In homes across thecountry, children andteenagers are caringfor sick and disabledfamily members
BY ABIGAIL CUKIERNEWS STAFF
Before she leaves for college eachday, Mary Ladniak helps a
nurse feed her mother and changeher position in the hospital bed setup in their living room.
After school, Mary, 19, who isstudying to be a nurse, cleans thekitchen, vacuums the house andblends food for her mother's din-ner. Tomorrow, she must remem-ber to call the dietitian to makesure her mother is on the properfeeding schedule.
Mary remembers talking about“everything” with her mother,walking to the store and going tochurch. But as her multiple sclero-sis has worsened, her mother canno longer offer words of advice, asshe is unable to speak. She can’t eatsolid foods or walk to the bath-room. She has been confined tobed for four years.
“You’ve lost a part of somebody.That person is not there anymore,”Mary says. “Having her to go to themall, do mother-daughter things.She used to iron and clean thehouse. It was spotless. I clean thehouse now.”
Mary’s father is her mother’sprimary caregiver, but becauseEnglish is not his first language, it isMary who communicates with hermother’s medical team.
And Mary is not alone. Barbara Carruthers, senior
client care coordinator at the MSSociety of Canada, Hamilton Chap-ter, says because MS usually strikesbetween the ages of 15 and 40,many sufferers have children whobecome caregivers as the diseaseprogresses. Situations are similar infamilies affected by cancer, mentalillness, ALS and stroke.
A 2005 study by the NationalAlliance for Caregiving foundbetween 1.3 million and 1.4 millionchildren between the ages of eightand 18 are caregivers in the UnitedStates. The last United Kingdomcensus found 175,000 caregiversunder 18.
While no major studies exist inCanada, researchers are beginningto pay attention to this issue. Withcouples waiting longer to havechildren and medical advancesprolonging life, as well as thefinancial need for the other adultto continue working, they believechildren and teenagers willincreasingly have to take on thisresponsibility.
A 2001 US study called youngcaregivers invisible because of lackof awareness of their plight andtheir reluctance to call attention tothemselves. But they are here, inhomes across the country. Theysuction breathing tubes, changecatheters and pick up relativeswho’ve fallen.
“Roles are reversed and formany kids, the innocence and free-dom of childhood is lost in thechaos of serious illness,” said JaneGeorge, executive director of Well-wood Juravinski House, which sup-ports cancer patients and theirfamilies. “They can feel isolatedand alone. While their friends arethinking about pimples and promdates, these kids are wrestling withthe uncertainties and realities of anillness that has completely taken
over their lives. Many are afraidevery day of what they may comehome to face. Add to that, the feel-ings of despair, frustration andanger and the feelings of guilt thatmay be associated and that is oneheavy burden indeed.”
Ms. Carruthers’ husband wasdiagnosed with malignant MS, arare form that progresses veryquickly. He needed total nursingcare for seven years.
“My kids had to grow up fasterthan other kids. They were asked todo things kids shouldn’t have to do.A 14-year-old boy having tocatheterize his father, that’s diffi-cult for a teenage boy to do,” shesaid.
Ms. Carruthers’ children were13, 9 and 6 when their father wasdiagnosed.
“They didn’t know their fatherother than the man in the wheel-chair. Children with sick parentsdon’t always get to have familyvacations. Mom and dad can’talways go to the soccer games orbaseball games. It’s hard when theyaren’t there,” she said. “My son wasangry as a teenager. Things werepromised, to go to work with hisdad or go golfing. That never hap-pened.”
Ms. Carruthers, who has workedfor the MS Society for 15 years, saysfamilies don’t often disclose thecaregiving situation.
“When I find out, I tell the kidsto call me. But I am not a profes-sional in that way, a social workeror doctor. Kids need to find some-where they can voice their angerand fears and talk openly without itgetting back to their parents,because they worry about upset-ting their parents. There is notenough in the community foryoung caregivers.”
Young Carers Initiative Niagarais trying to change that.
The organization, with helpfrom an Ontario Trillium Founda-tion grant, has commissionedresearch on the issue, formed aboard of directors and plans tostart Young Carers Canada. Theorganization hopes to createresource centres for professionalsand families and include home-work help, counseling and fun pro-grams for kids, as well as training,like cooking classes.
Sylvia Baago is YCIN president.Her mother had Alzheimer’s dis-ease and although her childrendid not live with their grandmoth-er, the whole family helped with
care. Through her involvementwith the Alzheimer’s Society ofCanada, Ms. Baago saw the ‘invisi-ble’ children.
“There was one 13-year-old girlwith a single mom and a youngerbrother helping care for her grand-mother. She saw her grandmotherturn from a loving, caring person tosomeone they didn’t recognize andshe didn’t recognize them. Shecould be abusive, not the lovinggrandma they knew. The girl hadno social life but did well at school.She said she had two options. Shecould end her life or kill her grand-mother.
“I started thinking about all ofthe children we saw out there.”
As its children’s issue coordina-tor, Ms. Baago and the AlzheimerSociety of Niagara Region startedYCIN in 2003 with communitymembers from agencies like theMS Society, Brain Injury Associa-tion and the school board. YCINprovides information and servicesto young caregivers, includingsummer camps and winter week-end trips.
