Dementia By Day: A Blog By Rachael Wonderlin

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.

They’ve begun to urinate in the house plants, thinking that they are outside

They yell at the mailman, concerned that he is “keeping” some of their mail

They think their spouse is still alive

They accuse a relative of stealing money from them

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:

Remove the house plants

Time it so they are occupied when the mailman comes, or explain to the mailman the situation so he isn’t upset

Embrace Their Reality(!)

Let them know that, while you don’t believe it’s true, you will “look into it for them”

Put simply: definitely not.

In order to combat ANY sort of loss, we need a couple things in our mental toolkits, right? We need the ability to process, store and recall information, and we also need the ability to understand the passage of time.

A loss could be something like losing a beloved relative or friend, moving from a home you’ve lived in for years, the sale of that place, the loss of a pet, or anything else that would cause pain.

People living with dementia do not have the ability to process, store and recall information that they heard. This is why it’s futile to tell them about a loss, even if that loss is serious. Telling a person with dementia that their loved one has died or their beloved house was sold is only going to result in pain. And then, twenty minutes later, they’re asking about the house again.

I recently had a caregiver ask me about this. She said, “My mom always talks about the apartment she used to live in. We still have it rented, but she isn’t ever going back there...what do I do when she talks about it?”

I advised the caregiver that avoid telling her mom she isn’t going back to the apartment, and even suggested that they stop renting it. “I know it feels like a betrayal,” I said, “but if she’s never going back there, continuing to rent it out of guilt is just a huge waste of money!”

People living with dementia also have trouble processing TIME. When we’re dealing with grief, we need to be able to understand the passage of time. We need to be able to think back to the past and then to remember where we are currently.

Telling a person with dementia about a loss is unfair when they can’t grieve it properly.

Caregivers: Are you signed up for my email list?

“We bring Rachael in for a different perspective,” the nursing school’s professor told her class. “As I said before: do what she says in practice, but remember to write the opposite of what she says when you’re taking your boards.”

The class nodded, but I was shocked. “Wait, nursing schools still teach reorientation? I thought they stopped teaching that years ago!”

“Unfortunately not,” the teacher shook her head. “The textbooks and lesson plans all include information on correcting people living with dementia.”

Years ago, newcomers to the world of dementia caregiving were taught to reorient someone living with a dementia disease. Reorientation is the idea that you correct and argue with the individual in the hopes to “fix” what they believe to be true. For example, if a person with dementia said to you, “I saw my mother yesterday!” you would reply, “No, you didn’t, your mother has been dead for twenty years.”

Reorientation is cruel, unnecessary, useless, and ultimately painful for everyone involved. The person living with dementia will forget what you told them and ask again. You, in turn, will be forced to restate your case.

But what’s the alternative?

After getting my Master’s in Gerontology, I began my dementia care journey at an assisted living and dementia care community in Burlington, North Carolina. I learned, at some point, about using “redirection” and “distraction” when communicating with people living with dementia. These ideas mean that, when a person with dementia presents an untrue fact or belief, you redirect the conversation or change it entirely. For example, if the person were to ask, “When can I go home?” you could say something like, “I don’t know. Let’s go fold these towels.”

I quickly found that these techniques didn’t cut it, either. I once had a resident say to me, “Why does no one around here ever answer my actual question?” This struck me. I thought, yes, why do we feel like we can’t actually answer your question?

We’re taught, too, never “to lie” to someone living with dementia. Then what, I ask, are we supposed to do? Evade every question? Make someone cry by reminding them that their parents died decades ago? Force someone to do the math on their age and the current year?

No. I began to work on what I now teach: the idea that we can embrace the reality of the person living with dementia.

When we embrace the reality of someone living with dementia, we throw out the word “lying.” Instead, we enter the truth of their reality. As I teach my workshop attendees, readers and podcast listeners, if it’s true for them, it’s true for us, as well.

Let’s break this down in an example. Let’s suppose that your mother is 85, has dementia, and lives in your home with you. In her reality, however, she believes that she is 50 years old, works outside the home, and lives in her own house. Which reality is true?

If we embrace her reality effectively, we live with her in her truth. When she asks, “When can I go home?” you say, “Let’s go later.” When she asks you where her parents are you say, “Where do you think they are?” Whatever she tells you is the correct answer. “Yes, that makes sense, I think they’re probably at work,” you agree.

