Alzheimer's option: in home care
Burgettstown man chose to care for wife of 66 years in their home
George DeSantis of Burgettstown holds his wife, Dolores', hand. Jim McNutt/Observer-Reporter
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How do you say goodbye to someone that you've known for almost all of your life?
George DeSantis is struggling with that question, one week after he and his wife, Dolores, marked their 66th wedding anniversary on June 22.
Three days later, Dolores, 85, who battled Alzheimer's disease and other health problems for the past 20 years, passed away in their Burgettstown home, with DeSantis, 89, beside her. As he usually was.
To the end, DeSantis kept the vows he made more than six decades ago – in sickness and in health, in good times and bad.
DeSantis took care of Dolores in their home, fulfilling a promise he made to her after the couple removed Dolores' mother from a nursing home and cared for her for three years before she died.
“Dolores didn't want to go to a nursing home. People say they're amazed that I take care of her, but I don't think anything of it. I'd do anything for her,” DeSantis said in an interview at his home, days before Dolores died.
He patted her arm gently.
“Oh, you should have seen her in her younger days,” DeSantis said. “She was something. We had a good life together, and I still do love her very much.”
When Dolores' health declined and she was diagnosed with Alzheimer's, DeSantis helped her with everything, including bathing, dressing and brushing her teeth, and he cleaned the house, did laundry, cooked dinner and took her to doctor's appointments. It was exhausting work, but DeSantis did it without complaint.
However, on Christmas Day 2012, DeSantis fell and broke his hip, and Dolores was forced to go to the Donnell House in Washington while he recovered from his injury.
When they returned home, DeSantis made the decision to hire in-home care help.
Caregivers know firsthand the challenges of living with an Alzheimer's patient.
Seventy percent of people with Alzheimer's are cared for at home, said Claudine Battisti of the Alzheimer's Association. An estimated 15.2 million Americans provide nearly 22 hours of unpaid care per person per week – the equivalent of a part-time job.
For caregivers, the demands can be physically and emotionally exhausting.
“If the goal is to keep someone home for as long as possible, there are an array of services to do that,” said Lucy Seger, owner of Home Instead Senior Care offices in Washington and South Hills, which provides services ranging from house cleaning to tending to personal hygiene – virtually everything except administering medication. “We find that caregivers get overwhelmed. Sometimes, people don't know how to ask for help. Caregivers also have to take care of themselves and divide the workload so that they don't burn out.”
Seger knows what she's talking about. Her mother suffered from Alzheimer's for 15 years, and her experiences led her to open her business.
At a monthly workshop Seger hosts at Home Instead's Bethel Park office for caregivers providing care for a parent or relative with Alzheimer's, she outlined the benefits and drawbacks of in-home care.
In-home care allows the patient to stay in their home, where they often feel more comfortable and are able to maintain their usual routine.
Studies, including a recent one by Johns Hopkins School of Medicine, show that home-based care, coupled with the assistance of trained professionals and overseen by geriatric clinicians, enables Alzheimer's patients to remain at home longer, a goal of many caregivers.
Home care can be more cost-effective, depending on how much their current home costs them.
According to 2012 statistics gathered by the Alzheimer's Association, the average costs for long-term care services in the United States are: $228 per day, or $83,230 per year for a semi-private room in a nursing home; $268 per day, or $97,820 per year for a private room in a nursing home; $3,646 per month, or $43,756 per year for basic services in an assisted-living facility; $21 per hour for a home-health aide, and about $70 per day for adult day services.
“It's the more cost-effective option, up to a certain extent. It's an affordable alternative to preserve the person's ability to stay at home,” said Seger.
Home care also offers more personal care for Alzheimer's patients. A nursing home or assisted-living facility has several staff members who provide care, whereas in-home care allows for one-on-one care, Seger said. If the same caretakers keep on a schedule, it allows dementia patients to become more familiar with them so they can feel more comfortable and confident in their care.
There are drawbacks, though.
Home care offers fewer social activities. Because nursing-care facilities treat a number of Alzheimer's patients, they are better equipped to coordinate group activities and outings. Facilities often have many staff and volunteers who can lead activities including singing, crafts, games or being read to.
Also, an Alzheimer's patient receiving home-care services may not be supervised as closely as a patient in a nursing-care facility because a facility can observe residents 24 hours a day.
For those family members who provide in-home care for a loved one with Alzheimer's, experts recommend adult day care, which is offered at several Washington County locations.
Adult day centers can provide a much-needed break for the caregiver, and an opportunity to the Alzheimer's patient to be in a social setting and to participate in activities in a safe environment.
“Our goal is to keep families home with them as long as possible,” said Mary Beth Barreca, adult day center director at the Center in the Woods.
For DeSantis, in-home care helped gave him a break from the demands of caring for Dolores.
A Home Instead caregiver came for three hours each morning, six days a week, to do some household chores and help with Dolores. Another Home Instead employee came for an hour at night, and two aides from the Washington Health System visited three times a week.
He has a long-term care insurance policy that helped cover expenses.
A home health worker recently gave him a booklet on end of life, and DeSantis, who knew Dolores' health was failing rapidly, read it to help him prepare for her death.
In the week before she died, Dolores woke often during the night, so DeSantis slept on the floor beside her bed.
He knew her for 82 years, since she was 3 and he was a 6-year-old boy who brought fresh milk to her family's Cherry Valley farm, next door to his family farm.
When he returned from the service – he served in the U.S. Army, where he fought in the battle of Okinawa and was part of the invasion of the Philippines – he escorted Dolores to a graduation dance, their first date.
“She was the only gal I courted. We got married on a Tuesday, and I never strayed. We adopted our two kids, and she quit her job at Cunningham Welding and Machine Service, where she worked for 13 years, and we had a happy family life. She loved her family,” he said.
“I remember when she was a little girl and I'd see her playing in the yard. I remember seeing her in blue jeans walking with her sister to pick strawberries. I don't know of too many people who have known each other as long as we have. This is going to be hard.”