In the summer of 2012 my father-in-law telephoned with some surprising news: His wife of 55 years suddenly did not recognize him. She had recently been diagnosed with early stage dementia, but her symptoms had not yet been this severe. Over the phone, my wife and I eventually convinced my mother-in-law that her husband was not an impostor.
As a geriatric psychiatrist, I understood the devastating toll dementia could take on a family. But on a personal level, I was worried about my father-in-law, my wife, her siblings and myself. We would be my mother-in-law’s caregivers for the rest of her life. She was 76; my father-in-law was 79.
Over the next few months, my mother-in-law’s most difficult symptoms briefly appeared and then disappeared. Eventually my father-in-law discouraged her from driving and cooking, so she wouldn’t accidentally hurt herself. She knew she had dementia and agreed to meet with a nurse care manager and a psychiatrist. But she also had episodes where she’d feel persecuted and frightened.
One day she turned to me, hostile in a way she’d never been, and told me: “You’ve changed, and I’m very disappointed. It’s time for you to leave.” A few minutes later, she’d forgotten about it and was happy to have me stay.
This went on for weeks. One morning my mother-in-law was struck with severe terror. Believing her husband to be an intruder, she ran from the house to the house of a neighbor, who did not understand the situation and called the police.
The neighbor telephoned us, and we called the nurse care manager, who happened to be planning a visit to their home that morning. The officer and the nurse arrived at the same time. The police officer decided my mother-in-law should be taken to a hospital.
The nurse accompanied my mother-in-law to the emergency room, where she was given tests to determine if any new medical issue might be the cause. Nothing abnormal was found. It also became clear that my mother-in-law did not remember the morning’s events.
At this point our family was forced to face what we’d been wrestling with for months: Hospitalizing my mother-in-law seemed like the next step. She understood. “I have a memory problem,” she said. “I’m going to get help.”
My mother-in-law’s move to a hospital felt to me like a failure. And I was torn between my belief, as a psychiatrist, that her symptoms were not so severe and my belief, as a son-in-law, that our family could not handle any more stress.
My mother-in-law was more confused in the hospital than she had been at home. She started on a ward with psychiatric patients of all ages, then was transferred to a smaller unit of mostly dementia or schizophrenia patients.
She had no problems recognizing her husband. She relished his visits. They would sit side by side, holding hands, while she confided in him her worries about what was happening around her, telling him she loved him. It seemed as if they were sitting on the porch together again.
A change in her medications appeared to be helping. Medication treatment for dementia is complicated, at best. With no drugs approved specifically for the symptoms of dementia, medications for other conditions, such as depression or schizophrenia, are used off-label, with frequent side effects such as restlessness and sedation. We tried several before finding something that seemed to help, at least a little.
A big decision
After a couple of weeks, the family began to worry that hospitalization had only temporarily solved the problem and wondered what we’d do when she came back home. She’d need someone around to guide her, and the job was too much for my father-in-law alone. We decided for my mother-in-law’s sake to move her to a “memory care” assisted living setting. This left my father-in-law at home alone for the first time in his life. At this point, I wasn’t sure which of my wife’s parents worried me more.
At the hospital where I care for patients with dementia, I watch these kinds of difficult decisions all the time. But in that moment, being on the inside, it became clear that treatment for the patient with dementia is just one facet of good care. Dementia also takes a toll on the family caregivers.
There are treatments and practices available that could help patients with dementia and their caregivers, including support programs that aim to keep families together at home and to reduce caregivers’ burden and depression. Sadly, access to family-based solutions remains limited.
For the patient, dementia is a terminal illness. For the caregiver, it shouldn’t be.
Caregiving for a person with dementia is a risk factor for homicide and suicide, studies show. Family caregivers’ rate of depression is two to three times that of other people – another risk factor for suicide.
A short-term plan is needed, with more attention to families. We need care for the caregivers to be integrated into care for the patients. When my mother-in-law was in the hospital, I was disappointed (but not surprised) that nobody stopped to ask my wife, or anyone in the family: “How are you doing?”
Evidence shows that support programs prevent depression in family caregivers and extend the time a person with dementia is able to live at home. Yet services such as these are still hard to find.
‘She loves me’
Moving my mother-in-law to assisted living made my father-in-law worse. After decades of companionship, he now was alone. Each day included a burdensome drive to visit his wife. He became depressed. We helped my father-in-law look at every option for how he could adjust his life to adapt to my mother-in-law’s gradual decline, but nothing could soothe the distress he felt with losing his wife in his daily life.
After a few months, he moved to an apartment in the same facility as her dementia care unit. Now he can see her every day, like it’s always been. When he takes her “out to dinner” in the main dining hall, or when they visit together in her room, he has trouble understanding everything she talks about. But, he says, “she seems to enjoy it . . . and she keeps telling me she loves me.”