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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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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Caring for yourself + why I don’t love these billboards

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http://cargocollective.com/juandiegoguzman/filter/Juan-Diego-Guzman

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. 

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Never ask someone with dementia 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 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.

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3 keys to accepting change in dementia

I host a monthly support group in my area, and yesterday’s meeting made me think a lot about acceptance. We had a great discussion: all the attendees are care partners of people living with Mild Cognitive Impairment or early stages of dementia, and they each expressed some level of learning to “accept” their loved one’s changing condition. 

When we talked about why and how people learn to accept a loved one’s changing condition, we also talked about the need to put resentment behind us.  We acknowledged that it can be really difficult to not resent that a loved one can’t do everything they used to do: the chores around the house, moving from one task to another, even putting on a coat without reminders and assistance. 

Here are my 3 keys to accepting change in dementia. You probably have a few other ideas, so be sure to email me with those thoughts! I may add them to a new list.

  1. Recognize that if they could do it, they would. They aren’t not-doing-something to get on your nerves. They literally can’t. do. it. In fact, I’d argue that they probably don’t want to feel like a “burden” to you at all, and would be mortified if they ever truly realized how much they can’t do anymore. Dementia gives the person with dementia a “gift” every now and then: while it takes things away, it also prevents a person from realizing how much they’ve actually lost. You know, of course, which makes it all the more difficult for you as the caregiver.
  2. It’s about education and support. I find that the more people learn about dementia, the more accepting of a loved one’s condition they become. Consider this: the don’t-get-it-won’t-get-it people never come to my workshops or training sessions: they don’t want to “get” it! If you’re reading this, you want to get it. That’s huge. It speaks volumes of your character that you’re out here, searching for more information, educating yourself. I also recommend support. Support for you may mean many things, but most of all, try to find a support group in your area. I 100% guarantee that other care partners have very similar stories to your’s.
  3. It’s okay to get frustrated. Don’t beat yourself up for snapping at them yesterday after they asked about that thing for the 15th time. You’re allowed to get annoyed, as long as it’s not all the time. If you find yourself snapping at your loved one daily, it’s time for you to get some extra help. This means time to yourself, caregiving assistance, maybe therapy, and definitely a support group. Remember that even if your loved one forgets day-to-day interactions, they won’t forget ongoing emotional battles.

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Is that dementia-related “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

#1 Reason That Routine Is Going to Save You a Lot of Drama

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Routine. It’s about what you do regularly, probably every day, even if you aren’t consciously thinking about it.

Routine is essential when you’re caring for someone with dementia. Not only is it just about what you do, it’s about what they used to do. What does that mean?

It means that we need to rely on prior knowledge about the person with dementia to help us establish a positive, successful routine. What they do NOW may not be exactly what they used to do, and the person with dementia is, as we know, usually pulling from the PAST for information about their current life.

And you may be thinking, “Well, duh!” but, really, consider this: in order to really assist someone with dementia, you need to know them as an individual.

My favorite example is this: if you’ve been taking a shower in the morning for the last forty years, and then someone shows up at your house to assist you with a nighttime bath…is that going to throw off your whole day? Yeah it is! You’re going to be grumpy, frustrated, and probably confused.

Many people with dementia are unable to say, “Hey, I’ve been a morning-shower-person for years, can we change my schedule?”Instead, you just end up trying to give someone a bath who is irritated and confused by the change. Now, they’re in a bad mood, but you aren’t sure why. And, really, it’s just because you didn’t adhere to their old routine.

Tiny, almost insignificant-seeming things make up important pieces of an individual’s life. Take me, for example: I always sleep holding a pillow. And, it can’t be just ANY pillow, okay? It has to be a certain size and shape. Now, this may seem odd, but it’s a huge part of my nighttime routine. When I’m missing my pillow, or when I try to substitute a different pillow in its place, my whole sleep cycle gets thrown off!

In order to create a routine that works best, learn about the individual and what they used to do. It’s going to save you a lot of drama and detective work on the back-end!

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Only 3 Questions You Need in Dementia Caregiving

These are my best 3 tried-and-true questions that you need in dementia caregiving. Are you ready?

1. “Where do you think they are?”

This is the question that you’re going to use with someone who has dementia when they are talking about a loved one who has passed away. For example, perhaps your mom is saying, “Hey, where’s my dad?” You know that her father (your grandfather) died years ago, but saying, “Don’t you remember? He’s been dead for years!” is a terrible answer. Let’s figure out where her reality is so that we can embrace it! Ask her, “Where do you think he is?” and then repeat that answer back to her. For example, it may go like this:

“Where’s my dad?” / “Where do you think he is?” / “I think he’s at work.” / “That sounds right, he must be at work.”

