A few years ago, Robert’s 89-year-old mother rolled out her home’s blueprints on the dining room table and traced her finger along the floor plan’s wall symbols.
“People are hiding in there,” Mary told her son. “They come out at night and try to get me.” By that point, Mary’s dementia-related delusions and paranoia were keeping her awake most nights. (Editor’s note: The family members’ names have been changed for this article.)
Mary would call 911 to report nonexistent strangers roaming her house. She insisted that patriotic anthems emanated from a nearby woodland. Mary stood over the stove until dawn one night, preparing a feast for imaginary house guests.
Nearly five months earlier, Robert had traveled 3,000 miles from his West Coast home to act as Mary’s temporary live-in caregiver. Now, that already difficult task was further complicated by another troubled family member who lived with Mary: Robert’s sister, Susan, who was in her 60s and suffered from schizophrenia and bipolar disorder. Schizophrenia is characterized by illogical thoughts, bizarre behavior and delusions or hallucinations such as hearing voices. People with bipolar disorder often experience extreme mood swings such as euphoria, reckless behavior and spending binges often followed by depression, sadness, feelings of worthlessness and suicidal thoughts.
Added Stress for Caregivers
His sister’s bizarre behavior and his mom’s dementia-related delusions took its toll on Robert. “You have to have somebody to help you or you’ll feel like you’re alone,” he says.
As a caregiver, Robert wasn’t alone in feeling overwhelmed. Nearly half of family caregivers (46 percent) who provide at least 21 hours of unpaid care per week report “high emotional stress,” according to a study conducted by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute.
Major depression can present symptoms similar to those of dementia, such as memory loss, withdrawal and personality changes.
Caregiving for even one person with a mental disorder is “incredibly time consuming and draining,” says Jennifer FitzPatrick, author of Cruising Through Caregiving: Reducing the Stress of Caring for Your Loved One.
‘A Lot of Anger and Frustration’
When a sibling is mentally ill, that’s one less person in the family to be a consistent, contributing member of the caregiving team, she says.
“There’s a lot of anger and frustration. Because most people who have serious mental illnesses struggle with them for a lifetime, the family has seen both good and bad times,” says FitzPatrick. Those bad times might also include suicide attempts and forced hospitalizations.
“Some people in the family may enable, while others might lean toward tough love or even estrangement,” says FitzPatrick.
A History of Mental Illness
As a teen, Susan ran off to New York City, where a taxi driver noticed her wandering disoriented on the streets and called her parents. Another time, Susan lost multiple rental cars during a cross-country manic episode. She was diagnosed with schizophrenia and bipolar disorder in her 20s.
Now, living with her mother, Susan was at her worst. She’d carved religious symbols on garage walls and slashed oil paintings with a knife. Susan blasted fans throughout the house to drown out the taunting voices in her head.
Meanwhile, Mary, who had always looked after Susan, no longer had the coping skills to fulfill that role. The result was a caregiving disaster.
“The two of them had this symbiotic relationship,” Robert says. “They needed each other, but were terrible for each other.”
The Complexity of Late Life Mental Illness
Approximately one in five adults in the U.S. experiences mental illness in a given year, and one in 25 experiences a serious mental illness that substantially interferes with major life activities, according to the National Alliance on Mental Illness (NAMI).
An estimated 20 percent of adults aged 65 and older met criteria for a mental disorder, including dementia, during a 12-month study in 2012, according to the American Psychological Association. In addition, nursing home residents can have personality disorders exacerbated by chronic health problems.
Mental disorders in the elderly can be misdiagnosed if the person isn’t evaluated by a geriatric psychiatrist, says Dr. Marc Agronin, a geriatric psychiatrist at Miami Jewish Health and author of The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders.
For example, major depression can present symptoms similar to those of dementia, such as memory loss, withdrawal and personality changes. Some forms of dementia would also be considered a psychiatric illness as well as a neurological illness, says Agronin.
“Because of that illness and the damage it causes to the brain, they often have other psychiatric conditions such as major depression, anxiety and behavioral disturbances such as agitation and psychosis,” says Agronin. “So we often see multiple psychiatric diagnoses at the same time.”
Support Groups May Help
FitzPatrick recommends seeking a support group for caregivers of persons with a mental illness, and trying to get the affected person on a treatment plan.
“Persons with dementia diagnoses like Alzheimer’s disease will decline regardless of treatment,” says FitzPatrick. “But it is possible for those with mental illnesses to improve dramatically with the right treatment.”
Local support group resources can be found through these sites:
- National Alliance on Mental Illness
- National Alliance for Caregiving
- Anxiety and Depression Association of America
- Alzheimer’s Association
Robert tried to convince his mother to move to an assisted living facility, but she refused. Due to her paranoia, Mary also refused to allow strangers to assist with in-home care.
Finally, during a hospital stay for Mary’s physical problems, Robert found an assisted living facility for his mom. Later, a court-appointed guardian placed Susan in a separate assisted living facility.
Mary’s new living situation was rough initially. She refused to socialize and blocked the door with her wheelchair, fearing that the staff might slip in at night to kill her.
Even though Robert felt some relief from his in-home caregiving duties, he also struggled with sadness and guilt, especially when it came to dismantling his mother’s home.
“If she’d passed and I had to give stuff away, that would be different,” says Robert. “Here she was, alive, and I was giving everything she cherished and accumulated away.”
A More Manageable World
In the four years that Mary has been in assisted living, she has improved immensely, says Robert. At 92, she gets up, showers, reads and interacts with the staff. His mom is now receiving the treatment she needs.
“She’s shown a lot of improvement,” says Robert. “She’s gradually gotten used to being there. She’s in a smaller world, and that’s better for her.”
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