I am a Project Director within a university-affiliated center where my work focuses on systems change initiatives within long-term care for elders and people with diverse disabilities.  Recently, through a personal experience within my own family, I’ve gotten an inside view about how hard it is to avoid nursing home placement.

In 2001, my grandmother entered a nursing home at the age of 94. She was the healthiest 94 year old in town, taking only aspirin and having no acute episode or chronic medical illness requiring nursing facility care. With increased memory loss, she relied on routine visits from my aunt to assist her with chores and lunch.  As her needs grew, other family members began to help.  I took a day and brought dinner once a week for two years.

Like many families, my family was not aware of community-based options for older adults.  Eventually, my grandmother started to experience falls.  Although she was not physically harmed by the falls, they scared her to the point where she decided she wanted to live with my uncle with whom she had been close.  He allowed this, but it was evident that he and his wife did not have the skills and ability to care for her long-term.  A family fight began over the best option for grandma.  Some felt a nursing home was the best choice, while others disagreed.  Despite my awareness of community-based options, my grandchild role was more significant than my professional status, thus leaving me out of many of the conversations.  Before I knew it, grandma agreed to go to a nursing home, fearing she was the reason for our family turmoil.  

She entered fully mobile and continent.  Independent and opinionated, she became angry with the nursing home’s restrictions. To calm her anger and decrease her depression, the nursing home gave her psychiatric medications.  The medications impacted her ability to hold a conversation and made her unsteady on her feet.  She was put into a wheelchair and soon lost the ability to walk due to lack of exercise.  Incontinence followed since she was unable to access the bathroom (her own bathroom was not wheelchair accessible).  She often smelled of urine and had feces under her fingernails. One day my father found her asleep in her wheelchair, covered in urine and drooling. Devastated by this two-year experience, he decided to take her home. Although he and his partner worked full time, he felt he had to make it work.  We both thought she would be dead within six months.

Getting my grandmother discharged was a battle on many fronts. Some family members were against it and I tried to educate them.  Even the organizations advocating for community-based options were not familiar with transitioning long-term nursing home clients to the community.  A community service intake worker felt that if my grandmother was in a nursing home, this was probably the level of support she required.  I was shocked by this obvious institutional bias and by the intake worker’s lack of awareness of the Olmstead decision and Medicaid-funded community options. Two supervisors later, I was able to get someone to meet with my grandmother and her family.  After this intense advocacy, home modifications were approved for my father’s home along with personal care assistance.  This took six months after he decided to take her home.

My grandmother was discharged at age 96 and just celebrated her 98th birthday at my father’s home.  Although her dementia has gotten significantly worse, her physical health and quality of life improved more than we could ever have imagined. . So far, an increase in community supports has allowed my father to continue to support her in his home.

The very system I was helping to change to avoid unnecessary nursing facility placement initially failed for my grandmother. Despite being a professional well-educated on community-based options, I found it nearly impossible to get my own grandmother out of a nursing home. She entered a nursing home because of a lack of awareness of community options and the reality that she could no longer live alone. Once there, she stayed because most people could not imagine her living anywhere else.

I’ve specifically avoided any reference to particular providers or the state(s) in which my grandmother lived.  However, this happened despite the availability of a broad array programs and services.  I’m convinced that this could have happened in any state.  I can’t help but think of all the individuals in nursing homes who could be served at home if the nursing facility staff and community advocates knew more about the options available and took responsibility for informing individuals and their families.  People need support finding housing, locating around-the-clock services and tapping into the support available through informal networks.  The system needs to become far more flexible in order to truly help people leave nursing homes.

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