While other retired couples look forward to spending time together, Steve Inlow spends much of his time managing medications, doctor appointments and day-to-day activities for his wife. Inlow cares for his wife who has Alzheimer’s.
The Dahlonega man is not alone. More than 495,000 people are the primary caregivers to loved ones suffering from Alzheimer’s disease or other forms of dementia in Georgia, according to a 2013 report from the Alzheimer’s Association.
“It’s a cruel disease,” Inlow said. “It’s hard to compare to anything else, but this is a pretty tough situation, especially when she is less and less communicative with me.
“She wants to be heard but sometimes when she’s heard and you don’t understand what she’s saying; she feels bad or even mad.”
Alzheimer’s disease is the most common type of dementia and causes a variety of symptoms including gradual memory loss, impairment of judgment, disorientation, personality change, difficulty in learning and loss of language skills. The disease worsens as it progresses.
In the final stages, individuals lose the ability to respond to their environment, carry on a conversation and control essential movement such as swallowing. It eventually leads to death.
Inlow’s wife, like many people with Alzheimer’s, denies she has the disease. She frequently becomes upset or angry when she has to face her own limitations.
Inlow cleans, cooks, goes grocery shopping and washes the clothes, while caring for his wife who needs regular supervision. He also deals with the side effects of the disease such as a personality changes.
“She was never argumentative before,” he said. “In 36 years of marriage, she’s only argued two or three times; she was that calm.”
“Now, on the bad days, I usually get blamed for a lot of things; nothing in particular. In a way, I believe she is taking it away from her real situation and putting it on someone else.”
Inlow plans to care for his 61-year-old wife at home as long as he can provide the proper care, but not everyone is able to do that.
Luckily some facilities provide respite care during the day for dementia patients, fulfilling the demand for a middle ground between at-home care and full-time clinical care without the high cost of an in-house medical professional.
“The financial toll, the emotional toll and the toll on the health of caregivers is tremendous,” said Dana Chapman, executive director of the nonprofit respite care facility The Guest House. “A lot of caregivers have to take days off from work. Some people take unpaid leave and lose their own health insurance, which has a huge ripple effect through the whole family.”
At The Guest House, clients can stay anytime between 7:30 a.m. and 5 p.m. on weekdays. During the day a nursing and administrative staff care for the clients at all times.
The daytime visitors participate in several activities, many of which are designed to promote memory function, such as woodworking, games and music.
An estimated 5.2 million Americans have Alzheimer’s disease, most of whom are older than 65.
According to the Centers for Disease Control and Prevention, Alzheimer’s disease is one of the top leading causes of death in the United States with more than 83,000 deaths attributed to it in 2010.
No cure exists for Alzheimer’s patients, which is a fact especially demoralizing for the person with the disease and their caregivers.
“It’s not a question of if it’s going to get worse, but how bad and when,” Chapman said. “With all that regression, every day and night, I think caregivers just lose themselves and they get depressed because it’s only getting worse.”
Further complicating matters, many people with Alzheimer’s are embarrassed by their disease and feel cut off from the rest of the world.
According to Alzheimer’s Disease International, 24 percent of people with dementia try to conceal their diagnosis, 40 percent felt excluded from everyday life, and 60 percent said friends and family members began to avoid or lost contact with them after diagnosis.
Caregivers feel this effect, too; 24 percent of them believe there are negative associations about being an Alzheimer’s caregiver and 28 percent feel people avoid them or treat them differently.
The demands of caregiving for dementia patients can lead to a loss of physical health or emotional well-being, an increase in stress and the loss of job opportunities.
However, not every day is difficult one for caregivers such as Inlow. Some days are quite enjoyable, he said.
“On the good days, we’ll go to a movie or go out to eat,” he said. “Everything is nice and pleasant. There is no issue with arguments, and we are able to just relax more.
“Some days, she likes to walk around the yard or walk our dog, until she’s tired. Then we’ll lay down for a while until she falls asleep.”