Category Archives: Dementia care

Selling lemons and changing briefs

Sunflower May

 

This is crazy.

It’s one of those times when nothing I do works. This woman is not going to let me change her brief.
I’ve already left the room and come back three times: the re-approach technique isn’t working. She may not remember who she is or where she is, but when it comes to how many times I’ve been in her room…good Lord, but this woman has a fantastic memory!
I place her hand on the opposite bed-rail and try to roll her over again.
“No! No! No!” she screams, letting go of the bed-rail and pushing against me with all of her frail but frightened might. “Oh, stop, please stop! Mother!”
And now she’s crying again.
My feet hurt. My head hurts. It’s been a long day: this shift just will not end and this woman just will not be changed.
“Please, Mrs. E,” I beg her again, “just roll to the right–just a little bit! One roll. One roll, that’s all I need! I can get this brief out from underneath of you and put the new one in just one roll. And, um, maybe the sheets too. Possibly. Please?”
Mrs. E just buries her face in her hands and cries harder. There’s a certain smell when a brief has been left on too long, when it is soaked beyond capacity to absorb anymore: I catch that scent now, wafting up at me every time she moves. There’s a brown ring on the pad too, further evidence of her refusal to let anybody change her all shift.
I’ve stood here for fifteen minutes, alternately pleading, begging, reasoning, ordering and bribing: nothing is working. She’s not my resident. I could just walk away, tell my newbie coworker that “Yep, she’s refusing care all right, can’t do anything with her”.
Or I could go get help and we could change her in spite of her refusals. This is one of the blurry lines between right to refuse and being mentally incompetent.
I groan and lean against the bed rail. I’m too tired for ethical quandaries right now. I’ve been working for fifteen hours now and I’m dead tired. I swear I can feel my patience wearing thin, like the belt in a car about to snap and bring the whole engine to a crashing halt. In this case, my ability to be a caregiver is what’s in danger…I want to scream, cry, run away and make this woman let me take care of her.
Instead of doing any of those wonderfully tempting things, I move the bed-rail closest to me and, taking care to land on the clean sheets, collapse beside her on the bed.
It feels good to sit down, to not be on my feet. I feel like all my bones have turned to liquid within me and all my muscles have turned to jello.
Mrs. E jumps slightly and hiccups, my sudden movement startling her out of her tears. I stare back at her, blinking away my own tears. The silence holds for a long, long moment.
“You see this thing,” she says suddenly, catching ahold of the call-light and swing it around in a lazy little arc that brings it close to my face. “I told my father, I said, I don’t know what you want me to do with this…thing. It’s just stupid, is all and I said, well, I said I’m not doing it. And he said, well, what am I supposed to do with it? What am I supposed to do with thing, huh? What’s it for?” She holds it out for me.
On a sudden inspiration, I lean forward. “Hello?” I say into it, pitching my voice as though it were being filtered through a microphone.
For the space of three heartbeats, Mrs. E just stares at me. Then she throws her back and laughs, great big chuckles that shake the whole bed. “You’re a nut!” she gasps out, shaking her head.
“That’s me,” I agree, “the biggest nut you’ve ever seen. A cracked nut, too.”
“A cracked nut,” she repeats. “You’re silly.” But she’s smiling now and not crying.
“I am so silly that I want to get this pad out from underneath you,” I continue. “Do you think you could roll for me so I can get it out?”
“No,” she says firmly. “I’m not doing that.”
Damn.
“Why?”
“Because I’m not. My father said, now he said, we’ve got to sell these lemons and I said, now who wants to buy lemons? That’s just stupid. But he, he wanted to sell them and I thought, he’s nuts. He’s crazy.”
“He sounds crazy,” I say, wondering how the hell we got to selling lemons. “Hey, how many lemons do we have to sell?”
“Lots and lots.”
“Tell you what, I think I can sell your lemons for you–there’s a baker who wants to trade me lemons for cookies…she’s, um, making lemon meringue pie or something. But I need your help with something, ok? My wallet fell under your sheets and I need to get it out or my father is going to be very upset with me.”
“We can’t have that,” Mrs. E says, shaking her head in solidarity with me over unreasonable fathers who expect us to sell lemons and not lose wallets in other people’s sheets. Then, without warning, she grips the bed-rail tightly in her left hand, braces her right hand on my thigh and lifts her bottom off the bed.
There are times to provide meticulous peri-care and times to hurry it the hell up. This most certainly falls into the latter category. Her bottom is hardly in the air for twenty seconds, but I somehow manage to whisk out the old brief and pad and replace them with a clean set. It’s hardly the best brief placement I’ve ever done, but at least it’s not saturated with six hours of urine.
“Did you say cookies?” Mrs. E asks as her bottom thumps back on the bed.
“Sure did,” I smile at her, “but first, can you give me a hug?”
“Oh, honey,” she laughs, but she rolls towards me and crushes me against her. “You’re so silly,” she tells me.
“Guilty as charged,” I gasp, using my free hand to wiggle the brief into a better position.

It’s serious work we do, as CNAs, but sometimes serious just doesn’t get the job done.
We cannot always bring our confused residents back into what we call the “real world” so must be willing to lay aside our pride and look silly for a good cause. I have often found that a person’s sense of humor is the very last thing to go.

Who’s the One with Dementia?

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Minstrel

For those who might not have seen the ‘goddess’ of dementia care (imho) Teepa Snow in action yet:  Teepa has a wonderful skit she performs in her training programs.  At these programs the audience members are generally caregivers.  Teepa will play the role of the caregiver while an audience member takes the role of the person with dementia.  (Every caregiver becomes an expert in this role!)

Caregiver, smiling:  “OK, Jeannie, time for bed.  Let’s go to your room.”

Person with Dementia: “No.”

Caregiver: “C’mon, time for bed.”

PwD: “No.”

Caregiver, now frowning:  “Now Jeannie, it’s time for bed.  You know you’re tired.”

PwD: “No, I’m not.”

Caregiver, in a louder voice: “Jeannie, it’s time for bed.  Come with me.  You need to go to bed.”

PwD:  “No!  I’m not going.”

Caregiver, louder still:  “Yes, you are!  It’s bedtime and I have to get you ready for bed!!”

PwD, now pushing and screaming:  “There’s a stranger after me!  He wants to rip my clothes off!  Stop it!  Somebody HELP me!!  I want my Mother, where’s my Mother!!  I want to go home!!”

Caregiver, louder than ever and totally exasperated: “You come with me right this minute!  You are COMING WITH ME NOW!!

As Teepa asks at the end of her role-play: Which person seems to be the one with the cognitive problem?  The one who seems to know what she wants (not to be put to bed yet), or the one who is hell-bent on getting the dementia-impaired resident to change her mind.  The resident probably can’t change her mind at this point, especially not in response to a caregiver who repeatedly sends, in an ever louder and more frustrated voice, the same message: DESPITE YOUR WISHES, I’M GOING TO PUT YOU TO BED NOW.  If anything, the caregiver’s rising frustration triggers the resident’s fight-or-flight instincts.

For CNAs, this is the question of the hour: What do I do when a resident won’t cooperate?  Do I become more and more insistent, and in the process arouse further defiance in the resident?  Maybe I worry “I need to rush.  If I don’t get everyone ready for bed by the end of the shift, the unit manager will be furious with me.”  (PS: Remind her of that person-centered care she’s trying to sell to families—and which the brand new CMS regulations confirm.)  Do I gripe to my co-workers?  Or do I try something new.  We CNAs develop great ‘tricks of the trade.’  My secret weapon is music.  Others try chocolate.   Sometimes a short walk will help.  Or we might initiate discussion of a favorite family photo.  Trial-and-error is the name of the game.  Creative redirection.  The point, as Teepa Snow and Naomi Feil teach us, is to connect with the person.  To empathize with the underlying emotion being expressed and validate that emotion.  To engage the person in an experience they might enjoy before moving back to the ADL.

All this takes time.  But taking time to engage a resident isn’t a frill.  It’s an essential part — the best part, of being a CNA.

The Things They Never Tell You

Sunflower  May

Here’s something that’s not quite––or not at all––a newsflash: human beings are sexual creatures.
Here’s something that’s (an often quite hilarious) newsflash: old people are still sexual creatures.
They still notice and remark on certain aspects of life that maybe we young folk would prefer they do not. Occasionally, we young folk are the ones they are noticing and remarking about.

