Is that “behavior” worth worrying about?

I often meet people who tell me about their loved one’s “behaviors” and ask how to “fix them.” My first question is this: Is that behavior worth worrying about?

Let’s take a few examples and decide which ones we should be worried about finding solutions for.

  1. They’ve begun to urinate in the house plants, thinking that they are outside
  2. They yell at the mailman, concerned that he is “keeping” some of their mail
  3. They think their spouse is still alive
  4. They accuse a relative of stealing money from them
  5. They have trouble taking a shower because they don’t like the water hitting them

Which of these five are most concerning to you?

There is no one-size-fits-all answer here. For example, maybe in your house, keeping your loved one living with dementia away from the mailman isn’t a big deal. Or, maybe it is a big deal: you’ve had a great relationship with your mail carrier for years, and this constant bickering is quickly causing rifts in that friendship.

Normally, I’d say that #3 is NOT a big deal: please, please, please Embrace Their Reality. Don’t argue and tell them their spouse is dead, or try to convince them otherwise. However, if your loved one living with dementia is constantly trying to take the car to go visit their spouse at work, you may have a problem. In this case, we need to ensure that the car is not available. We also need to keep them feeling safe and reassured that their spouse will be home soon.

Most of these have pretty easy solutions:

  1. Remove the house plants
  2. Time it so they are occupied when the mailman comes, or explain to the mailman the situation so he isn’t upset
  3. Embrace Their Reality(!)
  4. Let them know that, while you don’t believe it’s true, you will “look into it for them”
  5. Wrap a towel around their shoulders so the water his the towel first, or switch to a bath

The 10 most important things about dementia caregiving

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  1. Communicating with people living with dementia can be challenging. Understand that their world may be different from our world, and that’s okay. We want to EMBRACE THEIR REALITY rather than trying to convince them of things that are true in our reality. Just because their reality is a different shape, it doesn’t make it wrong.  
  2. Don’t get hung up on the word, “lying”: realize that if you are telling them the facts of their reality, you are doing the best thing for both of you.
  3. Here are 3 questions you want to use when talking to people with dementia:
    1. “Where do you think they are?” when someone asks you about loved one
    2. “Can you help me?” when getting them to do something with you
    3. “What do you think about this?” when introducing a baby doll or animal
  4. Get to know them on a personal level, and this will help you live in their reality. Ask, “What did you used to like to do?” instead of, “What do you like to do?”
  5. Offer them 2-3 choices instead of asking open-ended questions like, “What do you want to eat for breakfast?” or, “What did you do today?”
  6. TIMELINE CONFUSION is the concept that time isn’t linear in dementia. If the individual cannot identify their loved ones, it isn’t because they don’t know them or love them, it’s because these people don’t fit on their timeline.
  7. Never try to “convince” someone living with dementia of something. Don’t use “logic” to try to help them understand.
  8. No weddings, no funerals, no cemeteries
  9. Not everything is Alzheimer disease! The phrase “Altttttheimer’s and dementia” sounds ridiculous.
  10. Recognize that their timeline and reality may change, and that we can learn to be flexible and change with it. Dementia caregiving is an art form that takes practice and patience to learn.

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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.

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The BEST communication tip I have

Here it is, the best dementia care communication tip I have for you. Although I’ve been using it (and tweaking it) for a long time now, I didn’t really “name” it until very recently.

Ellen had a problem. “Dad wants to go out walking around the neighborhood, like he used to do…but he’s so confused! I’m terrified that he’s going to get lost or hit by a car or something awful. How do I convince him he can’t walk around the block anymore?” I paused and thought for a minute. “You can’t convince him that he can’t walk by himself,” I said. “So you need to ask him if you can go with him.”

CAN vs. WANT

If Ellen were to ask her father if he “wanted” her to go with him, he’d almost definitely say no. No, he’d think. This was his walk, this was his thing—he didn’t need or want help! Instead, I suggested she rephrase her question: “Dad, CAN I go with you? I’d love some exercise!”

It’s a totally different question, even though the goal is the same: she wants someone to go with him so he doesn’t get lost. Now, though, it’s hisidea if he takes her along. He’s also very unlikely to turn her offer down, because she’s asking for his acceptance and assistance. Use “CAN” statements in dementia care, instead of WANT statements. For example, check out these comparisons:

  • Do you want to paint this birdhouse with me? vs. Can you help me paint this birdhouse?
  • Do you want to take a shower now? vs. Can you take a shower now, we are getting ready to go out?
  • I want you to help me set the table for dinner! vs. Can you help me set the table for dinner?
  • The doctor wants you to move to assisted living because of your dementia vs. Can you help me pick a great place for you to stay during your rehab?

