Aging Options

A Caregiver Looks Back, and Offers Six Things She Wishes She Had Known

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If you really want to know the lay of the land – the ins and outs of a place, say – the best advice is to ask someone who has spent time there. The same applies to something as challenging and deeply personal as being a family caregiver: theoretical knowledge is useless compared to the knowledge gained through experience. If you want to know about being a caregiver, ask someone who has spent plenty of time filling those crucial shoes.

A recent issue of The Guardian featured this powerful story from author Cynthia Dearborn. She recently released her memoir titled The Year My Family Unraveled available through Affirm Press. In this gripping book, Dearborn recounts how, in 2007, she was suddenly thrust into the role of serving as caregiver for her 75-year-old father. At the time, she explains, she knew little about what lay ahead. Now with the benefit of experience, Dearborn shares the insights that helped her help him

A Fumbling Start, Then Growing Confidence

“In 2007,” Dearborn writes in The Guardian, “I was suddenly plunged into the role of caregiver for my then 75-year-old father, who had vascular dementia. His short-term memory was severely impaired, as were his judgment and reasoning skills.”

As she recounts the experience, Dearborn was clueless from the start. “At the outset, I knew very little about dementia and next to nothing about caregiving,” she writes, “and fumbled my way through one challenge after another. With experience, I grew more competent and confident.”

Acknowledging that everyone’s situation is different, Dearborn offers what she calls “six insights that helped me help my father.” We think these are powerful, and worth passing along.

Insight #1: Most People Don’t Really Understand Dementia

With so much written about dementia, we were intrigued by Dearborn’s observation that people who haven’t experienced it “up close and personal” in the life of a loved one really don’t get it.

“My stepmother never could understand, or accept, that there were things her husband could no longer do,” says the author. “She’d get frustrated and angry with him for forgetting things and misplacing items. When she fell gravely ill, her son was upset that my father expressed no sympathy, though my father lacked the cognitive capacity to grasp that his wife was sick. To my dismay, this misunderstanding led to a major family rift.”

Dearborn also expresses surprise that even health workers have only a little understanding of dementia. “A geriatric-psych nurse informed me that my father would be discharged from the hospital back to his house, where his wife could look after him – when his wife no longer lived there,” Dearborn recounts. “The nurse had taken my father’s words at face value, though his version of reality was unreliable and out of date.”

She calls that “a turning point.” That was when she knew “[I] had to become not just my father’s caregiver but his care advocate.”

Insight #2: Set Achievable Goals

Many caregivers seem to attempt to do too much, so Dearborn advises us all to scale back expectations. “My father had no awareness that he had dementia,” she writes, “and adamantly refused my attempts to help him. I hired an eldercare manager to help me figure out a way around this. When I told her I wanted to keep him safe, she said that was impossible: I could only try to keep him safer.”

According to Dearborn, that “small grammatical shift” from “safe” to “safer” was a huge help to her. “It changed my task from impossible to doable,” she says. “I came to terms with the fact that I couldn’t work miracles, but I could try to make the conditions of my dad’s daily life less dangerous, less frightening, more comfortable, more enjoyable.”

Insight #3: Communicate with Kindness

This insight often seems to come down to small, considerate gestures. “My dad would startle if I came up behind him and started to speak,” Dearborn recalls. “It was better to face him and say ‘Dad!’ to get his attention first. No long speeches, no convoluted questions; I had to speak in small, simple chunks and give him time to respond.”

Dearborn remembers that her father was very sensitive to her tone of voice. “If I sounded stern, impatient, or critical, he became anxious,” she says. “Speaking to him calmly helped him stay calm. I tried to give him as much choice as I could in daily, domestic matters, but choices often overwhelmed him. So I’d keep it simple: black olives or green? If he hesitated or began to fret, I’d offer to decide for him, an option he often took.”

Insight #4: Distraction Can be Useful

We’ve heard this advice from other caregivers for those with dementia. “My father was prone to abrupt mood swings; he could be lighthearted one moment and morose the next,” says Dearborn. “He tended to ruminate, to get stuck in a mental groove about one of his habitual worries (like whether his taxes had been paid). I found that I could sometimes distract and reorient him if I caught it early, by introducing something amusing or fun that would catch his attention.”

In Dearborn’s case, since poetry was a source of joy for her father, she might ask, “How about a poem?” But music, or a photo, or just about anything can create that necessary distraction and help put your loved one in a happier frame of mind.

Insight #5: Expect Others to Judge or Criticize Your Caregiving Choices

The harsh words from others, even strangers, can add to a caregiver’s pain. “A taxi driver who I spoke to about my attempts to get my dad into care immediately went on a rant,” Dearborn relates, “saying, ‘Old people should be cared for by family!’ I explained that my dad had nobody to help him but me, and I lived overseas. The driver berated me for mistreating my dad.”

Dearborn’s response was measured and mature. “I realized that strangers would judge me without trying to understand my family situation,” she writes. “It was infinitely more painful, though, when my own father, in a state of agitation, told me that I was his only problem.” It seems clear that part of being a caregiver means growing a thick skin.

Insight #6: People Need Quality Dementia Care, and Caregivers Need Support

Dearborn writes that the availability of good dementia care depends entirely too much on one’s financial resources. “In seeking out dementia care for my dad,” she says, “I must have toured a dozen different care facilities. The variations were striking, and heartbreaking. How much living space the residents had, how much privacy, what activities were available, how they were spoken to, how they were treated.”

As Dearborn recounts, even though she found excellent care at a few under-funded facilities (and sometimes vice versa), “too often money bought comfort. Dignity was on offer – for a fee. I witnessed first-hand people living (and working) in disgraceful conditions. All people living with dementia deserve quality care.” And, she adds, those involved in caring for someone with dementia need ongoing support, including respite.

“In my case,” she says, “it was essential to take breaks from my father’s company, given his endlessly repetitive conversation, as well as the emotional toll of watching his cognitive decline. Just an hour or two spent on my own or with a friend could do wonders to refresh my flagging mental state. In fact, if I had to do it all again, the one thing I would do differently is take better care of myself. I was so focused on my father’s care that I badly neglected my own.” We know that caregiver self-neglect is a sad side-effect of caring for a loved one.

In the end, Dearborn offers a balanced assessment of her experience. “Looking after someone whose mind no longer functions as it once did can be rewarding – my father and I shared plenty of tender moments of connection. It can also be enormously challenging – practically, emotionally, financially, legally. Addressing these challenges on a broader scale will require the political will, and a groundswell of public support, for the funding of quality dementia research, education, prevention, and care.”

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(originally reported at

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