Love and Grief

May 3, 2005


By JESSICA ADLER
HERALD NEWS


During the last eight years, the signs and symptoms trickled out slowly, like drops from a faucet.

John Kondra and his wife, Bertha, would be watching TV in the living room of their Clifton home, and Bertha would get up and walk out the front door with no particular destination.


The couple, who will celebrate their 60th wedding anniversary in September, would go out for dinner, and when John pulled the car into the driveway, Bertha, now 82, would act as though the two were on a first date.


"Would you like to come into the house for a while?" she would ask.


When the couple's only child, Thomas, visited, Bertha would tell her son that there was a strange man in the kitchen.


"Mom," Thomas would say. "That's Dad."


Bertha Kondra - "a typical 1950s mom who took care of the house and took care of her man," according to Thomas - has Alzheimer's disease. Over the last year, her condition has deteriorated to such an extent that she requires round-the-clock care. Her 86-year-old husband, John, provides that care.


Thousands of spouses and adult children do the same for loved ones with Alzheimer's, a form of dementia affecting parts of the brain that control thought, memory and language, which gradually erodes a person's ability to function independently. The challenges caregivers face are manifold, from the emotional to the routine.


"Caregivers are grieving for someone they love, bit-by-bit," says Mary Anne Ross, coordinator of the resource center at the Edison-based Comprehensive Services on Aging (COPSA) Institute for Alzheimer's Disease and Related Disorders. "At the same time, they have to do all the work."


There are an estimated four million Americans suffering from Alzheimer's, which affects three percent of men and women between the ages of 65 and 74, and, according to the Alzheimer's Disease Education and Referral Center, nearly half of those 85 and older.


Ask John Kondra how he finds the strength to handle his wife's illness, and he'll give you an even-keeled reply: "This is something I have to do now."


On reflection, he'll add: "I love her. I owe it to her, the poor kid."


When Thomas Kondra spoke with his father about placing his mother in a nursing home or an assisted-living facility, John said, "Why would I want to put her in a home? What would I do? I gotta do something."


These days, John has plenty to do. He wakes up at 6:30 in the morning with his wife, helps her walk to the bathroom, bathes her, picks an outfit for her and dresses her. Sometimes she mutters in Polish, her native tongue. Mostly, she repeats words and phrases that have no context.


"Johnny," Bertha repeats over and over as her husband feeds her breakfast. "Show me the best."


John can smile and shrug off his wife's behavior. Over the last six months, her mental capacity has undergone a steady downward trend, and she can no longer hold a conversation. John gets aggravated at times, he says, but he's become more and more mellow over the years.


"I really don't blow my stack," John says. "When it first started, I felt so bad. Now, I just figure this is the way it's gonna be."


For some caregivers, the repetition of phrases and clingy behavior like Bertha's - she gets nervous when John leaves the room - can be a source of frustration and anger. Some interpret meaning behind things said by a loved one with Alzheimer's, who, as a function of the disease, might experience feelings of paranoia, voice delusions of infidelity and say hurtful things. Often, caregivers experience the brunt of aggressive or antagonistic behaviors. They need to realize that statements by those with Alzheimer's are not necessarily rooted in rational thought.


"Caregivers try to make sense of things being said," says Ross, of COPSA. "But they have nothing to do with how (the person with Alzherimer's) feels about them."


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Bertha spends most of the day in a wheelchair with a seatbelt across her lap. John began using the chair about a month ago, and it has been a godsend. Before, he constantly worried that Bertha, who isn't always mindful of the fact that she walks shakily, would stand up, lose her balance and fall.


The wheelchair is only one way that John, a retired engineer, ensures his wife's safety. When Bertha lost the ability to comprehend the signs her husband kept on the front door that advised her not to leave the house, John installed alarms. And he put motion censors on the dresser in the bedroom, so that when Bertha gets up in the middle of the night, which she does every two or three hours, an alarm sounds, and John knows to make his way around the bed to walk her to the bathroom.


The couple's life has changed in almost every way over the last three years, as Bertha's disease has progressed. Like many caregivers, John has given up most of his hobbies, so that his wife is never unattended. It's been two years since he played golf, something he used to do two or three times a week.


"I don't miss it anymore," John says. "It was nice to get out with the guys, but I wasn't getting any better."


At this point, John and Bertha - who used to spend sunny days watching local high school softball games, and evenings eating in restaurants and polka dancing - "don't get out much," John says. Their weekly church visits stopped when Bertha began getting fidgety. There are a few friends who still visit occasionally, but generally, John says, "people don't bother with you."


"I make an effort not to feel bad," John says, adding that he has plenty to keep him busy. "I'm the homemaker," he says with a smile.


John and Bertha listen to music together - Glenn Miller, Elvis Presley, Billy Joel. They watch television. John surfs the Internet. He does the laundry. He fixes things around the house. He plays his keyboard. And he tends to his garden, which he had yet to turn over by mid-April.


"Isolation is a big issue," says Laura Holly-Dierbach, vice president for programs and services at the Alzheimers Association's Greater New Jersey chapter, which is based in Denville. "Caregivers can no longer participate in the same level of activity. And outsiders don't realize the types of things they're doing for an individual on a daily basis, what they're going through."


John is fairly open about his daily regimen. If Thomas asks whether his father got much sleep the night before, John might say, "No, she was up at 12. I hardly slept."


"He doesn't complain about it," Thomas says of his father. "He just does what he has to do."


Caregivers who bottle up their frustrations and don't make time for themselves have a heavy burden, says Dr. Janet Amaro, a psychologist who specializes in the treatment of geriatric patients at St. Joseph's Medical Center in Paterson. "Taking care of anyone with dementia is going to require that you not just protect your loved one, but also yourself."


A few months ago, Thomas arranged for a nurse to visit his parent's house for three hours twice a week, in the hopes that his father could get some relief, some time to himself.


On the evening of the nurse's first visit, Thomas asked, "Dad, what did you do today?"


"I went to the store," his father said.


He had finally had some time to get out by himself. Thomas was relieved.


Then, his father added: "I brought the aide and mom with me."


Thomas was dumbfounded.



"The idea is to get out on your own, Dad. You need time for yourself."


That is the idea, according to Marsha Miller, a Resident Nurse with HomeCare Options, a non-profit home care agency based in Paterson, which sponsors the New Jersey Department of Health and Senior Services' Statewide Respite Program in Passaic County. But, often, caregivers find it difficult to accept help.


"They have been so used to doing this work that they haven't thought, 'I can do something for me,' or, 'while you're here, I'll go out,' or even, 'I'll be in the kitchen.' That takes time," Miller says.


By now, John feels comfortable leaving the house when the nurse visits.


And he gets relief, too, during daily visits from Thomas, who, as vice president of financial services for Iwatsu, a telecommunications firm in Hackensack, works close enough to his parent's home that he can visit almost every day. In the dining room, the father and son feed Bertha her lunch between bites of their own.


Thomas provides the sort of support network that many caregivers could benefit from, says Julie Coleman, clinical trials coordinator for COPSA. Caregivers' friends and family members need to suggest concrete ways they can help, not make amorphous offers, like, "Call me if you need anything."


"It shouldn't be, 'Do you want me to do it?'" Coleman says. "Family members need to just do it."


Thomas and John have discussed plans for the future. If something should happen to John, Bertha will most likely be placed in a nursing home. John doesn't like the thought of that.


"They won't treat her like I do," he says.


"But I don't know how much longer the lord will keep me this way to take care of her."

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