Robert Frost
The above words of Robert Frost are a poignant commentary on our human condition, on the centrality of the inner self-feeling, heart, spirit, soul-to well-being and to life itself. These words are never more touching and true than when it comes to connecting with persons with dementia; many have indeed, in a strict sense, let go with the mind, and also with the body.
But what of the heart? What of the spirit and soul that is still throbbing and vibrant, with joy and with pain, seemingly trapped inside the stricken mind and body? Many of us have been privileged to experience the blossoming of feelings and emotions that so often seem to accompany the cognitive losses of dementia. It is as if the heart and spirit have been set free by the overcontrolling mind; the right brain has gained its voice after a lifetime of left-brain domination.
Many family members and friends share that in the midst of their grief they have also experienced a new-found depth and richness of emotional connection. Anne was amazed that the first Christmas after her husband Leo's diagnosis was in so many ways their best. Leo joined the spirit of the celebration with unheard of enthusiasm and for the first time ever hugged his grown sons. Constance, always reserved and distant, began to reach out with humor and touches to her husband, surprising him with affection never previously expressed and astonishing him most of all by singing along heartily with his favorite country and western tunes. (Previously, Constance had always made scathing comments about any type of music other than classical).
And, yes, most have also been honored with the trust of persons with dementia who have expressed their hurts and their pain to us.
The pain and distress in the anguished cries for mother, the anger and frustration in the body that resists assistance from caregivers, the loneliness and need in hands that reach out to passersby, the hopelessness and sorrow in the sad eyes staring into space, the boredom and loss in hands beating a hollow rhythm on chair arms, these and many other expressions of pain and hurt reach the ears and eyes of everyone who spends time with persons with dementia.
Tragically, it is much more difficult for these expressions to reach our heart and our understanding. The folk expression "Laugh and the world laughs with you, cry and your cry alone" far too often hits the mark in dementia care. Not only are expressions of sorrow, pain, and fear from persons with dementia frequently expressed in less than conventional ways, they call upon the listener to reach out for understanding from a personal sense of frailty and vulnerability as well. It is not easy to walk in those particular shoes of the other person.
Sometimes, the validity of the feeling, and of the person, is rejected outright.
Because of rapidly advancing dementia, Jack had retired early from his happy working life. His family helped him to stay at home for as long as he could, but when this was no longer possible he was moved into a nursing home. This move did not solve the problem of Jack needing to be busy, and in fact the problem became even worse since none of the activities or people familiar to him were available. He spent his days wandering about the halls trying to find something to do. He invented a lot of work (eg, rearranging the dresser drawers of others, picking up laundry, sorting the notices on the bulletin board), but his efforts were not well received by the staff or the other residents. Jack was on the receiving end of a lot of angry words and was often seen pacing the halls with tears streaming down his cheeks.
On one such occasion, a staff member who passed by the sobbing Jack said, "Big sucky baby, Jack." Not only has this staff member not heard with her heart, she had inflicted further pain as well.
Jack's attempts to "say" that he needed to be busy, and that he felt very sad when he was not, for the most part went unheard, and worse, still ridiculed, as above. What a difference it made, however, when Jack's sorrow at the losses in his life was met with compassion, understanding, and a warm hug or when Jack was offered the opportunity to help push the meal cart or fold the laundry, to have his need to be busy understood. On these all too rare occasions, he responded by ending his tears and expressing his gratitude in a smile.
Other times, the hurt and the need expressed through actions and behaviors is misunderstood.
Arthur and Thelma had enjoyed 47 wonderful years together before Arthur developed dementia. As the losses and changes took their toll on Arthur, Thelma continued to share her life and her love with Arthur and was determined to enable him to continue to live a quality life at home with her as long as possible. There came a time when Arthur could no longer go everywhere with Thelma as he used to and stayed at home with a paid caregiver. Thelma really did not want to leave him, but she had no choice. Not too long after this practice began, Thelma was astonished to see that Arthur began to express anger and suspicion about her, saying things like "You are going off to see another man, I know what you are up to." or "I always knew that I couldn't trust you, you are spending all of my money on new clothes for yourself."
Understandably, these accusations stung Thelma to the core and she would explain tearfully and logically where she was going or show Arthur their bank accounts. However, no explanation would appease Arthur's suspicion and anger; in fact, the more Thelma explained, the more unreasonable and nasty Arthur became.
