b'ing stigma-free

 

 

Caregiver loveComments from caregivers of people living with mental health conditions have been occupying my thoughts. Recently, I worked on two reports based on nationwide surveys of caregivers—On Pins and Needles: Caregivers of Adults with Mental Illness (with partners from the National Alliance on Caregiving and NAMI), and soon-to-be published on the Temple Collaborative website, Community Inclusion from the Perspectives of Caregivers of People with Psychiatric Disabilities.

In both of these reports, most of the caregiver respondents self-identified as close relatives—the vast majority as parents. They made it abundantly clear that they, as well as their loved-ones, face many challenges—including stigma.

Almost twenty years ago I was the primary caregiver of a rapid-cycling, suicidal teen, who I referred to as the “teenaged Morticia.” During those seemingly unending four years between my daughter’s 14th and 18th birthdays, life was chaotic and frightening for my entire family. Even though we experienced many of the same issues that caregivers report today, at the time I didn’t think of it as stigma. But I guess it was.

Financial Strain

I regarded the inequities that my family experienced as out-and-out discrimination. I was outraged that in that pre-parity era getting insurance reimbursement was a constant struggle. Claims were always being lost and denied—or lost, then denied. In fact, insurance coverage for my daughter’s treatment might have ended altogether—because she reached the lifetime limit by the time she was sixteen! To my relief along came the first iteration of the federal parity bill, and even though overt discrimination was still legal (albeit somewhat lessened), at least half of the cost for a limited number visits were covered—rather than nothing at all.

Were it not for having really good credit, my family would have drawn even closer to bankruptcy as we supported, financially and otherwise, my daughter’s recovery. Somehow we cobbled together treatment that made a difference, and won the battle to have the school district pay for an individualized education at a private school where, unlike the experience reported by so many caregivers in the surveys, the staff did understand and made a positive difference.

My daughter is no longer Morticia. She has grown up and left home. She has become an accomplished woman—a hospice nurse (maybe there’s some irony in that) who is happily married and expecting her first child.

Social Stigma

The financial burden impedes caregivers’ ability to afford to include their loved ones in all of their own social activities. In these surveys caregivers were emphatic that stigma must be addressed by educating school personnel, employers (and employees), clergy and other community leaders, and the public. They begged for compassion for themselves and their loved ones.

Caregivers said that because of stigma, their social life was compromised and invitations dwindled. One mother, speaking about her daughter reported: She’s fine . . . (but) I have no socialization!

Caregivers reported that their employment suffered too, as they try to make up for the deficiencies in mental health services and supports. Still they wanted to do more, as did this mother: The only way I could support her more is to quit my job and be with her 24/7.

When I think back to those difficult years when my daughter struggled, what sticks out most in my mind is the way that people looked at me. Unlike many of the survey respondents that reported people turned away, or pitied, or even blamed them, I remember people did look at me—with tears in their eyes. Maybe their tears represented the compassion that caregivers expressly called for, but it felt like the tears were just the outward expression of the cliché: there but for the grace of G-d….

 

 

Debbie PlotnickDebbie F. Plotnick, MSS, MLSP is the Vice President for Mental Health and Systems Advocacy at Mental Health America (MHA). Previously, she was the Director of Advocacy and Policy for the Mental Health Association of Southeastern Pennsylvania (MHASP), where she developed policy, organized grassroots advocacy activities, and designed recovery-oriented, community services. In her role at Mental Health America, Debbie provides leadership for mental health and systems advocacy initiatives within its affiliate network, with outside coalitions, industry/business, and policy makers. She provides technical assistance to policy makers, government officials and is frequently called up to speak to the press and the general public about what is needed to create a community-based continuum of mental health care, and to challenge entrenched mindsets and misinformation. She also coordinates the efforts of the Regional Policy Council (RPC), a six person council of MHA affiliate policy experts.

Debbie earned a degree in Political Science from Bryn Mawr College. And she holds dual master’s degrees in Social Service (MSS) and Law and Social Policy (MLSP) from the Bryn Mawr Graduate School of Social Work and Social Research. But her real understanding of mental health recovery and her passion comes from the people she works with and for, and her true expertise comes from her own lived experience, as a family member, and a mental health systems advocate.   