At times this attention is sweet, like the nine marriage proposals I’ve received in the course of my career–only three of which were delivered in a location other than the shower room.
Or the time I went to wake up a resident and was subjected to a long, loud verbal tirade about how I was thoroughly unpleasant person and he was his own boss. This tirade derailed the instant he opened his eyes…prompting him to interrupt himself with “My God, you’re beautiful!” From that moment on, he treated every word out of my mouth like Gospel truth, to be obeyed immediately. I admit it: I quite enjoyed being treated like the Queen of the Universe. Being told that I was beautiful enough to derail a full-fledged, would-make-a-toddler-jealous temper tantrum didn’t hurt my confidence any either.
Then there was the time that I noticed a resident’s pant leg needed adjusting. When I bent over in front of her to fix it, I ended up getting a reminder that not everybody born before the 1960’s necessarily conforms to the Norman Rockwell image of heterosexuality. I will say that of all the passes ever made at me, hers was tasteful–far more in the nature of a compliment on my, er, physique than objectifying my body for her viewing pleasure. That woman had game.

∞oOo∞

And then, of course, there’s the far less enjoyable kind of attention. This comes in many forms, from overhearing a group of male residents ranking the female employees by sexiness, to outright asking me to climb into bed with them. You’ve got the “handsy” old men, the incessant dirty jokes, the lewd comments, the creepy stares…and the list goes on. I’m sure every aide out there has had an experience of some kind or another of this nature.
There was a time when I cleaning up an extra large BM that was, in spite of my best efforts, just getting anywhere. I became distracted from the mess when I felt the resident’s hand on my leg, slowly creeping further up. When I told him to remove his hand, he just looked at me, smiled and said: “What, don’t you like it?”
“Are you going to take your hands off me?” I asked him calmly. “Or do I have to use my hands to get yours  off me?” To illustrate my point, I held up my gloved hand…which just happened to be dripping BM. To anyone who says that there’s nothing like cold water to curb a libido, I can only guess that you’ve tried using BM. I’ve never seen anyone back off quite so fast as he did, or stay backed off for quite as long. I hardly needed to report the incident to my supervisor, whose first comment was that I “had managed the situation rather handily“.

Of course, it’s not just the residents who put on such displays of sexism and lechery. I learned very quickly to wary of certain visitors. I’ve had a visitor try to get me in trouble with my boss because I told him to keep his hands to himself. He was always trying to touch the female aides, especially trying to put his hand on a shoulder or upper arm and “steer” us around by squeezing. I objected to being touched so frequently and familiarly without my consent, especially after I politely asked him to stop. Unfortunately for me, he was one of those men who have trouble to concept of “No Means No” and began complaining to my supervisors that I was “rude”, “mean” and “hateful”.
Unfortunately for him, I’m fairly eloquent with written words and not afraid to defend myself.

Nor should you come to the conclusion that it’s only the men who make unwanted sexual advances upon staff. While I have noticed that some of the female residents do as well, they are far fewer…in no small part, I think, to the cultural conditioning that encouraged men to be aggressive and women to be passive. Also, there’s the same mentality at work that leads some of our residents to treat their caregivers as “the help”, instead of a skilled worker. When you’re perceived as standing a rung below them on the social ladder, many people feel as though they’ve been given a pass to act as they want to, without regard to your feelings.
But it exists still, with or without the spotlight. All the crap women have deal with in our still amazingly sexist culture, with a side of proximity. There is, shall we say, an intimacy of the caregiver-resident relationship that often exasperates the “normal” harassment. Personal space boundaries are in a constant state of flux in Long-Term Care. You’re often operating in what Edward T. Hall, the cultural anthropologist who pioneered the field of proxemics, called “intimate distance” (6-18 inches between you and the other person). This close proximity influences the dynamics between you and the resident, especially if that resident has dementia. They either react with hostility, “What is this stranger doing in my personal space?” or an assumption of familiarity, “She’s right next to me, so we must be close.” Or “She’s leaning over me, so she must be open to my attentions”. Inhibitions are lowered or forgotten, causing many people with dementia to act without the social filter. Is it any wonder then, when they make a move and react with confusion when they are shut down?
Of course, empathy in this situation is a tricky thing. No matter how well you’ve managed to put yourself in the resident’s shoes, how much you understand the factors that lead them to act as they do––you cannot deny the validity of your emotions. Sexual harassment is a demeaning experience, even if the perpetrator is your resident. We can’t just shrug it off and say, “Oh, well, it’s not worth the fuss,”. If we aren’t taught–or don’t learn–how to shut down such advances with compassion and firmness, we only encourage more of the same behavior, making life harder for ourselves and all our residents.