Thelma was beside herself with grief and finally called the Alzheimer Helpline for advice. She was fortunate to have reached a very wise counselor who helped to get to the pain and hurt, the feeling, behind Arthur's accusations. Eventually, Thelma came to understand that Arthur was expressing his pain and loss at no longer being able to accompany her, his fear that she would abandon him, and his need for her constant presence in his life. Looking behind the words for the feeling helped to take the sting out of the words for Thelma. It also enabled her to stop offering logical explanations and instead to empathize with Arthur's feelings of loss and fear and offer him reassurance that she continued to cherish him. Although Arthur continued to express his fears and concerns, when Thelma heard the hurt with her heart, and responded from her own, the accusations became less frequent and intense.
And mercifully, there are times when the person with dementia has his or her feelings of pain heard and honored.
In Mr MacDonald's case, one did not have to stretch too far to stand in the shoes of the other since the pain and the distress that he was experiencing was palpable; he lay in a hospital bed far from his wife of 60 years and the beloved highland croft that had been home to his family for generations. As if the separation from all that he loved and knew was not enough, he was recovering from an amputation of his right leg, and all of this was made still more difficult by his having Alzheimer's disease.
The relative stranger who shared his hospital room was overwhelmed by the sorrow of the situation and tried his best to comfort the old gentleman but did feel rather powerless. Numerous nurses had come and gone with meals and medications and had offered a few words, amounting to "there, there." One remarkable nurse, however, really listened to her patient's anguish and asked compassionately, "Well then, what is the trouble Mr MacDonald?"
He replied, tearfully, "Aye, do ken lassie, my saere bitties is sae sore."
"Which ones are the saerest bitties?"
"Ah, lasss, everything, but my right leg, that is the saerest bit of all."
"Well then, shall I rub your saer bitties, would that help?"
"Aye, lass, it would."
The nurse, with a heart of gold and hands filled with love and compassion, leaned over and, speaking gently, ran her hands above where Mr MacDonald's right leg would have been. When she said, "Well then, I am rubbing your right leg now, can you feel that?" Mr MacDonald replied, "Aye, lass, that is sae wonderful, it feels much better."
By connecting with Mr MacDonald's emotional need, by entering his world, this nurse had not only relieved his pain, she had brought him comfort and solace as well, surpassing anything that rational explanations or medication could possibly offer; she had heard and helped to heal his hurts.
This issue of Alzheimer's Care Quarterly is the first of two focusing on the vital, and enormous, topic of "Hearing and Healing the Hurts of Dementia." We begin with the voice of Jillian Moss and her "Reflective View on Alzheimer's Disease," bravely sharing her own painful experiences and her struggle to be heard as well as her current journey as a caregiver-an insightful message about walking in the shoes of the other. There are indeed ways of hearing, listening, and communicating that offer healing, and we thank Nancy Jeanne Haak for gathering together the research and the practical suggestions on this topic. Phyllis Harris offers a moving and practical account of the challenge of having their concerns heard faced by persons with dementia who live alone. Because of challenges in communication and understanding hearing, and healing, the physical pain of dementia is also challenging. Colm Cunningham's study of the decision-making process with regard to the administration of "as needed" medication in care homes adds to the disconcerting evidence that "hearing and healing physical pain" among persons with dementia requires a complete cultural change in care practices. Caregivers also experience many hurts over the course of providing dementia care, with one of the most painful being the placement of the person in their care into a long-term care facility. Olimpia Paun and Carol Farran's article illuminates some of these issues as well as offering ways in which caregiver needs could be better met. Barbara Susan Dicker, Sudarshan Chawla, and Neil Preston's study of a customized caregiver training project offering encouraging evidence that supporting home-based caregivers by offering skills development, especially in understanding and responding to the behavioral symptoms of dementia, can indeed help to alleviate the stress and pain of providing dementia care. Barbara Weinrich and colleagues' pilot study of brief communication counseling for family and paid caregivers suggests that there is potential to improve the ways in which caregivers "hear" persons with dementia, which can be of benefit to both. We close with the always wise words of Phyllis Dyck in her Partners in Care column when she addresses some of the many challenges, and the possible responses to these challenges, involved in hearing and healing the hurts of dementia.
Phyllis brings us around again to the insightful opening words from Robert Frost; as partners in dementia care, we are called on to listen with the heart, to respond from our spirit, and, like the nurse in the story above, to offer comfort and healing by "rubbing the saer bitties."