Tag Archives: dementia

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.

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.

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? 

The Roles We Play

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Alice

       I started to write this post about more comprehensive training and higher standards for certification in this field. I stopped. Then I started writing about the need to constantly evolve and adapt as a caregiver. I stopped again. Both are topics I want to explore and on which I have many thoughts, but not this week. This week, I want to talk about the roles we play.     

         What defines us? I’m a caregiver. I’m also a writer, a starving artist, a scatterbrained and mildly neurotic advocate. I’m a sister and a daughter, a niece and a friend.

          I’m a caregiver but I’m also a granddaughter, two roles that do not go together as well as you might think. She has been a source of unconditional love for my entire life. How many people are blessed with that? No matter how lost, hurt, angry or sick I was, she was there with me.  She knows me better than anyone else in the world. She told me that I was beautiful; that life was beautiful during a period of my life when all I saw seemed so ugly. It wasn’t all sunshine and rainbows when we were living together. I know that. It was a very co-dependent relationship and there was no shortage of enabling. Still, I have never doubted for one second that she loves me and wants the best out of life for me. She has been in my corner from day one. She holds all of my fears and I carry all of her stories.

       I miss my grams. It’s hard to explain…it’s sort of like mourning a person while she’s still alive. I used to think that the families that would visit regularly in the facility were cold and removed. Working in private care and experiencing the impact of my own grandmother’s aging process has changed my point of view. It’s impossible to detach from a lifetime of memories and it’s close to impossible to step out of the role you’ve been in your entire life, be it daughter, granddaughter, son, or brother. It’s like simultaneously grieving the loss of the person you’ve known all your life and getting to know the person she’s become.

       Agitation, depression, slight paranoia, loss of appetite. Stubbornness. Desire to isolate.  The patterns are the same. Everybody loves her. Everybody wants her to live with them and the patterns are exactly the same as those who were in my care at the facility. No one said growing old is for the faint of heart.

     The caregiver in me wants to fix it. She’s physically in good shape and a daily consistent routine that includes activities with others would do wonders for her spirits. Or a trip to NJ to see her great grand kids. Or here to NC. I call her twice a week, fully intending to convince her of this and twice a week I fail. I crumble. I can’t change her mind, I can’t redirect well or set boundaries or negotiate effectively. The skills that have been so helpful in caring for my clients and residents are about as useful in this situation as calculus.

       Finally, I give up and listen as she curses the day she ever moved to be close to us when we were kids and I try not to take it personally. I listen as she lists her friends who have died. Sometimes I can redirect the conversation to her childhood or stories from when my dad and uncles were kids. I listen. I tell her I love her and just listen.

       She feels better after our conversations, wherever they may lead. I can hear it in her voice. I always feel keenly aware of my powerlessness afterward, but I try to keep my voice upbeat as I promise to call again in a day or two. It’s such a small thing, a phone call, a listening ear, but for now it’s the best that I can do.

A Family Affair

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Alice

“Ma…MA, its right here!” I could hear the amused frustration in my Dad’s voice over the phone. He is staying with my grandma for Easter week and it’s her bowling league day. Eighty-nine years old and she still bowls on a league.

“She spent an hour looking for her checkbook. I gave her a twenty to take with her. She puts it in her wallet. Then she can’t remember which purse she put her wallet in. Finally, I find the purse with the money in it and she forgot that originally she was looking for her checkbook, which is fine because the checkbook is somewhere in the house and now she can bowl in peace.”

The great bowling money escapade. My Grams isn’t suffering from Alzheimer’s. She hasn’t been diagnosed with dementia. She is living with age related memory loss and it is progressing.

For me, losing my keys, checkbook, or wallet is par for the course. I’ve had thirty-nine years of experience of misplacing stuff and disorder. I’m lucky if my clothes aren’t inside out when I leave my apartment. Not her. This is a woman who dropped out of high school after her brothers enlisted in WWII in order to help support her mother and younger sisters. This is a woman who worked two jobs while raising six boys and still managed to make certain that everyone had dinner together. She and Pop moved to SC to help with my brother and I when we were kids. She buried a son and a husband, and carried me through my own troubled times, and still managed to stand on her own two feet. She is a powerhouse. She is also eighty nine and her age is catching up with her.

I can hear it in her voice when I call her; the anger and frustration and sadness and fear that comes from knowing that her mind isn’t as fast as it once was. For a woman who remembered every anniversary, birthday, whose checkbook was always balanced to the penny, who was always the caregiver, these mental slips are a scary, heartbreaking reality. Time is the great thief that none of us can outrun. The best we can do is carry each other through it.

My grams is one of the lucky ones. Everyone in her life loves her. We all want her. Any one of us would gladly take her in our home. The problem isn’t a lack of options. It’s a lack of options that she is willing to take. And I GET it. She doesn’t want to “be a burden”. She doesn’t want to leave her home. Every time I call her and try to discuss it with her, she shuts me down. She isn’t ready. She is the ultimate caregiver, which makes it almost impossible for her to accept the idea that she is the one who needs care.

So we are at an impasse and for now that’s ok. She’s ok. She can’t crochet like she used to, but bowling on a league at eighty-nine is pretty damn good. The time will come when that will change, and as a family, we will cross that bridge when we get to it. It’s so different when it’s a loved one with whom you have a lifetime of memories; a difference that I will be exploring further in my next post.

