Book shares grief, pain, joy of caring for husband with Alzheimer's

Marilynn Garzione, the author of "Released to the Angels: The Hidden Gifts of Alzheimer's," at Vassar College where she teaches. Marilynn Garzione's husband, Patrick Garzione, died of Alzheimer's disease in 2007.

Having been both the daughter and the wife of men who have succumbed to Alzheimer's disease, Marilynn Garzione speaks from experience when she says, "Alzheimer's is a horrible disease."

Yet, as an author, she touches on the other extreme, describing the positive moments Alzheimer's can bring. Her book, "Released to the Angels," is subtitled, "The Hidden Gifts of Alzheimer's." Now available through Amazon.com and Barnes & Noble, it originally was intended as a therapeutic journal for herself. She created its brief anecdotes and observations in early morning writing sessions, while her husband slept.

Garzione acknowledges great challenges come with Alzheimer's - for the patient and the caregiver. People with the disease can experience loss of language, the inability to perform simple daily tasks, incontinence, a reluctance to accept medicine or food, frustration over limited faculties - which can spur verbal or physical violence - and obsessive or wandering behaviors that require a caregiver to be on guard around the clock.

In her book, Garzione admits she reached "the point of pure exhaustion and helplessness" while caring for her husband, and wondered, "how I can possibly continue to meet his needs." Still, she recalls, "I knew that I had choices."

Garzione credits her husband, Patrick Garzione, who died in 2007, with helping her spot those affirmative choices. As can be seen in family photos shared on her Web site, www.releasedtotheangels.com, her husband was a man of great playfulness and wit - sometimes at unexpected moments.

"I think my attitude reflected what Pat always believed," she said, "that we can experience all moments - good and bad - and deliberately choose to give as much power to the positive as we do to the negative."

Patrick Garzione had spent 20 years as a priest. When he left the priesthood and eventually married, "He kept his faith," his widow recalled. Even through the Alzheimer's, "It never left him."

Before developing the disease, her husband had been well spoken and an intelligent and witty writer. However, during his illness, his wife was able to appreciate his triumphs in expressing simpler needs:

For instance, in her book, Garzione relates how, when it grew dark in the house, and he no longer remembered how to turn on the light, he asked her, "Can you make it bigger in here?" Disappointed after a look in the mirror, he requested of her, "Can you get me more hair?"

She also describes how her husband took special pleasure in things such as fireflies and clouds during his eight-year illness. He had not noticed them with the same awe during the 23 years of their marriage before his diagnosis. One day, when she drove them over railroad tracks, she heard him chuckle at the unexpected jolt in a smooth ride, though most adults have long ago stopped appreciating such things.

Garzione explained why she gave such moments generous space and a positive light.

"People could see that with great sadness," she said. "I saw it with great joy. I saw it through his eyes. I could see his joy."

Garzione, who teaches conversational Spanish as part of the adjunct faculty at Vassar College, explained how her vocation mixed with her outlook on life helped her accentuate the positive.

"I'm used to taking people with a limited use of a language, and helping them to communicate what they want to say," she said.

She emphasized, however, that this outlook can be adopted by anyone living with or caring for an Alzheimer's patient. The secret, Garzione said, is "living in the present."

Remaining in the past, dwelling on what a loved one has lost, can lead to frustration and sadness. Imagining what the future holds can be equally distressing. That leaves a nonjudgmental appreciation of the current moment.

Garzione also discovered a nonverbal way to communicate with her husband and calm him when loss of memory and comprehension added to his frustration. An accomplished musician, she played the piano for him when he became restless, fitting in snippets of musical pieces he had loved. Despite his seeming loss of touch with his past, he responded to the familiar tunes and relaxed.

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Friends who heard her play encouraged her to make the music available to others. Garzione created a CD that is now available through her Web site. It has amazed her, she said, when she heard from others that the music, geared so personally to her husband's needs, had succeeded in soothing their loved ones as well.

"I've received some nice letters" she said.

The Orange County author saw how a person with Alzheimer's can undergo severe personality changes that can distress and even endanger loved ones. However, she also had the chance to see how the old personality can come through, albeit in a new form.

As she describes in her book, caring for his wife had always been a priority for her husband. Even when deeply affected by Alzheimer's disease, he kept trying to continue that care.

She offers several examples. One occurred when she went to bed with a bad cold, and her husband decided to make her a meal. She worried about the danger of his using the stove, until he announced he would make her "That round thing with white on it," and she realized she was to be treated to a bagel and cream cheese. Describing the proud success her husband experienced when he served his creation, she writes:

"It was the best frozen-solid bagel I've ever eaten."

Because of her husband's wishes expressed prior to his illness, the couple did not pursue a definitive diagnosis until his cognitive functions had been severely affected.

At that time, Garzione made the decision to override his earlier wishes. The positive diagnosis allowed for prescriptions that eased some of his symptoms.

Even then, Garzione did not pursue available support for herself. "I was a type who doesn't reach out," she explained.

It wasn't until after her husband's death in 2007 that Garzione first entered the Poughkeepsie offices of the local chapter of the Alzheimer's Association, which offers free services including support groups, training, a library of Alzheimer's information, public awareness raising and a 24-hour hot line.

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Even at that point, it wasn't Garzione's need for support, but her writings about her husband's illness that had brought her there.

"A few months after Pat's death, people were saying, 'You have to do something with this manuscript,'" she recalled. Still, she hesitated, "I never wrote it for that."

Then, she saw an Alzheimer's Association newsletter in which the words of its president and CEO, Elaine Sproat, convinced her that her story might indeed be valuable to others.

"Elaine Sproat had written something like, 'These stories must be told.' That opened my heart. I went there, and they all just reached out to me," she said.

With their encouragement, Garzione pursued publication of her manuscript. Since then, she has worked with the chapter to raise awareness about the effects of Alzheimer's and the growing numbers of those with the disease. She has traveled with staff members and supporters to Albany and Washington and spoken at events emphasizing the need for funding to find a cure. She has seen how effective the local chapter's programs would have been for her and her husband.

"Now, I can say to others, 'Reach out to the people around you. You cannot do this alone. You will think you can for a while, but it's an illusion,'" she said.

Each fall, the Alzheimer's Association sponsors Memory Walks around the country to raise funds and increase awareness. As in prior years, Garzione plans to attend the Dutchess County walk, which touches off at Dutchess Community College at 10 a.m. Saturday.

"I'm going to try to hit some of the other ones as well," she said. "It's good for the soul."

Friends who heard her play encouraged her to make the music available to others. Garzione created a CD that is now available through her Web site. It has amazed her, she said, when she heard from others that the music, geared so personally to her husband's needs, had succeeded in soothing their loved ones as well.

"I've received some nice letters" she said.

The Orange County author saw how a person with Alzheimer's can undergo severe personality changes that can distress and even endanger loved ones. However, she also had the chance to see how the old personality can come through, albeit in a new form.

As she describes in her book, caring for his wife had always been a priority for her husband. Even when deeply affected by Alzheimer's disease, he kept trying to continue that care.

She offers several examples. One occurred when she went to bed with a bad cold, and her husband decided to make her a meal. She worried about the danger of his using the stove, until he announced he would make her "That round thing with white on it," and she realized she was to be treated to a bagel and cream cheese. Describing the proud success her husband experienced when he served his creation, she writes:

"It was the best frozen-solid bagel I've ever eaten."

Because of her husband's wishes expressed prior to his illness, the couple did not pursue a definitive diagnosis until his cognitive functions had been severely affected.

At that time, Garzione made the decision to override his earlier wishes. The positive diagnosis allowed for prescriptions that eased some of his symptoms.

Even then, Garzione did not pursue available support for herself. "I was a type who doesn't reach out," she explained.

It wasn't until after her husband's death in 2007 that Garzione first entered the Poughkeepsie offices of the local chapter of the Alzheimer's Association, which offers free services including support groups, training, a library of Alzheimer's information, public awareness raising and a 24-hour hot line.

(4 of 4)

Even at that point, it wasn't Garzione's need for support, but her writings about her husband's illness that had brought her there.

"A few months after Pat's death, people were saying, 'You have to do something with this manuscript,'" she recalled. Still, she hesitated, "I never wrote it for that."

Then, she saw an Alzheimer's Association newsletter in which the words of its president and CEO, Elaine Sproat, convinced her that her story might indeed be valuable to others.

"Elaine Sproat had written something like, 'These stories must be told.' That opened my heart. I went there, and they all just reached out to me," she said.

With their encouragement, Garzione pursued publication of her manuscript. Since then, she has worked with the chapter to raise awareness about the effects of Alzheimer's and the growing numbers of those with the disease. She has traveled with staff members and supporters to Albany and Washington and spoken at events emphasizing the need for funding to find a cure. She has seen how effective the local chapter's programs would have been for her and her husband.

"Now, I can say to others, 'Reach out to the people around you. You cannot do this alone. You will think you can for a while, but it's an illusion,'" she said.

Each fall, the Alzheimer's Association sponsors Memory Walks around the country to raise funds and increase awareness. As in prior years, Garzione plans to attend the Dutchess County walk, which touches off at Dutchess Community College at 10 a.m. Saturday.

"I'm going to try to hit some of the other ones as well," she said. "It's good for the soul."

Even at that point, it wasn't Garzione's need for support, but her writings about her husband's illness that had brought her there.

A few months after Pat's death, people were saying, 'You have to do something with this manuscript,'" she recalled. Still, she hesitated, "I never wrote it for that."

Then, she saw an Alzheimer's Association newsletter in which the words of its president and CEO, Elaine Sproat, convinced her that her story might indeed be valuable to others.

"Elaine Sproat had written something like, 'These stories must be told.' That opened my heart. I went there, and they all just reached out to me," she said.

With their encouragement, Garzione pursued publication of her manuscript. Since then, she has worked with the chapter to raise awareness about the effects of Alzheimer's and the growing numbers of those with the disease. She has traveled with staff members and supporters to Albany and Washington and spoken at events emphasizing the need for funding to find a cure. She has seen how effective the local chapter's programs would have been for her and her husband.

"Now, I can say to others, 'Reach out to the people around you. You cannot do this alone. You will think you can for a while, but it's an illusion,'" she said.

Each fall, the Alzheimer's Association sponsors Memory Walks around the country to raise funds and increase awareness. As in prior years, Garzione plans to attend the Dutchess County walk, which touches off at Dutchess Community College at 10 a.m. Saturday.

"I'm going to try to hit some of the other ones as well," she said. "It's good for the soul."

Marji Yablon, a writer and voice-over performer, is a long-time resident of Ulster County. Reach her at marjipearl@juno.com.

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Before developing the disease, her husband had been well spoken and an intelligent and witty writer. However, during his illness, his wife was able to appreciate his triumphs in expressing simpler needs:

For instance, in her book, Garzione relates how, when it grew dark in the house, and he no longer remembered how to turn on the light, he asked her, "Can you make it bigger in here?" Disappointed after a look in the mirror, he requested of her, "Can you get me more hair?"

She also describes how her husband took special pleasure in things such as fireflies and clouds during his eight-year illness. He had not noticed them with the same awe during the 23 years of their marriage before his diagnosis. One day, when she drove them over railroad tracks, she heard him chuckle at the unexpected jolt in a smooth ride, though most adults have long ago stopped appreciating such things.

Garzione explained why she gave such moments generous space and a positive light.

"People could see that with great sadness," she said. "I saw it with great joy. I saw it through his eyes. I could see his joy."

Garzione, who teaches conversational Spanish as part of the adjunct faculty at Vassar College, explained how her vocation mixed with her outlook on life helped her accentuate the positive.

"I'm used to taking people with a limited use of a language, and helping them to communicate what they want to say," she said.

She emphasized, however, that this outlook can be adopted by anyone living with or caring for an Alzheimer's patient. The secret, Garzione said, is "living in the present."

Remaining in the past, dwelling on what a loved one has lost, can lead to frustration and sadness. Imagining what the future holds can be equally distressing. That leaves a nonjudgmental appreciation of the current moment.

Garzione also discovered a nonverbal way to communicate with her husband and calm him when loss of memory and comprehension added to his frustration. An accomplished musician, she played the piano for him when he became restless, fitting in snippets of musical pieces he had loved. Despite his seeming loss of touch with his past, he responded to the familiar tunes and relaxed.

(3 of 4)

Friends who heard her play encouraged her to make the music available to others. Garzione created a CD that is now available through her Web site. It has amazed her, she said, when she heard from others that the music, geared so personally to her husband's needs, had succeeded in soothing their loved ones as well.

"I've received some nice letters" she said.

The Orange County author saw how a person with Alzheimer's can undergo severe personality changes that can distress and even endanger loved ones. However, she also had the chance to see how the old personality can come through, albeit in a new form.

As she describes in her book, caring for his wife had always been a priority for her husband. Even when deeply affected by Alzheimer's disease, he kept trying to continue that care.

She offers several examples. One occurred when she went to bed with a bad cold, and her husband decided to make her a meal. She worried about the danger of his using the stove, until he announced he would make her "That round thing with white on it," and she realized she was to be treated to a bagel and cream cheese. Describing the proud success her husband experienced when he served his creation, she writes:

"It was the best frozen-solid bagel I've ever eaten."

Because of her husband's wishes expressed prior to his illness, the couple did not pursue a definitive diagnosis until his cognitive functions had been severely affected.

At that time, Garzione made the decision to override his earlier wishes. The positive diagnosis allowed for prescriptions that eased some of his symptoms.

Even then, Garzione did not pursue available support for herself. "I was a type who doesn't reach out," she explained.

It wasn't until after her husband's death in 2007 that Garzione first entered the Poughkeepsie offices of the local chapter of the Alzheimer's Association, which offers free services including support groups, training, a library of Alzheimer's information, public awareness raising and a 24-hour hot line.

(4 of 4)

Even at that point, it wasn't Garzione's need for support, but her writings about her husband's illness that had brought her there.

"A few months after Pat's death, people were saying, 'You have to do something with this manuscript,'" she recalled. Still, she hesitated, "I never wrote it for that."

Then, she saw an Alzheimer's Association newsletter in which the words of its president and CEO, Elaine Sproat, convinced her that her story might indeed be valuable to others.

"Elaine Sproat had written something like, 'These stories must be told.' That opened my heart. I went there, and they all just reached out to me," she said.

With their encouragement, Garzione pursued publication of her manuscript. Since then, she has worked with the chapter to raise awareness about the effects of Alzheimer's and the growing numbers of those with the disease. She has traveled with staff members and supporters to Albany and Washington and spoken at events emphasizing the need for funding to find a cure. She has seen how effective the local chapter's programs would have been for her and her husband.

"Now, I can say to others, 'Reach out to the people around you. You cannot do this alone. You will think you can for a while, but it's an illusion,'" she said.

Each fall, the Alzheimer's Association sponsors Memory Walks around the country to raise funds and increase awareness. As in prior years, Garzione plans to attend the Dutchess County walk, which touches off at Dutchess Community College at 10 a.m. Saturday.

"I'm going to try to hit some of the other ones as well," she said. "It's good for the soul."