Either way, it’s one of the things they never tell you about. It’s one of the areas that we are, for the most part, told to report to our supervisors and then left to figure out on our own. How do you deal with the handsy residents, the lewd comments and other objectifying behaviors without demeaning the resident who is exhibiting the behavior? It’s one of those ethical obstacle-courses we deal with every day.

There’s Nothing Like a Good Dog

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Yang

As I begin the HS care routine, my thoughts wander to home, to Jenny and the girls. I always get a little tug of homesickness around this time in the shift. The girls are picking out their bedtime stories right now, each gets to choose one book and they pick one together.  They’ll gather around the bed of our youngest – along with our little Australian Shepard, Kip – and Jenny will read to them. Then, she’ll tuck them in, kiss them good night, and they’ll drift away with Wynken, Blynken and Nod. Not being there is the hardest part of being here.

Tonight, it’s worse than usual because I’ve been pulled to a unit that I’m not familiar with and I’m the outsider. I don’t know the staff well and I know nothing about the residents in my group, save for the information on my “cheat sheet” and what the other caregivers have time to tell me. For the rest I have to depend on what I can glean from the residents themselves.

Ziggy can’t help me much in that regard. He has a pleasant demeanor and he follows simple cues, but he doesn’t respond to all of my questions and when he does respond it’s with a nod or one word answer.  And he seems reluctant to maintain eye contact.

In the dietary column, the cheat sheet states that Ziggy is a “feeder,” an uncomfortably crude way of saying that he can’t eat without total assistance. But the information is accurate, as I discovered at supper time. He loves to eat – that isn’t on the cheat sheet – I couldn’t get his dinner on the spoon fast enough for him. He polished off his tray in ten minutes and accepted a second dessert when one of the regular caregivers offered. For caregivers, there is something satisfying about a resident who likes to eat. And I could tell from the regular caregivers’ interaction with him that he is just about everybody’s favorite. That isn’t on the cheat sheet either.

There is a lot about Ziggy that isn’t on the cheat sheet. You can’t tell a story in box.

He nods as I explain that I’m going to help him on to his bed, but he says nothing. Under the “transfer” column of the cheat sheet, he is listed as 1HH, meaning one human help. He is as tall as I am and not thin, but if the sheet is up to date, he should be able to bear weight and I should be able to get him into his bed without having to ask the other caregivers for help.

I position his Geri chair parallel to his bed, about midway between the head and foot. This leaves room for me to help him stand and pivot 90 degrees, then ease him into a sitting position on the edge of the bed. The next step is to use the edge of the bed as a fulcrum and help him swing his legs into the bed, effectively creating another 90 degree pivot. If all goes to plan, his head will end up straight on the pillow.

I pause after getting him on the bed. I always like to take a moment when a resident is sitting on the edge of bed, whether it’s in the process of getting out or going in.  Just to let him get his bearings after the change of position. Sometimes I’ll sit on the bed with him – for just a moment or two – steadying him if necessary.  

As I’m sitting next to Ziggy, my attention is drawn to two photos tacked to his personal poster board hanging on the wall over his night stand. Other than the Activity Department’s weekly newsletter, the photos are the only items on the board.  In most of the residents’ rooms these poster boards are covered with various personal items such as photos, greeting cards, notes, and assorted decorations. For our residents, these items sometimes serve as tangible, but slender connections to the lives they had before they came here. For us, they provide tiny shreds of evidence of who they are as people.

One of the pictures is an 8×10 of a gorgeous pure bred German Shepard standing in someone’s front yard. A smaller photo shows a much younger Ziggy kneeling next to the Shepard with his him arm draped across the dog’s back. Both photos are faded, dog-eared, and peppered with a dozen thumb-tack holes along the top edges.

From my spot on the bed, the larger photo is within arm’s reach. I lean over, remove it from the board, and hold it up in front of Ziggy.

“He’s beautiful, Ziggy.”

Ziggy reaches for the photo and I hand it to him. He studies it and nods. “Chummy is a good dog.”

Okay, present tense then. I’ll follow his lead and we’ll stay there. “Yes, he looks like a great dog.”

He nods again. “Chummy is a good, good dog.”

