Bernice Osborne Pollard has just returned home from her day job, working for an organization that services youth mentoring programs. Now she’s home, it’s time to begin her second job: taking care of her one-year-old daughter and her 75-year-old mother, who has Alzheimer’s disease.
Bernice briefly greets her husband. And then she scoops up baby Kristina and carries her up the back staircase to the second floor of this three-story house in Dorchester that her family shares with her parents and her older sister.
Upstairs, Bernice’s mother, Mary Osborne, is slumped in a chair. She’s unable to talk, walk or feed herself. Mary was diagnosed with Alzheimer’s almost 10 years ago. At that time, she had just retired and had exciting plans for the future, but the disease changed all that.
"Her and my father had plans of traveling and enjoying retirement and doing all kinds of things," Bernice said. "I don’t what you guys planned on doing, but I know that they had big dreams, but that all changed when she was diagnosed, all of our lives changed, pretty much."
Mary’s health deteriorated rapidly, and Bernice and the family committed to care for her at home.
"Well, my mother always used to say that if we put her in a nursing home, she would haunt us," she Bernice said laughing. "But aside from that, we didn’t want to put her in a nursing home. We just wanted to keep her close and be able to care for her ourselves. She would get the care, but she wouldn’t get the love and so we wanted to be able to take care of her ourselves at home."
Taking care of Mary at home is a challenge. Mary used to visit an adult day-care program, but now she’s too ill to leave the house and requires the help of two and sometimes three people at a time. Bernice and her sister Brenda Osborne juggle part-time jobs and take turns throughout the week looking after their mother. The state provides Mary with a personal care attendant six hours a week. And the family pays another carer about $1,600 a month to come in and provide extra help. But Brenda says she sometimes feels the system is stacked against them.
"The government doesn’t do anything because they have no tax incentives to say you worked and you’re losing time, let’s do something for you," Brenda said. "Even for myself, even if you worked hard and you put some away, you get penalized. You know, it’s a major sacrifice. For instance, they gave us a bed in two thousand whatever. 1/24/2012, they said you know your services are over, 1/25 here they come first thing in the morning. Oh, we want the bed!”
And then there are the emotional costs Bernice and Brenda have struggled with, caring for their mother. Costs that Bernice is all too aware of when she recalls moments like this:
“It was Thanksgiving morning, I don’t know how many years ago, but I’ll never forget it, and I went into the bathroom and she just started hitting me, and I couldn’t take it and I dropped the rag and I just walked out the bathroom and I was like, 'Dad, I’m not going in there, I’m not doing it anymore, it’s your wife, you do it, I’m not doing it anymore,'" she said. And he was like, 'You gotta take a deep breath, calm down, 'cause I was crying and he waited a couple of minutes and then he patted me on the back, and he said, 'You gotta go in there and take care of your mum.' You know, cause he couldn’t do it, because he has a lung disease, so he couldn’t do it.”
According to a recent study by the RAND Corporation, by the year 2040, the number of people with dementia, and the costs of caring for them, will more than double.
And as the baby boomer generation gets older, there will be another problem.
"The projection, as our population ages, is for an even more challenging future," says Dr. Richard Hodes, director of the National Institute on Aging which supported the RAND research.
"Not only as the number of older people increases, but as the number of younger people proportionately who are the caregivers, important in taking care of them, is going to decrease. So the actual challenge in caring for the increasing numbers of people with Alzheimer’s is going to increase even beyond those sobering numbers that you’ve quoted."
Back in Dorchester, 48-year-old Brenda has spent almost a decade caring for her mother. Without any children of her own, she sometimes wonders who will care for her in her old age.
"You know, I tell my sister, I never had any children, so I’m hoping someone might take care of me, not quite sure,” she said. "They say people who take care of their family members, it takes ten years off their life, and I can definitely see why.”
But Brenda says that she and her sister Bernice try not to look too far into the future. They’re just trying to get through each day.
Related Links:
