By Pete Pichaske, The Baltimore Sun
6:05 AM EST, November 7, 2013
Deborah Adler, mother of two teenagers, daughter of a highly successful businessman, with a successful career of her own in geriatrics, never expected to be caring for her ailing, 80-year-old father.
But when her mother died and her father was diagnosed with dementia a few years ago and, as his condition worsened, began needing more and more attention and help, it fell to Adler and her sister to help him.
"This was never supposed to happen," said Adler, 48, who lives in Clarksville and works as director of community relations for Copper Ridge, a facility in Sykesville that treats the memory impaired. "My father was supposed to predecease my mother. She was going to get a house with my sister — they were going to be the Golden Girls. I never expected to be in this situation.
"But life does not happen according to any plan."
Adler has joined two fast-growing segments of the population — caregivers who support a family member or other loved one who needs help and the "sandwich generation," the usually middle-aged men and women who are squeezed between caring for both a parent and their own children.
The growth of those groups is a national phenomenon, the subject of a growing number of books and websites with names like caregiver.org, familycaregiving101.org and caregiveraction.org.
It has been fueled, on one end, by a growing number of young adults who rely on their parents for support and, on the other, by an aging population that is living longer than ever and also is increasingly disinclined to move to a nursing home, instead choosing to remain where they are.
And, when they remain where they are — "aging in place," the experts call it — the seniors usually do so with the help of family members, typically a younger, healthier spouse or a grown child.
A 2009 survey by the Family Caregiver Alliance found that 3 in 10 adult Americans care for someone who is ill, disabled or aged.
A 2012 study by the Pew Research Center found that 47 percent of adults in their 40s and 50s have a parent 65 or older and either a young child or a grown child they support. About 1 in 7 of those middle-aged Americans financially support both a child and an aging parent.
Maryland has an estimated 1.1 million caregivers, according to 2012 figures from the Family Caregiver Alliance. Howard County has an estimated 56,000, which means nearly 1 in 5 county residents is caring at least part-time for a loved one, typically a family member, who is aged, ailing or disabled.
Many of those families rely on the county's Caregivers Support program, part of the Office on Aging, which offers an array of referral services. Those services include support groups (some run by the county, some by other organizations), respite and in-home care, and a limited number of grants that can be used to help pay for a variety of services, from respite care to dental care.
The number of caregivers who received grants increased by more than 50 percent in the past year, soaring from 119 to 186.
"And there would be in more if the funding were greater," said Valerie Liss the Office on Aging's Caregiver Educator. The need to help caregivers, she said, "is definitely a growing concern here."
Liss, a clinical social worker, also does home visits to help caregivers figure out how to better care for their loved one, and to listen to their concerns.
"I think they really appreciate having a sort of point person that they can talk to," said Liss. "I've had caregivers that I've had contact with for years."
"The emotional support that Valerie provides I think is really priceless," said Peggy Hoffman, division manager of the Office on Aging's Aging and Disability Resource Center.
Liss said the calls to her office "range anywhere from somebody just looking for a support group to really complicated cases. I had one recently where a grandmother was in a hotel with her two young grandchildren, and her money is running out and she doesn't know where to go."
Liss got the grandmother a grant to cover a few more days in the motel, and then found her and the grandchildren space in the county's Grassroots homeless shelter.
"We don't work in isolation," Hoffman said, noting that the office regularly works with agencies ranging from Grassroots to the faith-based community.
One of the county's newest efforts to help families is an annual daylong conference for caregivers. The first was held last year and attracted about 60 people. The second will be held Saturday, Nov. 9, at the North Laurel Community Center, and Hoffman said she expects twice as many participants.
The free event will include seminars on legal issues, managing stress and other topics, and a mock support group for those who might be curious about what is involved. In addition, Liss will meet one-on-one with caregivers with questions. Respite care will be provided, freeing caregivers to attend the workshops alone.
"We've had caregivers ask for something like this," Liss said. "Part of what happens with caregivers is they feel a great sense of isolation, that they're the only one in this type of situation. So for them to have an arena to come together at an event like this, it's very eye-opening for them, very comforting."
Clair Cohen, of Clarksville, who cares for her 70-year-old husband Jerry, attended last year's conference and plans to attend this year's as well.
"It's a one-stop shop for caregivers," Cohen said. "The information it took me six years to get and figure out, I could've gotten in one day there."
Seven years ago, Cohen's husband had a major stroke. He was forced to retire from his job as a senior software engineer, and, while she still works full time out of her home, she now also manages her husband's care. That means providing transportation to appointments and activities, ordering medications, doing all the home repairs and other home-related duties — the list is long.
She gets respite care eight hours a week and has relied on country resources that she calls invaluable, but the bulk of the care falls to her.
"You have to make so many decisions on your own," she said. "But I think I've become much stronger."
Colette Roberts agrees that being a caregiver is a life-changer.
Like Cohen, Roberts, of Columbia, cares for her husband. James Roberts, 80, a Rouse Co. executive for 25 years, was diagnosed with dementia five years ago and his condition has steadily worsened.
Today, he needs help with even simple tasks and is also prone to wandering, which means she must be constantly vigilant.
"If I step out for a minute, he'll go out and walk," said Roberts, 73. "The neighbors know, and they'll bring him home."
James Roberts has developed obsessive-compulsive tendencies, his wife said, which cause him to rearrange items at home and even in grocery stores, and also is struggling with incontinence.
"Oh my God, have I learned to be patient," Roberts said. "And I'm normally not a patient person. … It's like taking care of a 4-year-old again. That's what makes it difficult. … I love him to pieces, but I miss my husband."
Those county residents sandwiched between caring for parents and children face special challenges.
"I guess I always knew this might happen," said one such resident, Sharon Barnes, of Columbia. "I just thought I'd be able to plan it — that it wouldn't just happen so fast."
Barnes, 48, has two children, ages 4 and 8, and a stepdaughter in college. Her 72-year-old mother has lived with her for five years, and more recently, her mother-in-law, also 72, suffered a stroke and moved from New Jersey to live with Barnes as well.
The mother-in-law had been caring for her brother, but Barnes and her husband set him up in an assisted living facility nearby.
"We had no more rooms left," she explained.
A psychologist, Barnes said she does occasional consulting work, but very little. "I have a big job at home," she said.
"We have our tough days, but it's still new and we're working to figure it out," she said. "I just think it's that stage of life we're in. If you live long enough, this will happen."
As for Deborah Adler, she might have been surprised by her father's sudden reliance on her, but she has adapted.
Her father lives in Florida, which means no day-to-day caregiving, but presents its own challenges. She and her sister have to oversee his care long distance — hiring caretakers, drivers and geriatricians, supervising his finances, and so on. Adler visits him every other month, more if there is a crisis, and calls two or three times a week.
And even long distance, she faces the same challenges other caregivers do — dealing with someone whose declining health sometimes makes them difficult.
"My father's in the gray area between competency and incompetency," she said. "He's not willing to accept our help all the time. If you help when he doesn't want help, you're going to get screamed at."
Adler said she is fortunate to have a sister to share the caregiving, and to work in the field of geriatrics, which makes her more familiar than most with what is needed and what resources are available.
Moreover, she said, her husband and children understand her devotion to her father, including her frequent trips to Florida.
"They understand that 'Pops' is declining and he needs help, and sometimes I have to go down there," she said. "But sometimes it's really hard. My son plays soccer (for River Hill High School), and I have to miss games. But you sort of just have to weigh everything."