The beauty of this phrasing is that you can really use it in any part of your life, dementia care or not! People are much more willing to do things if they feel like it was their idea to begin with.

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How one woman got her husband to agree to attend adult day care

She knew that she’d have a hard time getting her husband, Ben, into adult day care. Ben loved working, and now that he was retired and had dementia, he still liked to find projects to do. Convincing him that he could benefit from adult day care certainly wasn’t going to work (and doing this with anyone with dementia is not advisable.)

Instead of arguing with him, she spent a couple weeks getting Ben excited about the opportunity. Each morning at breakfast, she’d begin talking about the adult day program, but reframing it. “There’s this new program,” she told him. “They need more people to work there, but it’s really tough to get in.” A couple weeks into repeating this idea, she finally announced to him that she’d gotten good news. “It turns out they have an opening!” she told Ben.

Ben was excited: he’d gotten into this new program. At first, Ben just went a couple days a week. He seemed as though he enjoyed “working” there, but didn’t really want to take on more days.

“Here’s the thing,” she told him. “They love your work and they want you to put in a few more hours…do you think you’re up for the task?” Of course, he was up for the task. Ben was thrilled to be needed like this.

“When will I see my paycheck?” Ben asked his wife. 

“Well, you see, it goes right back into the program, that’s how their non-profit status works,” she explained.

Ben goes to day care every weekday now. Both of them are very happy with how it’s worked out.

By embracing his reality, she was able to make this new arrangement work for both of them.

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HOW TO: 3 tips for keeping them engaged while you get other tasks done

“It sounds bad, but I can’t get anything done with my wife around,” Walter sighed. “She wants to ‘help,’ but I end up having to re-do her task or just stand over her shoulder the whole time, helping her do whatever it is.”

I’ve heard this story many, many times over. You want your loved one with dementia to be engaged and active, but you also don’t want to be doing 99% of the task yourself. And, more than anything, you want to get your own chores and errands done…but it’s tough when you have someone needing your attention 24/7.

The holidays are an especially challenging time when it comes to providing care for someone living with dementia. 

Let’s review my best 3 tips for getting someone out of your hair (in the nicest way possible!) while still keeping them happy and feeling successful:

  1. Set them up for success. This takes a little more time for you on the “front end,” but provides a lot of extra time saved on the back end. Find a task that is easy, repetitive, and doesn’t require any special or particular outcome. A good example would be folding towels or making a salad. When it’s done, it’s done, and it doesn’t need to look a particular way as long as the towels can fit in the cabinet and the salad has the ingredients in the bowl. 
  2. Ask them for help, and then let them do the task by stepping away. “Can you help me with…?” you ask. When they begin, step away. Encourage them. It may take a few tries to make this work so that they feel comfortable and confident. Your loved one may feel, at the start, that they “don’t know how” or are afraid to make a mistake.
  3. Don’t worry about the outcome. It’s all about the experience of doing the thing and the opportunity for you to have a break. Praise your loved one’s finished project, no matter what it looks like. 

Then, repeat. It could take a few tries to perfect this. Don’t give up.

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Comcast wants to control what you do online. Do you want to let them?

I try not to get involved in politics on my blog and in my business (although it’s really hard in this day and age, honestly) but this “Battle for the Net” issue WILL affect my business. I reach you and many other caregivers all over the world, and that’s because the Internet is accessible. What the FCC wants to do is make it so your Internet will be a lot like your TV service: you have to pay for Netflix, HBO Go, Showtime, basic cable, etc., in different packages. They want to make it so huge companies like Comcast and Verizon can do this to your Internet, too. Want to access Facebook? That might be on a different package than basic websites. 

I am asking you to do something (other than provide great dementia care) — click this link and sign the petition. And, if you feel like it, make some phone calls. Sign more stuff. Leave a comment for the FCC. Let me know if you have questions. 

Comcast wants to control what you do online. Do you want to let them?

Hospital Kindness Cart

Memorable Pets is my favorite company to work with. I’m currently working in my third community, and this is also the third community where I’ve brought Memorable Pets to work. (See example below)

My residents love playing with and cuddling the Pets. Currently, Memorable Pets are being featured in a Connecticut hospital. This is a really amazing thing, considering the challenges that I know come with hospital administrations. The fact that a “Kindness Cart” is really making a difference is wonderful. 

Volunteers take the Cart from room to room, visiting the patients with dementia. Each is offered something special from the cart: combs, books, floss, crayons, or other useful items. Many of the patients, it seems, choose a Memorable Pet instead. 

From my own experience, I have seen the impact that these realistic-looking pets have made on my residents. They have the same impact as the baby dolls often do. Sometimes, the impact is even greater, I think because of the kind of joy real pets brought to people in their younger lives.