While YCIN might be the onlygroup in Canada to cater specifi-cally to young caregivers, Britainleads the way.
The Young Caregivers Initiativein the UK provides Web links forhelp with everything from home-work to health and information forteachers and other professionalswho work with young caregivers. Ithas about 100 project officesthroughout the UK.
Youngcarers.net providesadvice for parents, information onthe types of illness or disabilitieswith which caregivers may be deal-ing and helps with moving out andfinding work. Regional offices pro-vide trips, activities and peer men-tors.
“Being a young caregiver affectsyour education, recreation, yoursocial life, as well as emotionallyand physically,” Ms. Baago said.
“The family is the fundamentalunit of society. We need strongfamilies. We want to keep people intheir homes. That’s a laudable goal,but then we need to support thewhole family.”
One of the reasons this is diffi-cult is young caregivers tend to besecretive.
Brigitte Neumann, executivedirector of the Nova Scotia Adviso-ry Council on the Status of Women,said caregivers advice to others isoften to seek support from extend-ed family or community services,although they are reluctant to do sothemselves, assuming they willupset their family or others won’tunderstand. Mary admits to keep-ing her feelings about her motherquiet.
“If there were something in thecommunity available for me, as intalking to a counsellor I would notdo it. I talk to my aunt or my friendif there is something that is on mymind but usually I keep everythinginside of me. I don’t usually saymuch to anybody which isn’tgood,” she said.
Mary was in Grade 6 when hermother Bogumila, now 51, startedhaving trouble walking and wasdiagnosed with MS.
Her MS progressed quickly.Mary remembers her mom could-n’t attend her Grade 8 graduationfrom St. Ann Catholic ElementarySchool.
“I was confused. I didn’t knowwhat was going on. I was wonder-ing if it would get better, but it did-n’t.”
For two years, her mom mainlymoved from the chair to the bath-room to the couch to sleep. When itgot really bad, the family put a bedon the main floor.
A home care nurse visits twice aday to change IV fluids or to re-position Bogumila to prevent bed-sores. Her speech is completelygone. But she understands every-thing and nods yes or no.
Mary works twice a week at adoctor’s office and is studying to bea registered practical nursethrough the Mohawk College-McMaster University nursing pro-gram.
When not at work or school,she does the laundry, cleans thehouse and prepares dinner. Shemay go grocery shopping, pick upher mother’s medicine or pay thebills. She also prepares and blends
food for her mom and feeds it toher.
Bogumila’s gag reflex is gone, soshe is unable to eat. She has yogurt,juice or sometimes soup.
“When it comes to the nurses,doctors, case managers, physio-therapists, the swallowing team,just basically anything to do withmy mom, I am the one they speakto, then I fill my dad in on whatthey said.
“Everything’s changed withinyourself, within your home. I feel Igrew up too fast. I never really hadtime to be a kid,” Mary said.
“I wish there were a cure, butthere won’t be in time for her. Itsucks to say, but I guess I have toface the truth, right.”
Jenny Janiszewski, 18, a studentat Bishop Ryan Catholic SecondarySchool, can still have heart to hearttalks with her mom Linda. Theyplay board games and go shop-ping. They recently picked outJenny’s graduation dress. But sinceshe was little, Jenny had to helpclean the house and make dinner.From when she was about 12, shewould help her mother changeclothes and pick her up if she fell.
Linda started to lose her balanceand had numbness in her legs inJuly 1988, when she was 25 years oldwith a one-year-old son, Richard.She was diagnosed with MS.
Linda was symptom free for awhile and her pregnancy withJenny in 1989 went smoothly.
During Jenny’s childhood,Linda’s MS worsened.
“I didn’t really understand, but Idid research. It was difficult, I’dwant to go out, but also want tostay home and help her out and dostuff for her,” Jenny said.
Four years ago, Linda movedinto Arbour Creek Long Term CareCentre. She is in an electric wheel-chair and her speech is slurred.
“My legs are dead weight, liketree trunks. But I can still feel painin them and spasms,” she says. “Iam losing strength in my lefthand. Things are gradually leav-ing me. I get fatigued as the daygoes on. By this afternoon, I won’tbe able to push the elevator but-tons in this place.”
Linda says when she lived athome, her kids were always thereto help.
“When I would fall they wouldbe able to pick me up. They neverhad any qualms, except for somestruggles because they were ado-lescents. I would start dinner andstop when I got tired. They wouldfinish when they got home. It waslike a team. If they wanted to eat,they had to help.”
Linda made sure to never holdher children back from what theywanted to do. She always tried tobe at their hockey or ringettegames.
“We never really talk about howthey feel about it,” Linda said. “Ihope my children feel they had, nota normal life, but it wasn’t toomuch of a burden.”
According to Ms. Neumann ofthe Nova Scotia Advisory Councilon the Status of Women, Lindaneed not worry.
“I am struck by young care-givers’ resilience, courage and theirgenerosity,” she said. “They show,really, what it means to be humanin a deep sense. Helping each otheris what it’s all about.”
