--
The Post-Star
June 10, 2007
Helping Him Find His Way:
Siblings pull together to care for parent with Alzheimer's disease
By AMANDA BENSEN
~~~
Bernard Bondzinski is looking for something, but he can't remember what. The feeling has been nagging him for a long time.
It's not in the napkins, the package of hamburger buns, or the bag of chips set out on the kitchen table for the Memorial Day barbecue.
It's not in the pattern of the tablecloth, although he studies it closely.
He looks at the face of the woman across the table. She wants something -- what is it?
"Let's go outside," she is saying.
He doesn't know her name, but he accepts the support of her arm and moves slowly toward the yard. Maybe it's out there, this nameless missing thing that makes its presence known only by its absence.
Who are these people leaning down to kiss him on the cheek, hold his hand, offer him a mug of root beer?
Nice bunch.
MORE ABOUT ALZHEIMER'S DISEASE
Alzheimer's disease was named after the German doctor Alois Alzheimer, who described the first known case of the disease in 1906. In the hundred years since, the number of cases diagnosed has risen dramatically.
According to the national Alzheimer's Association, Alzheimer's disease is currently eroding the brains of more than 5 million Americans, which is 10 percent more than five years ago. At this rate, the U.S. population may include as many as 16 million senior citizens with Alzheimer's disease by 2050 unless more effective prevention and treatment methods are developed.
The disease's prevalence increases sharply with age.
Most Alzheimer's patients are older than 65 and the disease affects 42 percent of people 85 and older. Age is the biggest risk factor for developing the disease, but a family history of Alzheimer's and poor cardiovascular health may increase that risk.
Some studies have also shown that people who suffered a serious head injury at some point in their life may be at a higher risk for developing Alzheimer's.
It is a fatal disease that currently has no cure, although some prescription drugs can temporarily slow the symptoms.
It destroys brain cells and neurons, starting with those that control memory and thinking skills.
With time, it progressed to areas of the brain associated with physical functioning. In the final stages of the disease, patients become completely incapacitated and require constant care.
WARNING SIGNS
1. Memory loss, particularly short-term.
2. Difficulty performing familiar tasks.
3. Problems with language and vocabulary.
4. Disorientation to time and place.
5. Poor or decreased judgment.
6. Problems with abstract thinking.
7. Misplacing things.
8. Mood swings or behavioral changes.
9. Changes in personality, such as sudden confusion, suspicion or fearfulness.
10. Loss of initiative, increased sleeping and passivity.
Source: Alzheimer's Association
Bernard Bondzinski is looking for something, but he can't remember what. The feeling has been nagging him for a long time.
It's not in the napkins, the package of hamburger buns, or the bag of chips set out on the kitchen table for the Memorial Day barbecue.
It's not in the pattern of the tablecloth, although he studies it closely.
He looks at the face of the woman across the table. She wants something -- what is it?
"Let's go outside," she is saying.
He doesn't know her name, but he accepts the support of her arm and moves slowly toward the yard. Maybe it's out there, this nameless missing thing that makes its presence known only by its absence.
Who are these people leaning down to kiss him on the cheek, hold his hand, offer him a mug of root beer?
Nice bunch.
~~~
"Nice bunch" is how Bernard described his own family recently when his oldest daughter, Pat Frederick, showed him a framed family portrait. She pointed out faces that were once familiar: his wife, Lena, and their seven children, their smiles preserved beneath glass.
"That's you right there," Pat told him.
"Me?" he asked in surprise.
"Yep," she replied.
He looked at the faces a while longer, but couldn't find the memories.
"Huh," he said.
She sat down next to him and watched a movie on television, answering his questions about the actions on screen. Eventually, she would fix him supper, then help him get ready for bed. If he woke in the night feeling confused, frightened or restless, she would be there.
Parents are supposed to take care of their children, not the other way around.
But as Pat puts it, "Life plays dirty little tricks on us sometimes and changes us in ways we don't want."
Frederick and four of her six siblings are in-home caregivers for their father, Bernard "Pete" Bondzinski, who has Alzheimer's disease. They have developed a rotating shift schedule, like nurses, so that someone is with him in his home 24 hours a day, seven days a week.
Most of them have full-time jobs and families of their own, but they have been keeping up this arrangement for three years, starting in 2004 with their mother, Lena, who died in 2005. The children knew she didn't want to go into a nursing home, so they had family meetings and agreed to share the burden of caregiving.
