Not Just An Activist Cause, It’s The Law!
My father once said to me, “Linda, when I can no longer control what I do and say, take me to the middle of the lake in my boat with my shotgun; that is my choice for the end of my life, not a nursing home.”
His words made me uncomfortable for more than the obvious reasons. As a health professional committed to serving elders in long term care facilities since 1974, and as an only child committed to honoring my parents wishes, the irony of working as an administrator in a facility I promised my parents I would never ask them to live in was heavy on my heart. (My father died rather suddenly in a hospital so that I never had to exercise either other option.) I was further challenged by the knowledge that Katie, my profoundly retarded adult child, lived each day of her life to the fullest. (She died in February 2005 at age 37, functioning at the level of a 9-month-old.) She lived most of her life in institutional environments. As her guardian, advocate and spokesperson, I could shape a life of choice, control and daily pleasures for Katie that was not to be found for the elderly residents of nursing homes. In fact, Katie’s plan of care always included “sitting in the sun, feeling the breezes, onion rings and beer.”
As humans we have free will to shape our lives. We make choices every minute of every day. Why, in our later years when we have so much experience being human and making choices would we be happy to suddenly turn the conducting of our lives over to someone else, let alone someone we don’t even know? Why would we let someone decide for us, before they had even met us, what time we should wake up or how we will spend our days.
Today, my mom could have that life of choice, control and daily pleasures in a nursing home - not just any nursing home, but in one of the many nursing homes around the country committed to empowering residents and creating small communities within their walls. In these homes, together with staff and family members, residents plan for daily life that includes their personal daily pleasures, woven together with memorable moments and meaningful social occasions, all together in a healthy community.
“What are the house rules?” asked one spry resident when moving into a nursing facility committed to culture change. “There are none,” replied the staff member from the home. “This is your home, whatever you want to do, however you did it at home, that’s how we will try to do it here.”
Roger Beins, Clinical Mentor describes waking up in a household at Meadowlark Hills in Manhattan, KS – “Imagine waking up to the smell of frying bacon, freshly brewed coffee and home made cinnamon rolls. Our residents determine when they want to have their breakfast and what they would like to eat. Then, it is made to order right in their own kitchen where the smells of cooking fill the morning air. Residents can gather at their leisure to read the morning paper, have a cup of coffee with friends or catch up on the latest gossip. Or, if they prefer to sleep in, breakfast is available to them right up to and during lunch. From Captain Crunch at 5:30 am in the morning to individual pizzas at bedtime, we are constantly looking at individual resident’s preferences, making all efforts to provide appropriate choices in foods and times…in hopes that mealtime can be a pleasant, social experience that everyone looks forward to every day.”
Life in Spruce Lodge is “natural, like a day at home,” says Karla Nieman, community coordinator, Bigfork Valley Communities, Bigfork, MN, “with quiet times and busy times, delicious delectable cookies and the ones that didn’t turn out quite as good, days with lots of visitors and days when the choice is the TV, taking a nap on the couch, a crossword puzzle or just visiting with each other.” Diane Showalter, care assistant at Bigfork Valley Communities, says, “The residents love it. They can make choices, get up when they want, have coffee when the mood strikes. They can help with dishes, set tables, you know, they do family things.”
In culture change facilities, residents just live their lives the way they live it. They follow their own routine and do whatever brings them pleasure. For some this could mean doing nothing. Doing nothing is an activity too. There is time for habitual activities, such as a Thursday afternoon card game with friends and time for spontaneous activities as well.
Often the best times are those that just happen. No plans are made in advance. No agenda is kept. Life just unfolds. One day a staff member at Meadowlark Hills ask a resident, a “prim and proper” Presbyterian woman, what she wanted to do that day. The resident said she wanted to rent a limo and go to the cowboy bar downtown. The staff figured out how, found other residents who wanted to go as well, and the limo was there within a couple of hours. Down at the cowboy bar, as the residents walked and wheeled in and the cowboys stared, Helen blurted out, “Let’s party!” And that they did. A good time was had by all. So much so, that on the way out, residents and staff overheard a cowboy say, “I want to live at Meadowlark.” That is living life. That is not being parked in your wheelchair in the hallway for hours.
Choice for residents of long-term care facilities is an inherent right, addressed in the Omnibus Budget Reconciliation Act (OBRA) of 1987 as Self-determination and Participation: The resident has the right to: choose activities, schedules and health care consistent with interests, assessments and plan of care; interact with members of the community both inside and outside the facility; and make choices about aspects of his or her life in the facility that are significant to the resident. It’s not just an activist cause, it is the law.
In traditional nursing homes, choice is limited by the institution’s schedules, staffing patterns and priorities of efficiency. It is common that residents are told when their bath will take place and when and what they will eat. Often staff start getting residents up as early as 5 am in order to have all residents ready and in the dining room for breakfast at 7 am. Small children often have more say in their lives than this. So, for staff to make the change from dictating how residents’ lives will play out to facilitating residents’ choices, they must ask:
What does the resident want? How do they do it at home? How can we do it here?
Here’s how it works, using awakening for the day as an example: Staff ask the resident what time she wants to get up. If she cannot answer, staff watches the resident’s usual patterns, and how she responds when she is gently awakened at different times. The staff checks on the resident regularly for a couple of days and wait until she wakes up naturally to determine her natural waking time. They ask the family to determine the resident’s usual pattern of arising. They get the resident talking about mornings at home by gently talking about mornings when the resident’s children were in school or when she first retired. Staff members talk about how they do it at home. What they do on days off when they don’t have to get up for work. What does the resident like to wake up to? Soft music? The smell of coffee? Then staff put the pieces together to figure out what waking routine will make the resident most happy.
Ask yourself, “What would a nursing home have to offer you in terms of life choices for you to want to live there? What would you want your day to be like? What makes it worth getting up in the morning? What do you look forward to every day?”
What are your daily pleasures? Jalapeno peppers or hot sauce? Latte and scones? Sleeping in, sleeping in the sun or sleeping with your favorite feline? Going to everything or going to nothing? Turning in early or watching the late movie? Oreos and milk before bed or a glass of wine before bed? Three meals at scheduled times or grazing throughout the day? A hot shower, a bubble bath, a navy shower or a long soak with a good book? Climbing a tree, cutting a tree, sitting in the shade of a tree or watching the birds nest in a tree? Waking up with the Wall Street Journal, waking up with the birds, waking up slowly or waking up with a hot (or cold) shower? Your life’s daily pleasure, and the pleasure of your loved one needing support for a quality of life can come from the competent and caring staff in a nursing home committed to resident directed care.
“I could live here” remarked my mother when she visited just such a facility. Power, autonomy, personal freedom, decision making, the dignity of choice are all critical aspects of individualized care for frail elders honored by long term care facilities committed to resident-directed care.
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Pioneer Network, a culture change organization
Action Pact, a culture change organization
The Foundations of Culture Change: Underlying Principles