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A year later: Newsday follows Alzheimer's families

Mike Henley lies in bed at the hospital.

Mike Henley lies in bed at the hospital. His family brought him to the hospital because of seizures related to his late-stage Alzheimer's. (May 22, 2008) Credit: Newsday / J. Conrad Williams Jr.

Last year, Newsday published "Alzheimer's: The Love and the Heartbreak," a series of stories that followed six families with loved ones at different stages of the disease. The award-winning stories explored the emotional, physical and financial impact of caring for those with Alzheimer's, whether they are at home or in a facility.

A year later finds many of the families continuing to struggle: some with the draining and unrelenting task of caregiving, others with the pain and loneliness of loss. Some are still learning how to approach the unique disease, in which patients often cannot express gratitude for the care they receive - or even recognize their caregiver. And some families are using the knowledge they've acquired to help others and become advocates for change in a system they say is not equipped to handle Alzheimer's disease.


Gloria Richmond

Until this year, Gloria Richmond had never gardened, never so much as taken a single seed and placed it in the earth. But this summer Gloria, 71, often found herself outside her Holbrook condo, kneeling on the ground, her fingers fanning through the rich soil. She created a garden in a small spit of land next to her patio. She calls it David's Garden.

"I started doing it and I thought, 'This is good therapy, that I can do these things and be outdoors," she said.

Gloria's husband of 24 years, David, was 70 when he died in June 2009 after spending six years in a nursing home, his Alzheimer's disease slowly taking over. Gloria hated putting him in the facility but couldn't take care of him by herself. She visited him often, taking long bus rides and staying by his side all day. She was his caregiver, she said; she had to be there to advocate for him.

Since David's passing, Gloria is taking more time for herself. Once neglected in lieu of David's care, her health is now a priority. When she's not trying to keep up with her new white Maltese puppy, she has lunches with friends and even has taken a vacation to Hawaii.

"People say that I'm more relaxed," she said. "They say I seem to be happy and laughing more."

With her daughter having recently moved away, Gloria said she feels lonely, but her visits to David's grave bring her peace.

"I prayed so hard for flowers to come up," she said of her garden. When they bloomed, she cut them and took them to Calverton National Cemetery, saying, "David, these are from your garden," as she placed them at the foot of his tombstone. Then she would fill her husband in on the latest news and say a prayer for him.

For a time after David's death, Gloria took comfort in volunteering at his nursing home. But she stopped after staff told her she was too emotionally involved with the residents. She said the patients need a voice and their families often need information on the disease.

"I'm an advocate, that's what you have to do," she said. "It doesn't cost anything. It's helping others understand and getting them the right information."


Bob Schreibman

For Bob Schreibman, volunteering has been a saving grace. At least once a week the 90-year-old travels from his apartment in Forest Hills to Port Washington to spend the day at the Long Island Alzheimer's Foundation. He answers phones, stuffs envelopes and guides those lost in the cloudiness of dementia.

He finds the work fulfilling, he said, but it's a salvation bathed in sadness.

"What I'm trying to do, though not deliberately I think, is to bury myself in the Alzheimer's Foundation," he said.

Bob's wife of 66 years, Marge, 85, lived with Alzheimer's for seven years before she suffered a stroke and died in November 2007. Bob was her primary caregiver.

Now he tries to keep busy. He continues to work on a book about his life with Marge and is contributing a short story to a book on marriage longevity. He visits his grandson Phillip in Connecticut regularly and takes pleasure in spending time with his new great-granddaughter, whose middle name is Marjorie.

He was thrilled when he learned the foundation will be handing out the first Robert and Marjorie Schreibman Caregiving Award at its Coping and Caring conference and awards luncheon in February. The award will be for "remarkable family caregivers whose efforts resulted in a more positive care experience for a person with dementia."

Still, Bob said, he labors through each day spent without Marge.

"Life is the most precious thing you can have," he said. "But it isn't the same now as it was when Marge was alive. I exist day to day."

Since her death, Bob hasn't been to a movie or eaten in a restaurant by himself. He said he has no desire "for any kind of self-improvement" and hasn't been to the doctor regularly. For three years Bob refused to sleep in the bedroom he and Marge had shared, instead spending his nights on a pullout sofa in the guest bedroom. He recently decided to give it a try and said he has come to like it: He feels that Marge is with him, lying next to him in bed.

Taking care of Marge by himself could be a nightmare, he said, but he misses caring for her: "I had time and patience and a deep, deep love."


Lynn Decker

For Lynn Decker and her partner, Heide Leuthner, the full realization that their days caring for Lynn's mom, Emma, are over arrives in unexpected spurts.

Weeks ago, such a moment presented itself after the couple attended a play in which Lynn's second cousin had a role.

"We haven't done anything with the family for the last five, six years because we couldn't," Lynn, 47, said. After the performance, "coming home at 12:30 a.m. was a reminder of the freedom that we have, that we never had before, to be with family and not rush home," Heide, 43, said.

Lynn and Heide helped care for Emma at home in Bayville until her death at age 78 in April 2009.

The relief from the daily chores was immediate, Lynn said, but developing a life outside of caregiving took a little more effort.

"To get back into the swing of going out and doing things and being more spontaneous - it did take me a while longer," she said.

"It was strange in the beginning to adjust to the difference of having our freedom and being able to focus on us - it really took almost a year," Heide said.

