Caregiver Issues / Stress

Caregiver with old woman in wheelchair

Caregiver issues can affect both professional caregivers who are paid to provide care to individuals in their homes or in a health care setting and unpaid individuals who provide care to a loved one, friend, or family member. These issues may include stressisolation, and fatigue, to name a few. It can be rewarding to care for a loved one or family member, but it can also be stressful, traumatic, or otherwise difficult. 

Those who become stressed or anxious or experience other mental health issues as a result of providing long-term care may find the services of a mental health professional to be helpful.

Understanding Caregiver Stress

Caregivers can generally be divided into two groups: One group includes caregivers (usually unpaid) who provide care to a loved one or friend who is ill, disabled, or experiencing symptoms of aging. This care may be temporary, such as when a spouse or partner has surgery, or long-term, such as when a child experiences physical, intellectual, or emotional disabilities. Care is generally provided in the home of the person being cared for but may also be provided in the caregiver's home, especially when long-term care is necessary. 

The second group consists of caregivers who are paid to provide care in a person's home or in a long-term care setting. They might be professionally trained and hired through an agency or an acquaintance employed by family members. Both paid and unpaid caregivers may experience physical, mental, and emotional strain as a result of their caretaking. Because caregivers often become attached to the person they are caring for, it may be distressing if that person's health further declines. 

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Recent statistics show that 80% of long-term care in the United States is provided by unpaid or informal caregivers. Of these, 61% are women, most have reached middle age, and 59% also have jobs. Though caregiver stress can affect anyone providing care, research shows that 75% of caregivers experiencing significant strain are women. Family caregivers have been shown to be less likely than people who do not provide care to attend to their own health and self-care needs, making it more likely that their own well-being will be negatively affected. Caregivers between the ages of 66 and 96 who experience stress have a 63% higher risk of dying within four years than non-caregivers in the same age range. 

Thirty-five percent of caregivers find it difficult to make time for themselves, while 29% have trouble managing stress, and another 29% report difficulty balancing work and family issues. Some other common issues that caregivers may experience include, but are not limited to: 

  • Anger and frustration: It can be distressing to put one's life on hold to care for someone else or to take care of a person who is irritable, becomes upset easily, or wanders away often.
  • Anxiety and fear: A caregiver may worry about financial difficulties, their own health and mortality, or the decline and eventual death of a loved one.
  • Depression: Between 40 and 70% of family caregivers experience symptoms of depression. Isolation, loneliness, and lack of self-care might all contribute to the development of depression symptoms. 
  • Grief and sadness: Watching a loved one's heath decline rapidly can be a deeply affecting experience.
  • Guilt: A caregiver may feel guilty for not being able to provide better care or for not being able to pay as much attention to other areas of life. 
  • Isolation and lonelinessUnpaid caregivers may spend all of their free time caring for another person and have no time to themselves. They may have to reduce their work hours or adapt their lifestyles and personal relationships. Individuals who are unable to interact with others or spend time tending to their own needs may experience emotional distress as a result.
  • Physical strain, illness, and exhaustion: Caregivers may find themselves without time to exercise, eat properly, or get enough sleep. Those who care for others are also more likely to have a weaker immune system and spend more time sick than non-caregivers. 

Caregivers are statistically more likely to experience stress if they are female, have depression or are socially isolated, or if they have financial difficulties. Living with the person one cares for, spending a high number of hours providing care, and difficulty with coping or problem-solving are also risk factors for caregiver stress and burnout.

The Sandwich Generation

Individuals who provide care for an aging parent while also raising their own children have come to be known as the "Sandwich Generation." Many members of this group also have full-time employment, but they may find it necessary to reduce their work hours or leave their jobs altogether in order to tend to their parents' needs. This can add to stress by creating financial difficulties. About 15% of these individuals provide financial support to both a parent and a child, which can quickly drain their resources, especially when employment hours have been reduced. Dividing time between children and ill and aging parents may also leave these individuals with little or no time for themselves, their partner or spouse, or their own health care needs. 

Members of the sandwich generation may be more likely to become isolated than caregivers who do not have children at home, since these individuals are providing care for both their parents and their children and thus have even less time to seek out relationships and other social connections. Many of these caregivers may also feel guilty for not having enough time to do everything they wish to accomplish or feel they "should" be doing. 

As with any other type of caregiving, it is important for individuals to take breaks, make time for themselves, eat well, and exercise. Individuals who find themselves stressed or experiencing difficulty coping with the often-difficult task of caregiving may wish to seek counseling, join a support group, or even seek unofficial support from other caregivers who are in a similar position. Encouraging one's parents to make financial arrangements and other plans for their care, in case they do fall ill, may be a helpful precaution. 

Therapy and Self-Care for Caregivers

Therapy can be beneficial for caregivers who have become isolated, overwhelmed, anxious, depressed, or who lack support from others. The work of caregiving requires strength and resilience, and caregivers who do not take care of themselves may experience burnout and become susceptible to mental and emotional distress as well as physical health challenges. Just over half of the caregivers who reported a decline in their health due to caregiving said that this decline made it difficult for them to provide good care. Psychotherapy--which can occur in an individual session or in a group--may provide the help and motivation for caregivers to take care of themselves, meet their needs, and continue their work. Therapy can help an individual become better able to cope with grief, stress, and isolation. 