Meet Them Where They Are

Alice

Alice

 

Alice

Unreasonable, misplaced anger, unrelenting fear, heartbreak from deeply felt emotional wounds, a lack of trust both of others and of their own capabilities, powerlessness, despair, frustration, feelings of abandonment, and utter lack of control over their own surroundings are only some of the negative emotions that those living in Long Term Care facilities face on a daily basis.  My residents who struggle the most with the above mentioned feelings are usually the ones who are the least capable of clearly articulating it.
So what happens? They act out. They become verbally and on occasion, physically abusive. They often yell or become obstinate over seemingly innocent little tasks. They manipulate situations in a way that they feel best benefits their needs. They are the residents labeled “difficult”, “trouble makers”, “problems”, not just by those of us on the floor but also by those in the office.
God knows, I’m guilty of it; inwardly sighing, as I make my way to a resident who is furious at me for something over which I have no control. Or a resident who is vengeful because I’ve had to set a boundary that she doesn’t like. Some days, I wonder if all of my uphill battle folks had a meeting and decided that they would join forces in order to make a shift impossible just for their own entertainment. Those are the days that I leave work questioning both my sanity and my capabilities; the days when I think I suck at this gig and wonder why I am so determined to stick with it.
The thing is, though, when I step away for a minute, I realize that I have a level of awareness that is desperately needed in this field. I really do know that these “difficult” residents are not behaving in such a manner simply because they’re “mean”. The powers that be may know that, but in all honesty they don’t care. They can’t possibly care because their only solution appears to be medication, a problem that I will be discussing in a future post. A facilities treatment of their caregivers directly corresponds to their level of interest in their residents’ quality of care. They are not invested in us, then they are not invested in them.
SOMEONE has to be, though. Someone HAS to see beyond the behavior, which is nothing more than a symptom to the greater underlying illness. That responsibility lies on the floor. We are the witnesses and the carriers of their emotional wounds. While we are unlikely to heal them, we can step outside of ourselves and use their behaviors to learn how to better care for them, much like the pain from touching a hot stove teaches us to not touch it again.

Unreasonable, misplaced anger, unrelenting fear, heartbreak from deeply felt emotional wounds, a lack of trust both of others and of their own capabilities, powerlessness, despair, frustration, feelings of abandonment, and utter lack of control over their own surroundings…that’s a lot for any human being to have to live with. Sometimes adding “fit into my concept of acceptable behavior” on top of all that is just too much to ask of them and they can’t meet US where WE are. That’s when our empathy and understanding needs to stretch in order to better meet THEM where THEY are.

The Value of Vulnerability

 

Alice

Alice

 

Alice

It’s no secret that caregiving requires a certain type of toughness. We often discuss the toll that the physical, mental and emotional stress of this career puts on our bodies. It’s not an easy gig and to consistently do our job well requires strength, fortitude, and willingness to sacrifice. Our patience is often tested on every level by everyone and still, we must carry on. So yes, though it may not be listed in the job requirements, toughness is a skill that is needed to perform our duties.

        On the flip side of that is vulnerability. I have discovered that one of my most useful assets in this field has been a willingness to remain in touch with my own personal vulnerabilities in order to better relate and connect with my residents.

       It’s not a comfortable feeling for me, vulnerability.  Outside of work, I adhere to a never-let-them-see-you-sweat-pick-yourself-up-by-the-boot-straps-and-look-at-the-bright-side philosophy of life. I like to take action! After all, it’s hard to hit a moving target.

      There is a certain level of denial in constantly trying to maintain such a mentality because the truth of it is, we are ALL vulnerable. It comes with the territory of being humans. For me, one of the greatest lessons of this career is that I’ve had to get past that intrinsic need to be a Pollyanna in order to truly reach some of my most challenging residents.

       Lonely, sick, hurting, scared people do not WANT to “look on the bright side”. They do not want to “smile”.  They DEFINITELY don’t want to be told that all things happen for a reason and that people are praying for them. As well-meaning as such sentiments are, they lack the substance to cut through the fog of depression and fear that most feel upon losing their sense of independence and, in a very real way, their freedom through no fault of their own.

        I do not know what it is like to live with cerebral palsy. I do not know what it’s like to have suffered a traumatic brain injury, or cancer, or severe mental illness. I would never tell any of my folks that I know what they are going through, because I do not. That DOESN’T mean that I’ve never felt the emotions that they may be feeling. THAT is where the gift of vulnerability comes in handy.

        When I dig within the deep wells of my own personal experiences, painful though that may be, I find a wealth of emotions, good and bad, that I use to empathize with my residents.  I know all too well what it’s like to feel alone, powerless, scared, hopeless, lost, stigmatized and like an outcast. I know what it’s like to feel anger at situations over which I had no control and I know what it feels like to lose your dignity.  I know this through my OWN life experiences and I know the tools that have helped me to get through it.

        This in no way qualifies me to “fix” my folks. I can’t fix anyone. What I CAN do is relate on a deeper level. I can share my experiences when appropriate and I can be open to being emotionally vulnerable to those who, by necessity, are forced to be vulnerable with me.