"We decided we would do what we could, as long as we could, and that's what we did," Pat said.
As Lena entered the final stages of Alzheimer's, Bernard was slipping into the disease's grasp almost unnoticed.
"He was always very private, in control of his world. If he resisted something, we would say, 'Oh, Dad's just being stubborn,' " Pat remembered.
But the signs were there. They took away his car after noticing that he drove at excessive speeds and got lost in familiar places. He started burning his eggs in the mornings. Sometimes he refused to change his shirt for days at a time, like an obstinate child. That was one of the toughest phases to go through, Pat said.
"Where do you say, I'm taking over? Where do you say, you have to do something, and where do you say, I respect your right to do as you please? That's the hard part," she reflected.
As she spoke, her father dozed in his armchair, as he had been doing all morning. He sometimes sleeps all day, or simply sits in silence, petting the cat and watching television.
"Where he's at right now, it looks hard ... but it's easier," she said. "What we focus on right now is keeping him contented, feeling secure. Instead of trying to bring him back to our world, we go into his world ... You just expect that whatever happens, that's the normal for that day."
Pat works weekdays as a receptionist and spends Friday night through Sunday morning at her father's house. Her five sisters -- a sixth lives in Florida -- take the other shifts, while their brother handles things like bills and yard work. They don't want Bernard to have to leave the house he built himself, using wood from the scenic swath of land in South Glens Falls where he used to run a dairy farm. He has lived on the property since his Lithuanian immigrant parents moved there when he was 6 years old.
"My dad is so tied to this land. There's no way he would ever feel good being anyplace except where he is," Pat said. "Would we ever consider an alternative? ... It would have to be a last resort."
In many ways, Bernard's children feel that they are watching their father's life in reverse. He's slipping backward through time, into corners of his memory they've never encountered, giving them a glimpse of the child his own parents knew long ago.
"He's getting younger. I've seen him act down to probably around four, where he would say, 'Pick me up,' " said Carol Kennedy, one of his daughters. "And yet he will snap back into the adult, telling you what to do -- it keeps you on your toes."
A few weeks ago, Carol stopped by her father's house during Pat's shift on a Saturday afternoon.
A relative had died suddenly the night before and the family was trying to cope with that loss without disrupting Bernard's calm routine, but Carol was visibly stressed.
She collapsed with a sigh in a kitchen chair between her father and sister.
Bernard was in a good mood. He had spent the last 10 minutes opening and closing a musical birthday card, jumping slightly and chuckling each time the tune exploded from the unfolding paper.
"Nice bunch" is how Bernard described his own family recently when his oldest daughter, Pat Frederick, showed him a framed family portrait. She pointed out faces that were once familiar: his wife, Lena, and their seven children, their smiles preserved beneath glass.
"That's you right there," Pat told him.
"Me?" he asked in surprise.
"Yep," she replied.
He looked at the faces a while longer, but couldn't find the memories.
"Huh," he said.
She sat down next to him and watched a movie on television, answering his questions about the actions on screen. Eventually, she would fix him supper, then help him get ready for bed. If he woke in the night feeling confused, frightened or restless, she would be there.
Parents are supposed to take care of their children, not the other way around.
But as Pat puts it, "Life plays dirty little tricks on us sometimes and changes us in ways we don't want."
Frederick and four of her six siblings are in-home caregivers for their father, Bernard "Pete" Bondzinski, who has Alzheimer's disease. They have developed a rotating shift schedule, like nurses, so that someone is with him in his home 24 hours a day, seven days a week.
Most of them have full-time jobs and families of their own, but they have been keeping up this arrangement for three years, starting in 2004 with their mother, Lena, who died in 2005. The children knew she didn't want to go into a nursing home, so they had family meetings and agreed to share the burden of caregiving.
"We decided we would do what we could, as long as we could, and that's what we did," Pat said.
As Lena entered the final stages of Alzheimer's, Bernard was slipping into the disease's grasp almost unnoticed.
"He was always very private, in control of his world. If he resisted something, we would say, 'Oh, Dad's just being stubborn,' " Pat remembered.
