Disease’s varying effects

Alzheimer’s patients and their caregivers each experience the disease differently, making a specialized treatment plan essential to care. Don and Joyce Ruston retired more than 10 years ago and planned, like many people, to spend their golden years together traveling, taking up hobbies, and reaping the benefits of years of hard work.

Their plan for retirement changed when Don Ruston, 76, was diagnosed with Alzheimer’s Disease several years ago. But rather than being fearful of the diagnosis and fretting over all the changes that would likely come with the progression of the disease, they took on a positive attitude.

Joyce Ruston, 71, said she and her husband looked at it as something of an adventure and something to learn from.

“It wasn’t a decision,” she said. “It was something that had to happen.”

The Balboa Island residents have maintained that positive outlook during the last five years, but not all Alzheimer’s patients and caregivers are so fortunate.

Caregivers often experience denial, grief, guilt, feelings of resentment toward the patient or other family members, anger and frustration, said executive director of Adult Day Services Cordula Dick-Muehlke. Adult Day Services in Huntington Beach provides care for Alzheimer’s patients.

“Getting help early is the most important thing for a caregiver,” Dick-Muehlke said. “There are no ‘cookie cutter’ solutions for the challenges that arise in Alzheimer’s disease.”

Joyce Ruston said the biggest challenge for her has been learning a new level of patience.

“Learning patience took awhile,” she said. “I was very impatient learning patience.... It’s made me a better person in other areas of my life.”

Shortly after Don Ruston was diagnosed, he and his wife visited Adult Day Services.

Dick-Muehlke said that since dementia affects everyone differently, Adult Day Services develops a care plan for each individual with the goal of helping them remain as independent as possible, while providing the family with the support they need to continue care at home.

Patients visit with a social worker, nurses, physical and occupational therapists, a dietitian, activity specialists, and other healthcare professionals.

Because Don Ruston is still in the early stages of Alzheimer’s, he enrolled in the New Connections club offered through Adult Day Services, which helps participants stay engaged in activities.

“All too often, doctors simply prescribe an anti-dementia medication once Alzheimer’s disease is identified, failing to recognize that the person and family need much more to cope with the disease,” Dick-Muehlke said. “In the New Connections Club, early-stage individuals also have the opportunity to benefit from the support of peers and enjoy social activities together.”

The club meets two days a week, so Joyce Ruston drops her husband off at the center for the day, which allows her some free time to tend to things around the house that she doesn’t always get to when Don Ruston is home.

“What the center does is make a nice place for Don to socialize with people with the same diagnosis,” she said. “That way, he can talk with them about what’s happening, because these people are still pretty high-level functioning.”

Many caregiver support groups are also offered through the Alzheimer’s Assn. as well as Adult Day Services.

Support groups provide a safe arena in which family members can share their experiences and feelings, receive encouragement, talk about difficult situations, and learn about dementia, Dick-Muehlke said.

Another common frustration among caregivers is often they have to give up some of their regular activities and things they do for themselves because taking care of their loved ones consumes more and more time as the disease progresses.

“I’ve had to give up a lot of the activities I like to do,” Joyce Ruston said, adding that she still makes a point to go skiing for a week in the spring and also goes walking with a group of lady friends every morning.

Maintaining these few activities and making sure she still does things for herself has helped prevent Joyce Ruston from experiencing many of the negative feelings that are typical of Alzheimer’s caregivers.

“Getting support and knowledge is the key to resolving the negative feelings that often and understandably occur in reaction to a diagnosis of Alzheimer’s disease,” Dick-Muehlke said. “Just as Alzheimer’s Disease affects each individual differently, it affects each caregiver differently.... It is essential that families be reassured there is no right or wrong answer for getting through this challenging, heart-wrenching disease. For Joyce, a combination of attending the support group and having Don at the center twice weekly has helped her cope, while another caregiver may need individual counseling to address feelings of devastation or loss, and another may need primarily referrals to other community resource.”

SOME TIPS FOR

ALZHEIMER’S CAREGIVERS

DON’T

* Reason

* Argue

* Confront

* Remind them that they forget

* Question recent memory

* Take it personally

DO

* Give short, one sentence explanations

* Allow plenty of time for comprehension, then triple it

* Repeat instructions of sentences exactly the same way

* Eliminate “but” from your vocabulary, substitute “nevertheless”

* Avoid insistence -- try again later

* Agree with them or distract them to a different subject or activity

* Accept the blame when something’s wrong, even if it is a fantasy

* Leave the room, if necessary, to avoid confrontations

* Respond to the feelings rather than the words

* Be patient and cheerful and reassuring

* Practice 100% forgiveness -- memory loss progresses daily

* Elevate your level of generosity and graciousness

-- Information from the Alzheimer’s Assn.20051119iq6d5aknKENT TREPTOW / DAILY PILOT(LA)Joyce and Don Ruston of Newport Beach, are dealing with Alzheimer’s disease. Joyce is a caregiver for Don.