In the United States, there are at least 1.4 million children and 5.5 million young adults who provide unpaid care to family members with disabilities, mental illnesses, injuries sustained through military service, and substance abuse issues. Here’s what you need to know about their lives during the holiday season:
Cold weather may exacerbate the physical health conditions of their loved ones, meaning both the worries and caring duties of caregiving youth multiply. As caregiving youth are home for longer periods of time with no school to attend, caring duties may increase and intensify. Young adult children may come home from college and find themselves expected to take on more care provision. When children and parents share in providing care for a sibling or grandparent, parents may be tempted to delegate more caregiving responsibilities to the children so that they may have some respite. Remember that children will want a chance to unwind after a busy school term. Give them space to read a book, watch television, and spend time with their friends.
In addition, keep in mind that the notion of a “normal” holiday season is always relative for caregiving youth—things can change instantly. This can be a time of instability, particularly for those youth caring for loved ones with mental illnesses or substances abuse issues. If the holiday season triggers a depressive episode or heavy substance use,
for keeping the household running.
Money, Money, Money. It is important to understand that there is an intersectionality issue at play between poverty, disability, and caregiving. Caregivers, young and old, as well as those with disabilities, are more likely to be living under financial strain or affected by poverty. It can be financially difficult for parents to keep up with all of the holiday parties and the gift giving that lasts all through December. For many caregiving kids, a parent’s money woes can trickle down to being their money woes. The stress barometer of the family household may rise immensely when parents are worried about the additional pressure of providing gifts for the family, along with making ends meet. Kids can easily pick up on the added tension in the home. If you’re a parent, give yourself some grace this holiday season and don’t feel like you need to do it all. If you’re a teacher, sports coach, or club leader, be mindful of finding ways to celebrate that are cost-effective and inclusive.
They experience a diverse range of emotions. Sometimes frustrations can mount when they realize their holidays at home are not the same in comparison to their non-caregiving peers. The visits of extended family members during the holidays may also serve as an unexpected source of frustration. In a recent interview with a teenage caregiver, I was told of the annoyance felt during her aunts’ holiday visits. Her aunts would pester her about cleaning her room. Knowing she provided around-the-clock care for her grandparents every day of the year, she found their questioning condescending. It’s critical to be aware that in many instances, caregiving youth are not only the “experts” in their family members’ care, they also serve as managers of their households. Be sensitive to the shifts in family dynamics that may occur when out of town family members come to visit.
Like adults, caregiving youth are also susceptible to the dark days of winter. Be watchful for signs of depression, particularly for those under high stress or grieving. Finally, remember that
Spending extra time with their families can be reassuring and comforting for them. For caregiving youth who have experienced loss, this is the perfect time to either honor old traditions or create new ones.
If you’re looking for ways to help, donate to the American Association of Caregiving Youth, the first and only national organization dedicated to supporting children with caregiving responsibilities.
This article was originally posted at The Huffington Post.
Like a kid before Christmas, I eagerly await the start of November every year. As November marks the dedicated month for family caregivers, I hold my breath as the tributes, photo spotlights, and news features begin to trickle across my computer screen. I read every article about caregivers through Google’s daily alerts. I read the Presidential Proclamation. I scan the websites of our national caregiving advocacy organizations. Words like “honor”, “love”, and “support” fill the pages. I finally release my breath, realizing 2016 would be yet another year in which the millions of child and young adult caregivers in America would go without mention.
These young people provide unpaid care, support, and assistance to their family members every single day. They care for our veterans. They care for our elderly. They care for our mentally ill. They care for our loved ones with substance abuse issues. In the midst of their homework assignments, part-time jobs, and college classes, they don’t forget to look after the very people our society has marginalized and cast aside.
Yet, when National Family Caregivers Month arrives in November, we forget to recognize them.
I spent this past year travelling across the United States interviewing young adult caregivers for my doctoral research. Knowing that my research is based in both the United Kingdom and the United States, my interviewees would ask me, “What’s it like in England?” I would tell them about numerous supportive organizations scattering the country, the new national law put in place to give child caregivers legal rights to seeking support, and even the budding growth of bursaries granting young adult caregivers financial assistance to go to college. “With regards to supporting caregiving youth, the United States is, in fact, behind the rest of the West.”
