She was tiny with a curved back, which made her appear as if she were shrinking. “What a dear little old lady,” I mused. On closer inspection, and as the morning unfolded, I realized that this petite woman was not at all the endearing soul I had imagined; she was a force to be reckoned with. I greeted her with a smile and crouched in front of her so we were at an equal height. “Welcome to Namaste,” I said. The response from her was not exactly what I was expecting—let’s just say if looks could kill, I would not be writing this story. What I thought was just another challenging moment in my career was actually a significant moment in my career. This encounter was my introduction to Evelyn Groves who, at 101, became a teacher for me and the hundreds of people who have heard her story. I met Evelyn on the day we officially opened the Namaste Care Program, and this moment was imprinted in my mind for a very long time. “A great beginning,” I thought. “I rarely have a problem connecting with residents. Why today of all days?”
For most of my career, I have worked with activity professionals by developing programs that could enhance the lives of residents with early- and moderate-stage dementia. The Namaste Care Program came about in 2003 when I became aware that a significant number of residents with advanced dementia were not able to participate in traditional activity programs. They would be left in their rooms after breakfast, placed in front of the nurses’ station where they could be monitored, were asleep in front of a television set, or left on the fringes of an activity program. Residents like Evelyn were taken care of physically—dressed, fed, groomed, and toileted—and all of their activities of daily living and physical needs were met by the usually hurried nursing staff. The facility’s activity staff usually offered room visits each week, but residents with advanced dementia were alone for the majority of each day. Their spiritual needs, and the basic need for giving and receiving love, were not met. As far as I was concerned, this was not a quality of life existence; clearly, they needed a special type of activity programming.
I chose the name Namaste for this program as it is a Hindu word meaning “to honor the spirit within,” a perfect name, I thought, for a program that honors residents with advanced dementia. The program honors each resident as a unique person, from the time they are welcomed into the room until the time they are thanked for coming to Namaste and ready to leave. In my experience, people with dementia seem aware of their environment, so the atmosphere in the Namaste room is calming, with little or no distractions, such as overhead paging. Soft music plays as the residents enter the room; the scent of lavender permeates the air. Namaste Care is an enhanced nursing program that provides activities of daily living (ADLs) as “meaningful activities.” It may be compared to brushing a woman’s hair with gentle strokes like her mother did when she was a child. It offers the male residents a shave the “old fashioned way,” complete with shaving cream and scented aftershave (a scent from the past) that seems to help them remember when shaving took a long time and was enjoyable—unlike the hurried electric shave used by most nursing home staff. The foundation of Namaste Care is “the power of loving touch,” ensuring all ADL care is provided with gentle, soothing strokes. As the program grew, we were reminded that residents with advanced dementia still love to laugh when something funny is shown to them, like the staff wearing a clown wig, and you can see the twinkle in their eyes as they see bubbles being blown for them. They are aware of seasons when daffodils are brought to them in the spring, and a basin of snow encourages them to try to make a snowball in the winter.
As I previously mentioned, this was the opening day of the Namaste Care Program. The room looked beautiful and comfortable. Approximately eight residents were resting in lounge chairs. The room was softly lit, soothing music was playing, and the staff had chosen what I thought were the “perfect” residents for this very important day. As the Alzheimer’s disease consultant, I had trained all staff on the type of resident appropriate for the program. As I looked around the room with a satisfied, probably smug, smile. Most of the residents were sleeping, or if they were awake, they were just looking around; it was all just perfect. A great start to Namaste Care! That, however, changed in an instant.
The Namaste Carer, Chris Donovan, and I were each washing and massaging residents’ hands and arms, speaking soothingly to them. All of a sudden, I sensed that the energy in the room had changed. Peace and quiet were about to disappear. Looking behind me, I saw a nursing aide wheel a gerichair into the room. The occupant of that chair was Evelyn. When anyone enters the Namaste room, they are greeted warmly and, as I described at the beginning of this story, I did just that—or rather I tried to. I asked the aide to introduce me to the new guest and when I bent to greet her, Evelyn Groves looked at me with razor-sharp eyes as if I were an unwanted intruder in her space. And of course, I was.
I quickly stepped back and looked at the aide, who was supposed to know who was “appropriate” for Namaste. She looked at me and shrugged, saying quietly, “Nothing works to help her live peacefully, and we’ve tried everything, so I thought Namaste Care might help.” This chance meeting with Evelyn reminds me how important it is not to give up on residents who are perhaps the most challenging to care because they also have the potential to give staff the greatest rewards.
