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

Improv comedy and dementia care workshop now online

Our workshop is officially ONLINE which means you can take it from wherever (and whenever) you want! This is a cool opportunity for you to see how improvisational comedy works with dementia caregiving, especially if you can’t make it to Pittsburgh, PA for our workshops. We travel, so we’re happy to come to you, but if you’re just one person it’s more cost-effective to take the class online!

If you see this before the end of the day, use code MARCH28SALE for $25 off the normal price of the class.


What if I visit and he doesn’t know who I am?

Care partners regularly ask me about one of their deepest fears.

The fear usually goes like this: at some point, you’ll walk in to visit your loved one, and that person will look at you with a blank stare. “Who are you?” they’ll ask you, as your own eyes fill with tears.

Here’s the good news: this fear is mostly nonsense; a myth perpetuated throughout modern society through movies and TV shows. I blame 2004′s “The Notebook” for about half of it.

If your loved one living with dementia has trouble figuring out who you are, it’s not because they’ve forgotten you/don’t love you/you don’t matter/etc: it’s just because, on their timeline, you either don’t exist yet or aren’t the age they think you should be.

As an example, if you are 65 years old and your father remembers you being only 35, he’s going to wonder who this lovely 65-year-old woman is when she walks through the door. “Wow!” he thinks. “I know I like this person, I know she looks familiar…but from where?” In his mind, you’re 35, not 65. He may call you his wife, his sister, or another female relative or friend. This makes sense, right? I call this idea Timeline Confusion.

In this situation, we don’t want to spend time saying things like, “Dad! Don’t you remember? I’m your daughter!” Instead, it’s best to go along with where his timeline is. If he thinks you are your mother, that’s okay. If he suddenly begins touching your thigh, it’s okay to move away, but if he just wants to spend time with you, don’t exert effort trying to force him onto your timeline.

If the person living with dementia is your grandparent, there may be a very good chance that, in their mind, you don’t even exist yet! If they think of themselves as being your age, how the heck would they have grandkids? 

I’ve met a LOT of people living with dementia. I’ve only seen this Timeline Confusion happen a handful of times: most of the time, people recognize their loved ones on their timeline throughout the entire course of the disease. 

If Timeline Confusion DOES happen to your loved one, it will happen slowly. If something changes suddenly, it’s because there’s a medical problem: they may have a Urinary Tract Infection or suffered a small stroke. Change like this doesn’t occur overnight. 

22 Questions to ask about assisted living

I am often asked, “What questions do I need to ask before moving my loved one into an assisted living community?” Here is a pretty comprehensive list, but bear in mind, you are going to want to find most of these out through observation! Don’t show up and fire a million questions at the marketing director. I’m sure you can probably think of more questions as you go through this list.

  1. What activities are offered?
  2. Are there activities for people living with dementia, specifically?
  3. What about downtime? How much downtime is there for residents?
  4. What precautions do you have in place for people living with dementia in terms of safety? Locked doors? Alarms?
  5. Is this community designed specifically for people living with dementia?
  6. What time is breakfast? Lunch? Dinner?
  7. Are the other residents here about where my loved one is with regards to their cognitive ability?
  8. What time do residents wake up? What time do they go to sleep?
  9. Are there snacks offered throughout the day?
  10. How is the food?
  11. What is the staff-to-resident ratio? What about on third shift?
  12. Are there RNs and LPNs on staff, or just CNAs/caregivers?
  13. About how long do residents live here? Until they pass away?
  14. What hospice companies do you normally use? 
  15. Do you provide towels, toilet paper, soap, shampoo? What do we need to provide?
  16. What furniture is in each resident’s room?
  17. Are your staff members trained in dementia care? (If you ask this, they will say yes, even if it isn’t truly TRUE. Observe for yourself to find out.)
  18. If I need to reach a staff member via phone, who would I call? What if it’s the middle of the night?
  19. How many times per week do residents receive assistance in the shower?
  20. Are there many families who visit regularly?
  21. What outings are offered for residents?
  22. What entertainment is offered for residents? Does someone come in to sing or play an instrument?

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”

At home, in adult day care, in assisted living…how do you know if it’s a good fit?

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:

  1. 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? 
  2. 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.)
  3. Do they seem happy, generally? Again, we can’t really ask someone if they are happy, we just need to evaluate.
  4. Do they get the right nutrition? Not just food, but water. Are they eating and drinking enough?
  5. 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!

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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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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.” 

Although you can’t stop someone with dementia from asking the same questions multiple times a day, here are 3 things you CAN do:

  1. 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.
  2. 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.
  3. 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.