, the common response from my interviewees. I don’t know what to tell them in return.
Yet there is hope. There is Dr. Connie Siskowski’s American Association of Caregiving Youth, the only organization in our country committed to supporting children who provide care for their family. For decades, Dr. Siskowski and her organization have worked as tireless advocates, providing practical support to thousands of children, the majority going on to postsecondary education. Her efforts through AACY have culimnated in the designation of this November as “Caregiving Youth Month” by the school district of Palm Beach County, Florida.
“I long for the day when every child and young adult caregiver in our country feels supported as they pursue their dreams.” We can start now, by making every month and every day–a day in which these young people know they are not forgotten.
*This article was originally published with The Huffington Post. *
Ambiguous loss, as coined by Dr. Pauline Boss, refers to the loss a person experiences when there is a lack of resolution or clarity. Originally, Dr. Boss posited the theory of ambiguous loss through studying the families of soldiers missing in combat. There are two types of ambiguous loss. The first refers to when a person is physically present but psychologically absent, as with those with Alzheimer’s Disease or dementia, certain mental illnesses, or substance abuse issues. The second type occurs when an individual is psychologically present in the minds of the family but is physically absent, e.g. a missing person. The experience of ambiguous loss may be linked to other ill health effects such as depression, anxiety, guilt, substance abuse, and self-harming behaviors. Young adult caregivers are particularly likely to experience the former kind of loss, dependent upon the health condition of the person they care for.
Ambiguous loss differs from the experience of death because the loved one is still present. There is a lack of finality that typically occurs in death, as a caregiver experiences a loss that is gradual. Our society generally does not give ambiguous loss the same weight as death because the person is still living, referring to what research has called “disenfranchised grief”. However, ambiguous loss is significant and detrimental. Caregivers are forced to continuously grieve the loss of the person they once knew and loved while also providing care for them.
Young adult caregivers, likely because they are providing care earlier in life than they might have expected, experience a complex ambiguous loss: they grieve both the loss of the person they loved, and also the loss of their identity in relation to the loved one. Every time a young adult performs a caregiving act, be it reminding their loved one to take their medication, or paying the household bills because the loved one no longer has the mental capacity to do so, they are reminded that the person they knew is gone. Other research has found that caregivers may be preoccupied with how their loved one used to be, and when considering the present, they may determine that their loved one is “another person”.
Furthermore, their roles become more than sibling, child, or grandchild, but expand to include “caregiver”. For many young adult caregivers, this may mean a transformative shift in their perception of their identity within the family. In my research with young adult caregivers, I often find that they are forced to come to terms with a loss of their “normal” interactions with their loved one. Many say that they feel like the “parent”, instead of the “child”. In the midst of navigating the complicated life choices of young adulthood (relationships, education, careers), they feel like they must “figure life out” on their own.
Young adult caregivers are also in the unique position of grieving the loss of their future plans with their loved one. Suzanne, a 26 year old young adult who provides care for her mother with early-onset Alzheimer’s, was particularly troubled by the thoughts of her future wedding: “a traditional part [of a wedding] is your mom. And she’s not gonna be here. She’s not gonna mentally be here, even if she’s physically here.” Suzanne had to grapple with altered expectations for her mother’s role in future life events, while also continuing to perform the social norms for her age group − attending her friends’ weddings. Faced with the desire to express happiness for her friends while simultaneously feeling deep sadness over her loss, Suzanne became emotionally overwhelmed and found herself hating weddings, a life event she once greatly looked forward to. Other young adult caregivers find themselves in similar positions: graduations, the birth of children, and other major life events must be anticipated knowing their loved one may not be “present” to share in the moment.
Young adult caregivers experiencing ambiguous loss should take their feelings seriously and consider seeking professional mental health support. A counselor or psychologist can assess the caregiver for their level of grief and their capacity for resilience. Therapy can help a caregiver find meaning, live with uncertainty, and redefine relationships and identities. Discovering hope through new life plans and dreams can strengthen a young adult caregiver’s ability to face the future.
 Names have been changed.
This article was originally published at Losing A Puzzle Piece.
