Working the graveyard shift on a memory care unit…there really are no adequate words to describe the experience. In many ways, it’s the most challenging experience I’ve ever had in this field. I have twelve residents on my hall and on any given shift there are four to six that won’t sleep. It’s a crapshoot whether it will be an all night dance party full of fun or a nightmarish landscape over which I have little control. Mostly, it’s some combination of the two.
“I think I’m dead.”
“You’re not dead.”
“I might be.”
“ You’re not.”
“Ok. If you say so.”….I have that exchange at least once a week. This particular resident is very matter of fact about the whole idea that she might be a ghost, as if she finally figured out why her life has become so strange and unrecognizable. Death, however final, at least made some sense to her. The disease that has ravaged her mind and slowly robs her of who she once was makes no sense at all. She is still in there, though. Her caustic wit cuts through her mental fog; a beam that lights brief paths to moments of clarity in which who she is underneath the Alzheimer’s disease shines through. She loves music. All kinds of music and she loves to dance. She hates tuna fish. If she doesn’t trust you, she lets you know it. She doesn’t respond well to formality, preferring warmth to surface level pleasantries and when she laughs, it is full throated and from the soul rather than polite titters hidden modestly behind a handkerchief. This is a woman who does not bother with giggles. She laughs like she means it and I love that about her.
Those are the moments that I hold onto when the bad nights come; when my people wander in the darkest hours of the night, confused and afraid. When she is having a difficult night, she doesn’t sleep.
“I’m frightened!”, she tells me. Eight hours straight of I’m frightened. And when I’m on a round and out of her sight that fright turns to panic until I am finished helping another resident and she can lay eyes on me again. The best I can do to help her through those nights is to continuously remind her of who she is; that she hates tuna fish and loves music and loves to dance. That helps some, for a little while…but I have eleven other residents who also need me and when three or four of them are having a difficult night at the same time I feel like I’m drowning in my own powerlessness. I can’t cure dementia. I can’t bring back dead mothers or lost dogs from their childhood. In the light of day, with the activity and structure of the daily routines, redirecting is much easier. At three in the morning, it is much more difficult to escape the ghosts of the mind. That’s true for me, so I can’t imagine how hard it is for them.
When I first started on this hall, those shifts were so emotionally exhausting that by the time I punched out, I was feeling something very close to despair. I do not do despair very well. I haven’t for a very long time. Despair leads to giving up and that is quite simply not an option. Besides, those were only the shifts when it seemed that everyone was having a bad night at once and as painful as they were for me, it was exponentially worse for those in my care who were actually living through it.
So much of this field is trial and error. I decided to go back to my basics; ideas and tools I learned years ago when I worked in memory care on first shift. The hours are different and as are the mental state of those in my care but certain truths transcend from day to night. Consistency is always vital in memory care. If I say I’m going to do something, I follow through. I learned my residents, their patterns and preferences and the best night time bathroom times for each one individually and developed my routine. I keep it consistent but flexible. I work around them. If a lot of my folks are restless, I have a midnight snack party and play calming music. My night owls like Law and Order. It’s funny…the can’t follow the show but they seem to remember enjoying it and that’s enough. All of this has helped a great deal.
Of course there are still really tough shifts when events seem to snowball, but they are less frequent and I am better able to deal with them. One of my favorite aspects of my work is that in order to be most effective, I have to learn continuously. Anyone who says differently isn’t doing it right. I have been blessed with the support of those who love me most, both in and out of the field. It is impossible to give up when surrounded by people who believe in you. I walk in the footsteps of those caregivers who trudged the path before me and passed on what they know. At the end of the day, good or bad shift, daylight or in the still of the night, I love what we do. I love writing about what we do. I love that I see the value in what we do and I love those in our care for whom we do it.
Where is my mother? Father? Brother? Husband? When these questions come from my residents at three in the morning, I have to do an on the spot assessment. If not handled correctly, these conversations can quickly spiral into an emotional meltdown that unnecessarily traumatize those living with memory disorders.
Too many people, from the doctors to new caregivers, make the rookie mistake of attempting to pull those living with dementia into their level of awareness rather than meeting them where they are. Instead of trying to convince those living with Alzheimer’s or dementia of our reality, it is better to actively listen through the words they say to assess the resident’s needs.
When I hear “where’s my mother,” I think about what my resident’s mother might have provided her that she may be missing in that particular moment and attempt to fill that need as best I can. It is not 100% effective but it has worked better than any other method I’ve utilized so far in this field. Where’s my mother at three in the morning could mean any number of things. Did she have a nightmare and need reassurance? Did she wake up hungry? Does she need to use the bathroom? Is she in discomfort? All of these basic needs were once taken care of by her mother and in recognizing that, I am usually able to put her at ease and through the process of elimination, discover and solve the problem my resident could not articulate.
Have you ever been anxious or frustrated or simply in a funk for no specific reason? Maybe you didn’t even realize you were feeling down until someone said or did something that pulled you from it? It’s happened to me plenty of times and it’s a strange feeling when my emotions don’t match with my reality. Imagine walking through that with severe cognitive impairment, when your reality is just as fluid as your emotions. It would terrify me if someone attempted to convince me that what I know in my mind to be true isn’t real. I would be too scared and frustrated to comply with even the simplest of suggestions. Part of caregiving is learning how to translate. There is a language and understanding that can only be developed by active listening, keen observation skills and empathy. It up to us to first understand that language and then translate it for those who don’t know those in our care as well as we do. It is how we make certain our residents do not get lost in translation.
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.
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.”
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!)