“Are you best buddies?”

“Yeah. He’s my dog.”

He still hasn’t taken his eyes off the photo.

 “Do you play with him?”

“Yes… he plays.”

 “There’s nothing like a good dog. I have one too.”

He looks at me, eyebrows slightly raised.

“Here, I’ll show you a picture of her.” I lean back and retrieve my wallet from my front pants pocket. I slip a small photo of Kip from its protective plastic sleeve. The picture shows Kip with all four legs off the ground, snatching a tennis ball in mid-air.

Ziggy is impressed. “He’s a good dog!”

“Yes, she is,” I agree, but I stand firm on the gender. “She loves to play fetch. We play until I get too tired to throw the ball. I always get tired way before she does.”

Ziggy chuckles, he’s familiar with that story.  I hand the photo to Ziggy. He’s still holding the picture of Chummy in his other hand and looks from one photo to the other, apparently comparing the two dogs.

“Ziggy, do you suppose Chummy is more expensive to feed than Kip?”

He grins, “Oh yes, Chummy eats a lot.”

“Kip loves to hunt.  One time she ran away and came home with the leg of a deer. And rabbits don’t dare to come in our yard anymore. Does Chummy hunt too?”

“Oh, no, no. Chummy doesn’t hunt.” He hands me Kip’s picture and returns his gaze to his Shepard. “Chummy is a good dog.”

“Do want to hear a secret about Kip, Ziggy?”

He looks back at me. “Yes… what is it?”

“My wife let’s her sleep in our bed.”

Ziggy shakes his head. “Chummy sleeps in his own bed.”

“I know, we’re not supposed to let her on our bed. But we do anyway.” I put my hand on his shoulder and say, “At least there is one thing that we both know…”

He looks at me again, “What?”

“… There’s nothing like a good dog.”

He smiles and nods. “Yes, Chummy is a good, good dog.”

I proceed with his HS care and wonder if Ziggy will dream about Chummy tonight. I hope so.

I also wonder what other connections we could make if I had more time and knew more about who Ziggy is.

Cueing for Caring

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Minstrel

I volunteer in a long-term care home which serves, among others, those with dementia.  The aides in this home have had dementia training and the care level is already exceptional.  I think this is because management expects the aides to…well, to care — not just to ‘provide care,’ and because management models this value.  Still, the nursing supervisor wanted a performance boost.  Training.  

Aides benefit from understanding dementia and from exposure to the best ideas on dementia care.  But what’s most important about staff education is that their new knowledge lead to new workplace habits.  Training that doesn’t result in improved care is about ‘CYA’ compliance for CMS, not about caring.  How do we ensure that training actually improves how we do our jobs?  How do we transfer the training lessons from the training site to the workplace?  As a reinforcement tool, cueing is used very effectively in memory support homes which adopt Montessori methods.  Are there some short-and-sweet (and fun) cueing tools we might use to reinforce training? 

If there were just a few practices that would transform care, I believe it’s those illustrated in the poster below.  These are tried-and-true best-care practices from experts like Teepa Snow and Naomi Feil.  Let’s try turning these ideas into cues to use where we work: nurses’ stations, employee lounges, food prep areas, in the laundry, at the time clock.  Hanging icons separately in the halls—for example, the little cheerleader—may remind us all to encourage and praise residents’ efforts.  We’d be surrounded by encouraging reminders.  Cues keep us mindful of the kind of environment that is most beneficial for all residents, especially those with dementia.  

Along with cueing, another way to reinforce training lessons is the use of rewards of some kind.   The next step is to develop a rewards program for aides who go the extra mile to use these ‘care commandments.’  This is trickier but surely warranted for aides working to create an environment that says, “We Love Our Residents.”

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The Magic of Music in the Chaos of Long Term Care

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Minstrel

Being a new CNA is challenging.  Yes, in training I learned how to make a hospital bed with a mannequin in it.  To wash my hands according to procedure.  To transfer fellow trainees with a gait belt.   But now I’m in the unit, needing to transfer a dear little wheelchair-bound lady who can no longer speak and who, while petite, is a dead weight when I try to lift her.  And she is contracted.  Her arms remain tight at her side as I try to undress her.  Who is more distressed, ‘Goldie’ or me?  

Goldie, in her mid-90’s, is still a beautiful-looking woman with twinkly eyes and a smile that glows.  So as I work with her I sing “Glow little glow-worm glow and glimmer” to her.  (Are the Mills Brothers spinning in their graves?)  I’m not sure Goldie gets the words at this point, but I’m laughing as I sing and she laughs back.  She relaxes.  I open my arms wide to invite a hug and Goldie opens hers!  Now I can get her blouse off.   Mission Accomplished!  I don’t know what made me sing to Goldie that first time, except that she was such a sparkly person that being with her made me happy.   My singing is not a pretty sight.  But as one musician said to me, “They don’t care what you sound like if you love them.”    

Soon I was singing to all my residents as I did ADLs (Activities of Daily Living: bathing, dressing, toileting, eating).  Sometimes a resident would sing along.  Yes, this did mean that it took me longer than it took other aides.  One of my caregiver-mentors would say to me, “We don’t have time to talk to the residents.  We don’t have time to sing to them.”  But I persisted (quietly) and began to carry my IPOD nano and a small wireless speaker with me.  Now we had hundreds of songs, sung by the voices these residents might recognize: Frank Sinatra, Rosemary Clooney, The Mills Brothers, Judy Garland, etc. etc.  One morning as I brought residents to the dining room for breakfast I played Oh What a Beautiful Morning.  Soon the room was singing!  And smiling.  In time other aides began asking, “Do you have your music with you today?”   For one thing, I think they liked some of this old music.  And they saw that residents often became calmer and more cooperative when they felt ‘sunny.’  Music does that, connecting us to each other and to our memories.  

As my IPOD played the Marine Hymn or Anchors Aweigh, veterans walked to the dining room with new determination.  Accompanied by a waltz, a resident with unsteady legs could be coaxed to move more confidently.  Sometimes we can engage a resident with a song we know she enjoys, singing together as we walk to the toilet.  Because we’re in the midst of something pleasant, a resident might hardly notice that an ADL she usually resists is about to happen.

Some residents can no longer speak; they might no longer understand language.  The saddest reality is that some can no longer hear.  (Even then, rhythms might be felt.)  Not every musical event works every time with every resident.  Nevertheless, with many residents, music can be magical in its effect.   Music has a profound positive effect so often, that it seems crazy not to try it.  

When I am old and grey and full of sleep… (thank you Mr. Yeats), they can take my food, they can have even my books.  But I want my music.   

In the Souls of the Speechless

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Minstrel

Tom Kitwood, the English minister-turned-social-worker who pioneered the person-centered model of dementia care, believed that “…people with dementia, rather than being seen as debilitated, should be embraced for what they can teach the cognitively intact. They invite us “to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct. … in advanced Western societies, where a sense of community is often weak, the evident frailty of people with dementia generates fear; this unease is socially managed by turning the demented into nonpersons, who are warehoused in nursing homes and pathologized… .”  The problem…“is not that of changing people with dementia, or of ‘managing’ their behavior; it is that of moving beyond our own anxieties and defenses, so that true meeting can occur, and life-giving relationships can grow.”   (From Rebecca Mead’s “The Sense of an Ending,” The New Yorker., May 20, 2013.)

In 2007 my 86-year-old uncle had his first disturbing episode of confusion.  Over the next few years he became more confused and forgetful.  Eventually he needed help with what the healthcare community calls ADLs: Activities of Daily Living.  Bathing, dressing, toileting, eating. Socializing. Alleviating boredom.  Everything.  I became his caregiver.  In 2011, when I could no longer lift him after his falls, I moved my uncle to a memory-support home.  Visiting him, I found that I loved interacting with the residents.  One day when the residents gathered in the TV room, I played a Lawrence Welk DVD for the group.  Spontaneously, the residents began to tap their feet and sing.  Residents who no longer spoke, sang along.  People who couldn’t remember their own names remembered the words of the music they’d once sung or danced to.  Dementia professionals knew this, but at the time I didn’t: when other memory function is lost, the memory of music remains and can sometimes revive other memories or feelings.  Magic!  So this would be my next career: I would be a minstrel in memory care homes.  I got an accordion and became a CNA. 

Over the years I’ve had several careers and many jobs.  Each to me was an exciting adventure.  None was as transformative as this one.  For me, working among those with dementia has been, to borrow Kitwood’s word, life-giving.  