Evelyn speaking into her clenched fist as if it were a microphone, reliving her days as a police dispatcher.Photo courtesy of Joyce Simard, MSW.
Evelyn had been a resident in this facility for 9 years when I met her. Staff told me that when she was first admitted with a broken hip and some memory loss, she was so much fun to take care of. She laughed easily, loved the staff, and the staff loved her. However, as the years passed and her dementia worsened, she became a very difficult person to care for. Evelyn began to resist all attempts to provide personal care, and bathing her was not for the “faint of heart.”
Evelyn had a team of nurses and nursing aides—unsung heroes and heroines who were smart and caring. Thank goodness this particular aide, even though she knew Evelyn was not the “typical” Namaste resident, decided that this new program was worth a try. So Evelyn Groves arrived in the Namaste Room, looking as if she were going to the dentist and muttering about something that was clearly not pleasing to her. I stepped back and Chris, who knew Evelyn since she had been admitted 9 years ago, stepped forward to greet her and wisely placed her near the door for a quick getaway if that became necessary.
As the consultant, I’m supposed to know how to deal with these situations, but I was clearly not going to be Evelyn’s new best friend that morning. Chris immediately took charge and said that we should just leave her alone; the aide left quickly and I retreated from Evelyn’s scathing looks. I’m happy to say that after more than 30 years of working in long-term care, most residents like me. In fact, I have always said that if I go through one day working with residents and no one spontaneously tells me they love me, I’ll know it is time to retire. Lucky for me, as I have continued to work, I decided to make an exception on that day.
We left Evelyn alone on the first day and although the murmuring did not stop, she seemed to be somewhat aware of the room and occasionally paused talking to look around. She stayed during the morning session and was taken to her room in the afternoon for a nap. At the end of the day, the program was declared a success. Chris and I received accolades when staff saw the amazing response from residents who had been, for the most part, previously unresponsive to attempts to engage them in activities. I thought, “I was fortunate that no one but Chris saw Evelyn’s reaction to my welcome greeting, or the accolades would have not been so profuse!”
On Day 2, once again Evelyn was wheeled into the Namaste room and, brave soul that I am, I hid behind the door so she could not see me. Chris immediately greeted Evelyn with a smile and whisked her off to what was to become “Evelyn’s” place in the room. Chris tucked a brightly colored quilt around Evelyn’s tiny body before she went on to greet other residents coming into the room. As the morning progressed, I left the programming to Chris and just stood back to observe. Evelyn, I noticed, looked as if she were talking into her fist. Speaking ever so quietly, I had to move closer to hear what she was saying. She was so completely engrossed in her own world that thankfully she did not even notice me. I was shocked when I realized that wherever Evelyn was in her mind’s eye, she was in a place of horror, her own hell. She was talking into her clenched fist with total concentration. She was almost crying into her hand saying, “They are all dying, there is blood everywhere, please send help,” “The house is on fire, everyone will die, oh the children,” and on and on, as if a tragic newsreel were spinning in her head non-stop. She rarely hesitated, as if she were the only one who could get help in these desperate situations.
Thankfully, Evelyn was speaking in such a quiet voice that none of the other residents could hear her, so she was not disrupting anyone, but I was horrified. Chris saw my reaction and immediately came to my side. In a quiet voice, she told me that many years ago Evelyn had been a police dispatcher. The clenched fist had now become her microphone and the only way she had to communicate to the “police” in the field. I was instantly flooded with memories of my own childhood when my father, Emile Simard, was a police officer in Concord, New Hampshire. I can remember him taking me to the police station and leaving me in the office where the police dispatcher spoke into a microphone, just about the size of Evelyn’s fist. Evidently, Evelyn had been on duty when a commuter train crashed in a suburb of Boston and hundreds of people died. She must have been reliving memories of the calls she received from witnesses of the accident who were phoning the police station, begging for help. Although many different medications had been used to try to wipe away the terrible images of that day—and no doubt other days when she had been called on to help people in distress—nothing worked, and her own private hell went on and on far into the night, according to Chris.
Could Namaste Care help Evelyn clear her mind of these appalling visions? The room usually helps calm even the most anxious resident, but would it work for Evelyn? Then, the Life Enrichment Director came into the room with a stem of baby roses. They were a soft pink color, and the prickly stems were wrapped in a paper towel so they were not harmful to hold. She approached Evelyn with a smile and offered Evelyn the roses. Evelyn stopped talking and stared at the Life Enrichment Director with some suspicion. Then, to our amazement, she took the roses and, with a smile, began to smell them. The transformation was like a miracle happening right before our eyes! Evelyn seemed to have been transported to another, happier place in her mind. Looking at the roses in her hand she said, “Clyde [her deceased husband] gave me these, aren’t they beautiful? I love Clyde, and he loves me.” I stood there mute, almost disbelieving what I was seeing and hearing. Evelyn’s transformation had been so sudden and shocking that, without thinking, I blurted out, “Could I smell them?” Then I was immediately sorry for my outburst, as I was sure she would once again retreat into the other world if my face caused the same reaction that it did on our first meeting. She gave me the “evil eye” once again, but this time she hesitantly held the roses out to me so I could smell them—I did. One millisecond later, she evidently had second thoughts about me because she violently jerked the flowers back and, in the process, hit herself in the face with them. We all stood there wondering what to do, when much to our surprise, Evelyn began to laugh. I turned to Chris, who had tears in her eyes and said softly, “I have not seen Evelyn laugh in months. This is truly a Namaste miracle!”
That incident led Evelyn to a happier place for most of her remaining days. Did she retreat back into her life as a police dispatcher? Yes, she did, but it happened less and less frequently. As the days grew into weeks, it appeared that Evelyn began to recognize the Namaste Care room and her space in it. Chris, the “miracle worker” in this story, began to have conversations with Evelyn and was able to duplicate the “rose experience” in several ways. For instance, one day Evelyn asked for some books. Chris asked someone to watch the residents and dashed off to the library where she grabbed some books. Pleased that she had been able to respond so quickly, Chris gave the books to Evelyn expecting a “thank you,” or at least a smile. What she received was a glare that seemed to say “this is not what I wanted.” Evelyn finally said, “No, the books in brown paper.” The next morning, with the books wrapped as requested in brown paper, Evelyn happily unwrapped them and, with a huge smile, began to look through them. This became a daily ritual for her—a happy one.
Evelyn, with her caregiver Chris, telling stories about how she loved to make a pot of tea and have tea parties.Photo courtesy of Joyce Simard, MSW.
When I visited the facility a few months later, I had an opportunity to see the “new” Evelyn. Chris told me that one day Evelyn told her, “I have 12 cents. Please buy me a teapot.” So, of course, Chris found a small teapot for her. During this visit, I had the good fortune to see Evelyn and capture the look of pure delight as she held and caressed the teapot, telling stories about how she loved to make a pot of tea and have tea parties. On that day, Evelyn looked at Chris and with a glowing smile said, “I’ll give you a back rub,” and she did. It was a “1-minute special,” but the gesture was thoughtful and brought smiles from both Evelyn and Chris. I probably stood there with my mouth hanging open in amazement. Could this be the Evelyn who had been trapped in a world of horror? The most welcomed role reversal had just transpired: Evelyn had become the teacher and I the student. From that moment on, I was more and more open to encouraging staff to bring the most challenging residents, the ones who do not necessarily “fit” the criteria for Namaste Care, to try them in the program.
I was telling and retelling Evelyn’s story when I heard the news that the entire facility was in the process of a major renovation, and Evelyn had been moved to another EPOCH Senior Living community. Fortunately, this one also had a Namaste Program, and Chris’s role was in the very capable hands of another wonderful Namaste Carer.
Evelyn continued to have beautiful experiences in their program. However, several months after she moved, her condition declined, and she became a hospice patient. A hospice volunteer became her new friend. In the last months of Evelyn’s life, she actually recognized her, smiling broadly when she came to visit. The volunteer told me that she and Evelyn had great times together as Evelyn decided that she needed to help her compose a shopping list before she could leave. When she would tell Evelyn that she had to go to do the shopping, Evelyn would take her hand and kiss it before she would let go. In these last months of Evelyn’s life, she also had another very special friend: the facility cat. Every day, the staff would make sure Evelyn had ice cream, and every day, the cat would come to her room, meowing for a treat.
When Evelyn died, she had outlived her husband, Clyde, and most of her friends. In fact, her Power of Attorney was the daughter of her former landlord; she truly was alone. Yet, in the last year of her life, she was transformed from an untouchable and deeply disturbed woman to one who smiled, made friends, and would not only allow staff to touch her but would reach out to touch and hug them. When Evelyn died, she was not alone; she was wrapped in a warm cocoon of love, surrounded by people who cared about her—a small reminder that small miracles happen every day in our long-term care facilities.