A friend sent me this piece from The New York Times. Although it doesn’t completely pertain to Alzheimer’s and dementia (a 13-year-old girl helps care for her grandfather who suffers from dementia), I think this is a very poignant story and I am incredibly please to see this piece come out.
Caregiving is a draining, difficult role — no matter your age. I always say my situation could be a lot worse. It could be. I know one caregiver/friend whose father was diagnosed when she was 20 or 21. The whole of her 20’s have consumed with her dad’s disease, and this is the kind of disease that will take a toll on you emotionally; it will change you and affect you in a tremendously profound way… from your approach to life to personal relationships, etc.
I have, however, read devastating accounts of parents developing early-onset Alzheimer’s disease. What does this mean? It means their children are young, really young… in some cases 11, 12, 13. These children are on the frontlines and frankly, it’s not fair. When I read these stories, I can’t imagine there is a loving God. You try to look at what lessons can be learned, you say, ‘well this will give them strength,’ you make up any excuse to justify this sick, twisted turn of fate. Well, it’s a lie. It’s brutally wrong. There is no lesson to be learned. There is no reason for this to happen. Watching your parent fail, flounder and forget is crushing, especially when you are so young… and participating in their everyday caregiving is horrifying.
In Turnabout, Children Take Caregiver Role
By PAM BELLUCK
LANTANA, Fla. — Partly paralyzed, with diabetes and colitis, Linda Lent needs extensive care at home.
But with her husband working long hours at a bowling alley, Ms. Lent, 47, relies on a caregiver who travels by school bus toting a homework-filled backpack: her 13-year-old daughter, Annmarie.
Annmarie injects migraine medicine, dispenses pills, takes blood from her mother’s finger for tests and responds to seizures — responsibilities she has at times found overwhelming.
At 11, she said, she felt “fed up,” thinking: “There’s no law says I have to take care of her. Why should I have to do it? Other kids, they could go out and play with friends.”
Across the country, children are providing care for sick parents or grandparents — lifting frail bodies off beds or toilets, managing medication, washing, feeding, dressing, talking with doctors. Schools, social service agencies and health providers are often unaware of those responsibilities because families members may be too embarrassed, or stoic.
Some children develop maturity and self-esteem. But others grow anxious, depressed or angry, sacrifice social and extracurricular activities and miss — or quit — school.
“Our society thinks of children as being taken care of; it doesn’t think of children as taking care of anybody,” said Carol Levine, director of families and health care at United Hospital Fund, a health services organization that studied child caregivers.
“Kids who do it well gain confidence,” Ms. Levine said, but “they may be resentful, not do as well in school and feel limited because their role is to be the caregiver.”
Health organizations are increasingly “realizing the extent of what children are doing,” said Nancy Law, an executive vice president of the National Multiple Sclerosis Society. “Everything from children who become overly responsible” to “the kid who totally rebels and gets into trouble.”
“This is an issue that’s growing,” she said.
A 2005 nationwide study suggested that about 3 percent of households with children ages 8 to 18 included child caregivers. Experts say they expect the numbers to grow as chronically ill patients leave hospitals sooner and live longer, the recession compels patients to forgo paid help and veterans need home care.
Recently, programs have been formed to help children find support. Several Florida schools now have classes and meetings regarding caregiving.
Other countries do more. In Britain and Australia, the census counts child caregivers, and many of them have rights to participate in patient-care discussions and to ask agencies for help or compensation.
Hundreds of programs help them, said Saul Becker, a sociology professor at the University of Nottingham. “It’s such a big issue.”
Experts say that in the United States, the issue is often hidden.
“It is embarrassing for grownups to admit they’re so helpless that a child is caring for them,” said Kim Shifren, a psychology professor at Towson University, who studies child caregivers and was one herself.
Ms. Levine said children worried that “friends won’t understand and if some outsider sees they’re doing all this stuff there may be problems for the family.”
Michael Anderson II, 12, of Boynton Beach, Fla., said, “I don’t really talk to people about it.” His mother, Iris Santiago, 43, is legally blind, anemic and has depression and hernias. Michael gives B12 injections, helps with medicine and guides her when she walks — “my seeing-eye boy,” she calls him.
Some, like Alyssa Morano, 12, of Lantana, face recalcitrant patients.
“If I find any in the garbage, I take it out,” said Alyssa, who shares her grandmother’s room and has even helped her put on underwear. “She lays down all the time. I can tell she’s getting kind of weaker every day.”
