As a college student, I was required to complete an internship in order to receive my certificate in Gerontology. Like many of my classmates, I assumed I would help in Activities at a Nursing Facility or do some administrative work at a Council on Aging. But when my advisor suggested that I intern at an agency that does guardianship, I didn’t have any idea what to expect. I had heard about guardianship for children, but not for adults with disabilities.
A few years later, as a Ph.D. candidate in Gerontology, I did a research project on guardianship for my dissertation. During this period, many people asked me what a guardian did. In the ensuing years, as I have transitioned from student to practicing Gerontologist, I have met many more people who are familiar with the concept of guardianship, but unfortunately this is often due to news stories of abusive or neglectful guardians and guardians who remove people from their homes and warehouse them in facilities. When I encounter these people, I try to tell some of the positive stories about my experience working with people who need decisional support.
The following is a story of a former colleague’s client, Rita (not her real name), which highlights that, with proper oversight and training, guardians can offer immense benefits for those in need.
When Rita was appointed a guardian she was living alone in an apartment, estranged from family and poorly managing her medical and mental health conditions. She had had several hospitalizations in the year prior to her guardian’s appointment and it was recommended that she receive 24/7 institutional care. She adamantly refused to leave her home and maintained that she could take care of herself. Although she was supposed to receive Visiting Nurse services twice daily, she often refused care and would not allow anyone into the apartment. Protective Services had been directing the local police to do wellness checks on her for several days prior to the Court hearing.
When the guardian first visited Rita, she insisted that she did not need his help; she resented the intrusion of people into her home, and wanted privacy. The guardian explained what guardianship meant and promised to involve Rita in decisions as much as possible, but told her that her health was precarious and in order to stay in her home she would need to allow the nurses to help her with her medications. She reluctantly agreed to accept some help.
The guardian reached out to Rita’s Primary Care Physician, Homecare provider and Visiting Nurse to coordinate Rita’s care. He also began visiting Rita weekly to develop a relationship and ascertain her needs. She became more accepting during each visit, opening up about her family, health and finances. The guardian was able to convince her to accept the Visiting Nurse twice per day and she became compliant with her medications. A doctor’s visit soon after the guardian’s appointment showed that her labs were much better and she scored higher on a mental status exam than she had several months before, likely due to the stability of her medications.
Despite the guardian’s weekly visits, Rita began experiencing some paranoia, accusing caretakers and even her guardian of taking things like her letter opener, the hose to her sink and a spice jar. She began ignoring phone calls and refusing to allow nurses into her home.
After the guardian was unable to reach her by phone, he visited her apartment. When Rita failed to answer the door, the guardian called the complex’s maintenance department for a key. Rita was in bed, clearly ill, but refused to go to the hospital. Her guardian called 911 and used his position as guardian to consent to her transport and treatment. Rita had an infection and was hospitalized for a week before being discharged to a rehab facility, where she remained for a month to regain her strength. After this stay, she returned home to her apartment, where she continues to live today.
This story emphasizes the role of the guardian as advocate. Although Rita valued her independence, she was unable to make the decisions needed to protect her health and safety. The guardian helped Rita remain in her home by authorizing services and medical care as needed, thus allowing her to live as independently and comfortably as possible.
Serving as a guardian requires advocacy skills, an understanding of the decision-making process and knowledge of programs and services in the community. The Guardianship Academy offers training and support for guardians and those who make decisions with and for other people. The Academy offers programs on the basics of guardianship, decision-making as a guardian, and how to serve as a health care agent, as well as support groups for people serving as guardians.
For more Information on all of the Academy’s programs please visit guardianship.academy.
Heather L. Connors, Ph.D is Director of Research for Guardian Community Trust, Inc. (Community Trust), a non-profit organization located in Andover, Massachusetts, that advocates for guardianship reform through research, education and an active grant-making program. Heather has done ground-breaking research on guardianship issues, and prior to joining Community Trust, Heather was Guardianship Program Manager for Jewish Family & Children’s Services in Worcester, Massachusetts. She received her undergraduate degree in Sociology from The College of the Holy Cross and her Ph.D. in Gerontology from the University of Massachusetts, Boston.