Blog Summary: Caregivers and Stress

            Caregiving in the 21^st century is a complicated and sometimes controversial issue.  It is interwoven with health insurance issues and the economy.  Family caregivers provide large amounts of unpaid work in addition to being paid caregivers for their children, parents or other relatives. 

Society really needs to step up to the plate and both recognize the contribution family caregivers make to society, and provide them with financial and emotional support and respite opportunities.  Maintaining the physical and emotional health of family caregivers should be top priority in a society that wants to contain health care costs.

In addition to social effects, caregiving is a difficult and complicated emotional process for the individual.  Feelings of anger, guilt and grief can be mixed with feelings of love, pride at a job well done, and a sense of purpose.

I hope this blog has helped readers to be more aware of these issues, and to perhaps think about ways they can contribute.  If you are a caregiver, take the time to care for yourself and reach out to others for support.  If you are not a caregiver, offer your help through a volunteer organization or to individuals you know, to provide respite and emotional support.  And if you think you might become a caregiver someday, be sure to educate yourself now, before you find yourself becoming overwhelmed.

CONTROVERSIAL TOPIC: PAYING FOR CAREGIVING?

          Two recent articles have highlighted a newly controversial topic in the area of caregiving.  According to Yuxing Zheng of The Oregonian, the Affordable Care Act has a provision that “would largely prohibit guardians from serving as the paid caregiver of an adult child with developmental disabilities” (Zheng, 2013).  This means that parents who are guardians would no longer be eligible to receive payment for caring for their child.
          Some advantages of this could be that professional caregivers would have a certain level of training to ensure that they have the qualifications to care for their clients.  Additionally, jobs for professional caregivers could increase. 
          On the down side, many parents of severely disabled adults have given up careers to become full-time caregivers for their children, and rely on caregiver payments for income.  If the parents no longer receive caregiver payments, they might have to place their children into an expensive nursing facility.

          Zheng tells the story of one Oregon resident, Deana Copeland, who cares for her multiply-disabled 22 year old daughter.  As Copeland points out, paying for her daughter to be cared for at a facility will be much more expensive than keeping her at home (Zheng, 2013).  Additionally, Copeland expresses that she can provide care for her daughter in ways that unrelated caregivers cannot.
          This sentiment is echoed in another article which discusses California’s new budget restrictions on caregivers.  Gary Cohn of Capital & Main says that in his 2014-2015 budget, Governor Jerry Brown proposes limiting state home health care workers to 40 hours per week (Cohn, 2014).  This is designed to avoid having the state pay overtime as required by the  Affordable Care Act (Cohn, 2014).  In light of the slow recovery from the 2008 recession, costs will need to be contained.  Also, due to the aging of the baby boomer generation and advances in medicine, the number of people requiring care continues to increase, raising costs.         
          Nonetheless, according to Cohn, cutting overtime for home health workers would be a penny-wise, pound –foolish strategy.  This is because the state’s home health care program is designed to keep seniors and disabled adults from living in costly institutions (Cohn, 2014).           
          Although many of the affected caregivers are not relatives, they still feel connected to their clients because they spend so many hours with them.  One such caretaker, a long-time neighbor, points out that because she is so attuned to her client, she has “kept her out of the hospital for two years” (Cohn, 2014).
          This issue highlights the importance of understanding health issues from multiple perspectives, especially when developing policy with far-reaching effects.

  

References

Cohn, G. (2014).  Careless:  how Governor Brown is harming California’s seniors and disabled—and
          the people who care for them.  Capital & Main.  Retrieved from 
          http://capitalandmain.com/careless-how-governor-brown-is-harming-californias-seniors-and-disabled-and-the-people-who-care-for-them/.
Zheng, Y. (2013).  Disability rights advocates, families fight new provision of Affordable Care Act. 
          The Oregonian:  Portland, Oregon.  Retrieved from
          http://www.oregonlive.com/politics/index.ssf/2013/08/disability_rights_advocates_fa.html.

 

Strategy Presentation Video

Here is the video of my lesson presentation at our class.  Sorry it has a "watermark" on it--I used a free video editor to cut it down to 10 minutes.  I had trouble uploading it directly;  I think there is some kind of bug in it because I was able to upload other videos I had.


Click here for Strategy Presentation Video.

Review of HRSA Podcast “Caregivers Count! Support for Women & Families with Special Needs Children”

          While looking for caregiver wellness information recently, I ran across a 2009 podcast of a webinar given by the Maternal and Child Health division of the Health Resources and Services Administration, a federal agency. The webinar includes commentary by three women who have both professional and personal experience in caring for children with special health care needs (CSHCN). The webinar, "Caregivers Count!  Support for Women & Families with Special Needs Children," is chock-full of good information for caregiver self-care and wellness, so I wanted to share some of those ideas with you. If you are interested in more details, you can access the podcast and the transcript here.
          Jan Moss, director of Community Leadership and Advocacy and mother of two adult CSHCN, calls parenting a disabled child “extreme parenting” because there is no written job description and you deal with whatever comes day-by-day.
          However, Luwenn Jones, consultant and mother of two CSHCN, says she thinks of parenting her children as either a job or a marathon. She notes that employees are more effective and efficient if they “get adequate rest, scheduled breaks for physical and mental relaxation, vacation time, proper training, and peer support.” She also comments that marathon runners must pace themselves, get training, build a support team, take rest days after days of intense activity, and have proper equipment in order to maintain their body. Jones says that caregivers must do these things, too, in order to perform their best and continue to contribute.
          Rosemary Johann-Liang, a physician and mother of two CSHCN, talks about the need for caretakers to “keep the tank filled” by making various self-care activities a priority. She recommends making time for filling spiritual and psychological needs, daily personal/quiet time, weekly time with friends, physical renewal, and emotional renewal. All three speakers underlined the need to ask for help and to delegate. Johann-Liang says she has cultivated a “Team 1” instead of trying to be the “Lone Ranger.”
          The speakers suggested delegating daily tasks to someone like a friend, neighbor, or an older child in order to relieve daily stresses. They emphasized the need to be specific about what you need. They recommended asking for help from groups that do volunteer groups such as faith-based groups, community groups, or youth groups. And the speakers also strongly urged caregivers to seek respite through special programs or by trading with another family.
          Finally, both Jones and Moss recommend using Internet resources online support groups to connect with other parents of CSHCN and to find information. Some of the websites they recommend include Family to Family Network and Family Voices.

PUBLIC SERVICE ANNOUNCEMENT (PSA)

PSA:  FINANCIAL AND PSYCHOLOGICAL STRESSES AND CAREGIVERS OF DISABLED CHILDREN

Format:  Radio

Background Noise:  Office sounds—printer, phones ringing, low chatter.

Jo:                    Hey, Annie, the rest of the girls are planning to go out after work on Friday, wanna go?

Annie:             That sounds great, Jo, but I have to work extra Friday night.  I have to take Nathan to the doctor next week so I’ll miss some work, and I need to make it up.

Jo:                    Aww, can’t you just take some vacation time?

Annie:             That would be nice!  But I’ve already used up what I had.  Remember when Nathan had some problems at school last month?

Jo:                    Can’t you come?  You look like you could use a couple of drinks.  C’mon, maybe you could just cut a couple of hours pay this week.

Annie:             No way!  I haven’t gotten a child support check in two months.  Nathan’s afterschool sitter is so expensive, and I’m afraid to get behind on the rent. 

Jo:                    Wow, Annie, I’m sorry.  We’ll miss you.

Annie:             I’ll miss going.  I sure could use a break!!     

Announcer:     Recent research confirms that the stresses associated with caring for children with a disability affect caregivers’ ability to provide quality care for their children.  The study, conducted by researchers at Vanderbilt University, and the University of Arkansas, used data from the 2010 Ohio Family Health Survey to examine factors such as health care coverage, access to care, utilization of healthcare, and unmet needs. 

                        The study found that 12.3% of all children had a disability, and their caregivers tended disproportionately to be single mothers, with lower education and incomes. 

