Parent, Grandparent, Brother, Sister, or RelativeCaregiver and receiver
Some young people look after one or both of their parents or grandparents. When there is a family health situation such as from an illness, disability or drug/alcohol problem, you might find that you are doing more to help with housework, cooking or looking after your brothers or sisters. You might even help your parent or grandparent with washing, dressing or going to the toilet. Children and young people who help look after someone with an illness or a disability are often called "caregiving youth" or "young caregivers" in the United States or "young carers" in England or Australia.
At AACY and with its affiliates, we use the term "caregiving youth" because the word "young" has so many different meanings in our society that it confuses some people.
It can feel good to help and be a caregiving youth, but there might be things that worry you or stress you out as well. If your responsibilities affects your work at school or causes you problems, even problems with your friends, you and your family might be able to get help so that you don't have to do as much.
A Caregiving Youth Project will help if there is one near you. You could ask a Teacher, a Guidance Counselor, a Social Worker, or your School Nurse to help you. If you are unsure about a particular illness or problem, you may find some help by looking through this section. We are adding to it all the time. Also you may like read the section, "Caregiving Youth Stories" to learn about how other caregiving youth made it through their situation.
You may also find some information and support by calling our toll free number, 800-725-2512.
If you feel that you have to do things to help you that you are not ok with, or you do not know how to do, an adult such as a Social Worker or your School Nurse needs to know - there are others in your community who might be able to do these things instead.
Read more about "How I Feel" here
Special Thanks to Rebecca and Brittney who allowed us to reproduce the posters they submited to the Young Carers Initiative, Niagra (YCIN) , poster contest. See them here.
"I Did It"
Dr. Kim Shifren
I began caregiving for my mom at age 14.
It happened very suddenly. It was a ½ day of school, and I came home from school early to tell my mom about a boy who asked me on a date. I was so excited about the boy, and I came home to find she wasn't there. I didn't believe my older brother when he told me she had a heart attack and was in the hospital. I told him it was a horrible joke and not funny at all. Then, someone called from the hospital. I can't recall who now, and told me it was true and to come right over. They were not sure if she was going to make it. My mom was 42 and it was a major heart attack.
I became extremely close to my mom, rather than the typical teen girl/mom relationship. No fighting about silly stuff. I didn't want to have conflicts with her, because I felt so lucky to have her here.
I was close to her before the heart attack, but I became even closer.
When my mom was in the hospital I would help keep her clean, do her hair, and help with her food. Once we were home, I continued to bathe her, help her get dressed, do her hair, help her get on and off the toilet, prepare meals and bring those to her. Gradually, my mom was able to get back to doing all of this on her own. She wasn't allowed to lift her arms for a while though.
No one helped me learn what to do; I was on my own.
My dad helped out when he could, but he worked full time and assumed that I could take care of things.
No one else helped or even thought of helping.
My concerns changed over time. I have done this caregiving routine for my mom on again and off again a number of times: ages 14, 18, 21, 30, 35, and now again at 39. Talk about a developmental experience! I was 7 months pregnant with my son at age 35 and pregnant with my daughter (about 7 months again) at age 39. Once again, I now have a newborn and my mom to worry about caregiving for and my son who also needs my attention. Oh, and a full time job.
My dad still works and tends to leave her home alone with no help. Either I am available to help or no one is there with my mom, even after she has a surgery. He can't afford or won't get help to assist my mom from the Baltimore County Department of Aging. He won't get household help, so he and my mom do the cleaning themselves. She is no longer well enough to be doing anything like that. I am no longer available to help as much because of my young children, and I can't afford to get them someone to help. Even if I could, my dad won't let me hire anyone because he thinks the person will steal from them.
I really had no idea about resources available to help when I was 14, 18, and 21. I knew about some resources, but not that well at age 30 and I lived in Michigan then. It was very difficult from so far away to keep coming back to help.
Now I know more, but probably still not enough, and my dad refuses the outside help.
I don't take a single day of my life for granted or that of my family members either. Each day is so precious to me, and I won't waste time on being angry about stupid things. Life is so short and my time without caregiving responsibilities can end so quickly that I enjoy life when it is as normal as can be.
