When Alison Boteler first became her mom's caregiver in 1998, it wasn't so bad.
Charla, now 80, had Alzheimer's disease, but it initially surfaced in fairly small ways. She would get confused about what day it was and was unable to pay bills. But she was, for the most part, still the mother that Alison grew up with. She was witty and charismatic and could be left in the house by herself while her daughter went out to run errands or do other tasks. Until a few years ago, she could even drive.
"I thoroughly enjoyed being her caregiver," said Boteler, 54, of Bridgeport. "She was a companion. The old mom was still there."
But the woman Alison Boteler is taking care of now bears little traces of her charming mother. She has trouble walking, sitting and standing. Frequently, Alison has to take Charla's hands to guide her through a room or into a sitting position. Charla hardly speaks anymore and can't do anything for herself. "It's just heartbreaking," Alison Boteler said.
It's gotten especially bad in the past year, she said, and it's put increasing emotional and financial stress on her as a caregiver. Because looking after her mom takes all her time and attention, Boteler can't work and has taken out a reverse mortgage on her house. "It's just a nightmare," she said.
It's a nightmare shared by an increasing number of people, according to a report issued Thursday by the national Alzheimer's Association.
According to its "2012 Alzheimer's Disease Facts and Figures," there are about 5.4 million people nationwide with Alzheimer's, 5.2 million of them age 65 and older. In 2000, about 4.5 million people in that age group had the illness, and 6.7 million are expected to have it by 2025.
There are 70,000 people with the illness in Connecticut, with an estimated 76,000 expected to be afflicted by 2025.
The number of those caring for a loved one with the illness is also rising. Nationally, there were 15.2 million friends and family members providing care for individuals with Alzheimer's and other forms of dementia in 2011, 174,000 in Connecticut.
Marked by memory loss and primarily affecting people over 65, Alzheimer's is the sixth leading cause of death in the nation.
Kristen Cusato, southwest regional director for the Alzheimer's Association of Connecticut said someone in America develops Alzheimer's every 68 seconds -- a figure that falls by a second every year. By 2050, an American will develop Alzheimer's every 33 seconds. "It seems to be getting out of control," said Cusato, who herself cares for a mother with dementia. "It's really scary."
Sally Harding has also noticed the increase of the illness among those she serves as director of client services at Elderhouse Adult Day Center in Norwalk. She estimates that the center takes care of about 55 people a week; of those, about 75 percent have some kind of dementia. "That's a number that's gone up every year," she said.
Despite the growing number of those affected by the disease, Cusato said the amount of money devoted to Alzheimer's research is far less than that spent on other illnesses. For instance, about $6 billion is spent on cancer research and roughly $4 billion is spent on heart disease, while only $500 million is spent on Alzheimer's.
That's unconscionable, considering how much Alzheimer's costs the country and its citizens, Cusato said. According to the report, caring for people with Alzheimer's is expected to cost the United States $200 billion in 2012 -- a figure expected to rise to $1.1 million by 2050. The cost of caring for the caregivers is also on the rise.
Boteler doesn't want to put her mother in a nursing home, and is sure that Charla can get the best care at home. It's a common situation that caregivers like Boteler face, Cusato said.
To help ease the burden, the Alzheimer's Association has a wide variety of support groups (visit www.alz.org/ct to find one near you).
Boteler and Cusato said there need to be more resources for caregivers in need of assistance. Boteler said she recently had a difficult time even finding someone to look after her mother while she went to a support group meeting. She doesn't know where this is headed, but she tries to count her blessings. Boteler said she remembers how frustrated she was in the early days of her mother's illness, and now she longs for those days.
"The one thing I've learned is that you don't know what you've got until it's gone," she said.
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