Check out the first episode of my Dementia By Day podcast!
I meet a lot of care partners who look after individuals living with dementia. The recurring theme amongst these care partners—many with varying backgrounds and experience levels—is that they all feel tired.
Caring for a person living with dementia is not the same thing as raising a healthy child. Yes, babies are exhausting, but babies grow up into children who, in the very least, allow you to sleep more than 3 hours a night. People living with dementia do not get better as time goes on…they get worse.
I’ve had people say to me, “Well, my mom took care of me, so now it’s my job to take care of her.” Sure, yes, it is your job to care for her, but that doesn’t mean you have to be with her every second of every day.
I don’t hate this AARP billboard, but I don’t love it, either. Roles do change, and often adult children or a spouse/partner will end up caring for someone they didn’t anticipate taking care of. The problem that I do have with this billboard is that it imbues caregivers with guilt. Or, at least, it makes me feel that way. When I see this billboard I think, “Wow, I need to make sure I’m there for my parents the way they were for me!”
As I think that, though, I realize that there is no way I could be there for my parents the way they were for me. I’m a healthy adult now. I was a healthy (and relatively easy) child and teenager. Taking care of a person who is sick, and will only get sicker, takes a village. It’s not the same as having one or two people raising a healthy child. It’s about a group of people—a family, a home care agency, a dementia care community—working together to care for someone.
Care partners already feel an immense sort of guilt. I just did a presentation in front of 100+ people. A woman asked me, “But how I do get rid of the guilt for moving my husband into a care community?” She bit her lip to hold back tears even as her voice cracked. “Because you did what was best for him,” I said. “I know this is true because you’re here, learning more about dementia. You wouldn’t be here if you didn’t care.”
There is no competition to see who is the best care partner. There is no “winner” here. It’s about keeping yourself in the right mindset and the right place in your own life. You can’t care for someone else if you yourself are not healthy.
I had someone tell me recently that they’d used my Embracing Their Reality techniques when talking to their mother with dementia. “I told her that we were going to see her parents, and she looked confused. She was talking about her parents the week before, so I just started the conversation about seeing them! Embracing her reality didn’t work,” he said. Here’s the problem: he didn’t embrace her reality. All he did was assume that, because she’d talked about her parents the week before, she’d be in the same reality the next week.
Use these 5 “L” steps to embrace someone’s reality effectively:
Don’t assume that you know where your loved one’s reality is that day. You have to listen before you make a big statement that you think reflects their reality. Listen to their context clues: for example, if she’s talking about her parents as if they are still alive, that’s what she believes that day. We can’t hang onto where she was the week or even day before. It just may not be accurate anymore.
Legitimize whatever they say to you. If they tell you that their neighbors stole their garden gnome, agree that their gnome seems to be missing, and you’re going to “get to the bottom of it” by talking to the neighbors. You don’t have to 100% jump to conclusions with them, but you do need to listen and legitimize whatever they say.
Lean into what they’re saying so that you can embrace their reality effectively. For example, if today she’s speaking about going to her mom’s house, she probably thinks her mom is alive. Lean into that with a small statement or question, something like, “What were you thinking about doing at your mom’s house today?” This gives her the feeling that you’re listening and agreeing, but it also gives you a bit of leeway: if she was just speaking generally about how she used to go over there, you don’t look totally crazy by talking about someone she knows has died. If she’s talking about her parents and asking you a question like, “Where are they right now?” You can say, “Where do you think they are?”
You’ll know from step 3, Lean, exactly where her reality is. Now, Leap into that reality with her, wherever it is! Talk about what she’s talking about. Don’t try to bring her back to our world. If she’s talking about going to work, talk about that work with her. Ask what projects she’s working on there currently, how her boss has been, and if her coworkers are fun to be around.
Learn from your successes and mistakes when embracing the reality of someone living with dementia. Recognize that while their reality may evolve and change, you’re going to be just fine when you take a moment to figure out where their reality is that day.
She probably can’t do it herself, or forgets to start. It might make the most sense to do a 30 min call with me, there’s about a million suggestions we could talk through.
I’d have to know a lot more about your situation, but it’s probably less about agreement and more about using tips and tricks to get them in. It may also be a situation where a bed bath is all that works.
Well, if her symptoms are causing her issues, I’d definitely want to know if we could at least alleviate the symptoms. It’s true, she may not be a candidate for surgery, but she may be able to have some of her symptoms dealt with? Ask the docs if her symptoms could be alleviated…if not, I’d say don’t bother if she’s not a candidate for surgery, as the visit could be very uncomfortable for her. If you do elect to do the checkup, ensure the doctor is female and that everyone recognizes your sister has dementia.
Why you SHOULDN’T tell someone living with dementia that a person has died—I get asked about this all the time!
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.
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.
Hi Cecelia! Our next one is on June 29th. I can send you extra details if you email me directly, firstname.lastname@example.org