Advocacy, social justice activism and standing up for what is right are all in my genetic code. They are also foundational to my faith. With a father who was a Presbyterian minister, theologian and professor of religion, and a mother who was a lifelong champion for those without a voice, I was raised to understand the teachings of Christ and to strive to follow his example. I had two of the most exemplary role models for inspiration and strength.
No surprise, then, that I found a career serving people with severe developmental disabilities and advocating for treating them with respect and dignity as human beings. I always said it was a “career without a path,” because I never had any idea what would come next. I trusted that opportunities would present themselves. I would recognize them, and I would figure it out.
Looking back, I can clearly see where God laid choices before me.
Looking back, I can clearly see where God laid choices before me. Sometimes I chose wisely; sometimes not so much. But God continued presenting both obstacles and opportunities to challenge me.
After a career serving people with developmental disabilities, and with a child in college, I confronted a decision: retire or face undesirable life changes. I was unable to see how I could make retirement feasible with college debt, a mortgage and unfinished business at work looming. But after weeks of daily conversations with God, I discerned my path. I retired. And God revealed God’s purpose for me in short order.
Advocating for my mother
Six weeks after I retired, my mother suddenly declined into severe dementia and could no longer function in my parents’ home, in the independent living section of their continuing care retirement community. She had to go into the nursing facility there.
The first thing dementia took from my mother was her ability to speak. She became a member of a group without a voice: nursing home residents who cannot speak out when something isn’t right.
Having recently retired from my own career giving voice to nonverbal people who clearly communicate their needs, objections, preferences and emotions through their behaviors, I immediately realized I had to become my mother’s voice, to advocate for her.
The journey was arduous and heartbreaking. My mother could no longer execute simple tasks. She needed help to dress, eat, drink, bathe and walk. Through her behavior, however, she clearly expressed her wishes, preferences and disapproval of being treated in ways she didn’t like. But staff people didn’t perceive her behaviors as nonverbal communication. They interpreted her assertiveness as combativeness. When she didn’t receive her medications separately, as she preferred and as ordered by her doctor, she spit them out, not understanding what she was receiving or what they were for. Staff interpreted her behavior as “refusing medications,” even though they were crushing all of them together against the doctor’s orders.
When my mother displayed modesty about her body, she was labeled as “resistant to care” and handled roughly. When she didn’t like the way food looked or how it felt in her mouth, she stopped eating. Staff documented that she “refused meals,” without offering her choices. When she expressed her desire to visit with friends by walking up the hall, staff considered her to be “eloping” from her designated location in the facility, and they pursued her. Each label the staff applied to her nonverbal communications led them to try to medicate her behavior into compliance by prescribing inappropriate psychotropic and antipsychotic drugs to someone who did not have a psychiatric diagnosis.
Sadly, this phenomenon occurs all too often in nursing homes and other long-term care settings. Because she couldn’t initiate drinking, she suffered repeat urinary tract infections (UTIs) and episodes of dehydration, resulting in hospitalizations with IV fluids and antibiotics. Her resistance to what she considered rough treatment resulted in bruises, skin tears and even a broken collarbone. Although no one ever saw her fall, she was tied in a wheelchair to prevent falls. And when she was lethargic because of a UTI or dehydration, staff assumed she was just sleepy and were relieved she was quiet.
My job as my mother’s advocate was to make sense of all these pieces: to interpret my mother’s nonverbal behavior, to help staff understand that her supposed acting-out was her only means of communicating her dissatisfaction with what was happening and to emphasize that she was not psychotic. I worked with staff to ensure my mother’s care plan included important information, preferences and techniques for providing care and activities. Still, I had to remember and remind staff that, although my mother’s core personality had not changed, her cognitive and executive abilities had. This process took time, and I promised my mother to see it through so her quality of life would get better.
…I had to remember and remind staff that, although my mother’s core personality had not changed, her cognitive and executive abilities had.
Advocacy requires knowledge
My lengthy service in long-term care taught me that strong advocacy for our loved ones is best founded upon knowledge. The field of long-term care is very different from any other aspect of our lives. Understanding state and federal regulations that govern providers of long-term care is essential. Federal regulations are quite thorough and govern all long-term care providers in any setting that accepts Medicare or Medicaid funds. They form the basis for state regulations; so even if a particular provider does not receive federal funds, understanding the federal regulations empowers our understanding of the intent behind the state regulations.
Providers are not a reliable source for information about federal and state requirements. Advocates must go to the source – the regulations themselves – to learn what is required, what is supposed to be happening and not happening, in the care of their loved ones. Then they must get to know the policies and practices of the provider and observe how the provider implements them.
My lengthy service in long-term care taught me that strong advocacy for our loved ones is best founded upon knowledge.
Ways to improve care for a loved one
My organization, Our Mother’s Voice, has developed a set of concrete steps and actions that advocates can take to improve care for our loved ones. These steps are as follows (reprinted from Our Mother’s Voice):
- Stay involved with your loved one while they receive long-term care. Visit. Learn the plan of care, and make sure it meets your loved one’s needs. Provide information to staff that will help the plan of care to be complete and meaningful. Communicate regularly with your loved one’s social worker.
- Observe and document (date, time, details) your experiences when you visit the long-term care setting: your loved one, other residents (if applicable), the surroundings, the staff. Note anything good, and let the staff know. Note anything that doesn’t seem right. Look for “trends” — more than one occurrence of something.
- Ask questions of the staff, and work with them if you see anything that needs attention, even if it is not a trend. Left unaddressed, it could become one.
- Become familiar with the provider’s policies and the state/federal regulations that apply, so that you know what should be happening. Identify specific problems or violations, and talk with management staff. Ideally, you should not have to go beyond step 4. If you know what should be happening, understand the policies and regulations and work with staff, you should be able to resolve most issues. You might need to take steps 5-7, however, if the preceding steps do not result in improved care.
- Approach the facility administration and then the corporate leadership if violations or problems persist. Cite the policies and regulations that are in violation, and give examples of your observations and efforts to work with staff to correct them. Make notes for yourself so that you will be thorough and accurate when you approach these officials.
- If these efforts fail, the state regulatory agency has a complaint-reporting process. They will need the information you have gathered in writing from steps 1–5 above, and they will refer you to the agency staff who take reports of complaints or violations.
- The regulating agency will determine whether investigation is warranted. Follow up with the regulatory agency after it has completed an investigation, so you can learn what it found and what you can expect the facility to do in response to the investigation.
In addition to, in place of or alongside steps 6 and 7 above, advocates may take other steps. Many providers have family councils that give families a voice and a venue to discuss, learn from and interact with the provider’s administration on behalf of all consumers of care and their families. These councils occasionally conduct special activities for their consumers. You may want to become involved with the family council if your loved one’s provider has such a group. If not, you may want to advocate for them to establish a family council.
Each state also has a long-term care ombudsman program to help consumers advocate to resolve individual issues of quality of care. You can find your state’s ombudsman at theconsumervoice.org/get_help. These programs vary in structure and scope, so ask your state’s ombudsman: Are you independent, or are you a part of a governmental agency? Do you take cases in assisted living, in-home care, day services and so on?
Consumer-driven quality of care meets the needs of all residents
My family understood that moving my mother to another facility would not solve the underlying issue of poor care. We were committed to advocating in whatever way necessary to ensure our mother’s care. Unfortunately, not everyone has strong advocates in their corner. Our mother would have spoken out not only for herself but for everyone in her facility, to advocate for quality of care, quality of life and the rights of all residents.
So we considered our advocacy as part of a larger catalyst to change the culture in our mother’s facility. We pushed for a culture that puts the consumer in the center of quality, individualized care to meet the unique needs and preferences of each resident, respecting their dignity and honoring their uniqueness. In our case, we had to take the seven steps listed above to initiate the culture change. But culture change began to happen
Quality of care in a consumer-centered culture speaks to the way a consumer is treated every day — by everyone who comes in contact with the consumer and by the organization itself. A consumer-driven quality of care appears in the way the nurse approaches the consumer about taking medications and whether the nurse dispenses medications in a way that makes the consumer comfortable. Such quality of care appears in the manner in which the aide helps with personal care routines formerly performed by the person now receiving care: modestly, independently and in private. Quality of care is the effort the staff take to ensure that people in wheelchairs have opportunities to stretch, stand and walk with assistance as they are able, because these activities provide so many health benefits. Quality of care shows up when the provider gives thought to organizing the consumer’s day meaningfully, rather than prioritizing the staff’s convenience or task schedule.