Caregivers may find it easier to take care of themselves and reduce any stress they experience if they:

  • Attend classes and training courses to learn new skills. These are often taught through a hospital or at a local chapter of the American Red Cross.
  • Avoid isolation. Associate and interact with other people, especially other caregivers. Make time to meet with friends, however briefly. 
  • Find organizations and associations who specialize in helping caregivers.
  • Seek support from family and accept help that is offered. Caregivers may find it especially important to be honest with the self and others about what can reasonably be accomplished alone. 
  • Develop self-compassion. Those who are compassionate to others may criticize themselves or hold themselves to high standards, which can exacerbate a distressed mental state. Recognizing that one can only do so much and comforting oneself when things become difficult can help one become better able to cope with difficult situations.

Maintaining a self-care routine may help those who care for others avoid emotional overwhelm. Preparing nutritious meals, engaging in physical activity, and getting enough sleep are all important aspects of good health, but many individuals providing care to others may find it difficult to make time to do so. It may be even more difficult to make time to engage in leisure activities such as reading a book, watching television, or pursuing one's hobbies, but doing so may help an individual regain energy and find it easier to provide care. 

Physical Health Concerns for Caregivers

Physical health can quickly become an area of concern for caregivers. Many caregivers report difficulty finding time to visit the doctor for themselves, and they might also neglect their own health care due to financial difficulties. However, caregivers who develop serious health problems may end up unable to care for anyone else. People providing care to others may experience health concern such as:

  • The exacerbation or return of a preexisting or previous illness. 
  • Hypertension
  • Insomnia or fatigue
  • Frequent headaches
  • A weakened immune system
  • Substance abuse (drugs and/or alcohol)
  • An injury caused by improper lifting or transferring of the person being cared for

Taking time for basic personal needs can help reduce one's risk of developing physical health problems.

Case Examples

  • Elderly wife experiences difficulty caring for aging husband: Marcia, 65, enters therapy when she has no one else to turn to. She is recently retired and has been married for 40 years to Frank, 75. The two of them had looked forward to Marcia’s retirement, planning to travel around the country in their RV, but only two months after Marcia retired, Frank had a stroke. The stroke left him paralyzed on one side and unable to express himself verbally. After several months of rehabilitative therapy, Frank is able to walk with a cane and speak, but his speech is often garbled and difficult to understand. Frank is often moody and expresses great frustration with his disabilities, and Marcia feels lonely and isolated. Because Marcia and Frank have no children and no relatives nearby, nearly all of Frank's care falls to Marcia. At times, she tells the therapist, she feels as if she is Frank's parent rather than his wife.  The two of them take their frustrations out on each other, she reports, and their home often feels like a "battleground." Marcia feels guilty about not having patience with Frank. She is dissatisfied with her own health, as well. She no longer has much time to cook or take regular walks, so she often eats frozen or fast food, has put on 25 pounds since his stroke, and has little energy after doing all the housework and laundry. In therapy, Marcia is able to acknowledge and begin to work through her grief over the “loss” of the man who was her husband and the future she had anticipated with him. The therapist helps her explore stress management strategies and other ways to cope with her frustration and anxiety. Marcia resolves to make time to exercise and prepare meals, realizing with the help of the therapist that if she does not feel energized or good about herself, she will find it that much more difficult to care for Frank. Marcia and her therapist also address her isolation and explore ways she might become part of a community once again. 
  • Woman overwhelmed by multiple caregiving positions in middle age: Marisol, 47, seeks professional help for stress, anxiety, and emotional overwhelm when she finds herself experiencing difficulty tending to the needs of her children, her husband, and her parents, who live in another state. Her father was recently diagnosed with dementia, Marisol reports, and her mother calls often, seeking advice and support. Marisol feels guilty that she cannot provide more help to her mother, but she also feels relieved that she is not closer, telling the therapist that she has enough to deal with at home. She has two children in high school and one in elementary school, and she works part-time, while her husband works long hours, leaving her responsible for household affairs. Marisol tells the therapist that she feels as if no one cares about her emotional upset, that she is always "needed" but no one stops to ask her what she needs, and that she feels guilty for having these feelings as a wife and mother. The therapist helps Marisol understand that her needs are not less than those of others just because she is "supposed" to be a caregiver. Together, they explore ways that Marisol can reduce her stress levels and ask for emotional support from her family. The therapist helps Marisol research support groups local to her mother's area for the family members of people with dementia, and Marisol brings her family in for a family therapy session where they discuss ways they could spend more time connecting emotionally and become closer as a family. 

References:

  1. Bogolea, K. (2013). The Sandwich Generation. Retrieved from http://www.caregiver.com/channels/rural/articles/sandwich_generation2.htm 
  2. Family Caregiving: The Facts. (2011, September 7). Retrieved from http://www.cdc.gov/aging/caregiving/facts.htm 
  3. Greene, R. (2012, July 16). Caregiver stress fact sheet. Retrieved from http://womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html 
  4. Neff, K. (2012, May 23). Why Caregivers Need Self-Compassion. Retrieved from http://www.huffingtonpost.com/kristin-neff/caregivers_b_1503545.html
  5. O'Brien, S. (2015, March 31). Being stuck in sandwich generation is no baloney. Retrieved from http://www.cnbc.com/2015/03/31/being-stuck-in-sandwich-generation-is-no-baloney.html
  6. Stress management. (2015, March 7). Retrieved from http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784 
  7. Taking Care of YOU: Self-care for family caregivers. (2012, December 30). Retrieved from https://caregiver.org/taking-care-you-self-care-family-caregivers 
  8. Tarantine, R. (2014, September 7). The Sandwich Generation: Who is Caring for You? Retrieved from http://www.huffingtonpost.com/ruth-tarantine-dnp-rn/baby-boomers-caregivers_b_5733782.html 

 

Last updated: 08-24-2015

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