When my mother finally stopped believing the TV was watching her

This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.

I am a 47-year-old woman in suburban Boston, and for the last four years I have been the primary caregiver for my mother, who developed a paranoid psychosis at the age of 68. I want to write this from the daughter's seat, because most of what I read about late-onset psychosis was written either for clinicians or for the patient. The caregiver's experience — the slow watching, the bedsheet on the television, the morning the sheet came off — gets less attention than it should.

The first signs

My mother was a high school librarian for thirty-five years. She retired at 65 and was, for the first three years of retirement, busy and curious and sharp. The first sign that something was wrong came in the form of small comments. She told me, one afternoon, that the new neighbor across the street had been "looking in." A few months later, she said the cashier at her grocery store knew things about her she had never said out loud. By the next year she was telling me, very seriously, that the people on the evening news were sending her messages and that the television in the living room was watching her when she was not in the room.

I was 43. I had a teenager, a job, a husband, and no idea what I was looking at. I called her primary care doctor, who suggested an evaluation. The first geriatric psychiatrist we saw used the term late-onset schizophrenia. The diagnosis was eventually adjusted to a paraphrenia-type presentation — see our piece on paraphrenia — but the experience for my mother and for our family was the same regardless of the label: a brilliant woman, cognitively intact in most ways, who was certain her television was a person.

The bedsheet

The bedsheet started about six months after the diagnosis. Every night, before bed, my mother would walk into the living room and drape a queen-sized sheet over the television. In the morning she would take it off. If we visited and the sheet was on during the day, she would ask us to leave it.

I cannot describe how this small, quiet ritual broke my heart. The sheet was the most concrete artifact of the illness. It was the size of the delusion. It was the daily evidence that my mother — who had taught me to read — believed something that was not true and was trying, in the most gentle way she could, to protect herself from it.

Over the next three years, we tried five different medications. The first two had side effects she could not tolerate. The third helped a little. The fourth made her dizzy and she fell. The fifth was risperidone — see our risperidone overview — which her geriatric psychiatrist titrated very slowly, in keeping with the principles described in our piece on antipsychotics in older adults. Older adults are generally started on lower doses because they are more sensitive to side effects, including falls, sedation, and metabolic changes.

The slow change

The risperidone did not produce a sudden recovery. The bedsheet did not come off in a week. What happened, over months, was that the delusion shrank. First, my mother stopped commenting on the news anchors. Then she stopped looking sideways at the television during the day. Then, one afternoon when I visited, she said, "I do not think it actually watches me. I just feel safer with the sheet." That was a sentence I had not imagined I would ever hear. The certainty had cracked.

About eight months into the right dose of risperidone — for her, a fairly low one — I came over for breakfast on a Tuesday in October. My mother was at the kitchen table with her coffee. She said, "I went into the living room this morning and the sheet was still on. Could you take it down? I would like to watch the news."

I walked into the living room and folded the sheet. I put it in the linen closet. I came back to the kitchen and my mother was buttering a piece of toast. We did not make a big deal out of it. We watched the news together. She made a comment about the weather. The television was just a television. The morning was just a morning. I cried later, in my car.

What I learned about caring for a parent through this

Late-onset is its own thing

Late-onset psychosis in older adults is not the same as the classic adolescent or young-adult onset of schizophrenia. The cognitive picture is different. The medication response is different. The prognosis with treatment is, in many cases, more favorable than the family fears at the start. A geriatric psychiatrist familiar with this population was the single most important professional we found.

You cannot argue someone out of a delusion

I tried, in the first year. I took the sheet off the television. I showed her that nothing happened. I said, "Mom, the TV cannot see you." She would look at me with patience and pity, as if I were the one who did not understand. The arguing destroyed our relationship for about six months. I stopped. Our therapist taught me the LEAP framework — Listen, Empathize, Agree, Partner — described in the work of Dr. Xavier Amador. After I stopped arguing, my mother started letting me come over more often. The delusion did not go away because I argued; it went away because the medication shrank it.

Caregivers need their own support

I went to a NAMI Family-to-Family group during my mother's second year. See our piece on Family-to-Family. It saved my marriage. It probably saved my own mental health. The other people in that room had been where I was. Some had been there for ten years. They knew the bedsheets and the locked refrigerators and the quiet shame of being a daughter who could not fix her own mother. I was less alone after the first session.

Small wins matter

Long before the bedsheet came off, there were smaller wins. My mother started returning my calls again. She agreed to come to a family dinner. She took her medication without me having to remind her every day. Each one of these felt, at the time, like trivial victories that did not change the big picture. In retrospect they were the big picture.

Where we are now

My mother is 72. She still takes a low dose of risperidone every night. She has a good geriatric psychiatrist who sees her every two months. She lives in her own home. She watches the news every morning. The television is no longer a person to her. She knows she had a "rough patch," as she calls it, and she has, in her own quiet way, made her peace with the fact that she will probably need medication for the rest of her life.

I keep the folded bedsheet in the linen closet. I do not know why. Maybe because it reminds me how far we came.

What I would say to another adult child caring for a parent

• Find a geriatric psychiatrist. The expertise difference is real.
• Stop arguing with the delusion. Learn LEAP. Read Dr. Amador's I Am Not Sick, I Don't Need Help.
• Go to NAMI Family-to-Family. Twelve weeks. Free. Worth every minute.
• Track small wins on a calendar. They will not feel like wins until you can see them in a row.
• Take care of your own mental health. You will need it.
• Be patient with the medication trial process. The first three medications may not be the right ones. The right one may be the fifth.

For more, see adult child caring for parent, caring for an aging parent, and late-onset schizophrenia.

This article is for educational purposes only and is not medical advice, diagnosis, or treatment. Always consult a qualified mental health professional. If you or someone you know is in crisis, call or text 988 in the US, or your local emergency number.