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

Enter the Gray Area: Communicating with someone living with dementia


“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.

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“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

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Stress on the body = stress on the mind


“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.

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You’d better learn how to beg for forgiveness instead of asking for permission

So many family caregivers will say to me, “But mom/dad/aunt/brother/spouse will not let me…”

  • Take the car
  • Move them into a care community
  • Pay the bills for them
  • Take over the healthcare Power of Attorney
  • Send caregivers to the house
  • Do the grocery shopping
  • Make any decisions for them
  • Bring them to the doctor

What I always tell these caregivers is, “Your loved one is never going to wake up one morning and suddenly be agreeable about these things.”

When your loved ones have dementia and can no longer make healthy decisions for themselves, it is no longer up to them what happens.

This may sound harsh, but think of it this way: would you want your loved one with dementia driving down the highway alone? No, probably not.

If that’s the case, why are you letting the car stay in the driveway? Why are you keeping the stove plugged in? Why are they at home by themselves most of the day? The answer is this: someone needs to take over their decision-making. And that person is you.

This is a “don’t ask for permission, beg for forgiveness” situation.

If you’re waiting for permission to do something regarding your loved one’s care, you’re going to be waiting forever.

Your loved one is never going to say, “You know what, I woke up this morning and decided to let you take over the bills, plan my day, and move me into a care community.” It’s just never going to happen. People living with dementia do not have the ability to plan ahead using logic and good judgment.

The hard truth is this: you need to be their decision-maker. When he or she can no longer make safe choices, you need to make those safe choices on their behalf. (And this doesn’t involve asking first!)

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Tune in to episode 3 of my podcast here or anywhere you listen to podcasts!

Do people living with schizophrenia have an increased risk of getting dementia? How big of an impact does depression have on dementia, and vice-versa? What is trauma-informed care?

This episode sponsored by Pure Vita Co., a medical supply company:

www.purevitaco.com

www.facebook.com/purevitacompany

Instagram: @purevitacompany

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>> Get the Dementia By Day Caregiver Journal

To answer these questions and much more, I bring in my long-time friend and mental health expert, Caitlynn.

Caitlynn has a Master’s in Clinical Psychology and lives in Oregon. You can follow her on Instagram at instagram.com/therapylyfe

How to call someone who isn’t alive anymore


This post is inspired by a question I received the other day on my Facebook page about my podcast. (So many mediums to find me!) Anyway, this reader asked about her mother, who constantly wants to visit and call her own parents. My reader is distraught by how frustrated her mother is—“Why don’t they ever visit or call me?”—and doesn’t know what to tell her. I completely understand, and I have a solution based on something I actually did years ago.

About three years ago, I was working at a dementia care community and sitting in my office when one of my residents approached. “Hey hun,” Renata started. “Can you help me with something?”

“Of course,” I smiled. “What’s up?”

“Well,” Renata paused. “I…haven’t heard from my son in a while…do you think I could use your phone to call him?”

Damn it, I thought. Renata’s son had died a couple years earlier. Certainly, I did not want to remind her of this awful fact, but how could I help her? She was asking me a very direct question with a very obvious solution. I thought quickly and responded, “Sure!”

I picked up my office phone and dialed my cell phone’s number. I waited until it rang a few times and heard the start of my voicemail, “Hi, you’ve reached Rachael Wonderlin…” and turned to Renata. “It’s going to voicemail,” I said. “Would you like to leave him a message?”

“Oh yes,” she said, accepting the phone. “Hi Lenny, it’s your mother…I hope you’re doing well, just wanted to check in with you. Please call me back soon and let me know how you’re feeling.”

She hung up and handed the phone back to me. “Thanks, hun,” she said, sighing lightly. “I feel a little bit better.”

Renata never asked about calling her son again. Instead of solving the FACTUAL problem—whether or not she could actually reach this man—I solved the emotional one.

This is how you solve a dementia-related “problem” like this: focus on the emotional problem, not the physical, tangible one. Use the tangible things around you to help the person feel better, like a phone call. Never, ever use these tangible things to convince that person that their loved ones have passed away. Instead, find ways to make them feel like they’ve done what they set out to do.

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