Losing and building trust in assisted living homes

Last fall, my mother stopped being able to walk independently. She had multiple myeloma, and because she also had Alzheimer’s disease, she had no idea that she could no longer walk on her own. When she tried to stand up, a home health aide would lunge towards her, panicked, trying to prevent her from falling. My mother perceived the aide’s concern as an effort to control her, and it infuriated her. She so much wanted to maintain her independence.

Years before, she had mentioned a file folder with information about the assisted living home where my stepfather spent the end of his life. He had been treated exceptionally well there, and my mother had told me that she kept the information in case she ever needed that level of care. Unfortunately, she now did.

My sister and I quickly moved her to one of the assisted living organization’s small, 8-resident houses. The next morning, before I could even really exhale, I received an email: “Mom had a small fall this morning. No injury! She is doing fine.” Minutes later, the staff person explained by phone that my mother’s fall didn’t constitute a true fall, because an aide was there and broke her fall. When I visited later that day, though, the story had changed. There had been no staff person by my mother’s side.

When I sat with my mother that afternoon, she complained of back pain. The pain had become constant with the myeloma, and it was surely exacerbated by the fall. When I asked for my mother’s pain medication, the response was that they could not give it to her. There was no order for it.

That is when I started to get frustrated. I had brought her Tramadol to the house, and her pain was being managed by the same hospice organization as before the move. The hospice nurse had even visited earlier in the day. My mother had been without pain medication for over 24 hours (for the first time in weeks), and no one had let me know. I had, though, gotten an email asking me to bring over a remote control for her television.

I tried reminding myself that we had moved her in very quickly and maybe the rocky start would ease as she settled in. The problems, though, unfortunately continued.

Several days later, my daughter visited and reported that my mother was struggling to take her medication with water; apparently the staff had not read the form where I had indicated that medications should be given with apple sauce or yogurt. Ten days in, I learned that they had not given her any laxatives despite her not having had a bowel movement.

On a drive home after she had been there almost two weeks, I had a realization that was so obvious that it was embarrassing. For years I had been interviewing people to explore what built their trust in doctors and other health care providers. The assisted living home, I realized, was lacking the exact three attributes that I had found in my research builds patient trust: competence, communication, and caring. The staff had repeatedly made mistakes, they did not communicate with me, and I realized I had seen only one staff person smile or laugh since mother had arrived. As a result, I had no trust in the assisted living home.

Without trust, I needed to move my mother out. I reached out to the assisted living organization’s lead nurse, whom I did trust. We had spoken extensively during my mother’s time there, and she too was disappointed by the care my mother received. I told her that I was going to move my mother to my house. She asked me to please give another of their homes a try. She told me that the mistakes my mother had experienced are not consistent with the culture of the larger organization (which was confirmed by the hospice nurse and by my stepfather’s prior experience). She said she would make sure my mother had a good experience at the new house and would work to improve the culture at the house where my mother currently was. She promised that they would communicate with me so much that I would get sick of hearing from them.

We decided to give a different home a try and, remarkably, they were able to rebuild our trust. When I first visited I sat down with the house manager and explained my mother’s desire for agency. She listened. And she described having worked with many similar residents. Once my mother moved in, I received multiple daily emails with updates and photos, and I did quickly get sick of so much communication. On my visits, there was laughter. One week the house manager told me that my mother, instead of eating her green beans, put them in her water glass. I explained that my mother never really did like vegetables.

The next week, my mother fell into a deep sleep. The house manager told me that green beans had been served again the day before. She said that to humor my mother, she threw a couple green beans onto the floor, and my mother smiled.

My mother never woke up. I will forever be appreciative of the house manager giving my mother a final moment of happiness.

Jessica Greene is a Professor and the Luciano Chair of Health Care Policy at the Marxe School of Public and International Affairs, Baruch College, City University of New York. Her research focuses on patients’ interactions with the health care system, from what builds patient trust in health care institutions to patient awareness of state Medicaid policies. Her mother, Stefanie Greene, died December 16, 2020.