful husband,” she said. “Unfortunately, he passed away last year.” “Oh, I’m so sorry,” Ruth replied. The woman told Ruth a couple more stories. Ruth smiled and asked questions. “Now, your husband…did you say that he had passed away?” Ruth asked. The woman looked slightly confused. “Well, yes, sadly, he died last year. A long battle with cancer,” she explained. The two exchanged a couple more words and gave each other a hug. The woman left the restaurant. Ruth turned to me. “I didn’t have the heart to ask if her husband James was still alive,” she whispered, eyes wide. “I’m sure he’s doing fine,” I replied, softly. “I hope so. He was such a nice man,” Ruth said, thoughtfully.

August 6, 2016