But the signs were there. They took away his car after noticing that he drove at excessive speeds and got lost in familiar places. He started burning his eggs in the mornings. Sometimes he refused to change his shirt for days at a time, like an obstinate child. That was one of the toughest phases to go through, Pat said.
"Where do you say, I'm taking over? Where do you say, you have to do something, and where do you say, I respect your right to do as you please? That's the hard part," she reflected.
As she spoke, her father dozed in his armchair, as he had been doing all morning. He sometimes sleeps all day, or simply sits in silence, petting the cat and watching television.
"Where he's at right now, it looks hard ... but it's easier," she said. "What we focus on right now is keeping him contented, feeling secure. Instead of trying to bring him back to our world, we go into his world ... You just expect that whatever happens, that's the normal for that day."
Pat works weekdays as a receptionist and spends Friday night through Sunday morning at her father's house. Her five sisters -- a sixth lives in Florida -- take the other shifts, while their brother handles things like bills and yard work. They don't want Bernard to have to leave the house he built himself, using wood from the scenic swath of land in South Glens Falls where he used to run a dairy farm. He has lived on the property since his Lithuanian immigrant parents moved there when he was 6 years old.
"My dad is so tied to this land. There's no way he would ever feel good being anyplace except where he is," Pat said. "Would we ever consider an alternative? ... It would have to be a last resort."
Going back in time
In many ways, Bernard's children feel that they are watching their father's life in reverse. He's slipping backward through time, into corners of his memory they've never encountered, giving them a glimpse of the child his own parents knew long ago.
"He's getting younger. I've seen him act down to probably around four, where he would say, 'Pick me up,' " said Carol Kennedy, one of his daughters. "And yet he will snap back into the adult, telling you what to do -- it keeps you on your toes."
A few weeks ago, Carol stopped by her father's house during Pat's shift on a Saturday afternoon.
A relative had died suddenly the night before and the family was trying to cope with that loss without disrupting Bernard's calm routine, but Carol was visibly stressed.
She collapsed with a sigh in a kitchen chair between her father and sister.
Bernard was in a good mood. He had spent the last 10 minutes opening and closing a musical birthday card, jumping slightly and chuckling each time the tune exploded from the unfolding paper.
"Celebrate good times, come on!" the song declared.
When he seemed to be losing interest, Carol leaned in close to her father and sang a snippet of a children's song to him.
"The itsy bitsy spider ..." she sang, then made a funny face.
He grinned.
"Woof," he said, with a glint of mischief in his bright blue eyes.
"Meow," she answered, laughing.
"We get goofy sometimes. We all have our own special ways of connecting, and that's mine," she explained to the others in the room.
"It works, doesn't it Dad?" she added.
"Did it?" he asked. Most of his answers are questions.
"Well, it gave me a laugh, and I needed that," she said.
"That's good, isn't it?" he asked.
The brain works in mysterious ways, and fleeting moments of clarity can emerge from the fog of Alzheimer's. Seizing this one, the women began to sing their father's favorite song, "God Bless America."
He joined in, and remembered all the words.
A few hours later, Pat made Bernard a grilled cheese sandwich.
"What do I do with this?" he asked her.
No one would ask for the situation facing the Bondzinski family, but they have discovered rewards amid the challenge of caring for their parents.
It has brought the siblings closer than they ever were and taught them to let certain differences go. There are four or five types of butter and margarine in Bernard's fridge, and as many kinds of bread on the counter -- it's not worth fighting over the "right" way to make a sandwich.
"This forced us to experience the strength of each other," Carol said. "And oh my goodness, have I learned! We've all learned."
As their father has become more childlike, his daughters say they have appreciated the chance to get closer to him. He was the kind of father who showed his love by always being there, not by flowery displays of emotion or physical affection, they said. Now, they feel free to hold his hand or say "I love you, Dad" -- things that would have made him uncomfortable in the past.
"It's like getting to look at someone who has dropped all their defenses. You get to see the core person," Carol said. "I have found beauty in it. I have found healing in it. And yet -- do I want my children to parent me? Absolutely not. I know that sounds like a contradiction. But I know the emotional toll it can take."
They share their thoughts with each other in a notebook, keeping track of everything from Bernard's sleeping and eating habits to their own moments of grief, anger, joy and exhaustion.
