Care giving for Alzheimer’s patient is bittersweet

Sheboygan resident Susan Prater, 66, describes caring for her husband David Prater, 81, who has Alzheimer’s disease, as being on an emotional roller coaster.

A retired x-ray technician, who worked at Froedtert Hospital in Milwaukee for 29 years, David was diagnosed with dementia with a probability of Alzheimer’s disease in 2002. Susan, a retired family nurse practitioner, has been his caregiver since then.

On the plus side of care giving, “David is sweet, kind and tender and listens to me,” she said.

The downside is another story, as David’s brain function continues to deteriorate. Her voice choking with emotion, Susan said, “Having a partner I love and not being able to have the in depth conversations and relationship we used to have, can be overwhelming. I’m seeing someone I love, and I’m losing him in bits and pieces right in front of my eyes.”

Susan, a Sheboygan native, and David, a Gadsden, Ala. native, were married in 1991, in Denver. David had retired from his position with Froedtert Hospital that year and had moved to Denver, where Susan was employed at the University of Colorado Medical Center, working with medical students.

The two had met in the 1960s, while Susan was employed as a registered nurse at Froedtert Hospital (then Milwaukee County Hospital), and David was also working there.

“We re-connected in David’s retirement year,” Susan recalled. The first signs that David had contracted a form of dementia surfaced 11 years after they were married.

“David was not tracking when we watched movies,” Susan said. “He was not following the plot line.”

Then, “As time went on, his short-term memory began to lapse, and he was losing his ability to use the correct word when he was speaking,” she noted.

Susan took David to a Denver neurologist, who performed an MRI and other tests. “I wanted to rule out the possibility of a stroke or some other type of illness,” she noted. “David had had bypass surgery when he was 55.

“The diagnosis he received was dementia, with the probability of Alzheimer’s disease.”

The news was alarming. “We were devastated,” Susan admitted. “We immediately became involved with the Alzheimer’s Association in Denver and absorbed as much information as we could. That was really, really helpful.”

His neurologist prescribed Aricept for David, which he takes once each day. “That helped a lot,” Susan said.

In 2005, the couple moved to Sheboygan. At that time, Susan’s father the late George Laib also had Alzheimer’s disease. So, with two relatives diagnosed with Alzheimer’s, Susan joined the Alzheimer’s Family Caregiver Support Program. She still attends those group meetings.

Chris Jeske, CIRS-A, certified information resources specialist in aging for the Sheboygan County Aging & Disability Resource Center, facilitates the support group, which meets at 1011 N. 8th St., Sheboygan, from 6:30-8:30 p.m., the fourth Tuesday of the month, from January through November.

“The group is very helpful,” Susan said. “It informs me of strategies, coping skills and resources available for care givers.”

In 2006, a neurologist in Sheboygan whom David was seeing felt David had received an incorrect diagnosis of Alzheimer’s disease.

“So he took him off of the Aricept,” Susan said. “Within a month, he was almost non-functional and bottomed out.”

Thus, Susan took David to another physician, Dr. Tracy Hoffman, a Menomonee Falls gerontologist, who specializes in dementia.

“Dr. Hoffman is an excellent physician,” Susan said. “She put David back on Aricept and started him on an additional prescription of Namenda, which he takes twice each day.”

But since Alzheimer’s disease is a progressive illness, David’s condition continues to deteriorate, despite the medication. As a result, Susan’s caregiver responsibilities multiply accordingly.

For example, since 2006, David has been unable to drive. Susan does all the driving and fills the gas tank on the car. She makes their travel plans too.

She also makes all appointments for David and lays out his medication. She takes care of the yard work at their Sheboygan home.

“But David is still pretty self-sufficient,” she said. “He is able to dress and feed himself. He also helps with household chores.”

Susan is relying upon other valuable resources available for caregivers of Alzheimer’s patients. David attends an adult day-care program, The Gathering Place, each Tuesday and Thursday in Sheboygan Falls. An RTC van picks him up at 9 a.m. and brings him home at 4 p.m. those days.

On these two days, “I can complete some errands and tasks,” she said.

Susan noted that the John Michael Kohler Arts Center (JMKAC), Sheboygan, and the Gathering Place have received a grant to conduct programs together.

“Those who attend The Gathering Place will be visiting the JMKAC to take part in activities there,” she said.

Susan phones the Alzheimer’s Association Southeastern Wisconsin Chapter’s 24/7 help line, whenever necessary. She and David belong to the Alzheimer’s Association’s Medic Alert + Safe Return program, a 24-hour nationwide emergency response service for persons with Alzheimer’s disease.

She and David wear bracelets That contain a toll-free number to call in emergency, such as if the person with Alzheimer’s should happen to wander and become disoriented.

There is also a number on the bracelet that identifies the person wearing it to the association. “David doesn’t wander at this time, but wearing these bracelets is a safety precaution,” Susan said.

Despite the fact that David has Alzheimer’s disease, the two have remained active. “We traveled a lot during the past six months,” Susan said.

They went to Alabama twice, to Denver and to Hawaii. They also took the Amtrak to Chicago for two, 3- day weekend stays – attending concerts and visiting the Sears Tower.

Both Susan and David sing in their congregation’s choir at St. Luke United Methodist Church in Sheboygan. And they volunteer once each week, assisting the kindergarten students at Jefferson Elementary in Sheboygan.

A U.S. Army Korean War veteran, David is a member of VFW Post 9156 in Sheboygan and attends meetings regularly.

Susan’s sister and brother-in-law, Barbara and Bob Fenske, Sheboygan, attend various events with Susan and David.

“We went to see the Body Works display at the Milwaukee Public Museum earlier this year,” Susan recalled.

“When we are in a large area like that, my brother-in-law keeps an eye on David, when he uses the restroom, so David doesn’t get lost,” she said. “Otherwise, when they are not with us, I stand outside the door until he comes out.”

While Susan and David were still Denver residents, they joined three other couples who were interviewed in a TV promotional ad, sponsored by the Alzheimer’s Association. “The ad was called ‘Holding Sand,’ and it showed someone’s hands with sand falling through them,” Susan recalled.

Of course the ad symbolized the gradual loss of brain function for a person with Alzheimer’s disease. Susan’s fervent prayer is that a cure for the illness will be found in the very near future to reverse the brainfunction loss David has encountered.