The great thing about this answer is that it takes you completely off the hook: you don’t have to come up with anything, and you won’t accidentally give them the wrong answer! I spoke to a staff member at a local SNF recently who told me about the wrong answer she gave one of her residents. “Uhh…I think your husband is at work,” she offered. “My husband is on disability, so he doesn’t work!” the resident called back, annoyed.

If the person you are caring for believes that their loved one is dead, you can also confirm this. The trick is to always repeat their answer back to them. You can also reuse their answer, without re-asking the question, multiple times in a row!

2. “What do you think about this?”

This is the question that you’re going to use when introducing a stuffed animal or baby doll to a person with dementia. Just like in the first question, we give the person with dementia the opportunity to tell us what THEIR reality is! We don’t want to introduce a stuffed dog and say, “Look at this real dog!” because they may say, “That’s not a real dog.” Let them guide you to what their reality is, and then do that.

3. “Can you help me?”

If you ask someone with dementia if they “want” to do something, what will they probably tell you?

They’ll probably tell you, “no,” even if they may have been interested in the thing you were asking about. If you ask someone “for help,” you’re actually asking a completely different question! I’ve done this many, many times with people who have dementia. The phrase, “Do you want to help me?” or, “Do you want to…” is very different from, “CAN you help me?” “Can you” inspires a sense that you are the one needing assistance, and everyone wants to feel helpful and needed!

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Dementia-Friendly Days Out

A guest post by Ruby Clarkson | Writer, editor, animal lover and coffee enthusiast

Dementia is a challenging group of diseases that causes many different problems, but that doesn’t mean that those who are living with dementia can’t enjoy a lovely day out. In fact, it is good for them to get out and see different things – any kind of stimulation for the brain can help them to feel more like their old selves, even if the feeling is not a permanent one. 

And for those caring for friends or relatives who have dementia, it can be difficult to decide where to go and what to do. A day out is good, but where is safe and secure? Where will make the person happy? Where will cause more upset? It can often cause stress and anxiety for the carer, and in the end the idea of a day out can be mooted, which is a shame. 

I reached out to Dorothy, an individual that has her dementia care provided by Helping Hands in order to obtain an insight into how a day out can be friendly. Dorothy stated that  “There really is no place like home, and with Magda’s support I am able to keep in touch with all of my friends and neighbours. We visit church every week for the Sunday morning service, I can visit the shops and I also take part in a local knitting group. This really is one of the greatest joys of staying in my own home around people I know.”

With Dorothy’s case in mind, here are some places to go and things to see that are particularly dementia friendly. You’ll see the difference immediately, and hopefully make your loved one happy for a while.

A Trip To The Past 

What many people find with those with dementia is that although their short term memory is not good – perhaps it doesn’t even exist – their long term memory is almost entirely intact. Therefore, a day trip that offers a glimpse into their past will be ideal, and help them to feel at ease. 

Think about places they used to go to as children, for example. It might be that a day at the seaside is perfect, complete with deckchairs, ice creams, and even donkey rides. Let them enjoy the sun and build sandcastles and feel the wind in their hair. Or perhaps a museum with plenty of exhibits that link back to when they were younger. They will happily be able to talk about what they see and enjoy the day immensely. 

Relaxation 

It can be tempting to try to do as much as possible when you go for a day out, to make the most of the time you have together. Yet this isn’t always a good idea, especially for someone with dementia who can be easily overwhelmed by too much stimulation. 

It might be better to enjoy a nice, relaxing day together instead. It could start with a trip to the hairdressers or barbers, and then you could have a spot of afternoon tea together (this links in with the memory trips as mentioned above). Afterwards, you could go to a library or go to a spa for a swim and some treatments. 

Fresh Air 

Outdoor pursuits are always a good idea. People with dementia can often feel cooped up and anxious when they are indoors, and as well as that, fresh air is good for you. So it makes sense to get outside and enjoy what nature has to offer. Not only is it a healthy option, but it is relaxing too. 

The local park is always a good place to take someone for a day out, no matter what their age or what their condition might be. Arrange a picnic with their favourite foods and feed the ducks if there are any there. Take a stroll, notice the clouds and the trees, enjoy every moment. It is these simple pleasures that really make a difference. 

A Sing-along 

Although a lot of the memory of a person living with dementia will be affected, there is something about song lyrics that seems to linger, and it is for this reason that a good old sing-along might be exactly what the patient needs to enjoy their day and feel better. You can do this in your own home if you like, simply downloading songs from the past to listen to and song along with. Alternatively, you can find a concert venue that is offering this kind of music too. 

The Cinema 

If you take a look at the film listings for your local cinema you might be able to spot some special screenings that are labelled as ‘dementia friendly’. If there aren’t any, you might need to search for a larger venue, but these films do exist. The lighting is brighter, there are no trailers or ads before the film starts, and the environment is relaxed and friendly.