Difficulty swallowing, which is clinically known as dysphagia, is a condition that often accompanies many kinds of dementia as well as other health issues associated with aging. Dysphagia is responsible for many pneumonia deaths due to a person aspirating food into his or her lungs.
Koko Kawasaki, a former graphic designer, was inspired to earn her MA in Gerontology by her experiences as a caregiver whose father suffered from multiple health issues including dysphagia. I asked Koko to tell us her personal caregiving story.
I was a family caregiver for my dad who had multiple health conditions including stroke and vascular dementia. I knew little about caregiving but did the best I could to care for him. Dad and I were very close, but he became angry and demanding when his health began to decline. Back then, I did not realize that many of Dad’s behaviors, such as his inappropriate temper tantrums, were due to the effects of dementia.
My family and I initially cared for him at home with the assistance of part-time home-care aides. As his dementia conditions worsened, he and my mom fought constantly. This affected Mom’s health, where she was becoming obese (4’9”, 135+ lbs!), developing dangerously high blood pressure levels, and experiencing fainting spells.
Mom also had osteoarthritis in her knees, which caused tremendous pain when she walked. She postponed her knee-replacement surgery for many years because Dad needed her. After a series of events that placed both my parents in danger, we made the painfully difficult decision to place Dad in a long-term care facility.
Though far from being ideal, having Dad in the care facility turned out to be a better situation than we initially expected. The place we chose was family owned, had a Japanese-speaking social worker (Dad used to understand and speak English, but he reverted to his native Japanese language as his dementia progressed), and a warm, caring staff. Dad’s health improved, and my parents’ relationship became more amicable. Nevertheless, I became more attentive and visited every day to make sure Dad was safe and well cared for.
During his stay in the care facility, Dad suffered more strokes. Combined with his dementia, he was beginning to have problems with eating, drinking and speaking. Although I did not fully understand his medical condition, I later learned that he had developed both dysphagia and dysarthria, which is a condition that affects speech production.
I visited Dad nearly every day to spend time with him and to feed him at dinnertime, as he could not feed himself. It was an opportunity to care for Dad, and it provided relief to the staff who had many people to feed. They often had to be quick and efficient, while minding the varied needs of the elderly residents.
Being fed under time constraints can be a challenge for people like Dad who had difficulties in swallowing food and beverages and had to take small bites and sips. With dysphagia, Dad had to have a pureed diet. He eventually could not swallow liquids without choking, so thickeners were added to water, juice, and coffee. Luckily, he could still enjoy ice cream for dessert!
Read Koko's tips on managing swallowing problems in Part 2: