THE past year has been one of grieving and loss for Tony Iero, whose longtime partner, Paul Myers, passed away in May of Alzheimer’s-related pneumonia, his body failing him years after his mind. His ashes are enclosed in a box on a bookshelf in Mr Iero’s Philadelphia home.
Bill Clinton’s wife, Dorothy, has further succumbed to the disease to the point where she can no longer walk. She is confined to a wheelchair in the family room of their home in the suburbs of Philadelphia. She babbles nonsensically. And for Corrine Sylvia, it has been a year of transitions. Her husband, Donald Nye, is in the middle stages of Alzheimer’s. He can still carry on a conversation though words increasingly escape him. He now needs an escort on the short walks he takes in his neighbourhood, outings he did by himself just a year ago. Last week he got lost in his co-op building in Philadelphia while taking the trash out.
Mr Iero, Mr Clinton and Ms Sylvia all attend an Alzheimer’s-caregivers-support group at the University of Pennsylvania’s Penn Memory Center. A year ago they allowed us to get a glimpse into their daily lives caring for a loved one with the disease. One year later, they shared their stories again. Ms Sylvia is one of the more fortunate ones. Her husband, Don, can still carry on a conversation. They banter back and forth. His sense of humour is still strong. So is hers.
"He still watches TV, he loves Downton Abbey," says Ms Sylvia. "We can go back and watch season 3 now because he doesn’t remember."
Mr Nye has taken up a new hobby: watercolour painting. He needed to find something to occupy his hands, as he began to hurt himself by digging into his skin — part of the obsessive-compulsive traits that can come with Alzheimer’s, Ms Sylvia says.
He attended an Alzheimer’s Association-sponsored watercolour-painting class last year in September and has been painting ever since. "It’s just easier because his ability to learn is severely impacted," she says. "This is a way for him to use his hands and still express himself."
Mr Nye, who was diagnosed with Alzheimer’s about one-and-a-half years ago, can still microwave food and feed and clothe himself but it has gotten much harder, says Ms Sylvia. "Many days the clothes are on backward or inside out or both," she says.
Ms Sylvia, who runs a nonprofit consulting business from home, can no longer leave her husband home alone for more than an hour or two, which has affected her business. Mr Nye is aware of what’s happening to him. "It’s going faster than I thought," he says about his Alzheimer’s. "I have a lisp now that I didn’t have and I have difficulty with some words that I can’t find when I need them.
"I wish I didn’t have the dis-, the Alzheimer’s," he says. "You want it?" he asks, with a laugh.
Over the past year Mr Clinton’s wife, who goes by Dot, has become immobile. "She’s permanently in a wheelchair now," says Mr Clinton. "I put a hospital bed in the family room on the first floor and that’s where she sleeps now."
Mr Clinton also bought a special chair that helps his wife up, so he doesn’t have to lift her as much. Right off the family room there is a laundry room. "We wheel her into the laundry room to give her a body wash," he says. He has also purchased a disabled-accessible van and installed ramps for the disabled at the family’s summer home on the Jersey shore.
Mrs Clinton, who is 70, can no longer feed herself. She doesn’t make sense when she talks but still shows signs of recognition of some of her family members and calls them by name occasionally. Mr Clinton put his wife in a full-time facility just once, when he took a vacation to China last year. On weekdays she goes to an adult day-care facility. In April, he is planning a two-week trip to Scandinavia and will try a different nursing home.
"I want to keep her at home as long as we can, as long as my health stays pretty stable," he says. "But we’re realistic to the point that we know maybe at some point in time, we may have to."
He continues to rely on help from a son who moved back home and his daughter, also named Dorothy Clinton, who stays over on weekends. The younger Ms Clinton, who goes by Dar, says the physical strain of taking care of her mother has gotten harder. A former hairstylist, she suffers from tendinitis and carpal tunnel. "Just putting her shirt on is a struggle."
