Alzheimer's on Long Island: The caregivers

Anne Suzuki, 57, Port Washington
Helps care for her husband, Yutaka, 62, who was recently placed in an assisted-living facility
Anne Suzuki began to notice changes in her husband, Yutaka, in the late 1990s, when he became more quiet and withdrawn. In 2001, Yutaka was diagnosed with Alzheimer?s disease. The disease's progression was slow, but by last year not only did he deteriorate, he became violent. Even seeing his own image enraged him, and all of the reflective surfaces in the house had to be covered. The once sweet, gentle man -- who never raised his voice -- attacked his wife of 34 years and when she called police, they had to subdue him. Soon he was put on medication and in April was placed in an assisted-living facility. ?I don?t think I?ve fully processed the violence,? Suzuki said. ?I think it?s like a movie reel which I?ve put away in a big can that?s gonna sit on a shelf and get dusty, and at some point I?m gonna have to take it out and relive it. I still don?t like to sit in my kitchen and see someone looking in the mirror. It triggers those memories.? (September 2009)

Andy Suzuki, 22, Port Washington
Helps care for his father, Yutaka, 62, who was recently placed in an assisted-living facility
Andy Suzuki was only 14 when his father, Yutaka, was diagnosed with Alzheimer?s, so he spent many of his teen years watching his father?s memory and verbal skills deteriorate. More recently, Andy has had to take on the role of calming his father down when he becomes agitated. Last year, Andy?s father became violent and chased his son around the dining-room table. Andy has tried his best to help his mother and to ensure her health does not suffer from her caregiving duties, but he acknowledges that it has been a tough road. ?You know, I?m the youngest child so it was like having a younger brother who is mentally disabled,? Suzuki said. ?Unfortunately, for better or for worse, I stopped seeing him as a father figure a long, long, long time ago. Which has helped distance myself from some pretty tough situations. It?s been a job or a chore for almost eight years." (September 2009)

Ellen Smith, mid-60s, Holbrook
Takes care of her husband, Irwin, known as ?Smitty,? 71, at home
Ellen Smith was not prepared for the changes Alzheimer?s inflicted on her husband, Irwin, affectionately called ?Smitty.? Having married while still in her teens, Smith thought she knew everything she could possibly know about her husband, but Alzheimer?s brought out an entirely new personality. He became agitated and aggressive, and just years after the diagnosis, she could no longer go out to restaurants and stores with him. He often had hallucinations that others were trying to kill him; he would also try to kill his wife. Ellen had thought their golden years would be spent traveling and spending time together. Instead, she said, she feels very alone, even with her husband still at home. ?We thought we did everything when we were young, that this would be the time in our lives when we would be able to enjoy ourselves and do different things together,? Smith said. ?I had all my children before I was 26. I figured at this point in our lives we?d be enjoying ourselves. It didn?t happen.? (September 2009)

John Allen, 67, St. Albans
Takes care of his wife, Catherine, 61, at home
John Allen?s wife, Catherine, was working as a regulator for insurance companies when she began to have trouble on the job, forgetting her work and losing track of tasks she had to perform. She was diagnosed with Alzheimer?s in 2003. At first Allen thought he could handle being her sole caregiver, but as Alzheimer?s took over and he had to take on more and more duties, their daughter, her husband and their two children moved in to help. Having to assist this once fiercely independent woman get dressed and ensuring that she doesn?t wander from the house has been difficult. But the true pain comes from watching someone so intelligent turn into a shell of her former self. ?She went from a person who was in total control of the household expenses, her business, her accounts, to basically not knowing they exist,? Allen said. (September 2009)

Caregiver John Rauh cared for his father who had Alzheimer's. His mother also has the disease. (June 4, 2009)

