Consultant, New England QIN QIO, Healthcentric Advisors
Margaret was a lovely, wisp of a lady who was living with dementia and came to live with us when circumstances were such that staying at home was no longer an option for this bright and cheery soul. Though her language skills had diminished to near non-existence, she communicated clearly through her love, effervescent personality and generous spirit. Much of this love was heaped upon a small doll that served as Margaret’s constant companion. It arrived with Margaret and was never out of her arms. They slept, ate and spent the day together chatting about all manner of things! It wasn’t long before we realized the importance the doll played in her life. With her companion by her side, Margaret was in her comfort zone; she lived fully into her best self. What we came to understand was that Margaret’s doll supported her identity as a caregiver and mother. The doll became a part of Margaret’s care plan to ensure that the comfort it provided would be available to her without interruption. This required some planning as the doll was often in need of a bath due to her sharing Margaret’s meals. Only once had the doll been withdrawn from Margaret’s motherly arms causing such a great disturbance that it was decided that the doll would be bathed late in the night by the night shift and tucked back in Margaret’s arms before dawn to avoid any discomfort on Margaret’s behalf.
Seeing how much the doll meant to Margaret and the comfort that it brought, our ladies auxiliary offered to buy a collection of dolls so that everyone who wanted one could have a doll of their own. The offer, of course, was met with appreciation. It might surprise the reader to know that the offer was declined. The caregivers who worked most directly with residents who were living with Alzheimer’s disease had come to recognize the value of creating very personalized interventions to support the comfort and well-being of each person. They were champs at it too! For one man, John, they had a box that contained an old pipe, a pair of leather slippers and a wallet filled with memorabilia. Another had a box that contained a small cassette tape player and tape with the recording of a woman’s family saying the rosary together. With her headphones on, you could see her utter delight as she exclaimed, “there’s Janey!” She would proceed to say the Rosary with her kids. All of these small offerings went a long way to help folks to be connected and comforted. We called it “the zone” and, as caregivers, we did everything in our power to keep people in “the zone” and avoid what we described as a “comfort crisis.” It happened because staff knew their elders so well and recognized when they were becoming discomforted. They could anticipate elders’ needs and jump in with specific personal interventions-for one, it was a soothing back rub, for another, a walk to the chapel and yet, for another, it was making a pot of tea in an ol’ brown betty. That is person-centered and deliberate. Interventions such as these are those that begin to create an environment where person-centered care can flourish. So often, care plans read “redirect” as some generalized marching order — a vague notion to get people with Alzheimer’s disease distracted when instead, it should offer ideas that soothe and comfort, prevention strategies that keep folks from becoming bored or lonely. Oh, and there is so much more that can be said and done within this context!
That’s why the ladies’ auxiliary’s offer was declined. To accept those dolls and dole them out to anyone would institutionalize a person-centered practice. It presumed that what was good for Margaret was good for everyone. And really, haven’t we had enough of that?! We had spent many years as a community, trying to break out of old routines and institutional practices like putting everyone to bed by seven in the evening or making everyone eat at the same time and sit in the same seat. Beautiful communities have arisen recognizing the need to support elders in creating meaning and purpose for their day and to frame their own day and life in the best possible way. The best way to do this and the best reminder to all of us was offered by the early Pioneers who provided us with these values:
◆ Know each person
◆ Each person can and does make a difference
◆ Relationship is the fundamental building block of a transformed culture
◆ Respond to spirit, as well as mind and body
◆ Risk taking is a normal part of life
◆ Put person before task
◆ All elders are entitled to self-determination wherever they live
◆ Community is the antidote to institutionalization
◆ Do unto others as you would have them do unto you
◆ Promote the growth and development of all
◆ Shape and use the potential of the environment in all its aspects: physical, organizational, psycho/social/spiritual
◆ Practice self-examination, searching for new creativity and opportunities for doing better
◆ Recognize that culture change and transformation are not destinations but a journey, always a work in progress.