More Family Caregivers Assisting Those With Long-Term Physical Problems, Memory Issues

"We were just feeling our way,” Johnson recalls. “The neurologist comes in the room and says, ‘You've got Alzheimer's, and here are a few pamphlets,’ and you're on your own."

Johnson owned a physical therapy business, with three clinics, and both he and his wife were physical therapists. But with Nancy's illness, he had to cut back his work, hour by hour. Finally, in March 2019, he sold his company to a larger firm, although he has continued to do some physical therapy work, now interrupted by COVID-19 restrictions.

He estimates that his and his wife's revenue has been reduced by close to $1 million because of Alzheimer's, adding that they are fortunate to have sufficient savings.

That's in contrast to the 45 percent of caregivers in the AARP report who said they had experienced at least one financial impact, including taking on more debt and leaving some bills unpaid.

Early on in her illness, Nancy Johnson read books to schoolchildren and was interviewed about Alzheimer's on NBC's Today Show. But she has deteriorated over the years, and Joel has hired a part-time caregiver. She gets confused when the couple go to their cabin, close to the crest of the nearby Cascade Mountains. She can't keep straight the names of their two 32-year-old twin sons and frequently repeats the same story over and over.

Joel Johnson reports that his physical condition has worsened. He used to work out at the gym three days a week. “I had to cut way back because I had to be at home,” he said. That also means less time hiking in the woods and the nearby Cascades foothills.

"She never leaves my mind,” he said.

Multiple health problems

The report found that care recipients now have 1.7 conditions, up from 1.5 percent in 2015, reflecting the increased complexity of their health problems. They include:

• "Old Age” — 16 percent
• Mobility issues — 12 percent
• Alzheimer's, dementia — 11 percent
• Surgery, wounds — 6 percent
• Cancer — 6 percent
• Mental/emotional illness — 5 percent
• Back problems — 5 percent
• Stroke — 5 percent
• Diabetes — 4 percent
• Heart disease — 4 percent

Jeanne Wintz of Seattle, 72, can attest to the challenges of looking after a relative with multiple health conditions. She is the caregiver for her husband, 89, who suffers from dementia as well as congestive heart failure and kidney problems.

Wintz's life has grown more difficult as her husband's condition has worsened. While he retains his pleasant mood, his innate sense of responsibility can sometimes make him agitated.

Years ago they paid a housekeeper to clean their former home. Now they live in an independent living facility, where a housekeeper comes once a week to vacuum their unit and change the sheets. Her husband gets upset, thinking he needs to pay her.

Recently, Wintz stepped away to get coffee on another floor while the housekeeper worked, only to learn that her husband had scrambled downstairs with his walker to the lobby, looking for an ATM to get cash for payment. “I just can't leave him alone,” she said. “Anything can happen.”

Rising stress

Along with the demands of the physical care — dressing, bathing, medication management — nearly 4 in 10 caregivers describe feeling high levels of emotional stress. And 21 percent feel alone, a number that rises to 32 percent among those who have been caregivers for five years or more.

Johnson said he had depression as he cared for his wife, an experience new to him.

"It's one of those things that creeps up on you,” he said. He sought out counseling and also has received help from other caregivers in his Alzheimer's Foundation support group.

And on days when his hired caregiver can stay with his wife, Johnson gets a break by helping his sons with projects, such as building a fence for a play gym for his granddaughters.