On September 11th, 2001, I remember coming home from school to watch the television, the smoke and sirens in New York City filling the screen. I was greeted by my mother who was lying in the bed, a place she knew well. Nearly two years prior, my mother underwent a spinal surgery that was performed incorrectly, leaving her in chronic pain. As a result, my older brother took on the role of primary caregiver—cooking, cleaning, working to pay our household bills, and helping our mother with her daily care. Amidst the hysteria, my older brother carried on as usual. His caregiving responsibilities never ceased even as the outside world reeled from the horrific attack. He wasn’t afforded the space and time to stop, reflect, or mourn.
I woke up last week to the news of the police shootings in Dallas, Texas. Only a few days earlier, I woke up to the news of the shootings of Alton Sterling and Philando Castile. Before that, the suicide bombings throughout Saudi Arabia and Iraq, the cafe attack in Bangladesh, and the airport attack in Istanbul, Turkey. I could keep going. The tragedies of late have left us broken and in pain. I grieve with you. I am also reminded of the caregivers like my brother, whose daily lives must go on regardless. How can you process a national tragedy when your own home is teetering on the edge of calamity? When the survival of your loved one rests in your hands, you have an intimate familiarity with matters of life and death. For the caregiver, trauma is always personal.
The hyperconnectivity of our modern world allows war, mass shootings, natural disasters, political revolutions, and terrorist attacks to enter our lives with an endless frequency. Caregivers already experience emotional overload, and the high visibility of national tragedies only heighten the risk of secondary traumatic stress. The constant news alerts can paralyze and depress. The scarce remains of your emotional reserves must be fiercely protected—turn the television off. The many duties of caregiving will not allow for long, calming walks on the beach and lazy afternoons spent journaling. Nevertheless, contemplate, cry, and be angry whenever you can. You deserve the moment to be human.
This article originally appeared at The Huffington Post.
Featured image: a katz / Shutterstock.com
Caregivers of ALL ages need support.
Shouldn’t we simply support ALL caregivers?
When I speak to the community about the needs of child and young adult caregivers, I often hear those two remarks in response. On the surface, both appear to offer unreserved support for caregivers. In reality, the messages have polar opposite intentions. The former statement says that no caregiver, of any age, should be forgotten or overlooked in regards to support. The latter statement implies that it’s nonsensical to point out the diversity of needs amongst caregivers – it cheerily exclaims, “Let’s just help everyone!” I wholeheartedly agree with the sentiment of the first. The second statement, however, demonstrates naiveté at best and callous indifference at worst.
Similar to the discourse surrounding #BlackLivesMatter and #AllLivesMatter, the idea that younger age caregivers have distinctive needs and experiences —and therefore, requiring different, targeted approaches to support — from their older caregiving counterparts is one that somehow prompts alarm and scrutiny. Some feel that the attention given to younger age caregivers detracts from the ability to raise awareness about all caregivers, particularly those in the Baby Boomer population. By highlighting the needs of one subset of caregivers, i.e., children and young adults, there is a fear that the remaining, older aged caregivers will be overlooked in obtaining services and policy recognition. Others feel that a focus on young caregivers is divisive, believing that advocacy for one particular group of caregivers will lend itself towards exclusionary practices.
Thankfully, caregiving advocacy is not a zero sum game.
A belief that all caregivers have the exact same set of needs and experiences is simply inaccurate and short-sighted. Previous research has overwhelmingly shown that young caregivers express distinctive needs and desire targeted support for their age group. They may feel out of place in the “typical” support group, and the need to have discussions surrounding their unique experiences (e.g., juggling homework, dating, and jobs in the midst of caregiving) go unfulfilled. Their young age has not afforded them the opportunity to secure stable careers with financial security or assets such as savings accounts, stocks, and property that can be leveraged in times of financial strain. Young caregivers are providing for their families in a life stage in which society normatively expects them to be wild, free, and independent; this is the time set apart to “find yourself”, develop relationships with friends and romantic partners, and make decisions on educational and career paths. Young caregivers are faced with that same set of expectations, but they must make choices regarding their personal life plans while also considering the needs of their families.