I took a long time to get married and have children because of what I went through. Ironically, it sets me up for doing the same thing to my own kids but with them at a much younger age than I was because I am an older mother. I won't, however, burden my children with my caregiving needs. I will gladly seek outside help and care when needed. I will get long term disability insurance as soon as possible. I will not leave this to my young children.
I decided to pursue a higher degree to help others because of it.
Don't feel guilty getting outside help or help from other relatives if they offer it. Don't take it all on yourself and then keep secret about it. It will only hurt you and the recipient in the long run. A great caregiver must take care of him/her self, or he/she won't be around to take care of others. Taking care of your parents when you are a child isn't your responsibility. Your parent/relative is extremely fortunate to have someone as unselfish and giving as you to take on this role. You do have a right to the things other children have, free time to play with other kids and do after school activities, get your academic work done and study for tests. You need this time to grow up.
Kim Shifren, Ph.D.
Towson, Maryland 21252
Perspectives on Caregiving Youth
Connie Siskowski, RN, PhD
"I've learned what it must be like to have a baby" a ninth grade honors student living in Delray Beach, Florida responded when asked what she has learned from her experiences in caring for her grandmother. She and her older sister agreed. And, the sister went on to say that she has learned to be responsible. She knows that her grandmother, who lives with her family, doesn't know when she is hungry and it's time for her to eat; so her granddaughter keeps track of the time, prepares her meal, and assists her with eating to makes sure she gets the nourishment she needs. Her grandmother is thin and in constant motion as she walks around the locked home, spending much energy and burning many calories.
We somehow communicated; the grandmother in her native tongue of Creole and me, mostly non-verbally. The girls shared how their whole family including male cousins, take turns with various intimate caregiving activities such as taking showers, personal care and changing diapers. The family believes it is their duty and joy to care for their grandmother and often sing as they help her. The girls told me that on a scale of 1-10 with 10 being the most difficult, it's about a 7.5. These young caregivers never miss school and they always get their homework done; they say their parents make sure of that!
In contrast, during January 2002 a ground-breaking survey was conducted among 12, 681 students in grades 6-12 throughout 54 Palm Beach County, FL public schools. This What Works Survey was conducted by Palm Beach Atlantic University in West Palm Beach, FL by Dr. Bert Miller and associates ultimately including myself. The purpose of the survey was to learn from children what they feel either helps or hinders their ability to learn. It seemed logical to ask students if family health situations were affecting their education. Fortuitously, the first time in the United States, this large group of economically and culturally diverse students were asked if there was a person with special medical needs in their home or close by. More than half of all students indicated that there was such a situation; of these, two out of five students either agreed or strongly agree to the statement, "Living with this person in need of special medical care hinders your learning."
While discussing young caregiving realities, Lashandra Span of the Palm Beach County School District related the circumstances of a twelve year old boy who lives with his single mom and grandfather. His grandfather is wheelchair bound and his mom leaves early in the morning to go to work. The student's responsibility is to get his grandfather up in the wheelchair before he goes to school. Some days this just takes longer than other days. On the days it takes a little longer, the child misses the school bus.
The composition of our families is changing with more single parent households, plus more intergenerational households. At the same time, people with all types of chronic conditions live longer, and advances in medicine and technology allow for more intense family care at home. It makes sense that many members of caregiving families are in some way affected, and this includes children, and their education.
The role that children play in caregiving families is not unique to America; it is a global phenomenon. The issues surrounding young caregivers were identified as one of three global priorities during the 2002 Third International Conference on Family Care. England was among the first to recognize "young carers" and to begin to develop models of support for them and their families. Their studies show that the average age of a young person with caregiving responsibilities is 12 years1. Most live in single parent households, and one in three children regularly missed school or had educational challenges as a result of their caring2. There are now more than 120 support systems for young carers throughout the United Kingdom. Reports from Australia are similar to those from England. In Australia, the average age for a young carer is 13 years.