"He becomes confused as to day and night -- forgets if he's eaten, never remembers who we are, forgetting in an instant what we've just said to him ... and what we once thought we'd established over a lifetime," Gail Kenyon, another sister, wrote in June of last year. "It's old and new all at once. The disability of the brain, its ability to make the known unknowable, family into strangers, is old. This terrible affliction was expressed in more colorful, detailed, heartwrenching ways in our mom. Dad's world is more black and white, just as he's been over the years."
The most important thing they can do for their father, the Bondzinski children believe, is to simply return the gift he gave them for so many years -- a quiet, supportive presence.
"I think even if you can't take care of your parents, even if they have to go into a nursing home -- you can be a presence. Be fearful if you need to be, be sad if you need to be, but be it there," Gail said. "In the last hours of my mother's life ... she didn't have to know our names, or even that we were her daughters. She just knew that we were there."
Bernard met his wife, Lena, when the two were teenagers in a local accordion band. They were married for almost 65 years and in the last several years Bernard was Lena's caregiver as she was increasingly disabled by arthritis and Alzheimer's.
By the time she died in 2005, Bernard was in the early stages of Alzheimer's, and in some ways, that eased his pain, Pat said.
"He knew she died, he was with her when she died, but then a part of him sort of closed off afterwards, except to sometimes wonder where she was," Pat said. "Every once in a while now, he'll say, 'Where's my woman?' And we'll have to say, 'Well, she's not here right now.' "
Lena and Bernard had a favorite song, as many couples do -- Barry Manilow's "In Apple Blossom Time."
Pat sang a few bars of it to her father the other day, as she looked out the kitchen window at the yard where her parents once strolled beneath apple trees.
"I'll be with you in apple blossom time, I'll be with you to change your name to mine. One day in May, I'll come and say, happy the bride the sunshine's on today ..."
Her voice broke as she remembered all that was lost -- the apple trees, her mother, and now her father, slowly disappearing.
The kitchen clock ticked out several long measures of silence while she wept.
Bernard watched his daughter with the steady, curious gaze of a child trying to unravel the mysteries of grown-up behavior. He leaned forward in his chair slightly, as if he wanted to say or do something, but wasn't sure what.
"It's difficult," he said at last.
Pat looked at him thoughtfully, surprised at this moment of coherence.
"Yes," she replied. "It is difficult."
~~~
When he seemed to be losing interest, Carol leaned in close to her father and sang a snippet of a children's song to him.
"The itsy bitsy spider ..." she sang, then made a funny face.
He grinned.
"Woof," he said, with a glint of mischief in his bright blue eyes.
"Meow," she answered, laughing.
"We get goofy sometimes. We all have our own special ways of connecting, and that's mine," she explained to the others in the room.
"It works, doesn't it Dad?" she added.
"Did it?" he asked. Most of his answers are questions.
"Well, it gave me a laugh, and I needed that," she said.
"That's good, isn't it?" he asked.
The brain works in mysterious ways, and fleeting moments of clarity can emerge from the fog of Alzheimer's. Seizing this one, the women began to sing their father's favorite song, "God Bless America."
He joined in, and remembered all the words.
A few hours later, Pat made Bernard a grilled cheese sandwich.
"What do I do with this?" he asked her.
Unexpected blessings
It has brought the siblings closer than they ever were and taught them to let certain differences go. There are four or five types of butter and margarine in Bernard's fridge, and as many kinds of bread on the counter -- it's not worth fighting over the "right" way to make a sandwich.
"This forced us to experience the strength of each other," Carol said. "And oh my goodness, have I learned! We've all learned."
As their father has become more childlike, his daughters say they have appreciated the chance to get closer to him. He was the kind of father who showed his love by always being there, not by flowery displays of emotion or physical affection, they said. Now, they feel free to hold his hand or say "I love you, Dad" -- things that would have made him uncomfortable in the past.
"It's like getting to look at someone who has dropped all their defenses. You get to see the core person," Carol said. "I have found beauty in it. I have found healing in it. And yet -- do I want my children to parent me? Absolutely not. I know that sounds like a contradiction. But I know the emotional toll it can take."
They share their thoughts with each other in a notebook, keeping track of everything from Bernard's sleeping and eating habits to their own moments of grief, anger, joy and exhaustion.
"He becomes confused as to day and night -- forgets if he's eaten, never remembers who we are, forgetting in an instant what we've just said to him ... and what we once thought we'd established over a lifetime," Gail Kenyon, another sister, wrote in June of last year. "It's old and new all at once. The disability of the brain, its ability to make the known unknowable, family into strangers, is old. This terrible affliction was expressed in more colorful, detailed, heartwrenching ways in our mom. Dad's world is more black and white, just as he's been over the years."
The most important thing they can do for their father, the Bondzinski children believe, is to simply return the gift he gave them for so many years -- a quiet, supportive presence.
"I think even if you can't take care of your parents, even if they have to go into a nursing home -- you can be a presence. Be fearful if you need to be, be sad if you need to be, but be it there," Gail said. "In the last hours of my mother's life ... she didn't have to know our names, or even that we were her daughters. She just knew that we were there."
What was
Bernard met his wife, Lena, when the two were teenagers in a local accordion band. They were married for almost 65 years and in the last several years Bernard was Lena's caregiver as she was increasingly disabled by arthritis and Alzheimer's.
By the time she died in 2005, Bernard was in the early stages of Alzheimer's, and in some ways, that eased his pain, Pat said.
"He knew she died, he was with her when she died, but then a part of him sort of closed off afterwards, except to sometimes wonder where she was," Pat said. "Every once in a while now, he'll say, 'Where's my woman?' And we'll have to say, 'Well, she's not here right now.' "
Lena and Bernard had a favorite song, as many couples do -- Barry Manilow's "In Apple Blossom Time."
Pat sang a few bars of it to her father the other day, as she looked out the kitchen window at the yard where her parents once strolled beneath apple trees.
"I'll be with you in apple blossom time, I'll be with you to change your name to mine. One day in May, I'll come and say, happy the bride the sunshine's on today ..."
Her voice broke as she remembered all that was lost -- the apple trees, her mother, and now her father, slowly disappearing.
The kitchen clock ticked out several long measures of silence while she wept.
Bernard watched his daughter with the steady, curious gaze of a child trying to unravel the mysteries of grown-up behavior. He leaned forward in his chair slightly, as if he wanted to say or do something, but wasn't sure what.
"It's difficult," he said at last.
Pat looked at him thoughtfully, surprised at this moment of coherence.
"Yes," she replied. "It is difficult."
~~~
MORE ABOUT ALZHEIMER'S DISEASE
Alzheimer's disease was named after the German doctor Alois Alzheimer, who described the first known case of the disease in 1906. In the hundred years since, the number of cases diagnosed has risen dramatically.
According to the national Alzheimer's Association, Alzheimer's disease is currently eroding the brains of more than 5 million Americans, which is 10 percent more than five years ago. At this rate, the U.S. population may include as many as 16 million senior citizens with Alzheimer's disease by 2050 unless more effective prevention and treatment methods are developed.
The disease's prevalence increases sharply with age.
Most Alzheimer's patients are older than 65 and the disease affects 42 percent of people 85 and older. Age is the biggest risk factor for developing the disease, but a family history of Alzheimer's and poor cardiovascular health may increase that risk.
Some studies have also shown that people who suffered a serious head injury at some point in their life may be at a higher risk for developing Alzheimer's.
It is a fatal disease that currently has no cure, although some prescription drugs can temporarily slow the symptoms.
It destroys brain cells and neurons, starting with those that control memory and thinking skills.
With time, it progressed to areas of the brain associated with physical functioning. In the final stages of the disease, patients become completely incapacitated and require constant care.
WARNING SIGNS
1. Memory loss, particularly short-term.
2. Difficulty performing familiar tasks.
3. Problems with language and vocabulary.
4. Disorientation to time and place.
5. Poor or decreased judgment.
6. Problems with abstract thinking.
7. Misplacing things.
8. Mood swings or behavioral changes.
9. Changes in personality, such as sudden confusion, suspicion or fearfulness.
10. Loss of initiative, increased sleeping and passivity.
Source: Alzheimer's Association
~~~
RESOURCES
Alzheimer's Association of Northeastern New York: http://www.alzneny.org/
National Alzheimer's Association: http://www.alz.org/, 24-hour helpline (888) 272-3900
Office for the Aging, Warren County: 761-6347, Washington County: 746-2420, Saratoga County: 884-4100
U.S. Alzheimer's Disease Education and Referral Center: http://www.alzheimers.org/, (800) 438-4380
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