Kim Latkovich, 38, Manorville
Helps care for her mother Helen, 67, who was recently placed in a nursing home
Kim Latkovich had watched her aunt die from Alzheimer's so when she started seeing the signs in her mother, Helen, she knew Alzheimer?s was back to haunt their family. After the official diagnosis in 2003, Latkovich began helping with caregiving duties. But as time went on, she struggled to help her father, Orlando, care for her mother. She would come by two to three times a day, helping shower and change her mother, all while trying to take care of her own two young children. When the family decided that Orlando?s health was in jeopardy from the burden of caring for his wife, they placed Helen in a nursing home. ?I definitely did feel some guilt, but then I had to think about what am I going to do for my kids?? Latkovich said. ?If I just stayed taking care of her, what are they going to do? It?s not fair for them to sit in the house every single day while I?m taking care of my mom. Or not being able to go anywhere, not being able to take them to a movie because I have to take my mom. I had to think about them also at the same time. I had to try and forgive myself.? (September 2009)

Orlando Gonzalez, 66, Manorville
Helps care for his wife, Helen, 67, who was recently placed in a nursing home
Orlando Gonzalez had watched his wife, Helen, care for three of her siblings as they succumbed to Alzheimer?s, so he had his suspicions when she began struggling at work. A State Supreme Court clerk for 23 years, his wife seemed to be suddenly overwhelmed by her job. At home, she struggled to balance her checkbook and bought the same grocery items over and over. Gonzalez had hoped they could retire together and enjoy their later years with their grandchildren, but an Alzheimer?s diagnosis in 2003 ended those dreams. ?If you really think about it, you worked all your life, you pay your taxes, you?re a good citizen and this is the time we have left and we?re robbed of it, it?s gone,? Gonzalez said. ?And it?s a slow death, it?s not a quick death.? (September 2009)

Mary Williams, 66, Elmont
Takes care of her husband, Calvin, 80, at home
Mary Williams has learned that it only takes a minute. In that short time, her husband, Calvin, will find a way to sneak out of the house and wander off. He has done it dozens of times and has been found as far away as Brooklyn. He often leaves without a coat or shoes, and his family fears it?s only a matter of time before he?s injured. Still, his wife is determined to try to keep him at home. She has put alarms on the doors and has registered him with the Alzheimer?s Association?s Safe Return program. ?This is what I have to do,? Williams said. ?Because I feel that if it were vice-versa, he would be doing the same thing for me.? (September 2009)

Maxine Atkins, 67, Melville
Takes care of her husband, Bill, 74, at home
Maxine Atkins and her husband, Bill, first noticed something was wrong four years ago when he began having trouble using nouns. When he would speak, he just couldn?t come up with names for anything, something that was highly unusual for the well-educated associate dean of Nassau Community College. He would eventually be diagnosed with frontal temporal lobe dementia and has since developed problems with walking and motor control. The couple used to love to travel and see Broadway plays, but that happens less and less these days. Instead, Atkins finds herself in the unrelenting role of caregiver. ?I don?t have a husband,? Atkins said. ?I have a husband but I don?t have a husband, which is just the reality of it. I guess that?s the hardest thing. It?s the loss of independence. Everything must revolve around Bill, it just must.? (September 2009)

Pat Moffett, 62, Great Neck
Helps care for his wife, Carmen, 66, who lives in a nursing home
Pat Moffett cared for his wife, Carmen, at home for as long as he could. But he knew something else had to be done when she became violent and began to attack not only him but the aides he brought in to watch her while he worked. He had her admitted to a psychiatric hospital, although he fully expected her to come home after treatment with medications. Instead doctors recommended that she be put into a facility. The move pained Moffett and drove a wedge between him and his children that remains to this day. Moffett visits his wife as often as he can and has become an early stage Alzheimer?s advocate. He frequently gives speeches, sponsors a monthly support group dinner for caregivers and wrote a book, ?Ice Cream in the Cupboard,? about his experience of having a wife with Alzheimer?s. His wife no longer recognizes him, but he hopes his visits bring her some comfort. ?You know that?s all you can do is kind of give her a hug and maybe she realizes someone?s there that loves her,? Moffett said. (September 2009)