More than twice as many caregivers of disabled children suffered from serious psychological distress as caregivers of nondisabled children.    Additionally, caregivers of children with a disability were twice as likely to have high levels of financial stress, and almost three and a half times as likely to have both high levels of financial stress and very high levels of psychological stress.

Goudie, A., Narcisse, M-R., Hall, D.E., and Kuo, D.Z. (2014).  Financial and psychological stressors associated with caring for children with a disability.  Families, Systems & Health, 32, 3, 280-290.

 

Facts and Figures

According to the National Alliance for Caregiving (NAC), “we need to help current at-risk caregivers so that they can continue to provide care to family and friends without sacrificing their health, financial security, and quality of life in the process” (NAC, 2005, p. 32).

Who does the caregiving?

*More than 34 million unpaid caregivers care for ill or disabled people aged 18+ (CDC, 2011).

*90% of long-term care is provided by unpaid caregivers (CDC, 2011).

*21% of households in the U.S. have caregiving responsibilities (CDC, 2011).

What do caregivers do?

*79% of caregivers take care of someone 50 or more years old (NAC, 2005, p. 10).

*20% of caregivers take care of someone 18-49 years old (NAC, 2005, p. 10). Of these, 23% care for someone who is mentally ill (NAC, 2005, p. 11).

*50% of caregivers help perform personal care Activities of Daily Living, such as dressing or getting out of bed (NAC, 2005, pp. 14-15).

How are caregivers affected?

*35% of caregivers experience emotional stress as a result of caregiving (NAC, 2005, p. 2).  

*51% of caregivers lose time with friends and family; 44% give up vacations, hobbies and social time, and 26% get less exercise than when they were not caregivers (NAC, 2005, p. 21).

How do they cope?

*Strategies used for coping with stress include prayer, talking with friends or relatives, reading or seeking information on the Internet about caregiving, exercising, talking to a counselor, and taking medication (NAC, 2005, p. 20).

What do they need?

*Caregivers expressed a need for help with finding time for self, balancing work and family responsibilities, managing emotional and physical stress, and finding easy activities to do with the person they care for (NAC, 2005, p. 26).

References

The Centers for Disease Control and Prevention (CDC) (2011). Family caregiving: the facts. Retrieved from http://www.cdc.gov/aging/caregiving/facts.htm.

The National Alliance for Caregiving (NAC) (2005). Caregiving in the U.S. Retrieved from http://assets.aarp.org/rgcenter/il/us_caregiving_1.pdf.

Caregivers and Depression

A father seeks help for his mentally disabled adult son. As he talks about the situation, tears begin to spill out of the corners of his eyes. His wife has diabetes and heart problems so she cannot handle the stress of caring for her son. She lives with her daughter. The father, who works a 12 hour shift at a plant, has built a little apartment on the back of his house so his son will have a place to stay, but the son keeps him awake all night playing loud music. The father says that sometimes he becomes "sentimental" when thinking about his son. He is sad that his son has not been able to achieve the life he wanted for him, and fearful of what will happen to his son as he, the father, ages.

In an article on the Caregiver Action Network website, Pat Kaufman notes that when a family member is ill, attention is usually focused on the ill person, placing caregivers in a "uniquely difficult position" (Kaufman, 2014). Kaufman says that as caregivers start to understand the changes in their own lives and realize the extent of their duties, they can develop emotions ranging from anger and resentment, to sadness and lack of enjoyment in life (Kaufman, 2014).

When caregivers feel angry or sad, it is important to realize that these emotions are not selfish. Rather, they are a sign that the body or the person is overwhelmed. Like a warning light, it is important to heed these signs and seek help before the depression becomes unmanageable. Treatment options can include simply being more vocal and seeking help from others, or forming or joining a support group. For those who are isolated by their caregiving circumstances, web-based support groups are an option. Some people may also benefit from talking to their primary care physician about temporary medication.

When caring for someone we love, taking care of ourselves can feel selfish. But only by spending time taking care of our own mental and physical health needs can we best preserve our ability to give more to our family member when the need arises.

Kaufman, P. (2014). Caregivers and depression. In Caregiver Action Network (website). Retrieved from 

     http://www.caregiveraction.org/profiles/tools/caregivers-and-depression/.