Long-term care for Alzheimer’s available in county

Once the probable diagnosis of Alzheimer’s is determined by a physician, family members may have to decide when to take over the care and where the loved one should live to best meet his or her needs.

Options include the home, a family member’s home, an assisted-living facility, a residential care home, a nursing home or an Alzheimer’s care unit.

“It’s a disease that needs around-the-clock care,” said Alyssa Unruh, unit supervisor in the Alzheimer’s care unit at Bethesda Home in Goessel.

Alzheimer’s disease is an illness that affects the way the brain works. The damage occurs when cells are lost and nerves are damaged, and it causes general deterioration of mental ability.

Knowing when to take over is often a troublesome decision, according to the book “The 36-Hour Day,” by Nancy Mace and Peter Rabins.

“It can also be painful to take away those outward symbols of a person’s independence,” the authors said.

Unruh agrees that families often struggle as they try to help their loved ones.

“One thing I speak to families about is to feel very good about the years, the chapters of the life they have had with that person this far, and for the care that they gave them-and not feel guilty about them needing more care,” Unruh said.

Mace and Rabins list several key issues in deciding when to assume decision making for a loved one:

— when a person can no longer manage his own money;

— when she can no longer drive safely;

— when he can no longer live alone-he is confused and has marked personality changes; his conversations become increasingly vague; he forgets to take medications and eat meals; and he wanders, becomes paranoid, or is unkempt.”

Noreen Weems, director of the Marion County Department for the Elderly, said: “As a dementia progresses, it interferes with the person’s ability to care for himself. He eventually becomes totally dependent on caregivers.”

Many in the beginning stages of the disease can function in their homes with outside help. In these cases, family members may be able to help in the home. Others may take the loved one into their home and take over as the primary care giver.

“Families and friends provide 75 percent of home care for people with the disease,” according to the Alzheimer’s Association Sunflower Chapter in Wichita.

“But Alzheimer’s can be more devastating to the family trying to provide that kind of care than it is to the patient,” said Charles Stark, owner of Comfort Care Homes, a residential care home in Wichita.

Another alternative is to hire a 24-hour-a-day caregiver to live in the home.

“It’s extremely difficult to find somebody, especially in a small town to do that,” said Geraldine Hett, program director at New Life Development Center at Hillsboro Community Medical Center. “And the cost of it is mostly impossible for the average person.”

Family members may find the cost of a care facility may also be prohibitive. The average cost per patient for nursing home care is $42,000 per year, but can exceed to $70,000 in some parts of the country, according to the Administration on Aging.

Neither Medicare nor most private health insurance covers the cost of the long-term care most individuals with Alzheimer’s need, reported the Sunflower Chapter.

When it is financially feasible to find a long-term facility to take over the care, it is helpful to prepare in advance by locating the facilities in the area and preparing questions and concerns to present during the initial interview.

The following advice was prepared by the Administration on Aging:

— Ask the care provider if the care staff is continually trained on dementia-care issues, what kind of programs are offered for people with Alzheimer’s, how individual care plans are developed and how different levels of functioning are supported.

— Give examples of behaviors or challenges to find out ways difficult situations might be handled.

— Spend time in a variety of facilities observing what goes on and how people are treated. Talk with residents and visitors about their opinions of the facility and staff. See if the residents look happy, comfortable, relaxed and involved in activities.

— Talk with staff working directly with residents to see if they are competent and content in their jobs. Also, meet with the administrator, director of nursing and social services, and visit more than once before making a decision about placement.

The most common long-term care choices for Alzheimer’s patients are residential-assisted living facilities, residential care homes, nursing homes or Alzheimer’s care units.

In the early stages of the disease, a residential-assisted living facility may fit the loved ones needs.

In Marion County, a residential-assisted unit is available at Peabody Community Living Center.

But when a loved one progresses to the most severe stages, more appropriate long-term care facilities must be found. Not all nursing homes will accept Alzheimer’s patients.

Of those long-term care facilities polled in the Marion County area, Parkside Homes and Salem Home at HCMC, both in Hillsboro, and St. Luke Living Center in Marion accept Alzheimer’s patients but do not have a separate Alzheimer’s care unit. Bethesda Home in Goessel and Peabody Community Living Center have special care units.

At Parkside, about two-thirds of the rooms are private, and they have 60 residents.

Parkside provides a bed and nightstand, and the residents are allowed to bring in their own furniture to furnish the rest of their room. The facility is not a “lock-up,” but it does have door alarms and personal alarms.

Parkside offers a program Alzheimer’s patients called ‘Genesis Club,’ which was developed by activity director Peggy Brandt. The program involves sensory stimulation for 15 to 20 minutes, five days a week.

Salem Home at HCMC, like Parkside, also accepts Alzheimer’s patients on the regular nursing care unit.

Of the 46 patients on the unit, about five have true Alzheimer’s, said Gayla Ratzlaff, social services and activities director.

“In a regular nursing home the lights are bright, which is a distraction, and there’s a lot more noise and a lot more people,” Ratzlaff said. “On an Alzheimer’s unit, you have fewer people, and people don’t care if you’re getting into their stuff.

“But in a regular nursing home, people don’t understand that the person doesn’t realize that’s not theirs.”

Wandering can also be a problem in a regular nursing home that accepts Alzheimer’s patients.

Salem Home has alarm systems, but it is not a lock-up facility.

“Somebody with Alzheimer’s who comes in early enough in their illness can establish enough of a pattern here, and that helps them,” Ratzlaff said.

“But if you bring somebody in who’s been at home and is very agitated, and you put them in a regular nursing home, it sometimes can be very difficult.”

St. Luke Living Center accepts Alzheimer’s patients but administrator Debbie Craig said she is very cautious about the admissions.

“It depends on where they are with the stage of Alzheimer’s,” Craig said. “In a true unit they need to wander, but we’re not set up for that.”

Craig said she believes Alzheimer’s patients need a care home where they can’t leave the facility, but they can go in and outside the building in fenced-in areas.

“I guess I admire facilities that say ‘No, we can’t meet their needs.’ There’s way too many facilities out there that lock them up from wandering, and that’s not good, and I think a lot of people don’t know that,” Craig said.

Bethesda Home is one of the two Alzheimer’s units found in Marion County.

“We broke ground in January of 2000, and we opened in September of that year,” said Gloria Rediger, special-care unit director at Bethesda Home. “It’s designed to be a home-like environment.”

Twelve private rooms, each with its own bathroom, are currently occupied, and Rediger has a waiting list.

“If things fit comfortably, they’re allowed to bring their own belongings, but we have our own beds we use,” said Linda Peters, administrator.

“Patient to staff ratio varies from shift to shift,” Unruh said. “But ideally we like to keep it at one staff to four residents or one to six, depending on the time of day.”

The unit and programs are specially designed to address the problems unique to Alzheimer’s patients.

“It’s a disease that needs 24-hour care,” Unruh said. “There is a great amount of caregiver stress that goes along with it. One person really can’t do it, and that’s why we’re here.

“And that’s why more of these units are needed and being built. We need to provide that relief for the families as well as the resident,” she said.

Everyone takes their own course in the disease and goes through the different stages, and Unruh said she tries to help the families focus on the positive things in a loved ones life despite the disease.

“You have to seize the moment, those triumphant moments they have with family and staff,” Unruh said.

“One of the workers the other day was talking about a resident who had a moment of clarity, and she called it a ‘God moment.’ And I think that’s what we cherish so much, those God moments.”

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