Quality of care is found in the attention the staff gives when a consumer complains of an ache or pain for the fourth time. Do staff assume the consumer is merely rambling pointlessly because of dementia? Or do they check, just in case, to rule out illness or injury?
Finally, quality of care means something different for each individual. Each person is different, with different needs and experiences. Quality of care takes these facts into account and establishes approaches that make sense for each individual, given each person’s unique circumstances. Quality of care provides enough staff, and trains those staff sufficiently, to enable all these activities for consumers every day.
Quality of life in a consumer-centered culture includes medical care and meeting physical needs, of course. But it also means honoring each individual’s personal preferences about activities, day-to-day schedules, personal space, how personal care is provided and all the little things the rest of us take for granted every day — even for those who cannot participate in groups, are not physically active or cannot make choices on their own. Quality of life is not measured through the eyes of others. Rather, it is measured through the individual consumer’s perspective.
The rights of residents are too extensive to list here. A dignified existence, self-determination, quality of care and quality of life are all resident rights. Visit the website of Our Mother’s Voice, ourmothersvoice.org, and follow the link for federal regulations at the bottom of each page. Once there, click “View Table of Contents” and access sections 483.10, 483.15 and 483.40 for a comprehensive description of the rights of nursing home residents. Other types of long-term care have their own regulations that include these rights, but understanding these regulations provides a good basis for advocacy in any care setting.
Quality of life is not measured through the eyes of others. Rather, it is measured through the individual consumer’s perspective.
How our advocacy helped my mother
In my mother’s case, consumer-centered culture change resulted in improved quality of life, even in her advanced stages of dementia.
Staff learned to interpret my mother’s nonverbal communication. Walking up the hall meant “I want to visit my friends.” Pulling away from staff meant “You’re being too rough with me” or “You’re moving too fast for me.” Striking out meant “I don’t like this situation.” Lethargy meant “I don’t feel well.” Refusing medication meant “I don’t know what this is” or “I don’t like the way this tastes.” Resisting getting up in the morning meant “I want to sleep longer.” Refusing her food meant “This isn’t appetizing to me.” Staff rewrote my mother’s care plans to include strategies to address all these preferences, including dietary changes to accommodate her individual tastes.
My mother went from having UTIs and dehydration episodes every six weeks to experiencing two and a half years of good health. The facility implemented a hydration program, and everyone’s health improved. So even at her late stage of dementia, a culture of person-centered care mattered to her. With this culture change, not just my mother’s, but everyone’s quality of life improved.
When such culture change occurs, staff are happier, residents are happier, work is easier, and days are more enjoyable for everyone. Both staff and residents feel valued and empowered. Behavioral challenges decrease, and the use of psychiatric and sedating medications declines. Put simply, quality of life improves for everyone.
Advocacy … takes strength in adversity, perseverance in disappointment.
Advocacy takes strength and perseverance
Advocacy is hard work. It takes strength in adversity, perseverance in disappointment. My parents prepared me for this work in many ways, every day. Their example taught me to be strong. My faith lifted me up. And my favorite teaching of Christ continues to guide me. Matthew 25:31-46 instructs us all, particularly verses 35-40:
“For I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you welcomed me, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me.” Then the righteous will answer him, “Lord, when was it that we saw you hungry and gave you food or thirsty and gave you something to drink? And when was it that we saw you a stranger and welcomed you or naked and gave you clothing? And when was it that we saw you sick or in prison and visited you?” And the king will answer them, “Truly I tell you, just as you did it to one of the least brothers and sisters of mine, you did it to me.”
Thanks be to God.