Since the writing of this story,Bogumila Ladniak passed away. Shewas 51. Ms. Ladniak leaves behindher husband Walter, children Mary,Christine and John, sisters Danutaand Janina, brother Stanislaw andher parents Stan and Aleksandra.
PAGE 16 • FRIDAY, JUNE 13, 2008 • STONEY CREEK NEWS www.stoneycreeknews.com
Canada’s invisible caregivers face issues in silence
PHOTOS BY ABIGAIL CUKIER
Linda Janiszewski has had multiple sclerosis for 20 years. Her two childrenhave helped care for her since they were young.
Nineteen-year-old Mary Ladniakhelps care for her mother Bogumila,who has multiple sclerosis. She alsocleans the house, cooks meals andkeeps track of the bills.
See NEXT PAGE
FRIDAY, JUNE 13, 2008 • STONEY CREEK NEWS • PAGE 17www.stoneycreeknews.com
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Heather Chalmers, assistantprofessor in Child and
Youth Studies at Brock Univer-sity is studying young care-givers for Young Carers Initia-tive Niagara.
She investigated resourcesfor young caregivers in the Nia-gara Region, interviewed 14caregivers, aged 14 to 26 and had65 caregivers, aged 10 to 18,complete a survey.
Caregivers stressed theimportance of seeking helpfrom the community or friends,while many admitted to nothaving done so. They wereafraid their family would bejudged.
They felt they had missedout on being kids because theyhad to rush home to help. Manywere bullied about their familymember’s illness or their extraduties.
Many missed school or did-n’t complete assignmentsbecause they were too tired. Butthey felt they were more maturethan their peers and were pre-pared to go into the world andcontribute with the skills theyhad gained.
Ms. Chalmers said organiza-tions don’t have the funding ormandates to serve young people.
“Agencies might not even beaware or have the resources,”she said. “They need morefunding or their mandatesbroadened.
“To minimize harm and
enhance the positive aspects,we need to help these youth.Let’s acknowledge them andsupport them. If we want suc-cessful, contributing membersof society, let’s help these youthget there.”
BC studyGrant Charles, an assistant
professor in the School of SocialWork and Family Studies at theUniversity of British Columbiais studying young caregivers inBC.
In a survey ofhigh school stu-dents in GreaterVancouver, 58, or12 per cent of the483 students werecaregivers, rang-ing in age from 12to 17. Forty percent were caringfor a parent, 36per cent for agrandparent and32 per cent for another relative.
Caregivers did not report dif-ferences from their peers inself-esteem, stress levels orsleep patterns. They spent moretime with family, while non-caregivers spent more time atwork or playing sports.
“They may be more likely tohave disagreements with theirmothers,” Mr. Charles said.“This makes sense, as in crisis,you are more likely to see yourparents as intrusive. Parents arealso going to be more assertiveabout getting help.”
In another study, Mr. Charlesinterviewed adults who had
been young caregivers due toillness, family violence or par-ents who needed translators.
“The more disruptive the sit-uation, the more harm it did as ayoung person,” Mr. Charles said.“If being treated as servants,there were more effects andmore stress. They felt like theywere keeping the family togetherand no one cared much aboutthem. Whereas the ones whosaid ‘my parents loved me, these
were just cir-cumstances,’were fairlyhappy, well-f u n c t i o n i n gadults.”
Many tookon caregivingcareers. Theyfelt caregivinghad made themgood planners,resourceful andhelped develop
good judgement. Because theyrushed home from school, theyhadn’t developed deep friend-ships and were cautious of hav-ing someone dependent onthem now.
“They were very happy to betelling their story,” Mr. Charlessaid. “Most didn’t even knowthere was this title to what theyhad done.”
Mr. Charles was struck byhow little attention others in thecommunity paid. One child hadnegotiated a family’s mortgagewithout any questions.
“Schools are under stressand strain. Teachers pay atten-
tion to kids being disruptive,not the ones rushing to gohome,” he said.
This was the case for MaryLadniak, 19, who lives in Hamil-ton and cared for her motherwith multiple sclerosis.
“In elementary school, theyknew what I was goingthrough. In high school, theydidn’t know my mom was sick.It seems a little bit different inthe sense that they wouldn’tunderstand what was happen-ing. I was never late for school,I had to miss some days for anappointment with our casemanager for my mom or whenI had to deal with things,” shesaid. “With college it’s a wholenew world. Having to do every-thing on your own. At times, Ifelt I was really tired and could-n’t concentrate and at timescouldn’t even complete someof my homework.”
Mr. Charles said young care-givers need to be brought ‘out ofthe closet.’
“We are hoping to buildawareness so programs like theone in Niagara can be betterresourced and have more inother jurisdictions,” he said.“Some kids don’t need much,just an adult looking in on themor a support groups, a gatheringplace where other people rec-ognize them.
“One of the worst things thatcan happen is our experiencesaren’t validated. Just someoneto talk to who has some knowl-edge of what we’re dealing withcan be everything.”
Researchers start to pay attention to young caregivers
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)
“They were very happyto be telling their story.Most didn’t even knowthere was this title towhat they had done.”Grant Charles, assistantprofessor, University of
British Columbia