Ms. Black, who cannot walk far or sit up long, said, “I know my limits.” But she says Alyssa tells her, “ ‘Go to your doctor, Grandma, you’re going to die.’ ” And when visiting the doctor, Ms. Black said, “When I say an answer she don’t like, like he will ask me are you doing exercise, she will say, ‘No you’re not.’ ”
Programs for child caregivers face challenges because parents may fear that “you’re taking away their role as a parent” or that protective service agencies will be called, said Gail Hunt, president of the National Alliance for Caregiving.
Ms. Levine said that rather than a response of “Oh, take the child out of the home,” a program’s priority should be “making the responsibilities appropriate.”
Many programs simply offer children a break from their responsibilities.
The Caregiving Youth Project in Florida offers the most comprehensive approach, holding weekend camps to give children breaks and teach them caregiving skills. It counsels families and conducts classes and meetings in schools.
“It hasn’t been something teachers looked at, but some of the kids end up acting out at school,” said the director, Connie Siskowski.
Or dropping out, like Maryangellis Rodriguez, of Boynton Beach, who quit school at 16 to care for her mother, who has multiple sclerosis. “I just did it ’cause that’s my mom,” she said.
Ann Faraone, director of student intervention for the Palm Beach School District, says the project helps scores of students whose teachers had been unaware of their caregiver status.
“Families don’t come forward,” Ms. Faraone said. “Now, school personnel are better equipped to deal with these children.”
Experts say many child caregivers are from single-parent, low-income families, including some from foreign cultures accustomed to such roles. Others are from middle-income families whose insurance does not cover home care.
Christina Powell’s family left a four-bedroom house in Virginia in 2007 for an apartment in Boca Raton, Fla., where her grandfather, Guy French, 78, struggled with dementia and bladder cancer. Her mother’s job at a yacht uniform company starts early, so Christina, 13, gives medicine, changes sheets and dresses her grandfather for chemotherapy.
Initially, he was continually drunk, went naked and urinated everywhere, “like a sprinkler system,” Christina said. His chain-smoking aggravated Christina’s asthma. He was also often “really angry,” saying that “he didn’t like me,” she said. “That made me depressed. I was like, ‘I’m the one who takes care of you.’ ”
Her mother, Florence French, 44, moved them out, but after Mr. French broke his hip, he joined them in their new home.
Christina gave him her bed, now in their living room alongside a commode, and slept on chairs for a while.
Her grandfather refused adult day care and balks at Medicaid-financed home visits. Christina, a good student who is usually upbeat, said that for months she felt, “ ‘I hate my life.’ ”
Eventually, Ms. French stemmed the drinking, restricted the smoking and put her father in diapers. “It’s a hard experience, but it’s good for them to see what family means,” said Ms. French, who is planning a move to a bigger house. In their Haitian culture, she said, “We don’t put our parents in nursing homes. And I know if it’s too much for her she’ll tell me.”
The Caregiving Youth Project visited, telling Christina, “ ‘You’re doing something good,’ ” she said. “I’m happier now.”
Karen Harwood, the project’s care coordinator, said, “We can’t change the situation for a lot of kids, but we can help them through it.”
A Caregiving Youth Project weekend camp gave Michael Anderson a chance to “get away from my mother so I can be with myself and my friends,” he said.
Michael is so conscientious that he takes a premedical class at school. Sometimes Ms. Santiago, his mother, calls school with a code word so he knows she is O.K. She said she worried when Michael said that “he didn’t want to go away to college or leave.”
“I don’t want him to think he was born to take care of me,” she added.
At 11, Annmarie Lent said, she felt “depressed” and “under pressure.” Classmates taunted her, saying, “ ‘Your mom’s crippled.’ ”
Once, she said, when she was reluctant to attend school, her parents got the police to “bring me to school in handcuffs — in my Tinkerbell pajamas.”
Ultimately, she “got really aggressive,” her mother said. “She threw a cup and hit me in the head, then she smashed me across the face.”
Another time, Ms. Lent said, Annmarie “took my cane away and started punching me” and beat her mother with beads, yelling,“ ‘You took my life away from me,’ that it was all my fault for becoming disabled. I was screaming. I didn’t want to die at the hands of my 11-, almost 12-year-old.”
Three times, Ms. Lent said, she reluctantly had Annmarie arrested. Charged with assaulting a disabled person, Annmarie wrote, “Dear Mom, I’m so sorry for hitting you.” She spent time in detention, faced the possibility of foster care and was given a diagnosis of bipolar and attention deficit hyperactivity disorders.
In time, things improved. The Caregiving Youth Project helped her get counseling, peers and letters of commendation from school and elected officials. “Sometimes I feel guilty about putting the responsibility on her,” Ms. Lent said, but “we have a very good relationship now.”.
Annmarie says she realizes her mother “goes through more pain than anybody. I think she’s special for that.”