Last year, Dar organised a team for the Walk to End Alzheimer’s fundraiser in Philadelphia, raising close to $7,000 in donations. The team was called It’s a Privilege, because taking care of her mom, she says, is always a privilege, never a burden. "It’s been a sad year because my mom’s gotten so much worse," she says. "But the outpouring of love for my mom, it’s just amazing."
On May 1, Paul Myers passed away at age 71, ending a long bout with Alzheimer’s. For the last 18 months of his life, he lived in a full-time care facility for dementia patients in Yardley, Pennsylvania. His longtime partner, Mr Iero, visited him three times a week, bringing a multiple-course dinner every time
Mr Iero had a Catholic service at a church in Philadelphia where Mr Myers had been an altar boy and went to school. He gave a eulogy about their 34 years together. Mr Myers was cremated and his ashes remain in a box at home on Mr Iero’s bookshelf, which has become a small memorial to Mr Myers. There is a flag he was given when he served in the US Air Force. A shamrock representing his Irish heritage. Rosary beads. A picture of them from when they first met.
"When I think of him, I call his name out loud," Mr Iero says.
Though Mr Myers’s death has provided some closure, Mr Iero says his memories of him have been marred by the disease. "I don’t see him a healthy Paul like I did when I first met him. I see him the last nine years. I need to overcome that."
He still attends the caregivers-support group at Penn Memory Center. "If I can help them out in any way, I want to," Mr Iero says. In some ways it is a relief, he says, not having to drive 40 minutes each way to the nursing home, preparing dinners ahead of time, and having to leave Mr Myers at night. "I did it out of necessity" Mr Iero says. "It’s behind me now and it’s a relief even though I would have continued to do it forever if I had to."
Mr Iero, who works in the IT department of a hospital, had to cut into his retirement savings to help pay the $7,100-a-month cost of the nursing home. "Although caring for someone you love with Alzheimer’s disease is very time consuming and expensive, I don’t regret any of it nor would I have done anything differently," he says.
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THE past year has been one of grieving and loss for Tony Iero, whose longtime partner, Paul Myers, passed away in May of Alzheimer’s-related pneumonia, his body failing him years after his mind. His ashes are enclosed in a box on a bookshelf in Mr Iero’s Philadelphia home.
Bill Clinton’s wife, Dorothy, has further succumbed to the disease to the point where she can no longer walk. She is confined to a wheelchair in the family room of their home in the suburbs of Philadelphia. She babbles nonsensically. And for Corrine Sylvia, it has been a year of transitions. Her husband, Donald Nye, is in the middle stages of Alzheimer’s. He can still carry on a conversation though words increasingly escape him. He now needs an escort on the short walks he takes in his neighbourhood, outings he did by himself just a year ago. Last week he got lost in his co-op building in Philadelphia while taking the trash out.
Mr Iero, Mr Clinton and Ms Sylvia all attend an Alzheimer’s-caregivers-support group at the University of Pennsylvania’s Penn Memory Center. A year ago they allowed us to get a glimpse into their daily lives caring for a loved one with the disease. One year later, they shared their stories again. Ms Sylvia is one of the more fortunate ones. Her husband, Don, can still carry on a conversation. They banter back and forth. His sense of humour is still strong. So is hers.
"He still watches TV, he loves Downton Abbey," says Ms Sylvia. "We can go back and watch season 3 now because he doesn’t remember."
Mr Nye has taken up a new hobby: watercolour painting. He needed to find something to occupy his hands, as he began to hurt himself by digging into his skin — part of the obsessive-compulsive traits that can come with Alzheimer’s, Ms Sylvia says.
He attended an Alzheimer’s Association-sponsored watercolour-painting class last year in September and has been painting ever since. "It’s just easier because his ability to learn is severely impacted," she says. "This is a way for him to use his hands and still express himself."