Helping hand caregivers

Caregiving has many faces. Family caregivers range from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. But despite considerable gains in public visibility of family caregivers, many continue to experience stigma, and struggle to maintain their own health and well-being.

Caregiving is a national phenomenon. It will only increase in prominence in the future. The population of 35 million elders will double by 2030. So the number of people who need eldercare will continue to grow rapidly as the population ages. The number of adult children caring for a parent has tripled over just the past 15 years.

Find Strength in Numbers

If you are a family caregiver yourself, the fact is you are not alone. Look around – statistically, two out of every five adult Americans are family caregivers – that’s tens of millions of family caregivers across the country. You probably know someone who is caring for an elderly mother with Alzheimer’s, or a child with autism, or a partner with cancer. You have strength in numbers and help is never far away. Even caregivers of those with rare diseases can find connectedness: An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the U.S. and another 30 million in Europe.

It’s never too early to begin a conversation with your friends or other caregivers. Exchange ideas on caregiving and use your friends and fellow caregivers to create a support system. Talk openly with your friends about your caregiving challenges. You will probably find that they can sympathize or know someone else in your situation – and they may even be caring for someone, too! Nearly everyone will be a caregiver at some point in his or her life. It’s nearly as certain as death and taxes.

Recognize the Burden

Caregivers endure stress caring for their loved ones. Feelings of shame about certain illnesses contribute to caregiver burden, and negatively impact caregiver functioning and wellness. This is compounded as both the ill person and the caregiver experience the stigma. Some caregivers may face discrimination, frequently at work. Others may experience social exclusion. Often stigma is strongly associated with negative stereotypes of older people and characteristics of chronic illnesses. This reinforces the importance of support for caregivers.

Data show that there are significant costs of caregiving. For instance, those who work while fulfilling their family caregiving responsibilities have a higher incidence of major health conditions (such as depression, hypertension, and diabetes) than non-caregivers – directly as a result of the stress from their caregiving challenges. And ignoring their own health (sleeping, eating, exercising, visiting a doctor) further undermines caregivers’ health. Caregiver stress can erode the immune system and actually increase susceptibility to illness.

Caregiving can feel like an emotional rollercoaster. Many family caregivers feel overwhelmed, and experience feelings of anger, depression, and guilt. All these feelings are normal. And for many people caregiving can ultimately be one of the most rewarding experiences of their lives! To be successful, support from friends and family is needed.

The journey to caregiving sometimes starts slowly – when a spouse is diagnosed with ALS (Lou Gehrig’s disease), or a child develops a mental illness. Maybe it happens all of a sudden – when a child is born with Tay-Sachs or a parent has a stroke. However it began, there are millions of caregivers facing challenges and needing support.

Help is the most important step, but admittedly it is not always easy. The very symptoms of depression, such as lethargy and hopelessness, can rob one of the will to seek help. Embarrassed by the stigma of depression, and simply denying that anything is wrong, the caregiver may retreat into isolation. These can all keep one from taking that most important first step – offering, and accepting, help.

 

 

John Schall hi resJohn Schall is CEO of the non-profit Caregiver Action Network (CAN). Based in Washington, DC, CAN works tirelessly to advance resourcefulness and respect for family caregivers across the country. CAN’s free educational resources assist in learning to develop effective caregiving coping skills. CAN has tips and tools that can help caregivers avoid burnout and stay healthy themselves while caring for their loved ones.

CAN recommends that caregivers:

  • – Seek support from family and friends.
  • – Accept offers of help and suggest specific things people can do to help.
  • – Learn how to communicate effectively with doctors.
  • – Take respite breaks often.
  • – Watch out for signs of depression and don’t delay in getting professional help when they need it.

Connecting caregivers to one another is also vitally important because caregivers need to know that they are not alone. CAN maintains the Family Caregiver Forum so caregivers can connect and help each other. This online forum is a safe place where any caregiver can ask a question of others dealing with similar circumstances and get thoughtful and helpful responses.

So if you need help managing any of the many challenges that come from caregiving – such as isolation, feelings of anger or depression, or communicating with doctors – feel free to check out CAN’s free resources at CaregiverAction.org. And if you are a patient who relies on a family member for help, do them a favor and send them to CAN’s resources because they need someone to lean on, too!


 

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