A husband’s personal perspective of a Butterfly care home in Ontario, Canada
I am the Essential Family Caregiver (EFC) for my wife who resides in a person-centred care facility operating with the Butterfly Approach to care. She is living with dementia and has been living there for almost 3 years. Over time, her dementia has progressed and given me the opportunity to, not only gain personal growth in how I respond and take care of her, but also to observe how a person-centred approach adapts and evolves as the manifestations of her disease deepen.
First, I want to stipulate that I am an avid believer in, and advocate for, the Butterfly Approach to care. It has all the hallmarks of person-centred care, which reflects the dignity and individual needs of the resident, as well as respecting and supporting family throughout the entire hierarchy of the facility. This approach is evident in the attitude and personal care that staff provide to her daily. The openness of the administration to engage in meaningful conversation with me, her Essential Family Caregiver, on how best we can work together to provide my wife with the best individual care possible, reinforces that person-centred care works. Here are some examples of what I mean.
It is not at all unusual to see staff members kneeling, hugging, comforting, and caressing residents when they are in distress. One will often hear various comments that reinforce the adage “I am here with you.”
There are no uniforms, so staff and residents look like they are a normal family which enriches the feeling of a home atmosphere.
Everyone eats together like a family, unless of course, there is an outbreak.
Staff also read to individuals, enjoy games together and just sit and talk with them, not at them! Staff often bake various dishes and work in the garden with residents. When the baking is complete, or the produce from the garden is ready for harvest, the results of their work are shared with residents and even the Family Caregivers.
Birthdays and anniversaries are celebrated as any family would. Regularly, the celebrations are elaborate with room decorations, special foods, linen tablecloths and napkins, fancy tableware, and many other trimmings.
Family Caregivers frequently see a staff member with an individual living in the home strolling down hallways or in the garden, arm in arm. Sometimes you see them holding hands or hugging a resident who is in distress. This is just how a family would behave.
During the early stages of the pandemic, when families had limited access, special pillows were purchased having the face of a loved-one, usually the image of relative, imprinted on it to help keep their memories alive. Perhaps this may be considered a small gesture to some, but to me, it reinforces, just how important it is to treat a person like a person. This benefits both the resident and the family caregiver.
Staff do special things like bring in fishing rods for an avid fisherman or marshalling sticks for someone who spent a great part of his life guiding airplanes to their docking locations. They hold accounting meetings for residents who have that background. They even dress mannequins with fine clothes for those who had a career in the fashion industry.
I must say that there is considerable effort to reduce the use of antipsychotic drugs, by replacing them with person-centred care principles and procedures. This is evidenced by reduced inappropriate or difficult expressions of emotion and behaviours.
As her husband, it is really uplifting to be acknowledged by administration and all staff that we are essential to the well-being of our loved one. They also genuinely inquire about my health and well-being. This makes me feel like I am a very important part of the care model at this facility and being recognized for it, makes me feel part of the family.
All essential family caregivers are not identical. We come from different backgrounds and have various forms of expertise. Much of that expertise can be applied to person-centred care principles; however, the most effective caregiver will be the person who tries to be educated in the field of dementia care and its delivery. As in life, effective communication is a “two-way” street, and it is absolutely necessary to good care. In my circumstance, I consider myself to be very fortunate, given what is known about how other Long Term Care (LTC) homes do not operate and engage with residents and essential family caregivers in a meaningful way.
One final thought! Butterfly homes must meet a robust set of standards before a home is designated to be a Butterfly home. They are also required to maintain those standards on an annual basis to continue operating as one. I have seen those standards and most importantly, the philosophy which guides how they operate. I have to say I am thoroughly impressed. So far, I have not had any issues in trying to fulfill my role, which speaks volumes about the openness and willingness to consider us as true experts in our loved-one’s care. It is also important to know that we may not always understand the process of care and limitations placed upon LTC homes by government. This too, is part of the learning process for us as Essential Family Caregivers.
In closing, my experience with person-centred care has been very positive and I attribute that to the use of the Butterfly Approach to care, coupled with the competence and care of the entire team at the home. No one system is ever perfect, and at times, I have encountered challenges and disagreements that took time to resolve. Nevertheless, I would not want my wife to be anywhere else, nor would I want to engage with a LTC facility that has even the slightest reduction in competence and performance.
Perhaps this best sums it up: I can go home at night and sleep knowing my wife is in good hands. I trust them as I feel that my wife and I are part of a caring and larger family.