The 6.9 million children and young adults in the United States who provide care for their families are largely hidden from the view of policy-makers and supportive organizations. Young caregivers suffer societal stigmatization due to views related to their age range and roles as primary versus secondary caregivers. I am often told that young people are too narcissistic to be caregivers, and that those who share caregiving responsibilities with other family members, or provide care on the weekends or school breaks don’t “count” as caregivers. Child caregivers face a particularly disparaging battle to receiving support: some families with child caregivers fear the threat of social services issuing charges of neglect, so they choose to keep quiet about their children’s caregiving roles. The argument to support all caregivers perpetuates this cycle of invisibility and silence, and young caregivers continue to lose out.
Yes, all caregivers matter. Yes, caregivers of every age need support and recognition. The young will one day become old. In our fight to raise the profile of caregivers, let us not forget that specialized attention for some does not diminish the importance of all.
This article originally appeared on The Huffington Post
Growing up in the early 2000s, I thought my older brother and I were the only millennials with a family caregiving role. When I was eleven years old, my older brother dropped out of his sophomore year in college to take care of my mother. She had undergone a spinal surgery that went horribly wrong, leaving her in debilitating chronic pain. As a young millennial, my brother became responsible for my mother’s medical care and our household finances. With a seven year age difference between us, my brother’s caregiving role also included looking after me, making sure that I made it to school each day, dressed and fed. My brother acted as the primary caregiver in our home, sacrificing his own dreams that I might be able to pursue mine. As my mother never fully recovered from her surgery, his caregiving role continues to this day.
In the nearly two decades of our caregiving journey, I had never heard of the term “millennial caregiver”. Moreover, I didn’t even see myself as a caregiver until I came across the work of my now-PhD supervisor Dr. Saul Becker in England. His work with children and young adults who provide unpaid care in their families has spanned decades and has shaped the creation of legislative policy and supportive programs in the United Kingdom. Called “young carers” in the UK, I finally discovered there were other young people with family experiences similar to mine. My brother and I weren’t alone.
Who are “Millennial Caregivers”?
The latest figures released from the National Alliance of Caregiving and the AARP Public Policy Institute show that millennials (ages 18-34) make up nearly a quarter of the approximately 44 million caregivers in the United States. There is an equal chance that a millennial caregiver identifies as male or female. According to the NAC and AARP report, the “typical” millennial caregiver is 27 years old and provides support for a parent or grandparent with a physical condition requiring care. Millennials may also provide care for spouses, siblings, close family friends, and their own children. The care recipient may have care needs related to a mental illness, substance abuse issue, developmental or learning disability, HIV/AIDS diagnosis, or an age-related disease such as dementia or Alzheimer’s. In addition, millennials are increasingly providing care for their loved ones with injuries sustained in military service (e.g., traumatic brain injuries).
Caregiving can look very different across families. The types of tasks caregivers may perform include physical care such as lifting a person into bed, personal care (showering, dressing), and administering medicines. They may also be responsible for grocery shopping, household bill payment, cleaning, and cooking. Millennial caregivers who also look after their siblings can be found helping with homework or driving them to and from school. For some families, the millennial caregiver provides emotional support, serving as the voice of reason or the shoulder to cry on during times of stress.
Are Millennials Less Inclined to Identify as Caregivers?
In the interviews that I’ve conducted around the country, millennials are sometimes hesitant to label themselves as caregivers. They may not feel that the help they provide to their families “counts as caregiving” because the time devoted to care-related duties amounts to a “few hours a week”, or because another family member also provides care in the home. Those who live away from their family are even more reluctant to identify as caregivers, saying that returning to the family home on the weekends or on holiday breaks, i.e., “caring at a distance”, somehow reduces their role as a caregiver. In addition, the types of care millennials provide also plays a significant factor into how they view themselves: those who provide emotional support or help care for siblings may feel disqualified from the title of caregiver.
The issue of self- identification for millennial caregivers has reverberating consequences, namely, how they are perceived by society at large. When millennials disqualify themselves from the title of caregiver, the way we view their important role in the family is at risk for demotion. On a macro-level, millennial caregivers are essential participants in our nation’s health care system. They help contribute to the estimated $470 billion worth of unpaid care provided by family caregivers, helping to relieve the burden on our health care system. It is essential that millennial caregivers recognize their significant value in their individual families but also society at large.
Why Do Millennial Caregivers Need Attention in Public Policy?