My sister would ask, “Why do you like being with those people so much?”  I’d remind my little sister: “When I visit you, you tell me, ‘Donna, you have to do something with your hair.  You need to cut your hair, color your hair, curl your hair.  And you need to get yourself some new clothes.’  When I visit Tom’s place the residents say, ‘You look beautiful today!  What a lovely outfit!  (That would be my jeans and T-shirt.)  I love your hair that way!’ ”   

But it was something else.  For those with dementia, as Kitwood discerned, instinct becomes the operative principle.   Not rationality.  Not the politeness or other filters we rely on to keep us socially acceptable and safe.  Not previously learned defense responses; these are forgotten.  Those residents were without duplicity.  They responded to kindness freely, without suspicion, without wiles.  Around them I felt freer to be myself in ways I usually didn’t.  There wasn’t the need for all that learned guardedness and reserve.  Those with dementia seem to return to a time, a place within, of more transparency.  As the great dementia-care gurus Naomi Feil and Teepa Snow tell us, those with dementia can no longer enter our world; we must enter theirs.  As we do, like them we may come closer to our own less constructed, less artificial selves.   

The experience of dementia is heartbreaking and not to be romanticized.  But I see dementia as more than a tragic incurable disease.  For me exposure to dementia has been a healing gift.  I wonder whether it’s also a final healing for those whose vulnerabilities it exposes.  Dementia takes so much.  It divests one of a lifetime of accumulated knowledge.  The ego’s accomplishments fade.  The trappings of cognition loosen.  Even identity changes.  What remains?  We have little idea of what is happening in the souls of the speechless.  But their losses parallel what Buddhist, Christian, Jewish and Islamic mystics seek.  Detachment from vanities, from ambitions, from past and from future. We need only to be present to the moment. Soon this is all the person with dementia will have left. Should we see dementia’s passage as one of loss, or one of grace? 

Validation for the Cognitively Intact

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Minstrel

I work on the dementia-care side of things.  One day an aide I was working with tried repeatedly to debate one of our dementia-unit residents about why she should just go and sit down and finish her lunch.  The resident left the table, the aide went after her.  The resident got up from the table again, again the aide brought her back, all the while scolding her.  This happened a number of times in the space of a few minutes.  I finally said to the aide, “Mary doesn’t want to sit at the table.  And we aren’t supposed to insist on keeping her there if she wants to leave.”  The resident was unhappy; her aide was unhappy.  Now I was unhappy with that aide.  And that aide was unhappy with me.  

I thought to myself, “I wouldn’t snap at a resident that way; why would I snap at the aide?”  I recalled something from my dementia training program.  One day the trainer asked, “Has anyone been able to use anything we’re learning, in your workplace?”  I thought of something that had happened that week on the train.  In front of me there was a little boy, three or four years old.  He was delighting in everything: in all he saw out his window, and in those of us sitting nearby.  Then his mother focused on this adorable, giggly little boy.  “Georgie, get over here.  Georgie, be quiet!  Georgie, sit still!”  In reality, little Georgie was actually pretty quiet and well behaved.  The only thing he was doing was enjoying his train ride!  But Mom kept on and on at Georgie for every little innocent move he made.  

Brimming with new knowledge, I was tempted to say, “Ma’am, scolding Georgie won’t work.  Repeating the scoldings won’t work.  Scolding him in a louder voice won’t work.  Georgie needs to be validated!”  [A common practice in dementia care.]  “Smile at Georgie.  Engage him; ask him what’s making him feel so happy.  Maybe give him a hug and tell him how glad you are that he’s so happy!  And soon Georgie may very well be focused on you instead of stretching backward to see all of us.”   

This was a Eureka moment for me: dementia-care training offers great lessons for relating to a child, to everyone, not just those with dementia.  This might sound condescending.  But dementia-care training is about how to transform resistance, stubbornness, and defensiveness in those who feel demeaned or threatened by us or confused by our demands — into cooperation.  We stay calm and positive.  We validate how the other is feeling.  We try to understand what the person is really trying to tell us when he rejects our attempts to get him to obey our wishes.  Instead of perpetuating the conflict, we try to discover—or create!—common interests.  Those who work among persons with dementia—and in any LTC setting that is most of us—become creative communicators.   Validating communication helps with dementia residents, and it might help us communicate more effectively with our families, our friends, our co-workers, even our supervisors.  (Now that would be sweet irony!)