When we reorient someone living with dementia, we correct them: we tell them that what they believe is wrong. When we redirect or distract them, we throw them off balance by avoiding their questions. When we get scared of the word “lying,” we cautiously avoid letting them live their truth.

Dementia care is a gray area and caregiving is an art form, much like a complicated dance for which we can’t quite learn all the steps.

Here’s the good news: we don’t need to know all the steps ahead of time. If we find a way to embrace their reality, we can thrive in that gray area.

Let's talk interior design in dementia care. I share a story from my past and talk about WHY what I'm doing now is so important to me. Amanda and her team at The Simple Home are sponsoring this episode! You're definitely going to want to check them out. To see the other blog I mentioned, check out Designing For Dementia.

To find them:

Instagram: @thesimplehome

In this episode, I discuss the 3 worst move-ins of new residents to dementia care that I've ever been a part of! Let's talk about how we could've made these moves into senior living WAY less painful. This episode is sponsored by TeleCalm, a phone service that assists adults living with dementia and their caregivers.

Learn more about teleCalm safe phone service for seniors with dementia

https://www.telecalmprotects.com

“Oh yeah, every time that dad forgets mom is dead, we head to the cemetery so he can see her gravestone.”

WHAT. I can’t tell you how many times I’ve heard some version of this awful story. Stop taking people with dementia to the cemetery. Seriously. I cringe every single time someone tells me about their “plan” to remind a loved one that their loved one is dead.

I also hear this a lot: “I keep reminding mom that her sister is dead, and sometimes she recalls it once I’ve said it.” That’s still not a good thing. Why are we trying to force people to remember that their loved ones have passed away?

If your loved one with dementia has lost track of their timeline, and forgotten that a loved one is dead, don’t remind them. What’s the point of reintroducing that kind of pain? Here’s the thing: they will forget again, and they will ask again. You’re never, ever, ever, going to “convince” them of something permanently.

Instead, do this:

“Dad, where do you think mom is?”

When he tells you the answer, repeat that answer to him and assert that it sounds correct. For example, if he says, “I think mom is at work,” say, “Yes, that sounds right, I think she must be at work.” If he says, “I think she passed away,” say, “Yes, she passed away.”

People like the answer that they gave you. Also, it takes you off the hook to “come up with something” that satisfies them. Then, twenty minutes later, when they ask where mom is, repeat what they originally told you.

"When can I go home?" is probably the most dreaded question that any family caregiver or care staff member hears from a person living with dementia. Panic ensues as the caregiver stumbles through trying to tell the person that they "can't" go home. What can we do instead? This episode is sponsored by OpenCareApp!

For more on what I do, check out my blog on DementiaByDay.comand my portfolio site, RachaelWonderlin.com

LEARN MORE ABOUT OPENCARE

Website: http://OpenCareApp.com/learn

“My Mother has dementia as well as high blood pressure. She is on medication for the blood pressure, but often has blood pressure spikes. Recently, it spiked to 214/82 and required her to go to the ER. Does a spike like this, or even less severe spikes, cause dementia symptoms to become worse temporarily or even permanently?”

The short answer: definitely, yes. 

Stress on the body causes stress on the brain. When there is stress on the brain, there is stress on someone’s mind and thinking patterns. Consider this: when you’re in a stressful situation, such as an accident or emergency—or even something like a deadline at work—how clearly are you thinking? Most likely, you react pretty automatically. You don’t necessarily think everything through, you just act. This is good news, usually: our brains evolved to react quickly in emergencies. 

In bad news, prolonged stress can also cause huge problems for humans. This is true even of people without dementia! Caregivers are under immense amounts of stress, both mentally and physically, each day. Humans weren’t really built to deal with regular, ongoing stress.

The same thing goes for someone living with a cognitive impairment. Outside factors that cause stress will also impact a person’s ability to function at their best. Because they are already impaired, extra physical or mental stress will only exacerbate that impairment further.

This is also called delirium. Delirium is a sudden onset of confusion that should subside. If it doesn’t subside within a week after a trauma or illness, or seems to be getting worse, definitely consult a physician.