Before she leaves for college each day, Mary Ladniak helps a nurse feed her mother and change her position in the hospital bed set up in their living room.

After school, Mary, 19, who is studying to be a nurse, cleans the kitchen, vacuums the house and blends food for her mother's dinner. Tomorrow, she must remember to call the dietitian to make sure her mother is on the proper feeding schedule.

Mary remembers talking about "everything" with her mother, walking to the store and going to church. But as her multiple sclerosis has worsened, her mother can no longer offer words of advice, as she is unable to speak. She can't eat solid foods or walk to the bathroom. She has been confined to bed for four years.

"You've lost a part of somebody. That person is not there anymore," Mary says. "Having her to go to the mall, do mother-daughter things. She used to iron and clean the house. It was spotless. I clean the house now."

Mary's father is her mother's primary caregiver, but because English is not his first language, it is Mary who communicates with her mother's medical team.

And Mary is not alone.

Barbara Carruthers, senior client care coordinator at the MS Society of Canada, Hamilton Chapter, says because MS usually strikes between the ages of 15 and 40, many sufferers have children who become caregivers as the disease progresses. Situations are similar in families affected by cancer, mental illness, ALS and stroke.

A 2005 study by the National Alliance for Caregiving found between 1.3 million and 1.4 million children between the ages of eight and 18 are caregivers in the United States. The last United Kingdom census found 175,000 caregivers under 18.

While no major studies exist in Canada, researchers are beginning to pay attention to this issue. With couples waiting longer to have children and medical advances prolonging life, as well as the financial need for the other adult to continue working, they believe children and teenagers will increasingly have to take on this responsibility.

A 2001 US study called young caregivers invisible because of lack of awareness of their plight and their reluctance to call attention to themselves. But they are here, in homes across the country. They suction breathing tubes, change catheters and pick up relatives who've fallen.

"Roles are reversed and for many kids, the innocence and freedom of childhood is lost in the chaos of serious illness," said Jane George, executive director of Wellwood Juravinski House, which supports cancer patients and their families. "They can feel isolated and alone. While their friends are thinking about pimples and prom dates, these kids are wrestling with the uncertainties and realities of an illness that has completely taken over their lives. Many are afraid every day of what they may come home to face. Add to that, the feelings of despair, frustration and anger and the feelings of guilt that may be associated and that is one heavy burden indeed."

Ms. Carruthers' husband was diagnosed with malignant MS, a rare form that progresses very quickly. He needed total nursing care for seven years.

"My kids had to grow up faster than other kids. They were asked to do things kids shouldn't have to do. A 14-year-old boy having to catheterize his father, that's difficult for a teenage boy to do," she said.

Ms. Carruthers' children were 13, 9 and 6 when their father was diagnosed.

"They didn't know their father other than the man in the wheelchair. Children with sick parents don't always get to have family vacations. Mom and dad can't always go to the soccer games or baseball games. It's hard when they aren't there," she said. "My son was angry as a teenager. Things were promised, to go to work with his dad or go golfing. That never happened."

Ms. Carruthers, who has worked for the MS Society for 15 years, says families don't often disclose the caregiving situation.

"When I find out, I tell the kids to call me. But I am not a professional in that way, a social worker or doctor. Kids need to find somewhere they can voice their anger and fears and talk openly without it getting back to their parents, because they worry about upsetting their parents. There is not enough in the community for young caregivers."

Young Carers Initiative Niagara is trying to change that.

The organization, with help from an Ontario Trillium Foundation grant, has commissioned research on the issue, formed a board of directors and plans to start Young Carers Canada. The organization hopes to create resource centres for professionals and families and include homework help, counseling and fun programs for kids, as well as training, like cooking classes.

Sylvia Baago is YCIN president. Her mother had Alzheimer's disease and although her children did not live with their grandmother, the whole family helped with care. Through her involvement with the Alzheimer's Society of Canada, Ms. Baago saw the 'invisible' children.

"There was one 13-year-old girl with a single mom and a younger brother helping care for her grandmother. She saw her grandmother turn from a loving, caring person to someone they didn't recognize and she didn't recognize them. She could be abusive, not the loving grandma they knew. The girl had no social life but did well at school. She said she had two options. She could end her life or kill her grandmother.

"I started thinking about all of the children we saw out there."

As its children's issue coordinator, Ms. Baago and the Alzheimer Society of Niagara Region started YCIN in 2003 with community members from agencies like the MS Society, Brain Injury Association and the school board. YCIN provides information and services to young caregivers, including summer camps and winter weekend trips.

While YCIN might be the only group in Canada to cater specifically to young caregivers, Britain leads the way.

The Young Caregivers Initiative in the UK provides Web links for help with everything from homework to health and information for teachers and other professionals who work with young caregivers. It has about 100 project offices throughout the UK.

Youngcarers.net provides advice for parents, information on the types of illness or disabilities with which caregivers may be dealing and helps with moving out and finding work. Regional offices provide trips, activities and peer mentors.

"Being a young caregiver affects your education, recreation, your social life, as well as emotionally and physically," Ms. Baago said.

"The family is the fundamental unit of society. We need strong families. We want to keep people in their homes. That's a laudable goal, but then we need to support the whole family."

One of the reasons this is difficult is young caregivers tend to be secretive.