Patrick Kammerer, 17, Massapequa Park
Helps care for his father, Brian, 51, at home
Patrick Kammerer was just 10 years old when his father, Brian, was diagnosed with Alzheimer?s. He remembers his father?s gregarious personality, going golfing with him and going to his uncle?s house upstate. Kammerer holds on to these memories as he watches his father?s personality change. He has a shorter fuse now, Patrick said, and he often doesn?t remember names, often calling his son ?buddy.? Kammerer wants to go away to college, but he worries about leaving his family behind and about losing even more of an evaporating relationship with his father. ?That?s my worst fear,? Kammerer said. ?That I go away to college and I come back and he doesn?t remember me.? (September 2009)

Kathleen Kammerer, 49, Massapequa Park
Takes care of her husband, Brian, 51, at home
Kathleen Kammerer started sensing something was wrong with her husband, Brian, when he was in his mid-40s. Still, she was shell-shocked when he received an Alzheimer?s diagnosis at such a young age. The grieving began almost immediately, as she mourned for the father her three young children would never really know and the memories Brian would eventually lose of his family. Suddenly the milestones that she had always envisioned her husband being a part of ? celebrating graduations, walking his daughters down the aisle at their weddings ? were altered. Family celebrations became bittersweet. She struggles as the sole breadwinner of a family once headed by a high-powered Wall Street executive. As Brian slowly gets worse, Kammerer fights to keep her family together. ?Little things in our future that people don?t think about, or they just look forward to, and everything in that brief minute literally is just taken away from you,? Kammerer said. ?Stuff that you?re not thinking about in 20 years is gone because you know what Alzheimer?s is, you know that memory is the biggest thing. And it?s gone, it?s done. Because he isn?t . . . he?s not going to understand.? (September 2009)

Kate Kammerer, 14, Massapequa Park
Helps care for her father, Brian, 51, at home
As the youngest of the Kammerer children, Kate has the fewest memories of her father, Brian, before Alzheimer?s moved in with the family seven years ago. But there are snippets of incidents and behaviors that she remembers, like her father rooting for the Jets or smoking cigars and blowing smoke rings on the deck with her uncles. Now a teenager, she finds it difficult going out with her father in public. Having dinner in a restaurant, her father can become confused, leaving the waitress wondering and the family struggling to explain his behavior. She acknowledges feeling embarrassed during these times. Friends also do not seem to grasp what it means to have a parent with the disease. ?One of my friends, she says her grandmother has Alzheimer?s, but she?s like in her 80s, and she says she understands. But she really doesn?t, because her grandma?s 80 and my dad?s only 50,? Kammerer said. (September 2009)

Colleen Kammerer, 15, Massapequa Park
Helps care for her father, Brian, 51, at home
Colleen Kammerer admits she doesn?t have much patience with her father, Brian, at times. He repeats jokes over and over and tends to fixate on certain things, asking her for change from the ?payment? he gives her when she borrows money and getting upset if his dinner isn?t ready on time. But on other occasions, the absence of a father ? the father she knew when she was a child ? takes center stage, forming an inescapable sadness. Like when they have a father-daughter dance at school and she has to tag along with a friend and her father. Sometimes, Colleen?s father seems to sense this sadness. ?At times he?ll bring up, like ?I want to be good to you now because I don?t know if I was good to you then? and stuff like that,? Kammerer said. (September 2009)

Paula Rice, 56, Manhattan
Took care of her mother, Mabel, 84, until her death in a nursing home two years ago
Paula Rice's aunt had Alzheimer?s, so she had a sense of what she was in for when her mother, Mabel, was diagnosed with the disease in her late 70s. But when her mother began to wander and Rice spent nearly a year without getting a good night?s sleep, she fully understood the physical toll of caregiving. Next came the emotional toll, as she watched her mother, a teacher for 30 years, become a child again. This role reversal shook Rice to her core. ?You just have to kind of like go along with whatever it is they?re saying or thinking and it?s tough because you?re looking at your parent and you just want to like shake them back into normalcy,? Rice said. ?And it hurts you because this is the person who used to give you advice. It just really breaks your heart. I guess you hope that they?re going to get better but you know they?re not.? (Sept. 28, 2009)