Mr Nye, who was diagnosed with Alzheimer’s about one-and-a-half years ago, can still microwave food and feed and clothe himself but it has gotten much harder, says Ms Sylvia. "Many days the clothes are on backward or inside out or both," she says.
Ms Sylvia, who runs a nonprofit consulting business from home, can no longer leave her husband home alone for more than an hour or two, which has affected her business. Mr Nye is aware of what’s happening to him. "It’s going faster than I thought," he says about his Alzheimer’s. "I have a lisp now that I didn’t have and I have difficulty with some words that I can’t find when I need them.
"I wish I didn’t have the dis-, the Alzheimer’s," he says. "You want it?" he asks, with a laugh.
Over the past year Mr Clinton’s wife, who goes by Dot, has become immobile. "She’s permanently in a wheelchair now," says Mr Clinton. "I put a hospital bed in the family room on the first floor and that’s where she sleeps now."
Mr Clinton also bought a special chair that helps his wife up, so he doesn’t have to lift her as much. Right off the family room there is a laundry room. "We wheel her into the laundry room to give her a body wash," he says. He has also purchased a disabled-accessible van and installed ramps for the disabled at the family’s summer home on the Jersey shore.
Mrs Clinton, who is 70, can no longer feed herself. She doesn’t make sense when she talks but still shows signs of recognition of some of her family members and calls them by name occasionally. Mr Clinton put his wife in a full-time facility just once, when he took a vacation to China last year. On weekdays she goes to an adult day-care facility. In April, he is planning a two-week trip to Scandinavia and will try a different nursing home.
"I want to keep her at home as long as we can, as long as my health stays pretty stable," he says. "But we’re realistic to the point that we know maybe at some point in time, we may have to."
He continues to rely on help from a son who moved back home and his daughter, also named Dorothy Clinton, who stays over on weekends. The younger Ms Clinton, who goes by Dar, says the physical strain of taking care of her mother has gotten harder. A former hairstylist, she suffers from tendinitis and carpal tunnel. "Just putting her shirt on is a struggle."
Last year, Dar organised a team for the Walk to End Alzheimer’s fundraiser in Philadelphia, raising close to $7,000 in donations. The team was called It’s a Privilege, because taking care of her mom, she says, is always a privilege, never a burden. "It’s been a sad year because my mom’s gotten so much worse," she says. "But the outpouring of love for my mom, it’s just amazing."
On May 1, Paul Myers passed away at age 71, ending a long bout with Alzheimer’s. For the last 18 months of his life, he lived in a full-time care facility for dementia patients in Yardley, Pennsylvania. His longtime partner, Mr Iero, visited him three times a week, bringing a multiple-course dinner every time
Mr Iero had a Catholic service at a church in Philadelphia where Mr Myers had been an altar boy and went to school. He gave a eulogy about their 34 years together. Mr Myers was cremated and his ashes remain in a box at home on Mr Iero’s bookshelf, which has become a small memorial to Mr Myers. There is a flag he was given when he served in the US Air Force. A shamrock representing his Irish heritage. Rosary beads. A picture of them from when they first met.
"When I think of him, I call his name out loud," Mr Iero says.
Though Mr Myers’s death has provided some closure, Mr Iero says his memories of him have been marred by the disease. "I don’t see him a healthy Paul like I did when I first met him. I see him the last nine years. I need to overcome that."
He still attends the caregivers-support group at Penn Memory Center. "If I can help them out in any way, I want to," Mr Iero says. In some ways it is a relief, he says, not having to drive 40 minutes each way to the nursing home, preparing dinners ahead of time, and having to leave Mr Myers at night. "I did it out of necessity" Mr Iero says. "It’s behind me now and it’s a relief even though I would have continued to do it forever if I had to."
Mr Iero, who works in the IT department of a hospital, had to cut into his retirement savings to help pay the $7,100-a-month cost of the nursing home. "Although caring for someone you love with Alzheimer’s disease is very time consuming and expensive, I don’t regret any of it nor would I have done anything differently," he says.
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