Brigitte Neumann, executive director of the Nova Scotia Advisory Council on the Status of Women, said caregivers advice to others is often to seek support from extended family or community services, although they are reluctant to do so themselves, assuming they will upset their family or others won't understand. Mary admits to keeping her feelings about her mother quiet.

"If there were something in the community available for me, as in talking to a counsellor I would not do it. I talk to my aunt or my friend if there is something that is on my mind but usually I keep everything inside of me. I don't usually say much to anybody which isn't good," she said.

Mary was in Grade 6 when her mother Bogumila, now 51, started having trouble walking and was diagnosed with MS.

Her MS progressed quickly. Mary remembers her mom couldn't attend her Grade 8 graduation from St. Ann Catholic Elementary School.

"I was confused. I didn't know what was going on. I was wondering if it would get better, but it didn't."

For two years, her mom mainly moved from the chair to the bathroom to the couch to sleep. When it got really bad, the family put a bed on the main floor.

A home care nurse visits twice a day to change IV fluids or to re-position Bogumila to prevent bedsores. Her speech is completely gone. But she understands everything and nods yes or no.

Mary works twice a week at a doctor's office and is studying to be a registered practical nurse through the Mohawk College-McMaster University nursing program.

When not at work or school, she does the laundry, cleans the house and prepares dinner. She may go grocery shopping, pick up her mother's medicine or pay the bills. She also prepares and blends food for her mom and feeds it to her.

Bogumila's gag reflex is gone, so she is unable to eat. She has yogurt, juice or sometimes soup.

"When it comes to the nurses, doctors, case managers, physiotherapists, the swallowing team, just basically anything to do with my mom, I am the one they speak to, then I fill my dad in on what they said.

"Everything's changed within yourself, within your home. I feel I grew up too fast. I never really had time to be a kid," Mary said.

"I wish there were a cure, but there won't be in time for her. It sucks to say, but I guess I have to face the truth, right."

Jenny Janiszewski, 18, a student at Bishop Ryan Catholic Secondary School, can still have heart to heart talks with her mom Linda. They play board games and go shopping. They recently picked out Jenny's graduation dress. But since she was little, Jenny had to help clean the house and make dinner. From when she was about 12, she would help her mother change clothes and pick her up if she fell.

Linda started to lose her balance and had numbness in her legs in July 1988, when she was 25 years old with a one-year-old son, Richard. She was diagnosed with MS.

Linda was symptom free for a while and her pregnancy with Jenny in 1989 went smoothly.

During Jenny's childhood, Linda's MS worsened.

"I didn't really understand, but I did research. It was difficult, I'd want to go out, but also want to stay home and help her out and do stuff for her," Jenny said.

Four years ago, Linda moved into Arbour Creek Long Term Care Centre. She is in an electric wheelchair and her speech is slurred.

"My legs are dead weight, like tree trunks. But I can still feel pain in them and spasms," she says. "I am losing strength in my left hand. Things are gradually leaving me. I get fatigued as the day goes on. By this afternoon, I won't be able to push the elevator buttons in this place."

Linda says when she lived at home, her kids were always there to help.

"When I would fall they would be able to pick me up. They never had any qualms, except for some struggles because they were adolescents. I would start dinner and stop when I got tired. They would finish when they got home. It was like a team. If they wanted to eat, they had to help."

Linda made sure to never hold her children back from what they wanted to do. She always tried to be at their hockey or ringette games.

"We never really talk about how they feel about it," Linda said. "I hope my children feel they had, not a normal life, but it wasn't too much of a burden."

According to Ms. Neumann of the Nova Scotia Advisory Council on the Status of Women, Linda need not worry.

"I am struck by young caregivers' resilience, courage and their generosity," she said. "They show, really, what it means to be human in a deep sense. Helping each other is what it's all about."

Since the writing of this story, Bogumila Ladniak passed away. She was 51. Ms. Ladniak leaves behind her husband Walter, children Mary, Christine and John, sisters Danuta and Janina, brother Stanislaw and her parents Stan and Aleksandra.

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How to spot a young caregiver

• Regular absences

• Concentration problems

• Fatigue

• Late or incomplete homework

• Sudden drop in attendance or achievement

• Few friendships

• Very mature for age

• Unable to attend extracurricular activities

• Parents not attending meetings

How to help

• If possible, speak to parents

• Help child find a counsellor for support

• Listen to child's concerns without judging

• Allow child to phone home if worried about a relative

• Negotiate homework deadlines at difficult times

• Just ask. Many young caregivers say if somebody had just asked, they would have accepted help.

* * *

Tips for young caregivers

• Talk with family and friends about your feelings

• Seek a counsellor, teacher or family doctor for help

• Find time to exercise, write in a journal or draw

• Get enough sleep and eat a nutritious diet

• Take advantage of agency resources:

Wellwood Juravinski House (www.wellwood.on.ca, 905-389-5884)

For people with cancer and their families. Online support for teens, peer mentoring, support groups and exercise programs

Hamilton VON (www.von.ca, 905-529-0700) Respite care, caregiver educational seminars

Multiple Sclerosis Society (www.mssociety.ca/hamilton, 905-527-7874) Counseling, kids camp program

ALS Society or Ontario (www.alsont.ca 289-313-0619)

Alzheimer Society of Canada (www.alzheimerhamiltonhalton.org, 905-529-7030)

Canadian Mental Health Association (www.cmhahamilton.on.ca, 905-521-0090)

Heart and Stroke Foundation of Canada, (www.heartandstroke.com, 905-574-4105)