Being A Caregiver For My Father Who Had Dementia, What I Wish I Had Known
Cynthia Dearborn was unexpectedly put in the uncomfortable position of caring for her aging father, Russell Dearborn. What made the situation even more complex was her 75-year-old father had vascular dementia but did not realize he had the progressive condition.
It all began in 2007 when Cynthia was thrust into caregiving, “knowing very little about dementia and almost nothing about providing care.” What further complicated matters was Cynthia lived in Sydney, Australia, and her father lived in Seattle, Washington. And, if that wasn’t enough, Cynthia’s stepmother was also ill and could not care for Cynthia’s father.
Cynthia said she struggled through each hurdle she faced. Now, two decades later, she chronicled her caregiving journey in a memoir, The Year My Family Unraveled. Also, in an article for The Guardian, Cynthia shared six insights that she gained that helped her during her caregiving experience:
1. Many people lack a practical understanding of dementia
While there is a greater awareness of dementia, there is still a stigma attached to the progressive neurodegenerative condition, and even family and friends lack the “knowledge to cope with the challenges of the disease,” according to the World Alzheimer Report 2019: Attitudes to dementia.” What’s even more surprising, the report found that many healthcare providers worldwide think that dementia is a normal part of aging.
Cynthia recalled the inability of her stepmother to understand her father’s limitations, and she would get upset with him for losing and forgetting things. Her stepmother’s son also did not understand Russell’s limitations. In her article, Cynthia recounted the time when her stepmother became gravely ill and her father lacked the mental capacity to understand that she was seriously ill or show concern about her condition. This outraged her stepmother’s son and caused a major rift in the family, Cynthia said.
What surprised Cynthia even more was that some healthcare workers had little understanding of dementia. In one instance, Russell was in the hospital and he told a geriatric-psychiatric nurse that his wife would care for him once he returned home. In reality, Cynthia said his wife no longer lived at the house. Cynthia described this moment as a “turning point” because she realized that she “had to become not just my father’s caregiver but his care advocate.”
2. Set achievable goals
No matter what she did or how hard she tried, Cynthia said her father “adamantly refused her help.” So, Cynthia hired an eldercare manager to assist her in developing plans and coordinating care for her father. The manager helped her to change her perspective about her goal of keeping her father safe.
“When I told her I wanted to keep him safe, she said that was impossible: I could only try to keep him safer,” Cynthia wrote in The Guardian article. “That small grammatical shift helped me hugely: it changed my task from impossible to doable. 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.”
3. Communicate Kindly
Like many family members dealing with a loved one with dementia, Cynthia had to learn how to communicate with her father. Caregivers and eldercare experts say there are “dos and don’ts” when helping a parent with dementia, such as not asking questions repeatedly, avoiding arguments, and not yelling or raising your voice. The key is to keep communication simple.
Cynthia said her father became very sensitive to her tone. “If I sounded stern, impatient or critical, he became anxious.” So, she developed a calmer tone and discovered that “speaking to him calmly helped him to stay calm.”
Cynthia also avoided asking opened-ended questions that required choices to make, because this often left Russell overwhelmed. “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.”
4. Learn to create distractions
People with dementia may experience mood swings, and eldercare experts recommend that caregivers develop distraction techniques and use them to calm situations. Cynthia said her father had abrupt mood swings; one minute he was lighthearted, the next minute he was morose. So, she learned a distraction technique.
“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. ‘What’s this?’ I’d ask, pointing to a nearby object. Or ‘How about a poem?’— because reciting poetry was his joy,” Cynthia wrote.
5. You may be shamed or judged for your caregiving choices
Caregivers can expect to receive criticism from family, friends, and strangers, as well, over the way they are caring for a parent or a spouse with dementia. And, the critics are usually not helping with care.
Cynthia knew this all too well. One time, Cynthia said she was talking to a taxi driver about trying to get her father into a care facility because she lived in another country and he had no one to look after him. The driver went on a rant because he believed family members should care for older adults.
As the driver berated her, Cynthia said she realized that “strangers would judge me without trying to understand my situation.” What hurt her even worse, was a heartbreaking comment from her father. Cynthia wrote: “It was infinitely more painful, though, when my own father, in a state of agitation, told me that I was his only problem.”
6. People from all walks of life need quality dementia care, and caregivers need support
Cynthia’s experience of looking for a care facility for her father was a real eye-opener. “The variations were striking and heartbreaking,” she wrote. She saw how residents were treated, how they were spoken to, and what activities were available. She saw where “some underfunded facilities provided excellent care” while “some well-funded facilities did not.” Sadly, she also “witnessed first-hand people living (and working) in disgraceful conditions.”
Cynthia needed the support from a care facility because it took an emotional toll on her over time. Cynthia noted that if there was one thing that she would do differently, it would be to take better care of herself.
“I was so focused on my father’s care that I badly neglected my own,” she wrote. But, despite the enormous challenges, there were “tender moments of connection” during the caregiving journey, Cynthia said.
Tackling the ongoing issues of providing quality care for people with dementia and support for caregivers will take a unified effort. According to Cynthia, these challenges will require the “political will, and a groundswell of public support, for the funding of quality dementia researcher education, prevention, and care.”