An X-ray technician, Lynn was able to return to the work shift she preferred, and Heide was able to increase her volunteer work. "I like that if I want to take a walk or go out and take some pictures, I can do that now," said Lynn, an amateur photographer. "I like that I can just do that, I can just go whenever I want."

Her father, Fred, 81, said he misses their not being around the house as much, Lynn said, and she worries about his health. Lynn and Fred are trying to take care of themselves now: Both are going to doctors' appointments regularly, something Lynn said she hadn't done in the last five years of her mother's life.

Lynn said she talks to her mother every day and thinks about her all the time. "I know I'm blessed because of her," she said.

Recently, Lynn and Heide were able to use their caregiving knowledge to guide a friend whose mother suffered from dementia. "At least we can help people with advice," Lynn said. "We're able to give support."


The Henleys

Doubled over in agony, stabbing pains shooting through her body, Karen Henley had to weigh whether to seek medical treatment. Two concerns filled her mind: Who would take care of her husband, Mike, who is immobile at home, and how would she pay for her medical care?

Last year, Karen, 49, of Westbury, who works full-time for a real estate attorney, gave up health insurance for herself and her daughter Courtney, 19, because she could no longer afford it. In October, faced with a potentially large doctor's bill, she tried to hold off, even as the pain of kidney stones ripped through her. Finally, in tears, Courtney and her brother, Brandon, 17, begged her to go to the hospital. The result: a nearly $10,000 emergency room bill, one that Karen said she cannot pay.

Her husband, Mike, 45, is in his ninth year of living with Alzheimer's. Karen and her kids have remained steadfast in their desire to keep him at home even though he does not speak and is unable to feed, bathe or care for himself. He must be lifted in and out of his geriatric chair into a bed.

His health continues to decline, with fevers coming more often. But Courtney remains optimistic. "He still laughs and smiles just as much as before, and that's how I gauge everything," she said.

But her brother is well aware of the trials that remain. He has become Karen's co-caregiver now that Courtney is away at Fordham University - she was able to transfer into her dream school from Hofstra after new federal regulations helped the family get a loan.

"Every day that goes by, it gets harder," Brandon said. "Every day there's a new challenge to face, a new obstacle to overcome."

It's his senior year at Kellenberg Memorial in Uniondale, and his new role at home has put limitations on his social life. "There's no more room for late-night hangouts or parties or anything like that," he said.

In the last year, the family's phone and cable have been shut off and their car insurance canceled. "I pay my bills by what's next to get shut off," Karen said. "It's the disease starting so young. I'm just going deeper and deeper into a hole."

She's worried about paying for Brandon's college education and, if he lives on campus, about who will help her get Mike ready for bed at night. Courtney has said she will move home and commute to school if her brother goes away. But Karen said she does not want to deny her children the opportunity to live on campus after they have sacrificed so much for the care of their father.

"There are other people who didn't take the route we took," she said of families who place their loved ones in nursing facilities. "When I see the opportunities the other kids have, that's when I start questioning what I did . . . but we will figure out a way."


Dorla Walker

Dorla Walker always knew it would be a struggle to care for her father, Thomas, 84, at home in Baldwin. She did it even as she worked full-time and as health aides fled in droves, unwilling to put up with his aggressive behavior.

For a while she was successful, Dorla, 57, said, and his behavior improved under her care. But the last year has beaten her down, and in an interview three weeks ago she said she felt like she was losing the fight.

After Dorla was laid off from her hospital job last year, the landlord kicked her and Thomas out after she fell behind on the rent. They moved in with a friend, but she soon discovered the regular health aide was leaving bruises on her father. The subsequent procession of aides made her friend's husband uncomfortable, so Dorla and her dad were once again without a home. They wound up at an extended-stay hotel that cost $100 a night, and spent hundreds more on a private aide for Thomas.

Dorla found a new job at a hospital and received financial help from her family but soon exhausted the funds. Her brother, visiting from Ohio, offered to take Thomas back with him, and she agreed, she said, with the understanding her brother would be caring for Thomas at home. When he and other family members proposed a nursing home instead, she relented, she said, because she could no longer afford the hotel and had nowhere left to turn.

"It was very traumatic," she said of sending her father to Ohio. "I felt like I had just written him off." She also felt guilt, she said, for not honoring her father's wish to never be placed in a facility.

Two weeks ago she began renting a room in Roosevelt.

"My goal now is to get proper housing again and get my father back here," she said. "I know it's going to be a fight, but it's what I have to do."

Then more than a week ago Dorla received a call from a family member that her dad's health had taken a downturn and that it was unlikely he would live more than another 24 hours. She tried to get a flight out to Ohio to see him but did not make it there before he died, on Dec. 16. She had not seen him since July and would later learn that his health had been in decline for two weeks.

"It's a mixed, bittersweet feeling," she said. "I just have to get rid of the guilt because that's what's really messing me up."

Dorla said she feels putting him back into a nursing home after he had made such improvements at home accelerated his decline. "I think he just gave up," she said. "I think he was heartbroken because he didn't see me or anyone else that he knew."

She said her resolve to be an advocate is stronger than ever now and she will continue to tell caregivers to constantly advocate for their loved ones' care once they are placed in a facility. "I feel so strongly about it," she said. "Daddy's gone, and I just have to move on. It's just that I feel that I contributed to him going so soon, and I'll have to try and get over that."

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