Several months ago Boca Respite Volunteers was contacted by a seemingly frustrated case manager from Boca Raton Community Hospital. She was trying to find resources to help a family. The dad and family caregiver became suddenly seriously ill and in ICU with inoperable cancer. The mom, who has Multiple Sclerosis (MS), spends her days in a wheelchair. Now the only daughter, a senior in high school, became a primary caregiver for her mom. She wasn't confident of driving the family van…after all her dad had always done that! Our agency reached into its volunteer network to find help to get the mom back and forth to the hospital to visit. That was the easy part. The challenge was to create a caring team to check on the mom while the daughter attended Girls' State, her reward for honors work in school. The parents desperately wanted their daughter to have that experience of a lifetime. The resourceful daughter already had help from a competent friend to spend the nights with, and care for her mom. Her friend knew the routines because she regularly helped with her quadriplegic dad. She confided that her friend was "lucky" because she had a sibling to share the responsibilities of caregiving.
As with adults, the identification and recognition of the role of being a young caregiver is beneficial. An Australian child said, "Being called a young carer gives me identity in my role, what I do at home, not just to speak out to other people, but also in myself…to find that identity is amazing and was good".3
In other reports, children felt that they valued their family closeness. Two nurses and researchers in the U.S. mid-west have worked with young caregivers in families dealing with cancer. In addition to negative effects, they reported that youth learned new things and enjoyed the "I can do it myself" experiences of life learning.
For youth who are family caregivers, "I can do it myself" should not translate into "I can do it by myself"…therein lies the need for change.
1. Carers National Association. (1997). In on the act? London: Author.
2. Dearden, C. & Becker, S. (1998) Young carers in the UK: A profile. Carers National Association, London.
3. Carers Australia. (2001). Young carers research project final report. Commonwealth Department of Family and Community Services. Author. p. 20
4. Gates & Lackey. (1998). Youngsters caring for adults with cancer. Image: The Journal of Nursing Scholarship, 30 (1), 11-15.
Last updated on March 22, 2008
What others kids say
When a Parent, Grandparent or Other Adult Has an Illness
Perhaps you have been living with an adult who has a chronic illness for awhile and you already know it’s not the end of the world. But, no matter who you are, in some way that illness or disability affects you. All teens in your shoes put up with a lot more than teens who live in a family where everyone is healthy. Here are some common experiences that other teens have shared:
"It’s hard to plan because one day my mom is well and the next day she’s not" says Eric. We were going on a vacation and then mom got worse and our whole trip was cancelled. "I was really looking forward to getting away."
Some illnesses such as Alzheimer’s Disease and Multiple Sclerosis are not very predictable. One day the person is reasonably well and the next day is a bad one. Finding lots of good days in a row is often a challenge.
"My brother and I have a lot more chores to do that my friends don’t have," said Amy. "We have to make dinner, clean up, do the laundry and all stuff like that."
Doing more chores means that you may be have less time to do things that you might like to do…less time for friends, sports or sometimes even homework.
Theo says, "I’m afraid we won’t have enough money for me to go to college. My parents have brought my grandparents to live with us and now they are using their savings and my college money to buy medicines, special food and supplies."
Needing special medical care is costly and can mean a change in your future plans. Some funds may be available. Be honest with your guidance counselor as you seek help for the future.
"Sometimes strangers look disgusted, and I know they think my dad is drunk or retarded," said Jessica.
Emotions are messy. They don’t march in neat rows or take turns appearing one at a time. They get all mixed up. It’s normal to love and be angry with a parent at the same moment. It’s possible to worry about the future, be impatient to leave home, and still feel tied to your family by loyalty, love, and responsibility.
"If I tell my mother something, I never know if she’ll remember it," said Josh. "Like I’ll want to go to a concert, and she says yes, and then later she blanks out about it."
A parent’s moods and memory can also be unpredictable. He or she may have outbursts of anger, or may give permission to do something one day only to forget it the next.
Brittany gave this Speech at school about the past five years dealing with her Grandmother's Alzheimer's.
Heidi expressed this feeling: "My friends don’t understand the pain I feel seeing my mom in pain and me not able to help. They don’t understand why my mom is always napping. They don’t understand why one day she’s on her feet and happy, and the next day she’s in her wheelchair, depressed."
"Friends say they understand but they don’t really know," said Eric. "And they don’t understand how mad I get when they put people down for being ‘different."
Only someone who lives in a household with some who needs special medical care knows what it’s really like. And that can make a teen feel isolated.
You may recognize yourself in some of the situations we described, or you may not. Everyone is unique, and even within the same family brothers and sisters experience life in different ways. The point to remember is this: You are unique, but you are not alone!
Adapted with permission from the National Multiple Sclerosis Society November 2005.