The current discourse around caregiving is often centered around the aging Baby Boomer population and their caregiving needs. A “typical” caregiver in the minds of many people is someone in their 40s or 50s looking after an aging parent. The widely accepted view of caregiving is narrowly focused, leading people to think that care is only provided for elderly family members or those with certain physical health conditions. Furthermore, a common misconception is that caregiving tasks only consist of mobility aid, such as lifting a person or helping a person walk. The costs of such a narrow characterization of caregiving are high. Millennial caregivers remain overlooked in public policy, particularly with regards to respite care funding. National advocacy organizations and community support groups tend to focus on the needs of older caregivers, neglecting to address the realities facing caregivers in college or those without a stable career. Similar to older caregivers, millennial caregivers are at risk for social isolation, particularly when the demands of caregiving are high and time-consuming. Without supportive programs that directly attend to their distinctive needs, millennial caregivers can feel lonely, isolated, and forgotten.
How Can We Help Millennial Caregivers?
- Ease the financial burden
- Increased funding on a national and state level for millennial caregiver specific services, e.g., respite care and support groups
- Grants and scholarships for millennial caregivers for college
- Monthly stipend given directly to millennial caregivers
- Where is this already happening? The UK provides a weekly allowance of £62.10 (about $90) to caregivers providing care for 35 hours a week or more. It’s not a huge amount but can help take some of the financial strain off these caregivers.
- Educational training for social workers, counselors, teachers, and medical personnel on identifying millennial caregivers and supporting their needs
- National caregiving advocacy groups must increase their recognition of millennial caregivers and include millennial caregivers in their political lobbying.
We need a more inclusive conversation about caregiving. Caregivers of all ages are vital members of society and deserve our recognition and support. Millennial caregivers do exist and are not rare. We must champion their cause and direct our attention to addressing their needs in policy, services, and funding. The way we view caregiving must also broaden in scope, ensuring that those who “care at a distance” or provide care in conjunction with other family members feel valued. Every act of caregiving is important. By expanding our conversation about caregiving, we lift up the millennial caregiver to a place of appreciation.
This article was previously published at the website What Millennials Want.
“For, indeed, in the social jungle of human existence there is no feeling of being alive without a sense of identity.”
As Erik Erikson has so rightly typified, knowing “who you are” and “what you are about” helps us make sense of our personhood. Identity helps us carve out a niche in society by defining how we think about ourselves and how we relate to others. The exploration of identity does not occur in a vacuum, and the influence of external factors and persons play an important role in our identity development. This is particularly salient for those young people who provide unpaid care, assistance, and support for their family members with health care needs.
In the blink of an eye, my older brother and I became two of the nearly seven million child and young adult caregivers in the United States. When I was eleven years old, my mother acquired a physical disability as a result of a spinal surgery gone horribly wrong. Only the year before, my mother had run a full marathon in Alaska, her body completely capable of pushing itself to the limit. After the surgery, she became a shadow of her former self. She was unable to bathe without assistance and could not lift her arms to feed herself without tremors of pain racking her entire body.
My brother, nineteen years old at the time, dropped out of college to begin caring for my mother and me. From that point forward, he made every decision carefully considering the possible ramifications for our family. Attending his college two hours away? No longer possible; he needed to be home to help our mother to the bathroom. Going out with his friends on the weekends? Not a chance; that money needed to be used to pay our mortgage. My brother lost the friendship of his peers, the earning potential dependent upon a college degree, and all of his free time. Caregiving wasn’t simply a part of his life; it defined him. Those precious young adulthood years most spend finding their identities were stolen from him. He’d say that he was uncertain of his identity, outside of being “caregiver”.
My life, too, changed forever. The constant worry over my mother’s health and our finances coupled with the tormenting fear of “what-if?” plagued my thoughts. I’d pray every night for God to take away my mother’s pain and give it to me instead. Every morning, I’d wake up, and when I found that I could freely move my limbs around, I’d realize my prayer went unanswered.
