Jacqueline Marcell spent a year frustrated with misinformation.
She was caring for her parents, who were both exhibiting signs of Alzheimer's, a debilitating disease that gradually steals a person's memory and brain function.
“When I finally solved it medically, behaviorally, socially, legally, financially and emotionally, I said, ‘Oh my gosh, why didn't any of these health care professionals I've come in contact with this whole year direct me properly?' I finally solved it by calling the Alzheimer's Association,” she said.
Marcell recently visited Oklahoma City to discuss her book, “Elder Rage, or Take My Father ... Please! How To Survive Caring For Aging Parents.” She answered questions about the lessons she learned from caring for her parents.
Why was it difficult to recognize Alzheimer's in your parents?
Marcell took care of her parents at home during the first year. During that time, she didn't know what the warning signs of Alzheimer's were, she said. Once she called the Alzheimer's Association, they shared with her the early warning signs.
Those include suffering from memory loss that disrupts daily life, challenges in planning and solving problems, confusion with time and place, difficulty completing familiar tasks at home and withdrawal from work or social activities.
“Nobody had shown me that before, and I was just chalking up all the odd behaviors they were doing to old age and stress and had no idea it could also be the beginning of some type of dementia in them, namely Alzheimer's,” she said.
Like many first-time caregivers, Marcell didn't have experience in caring for older people. Many adult children who serve as caregivers start out without much knowledge about the best care for their ailing parents, she said. For example, she quickly learned about the Alzheimer's Association's 24/7 helpline, available at (800) 272-3900.
“There's a strong learning curve, and you don't even realize that there are the amount of resources out there like the Alzheimer's Association and specialists in all forms of dementia,” she said.
What steps did you take to ensure quality medical care for your parents?
Marcell found doctors who were knowledgeable about Alzheimer's. It can be helpful and ensure better care when you find your family member a neurologist who specializes in dementia, and a geriatrician, a doctor trained in treating people 65 or older, especially if that doctor has experience in diagnosing dementia.
“General practitioners are not trained in early diagnosis and treatment, and just kept sending me home saying, ‘Well, they seem normal to us for their ages,'” she said.
Once Marcell found doctors knowledgeable about dementia, doctors ran blood, brain and memory tests. There is no known cure for Alzheimer's and no single test that can prove whether someone has Alzheimer's. However, through a medical evaluation that involves some testing, doctors can almost always determine whether a person has dementia, according to the Alzheimer's Association.
Once the doctors performed the tests, they were able to rule out reversible dementias, like a folate or B12 deficiency or a thyroid problem. Marcell then worked with doctors to get her parents on proper medications, which helped keep them cognitively aware longer.
What's the hardest part for an adult child caring for his or her parents?
The emotional toll of caregiving can be the hardest part, she said.
“It's not a sprint — you've got to prepare for a marathon,” she said. “Caregiving typically takes a long time, and it's not a straight line. There are so many twists and turns in trying to manage.”
No one likes change, and caregiving requires flexibility and support, she said.
Marcell recommends asking family and friends what they are capable of helping with. Also, it can be helpful for caregivers' mental states to find support groups. Additionally, it's important for caregivers to take care of themselves. They put themselves at risk if they don't get help, she said.
“It's not something you can handle by yourself, and as strong as you think you are, you've got to put yourself first so that you don't get sick,” she said. “So many caregivers get sick because they don't put themselves first and are just so stressed with the care.”