Besides the non-stop anxiety, our family’s experience left its mark on me in other ways. I knew what it was like to hide from your family that you were bullied on the first day of seventh grade (and every day thereafter) because you knew there was enough going on at home and didn’t want to add any more stress. I chose to keep quiet because my mother would fight for me. The last thing we needed was my mother hauling herself up to my school in a neck brace, threatening to sue anyone who laid a hand on her child. I learned to hide my emotions and say everything was fine and good, even if it wasn’t. I fault no one for this. My feelings are my own, and I take ownership for whatever I’ve chosen to share or not share over the years. I learned to tell people that I’m a private person and much better at listening to others’ problems than divulging my own.
I remember when I did decide to share what was going on in my life. During my junior year of college; a trusted friend had remarked, “Feylyn, you don’t seem like yourself lately.” I watched her eyes widen in shock as I told her that my family was about to lose our home and that my mother was currently lying in a hospital bed— no more than two football fields away from where we stood — with excruciating pain from back spasms. My sweet friend was overwhelmed, and so was I. She didn’t know what to say, and I didn’t either. I decided then that I wouldn’t say anything to my peers anymore. I’d choose more wisely next time. What kind of person did that make me? Quiet, introspective, and a good listener, certainly. Always available to hear the problems of others and respond empathetically. I enjoyed it and was good at it. I soon found that I could put those good qualities to use in my chosen career as a therapist.
My life experiences reinforced my listening skills, cultivated empathy, and put me on a career path that would allow me to use both on a daily basis. The reasons why I became a therapist are many, but I’d be lying to myself if I thought that caregiving played a trivial role. Indeed, my experience in navigating my identity in the midst of young adulthood may not come as a surprise. Research on identity development has shown that the question of identity for young adults may be answered through their navigation of education, career choices, and romantic partnerships. Furthermore, previous research in the United Kingdom has shown that the experience of providing care for a family member may be a determining factor in the education and career choices for some young adult caregivers. My ongoing qualitative research with young adult caregivers in the US has shown complementary initial findings; the young adult caregivers overwhelmingly report that their educational and career path are significantly influenced by their caregiving roles. Their family experiences may lead them to choose jobs and careers in which they can utilize the skills gained from caregiving, e.g., money management, organization, and a caring spirit. They may also choose careers that put them as far away from caregiving as possible; they may seek lives away from the caregiving duties that they have had forced upon them. Still, others may choose hobbies, seek volunteer activities, and form fashion and music preferences influenced by their caregiving experiences.
In addition to educational and career choices, my research seeks to understand the deeper, internal impacts upon identity development for young adult caregivers. The influence of caregiving upon a young adult’s identity is not inherently problematic. It does, however, beg consideration. I assert that it’s important to consider how young adult caregivers have navigated major life choices and the question of who they are. Were they the authors of their own lives? Did they feel free to pursue their dreams? Do they feel like they missed out on something, and did some options feel unavailable to them? What and who helped shape them into the persons they are today? By exploring these questions, we are left with a better understanding of the role caregiving plays in young adult lives in both adolescence and adulthood.
Feylyn Lewis is a PhD student in Social Work at the Institute of Applied Social Studies at the University of Birmingham in England. A native of Hendersonville, Tennessee and graduate of Vanderbilt University, she is a nationally certified mental health counselor. Her doctoral research focuses on the identity development of young adult caregivers living in the United Kingdom and United States. During Feylyn’s childhood, her older brother was a caregiver for her and their mother who has a physical disability. This experience motivated Feylyn to pursue research and advocacy work for young adult caregivers; thus, she came to England from the United States in 2013 to further study under the expertise of Professor Saul Becker, world-renowned researcher on young people with caring responsibilities. Feylyn’s research with young adult caregivers in the United States is currently ongoing, and she invites 18-25 year old caregivers to contact her if they are interested in participating in her research study. You may learn more about her research by watching the following video: https://youtu.be/Pcte_hA12LI
 Erikson, E. H. (1968). Identity: Youth and crisis. New York: Norton.
 Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95(11).
 Hunt, G., Levine, C. & Naiditch, L. (2005). Young caregivers in the U.S.: Findings from a national survey. Bethesda, MD: National Alliance on Family Caregiving [in collaboration with the United Hospital Fund].
 Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469-480.
 Becker, F. and Becker, S. (2008) Young adult carers in the UK: experiences, needs and services for carers aged 16-24. London: The Princess Royal Trust for Carers.