Caregiver Stress It’s Real, and Its Impact Can Be Severe; How to Avoid the Epidemic

‘I’m so stressed out!’ ‘I just can’t take it anymore!’

Certainly, almost all of us have made one, or both, of these proclamations in response to any number of events that have occurred in our lives. Take a moment now to think of how you felt during those moments, and you will get a glimpse into the daily lives of our nation’s family caregivers.

Approximately 44 million Americans (21{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of the adult population) provide unpaid care to someone in need. While most people think that nursing homes provide the majority of long-term care, the U.S. Department of Health and Human Services estimates that informal caregivers actually provide 80{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of the long-term care in the U.S. As our population continues to age, demands for care will steadily increase, and caregiver stress, unless recognized and remedied, will become even more pervasive.

A caregiver is anyone who helps another person in need with daily tasks, such as bathing, cooking, eating, taking medications, dressing, using the bathroom, shopping, housecleaning, and the like. Typically, the person receiving care has a medical condition that makes them unable to perform these tasks for themselves, or at least without some assistance. According to the U.S. Department of Health and Human Services, 61{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of our nation’s caregivers are women. Our nation’s caregivers are mostly middle-aged, with 13{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of caregivers being 65 years old or older.

Caregiver stress is real, and its impact can be severe. A spousal caregiver over the age of 65, who is experiencing ongoing mental or emotional stress as a result of providing care, has a greatly increased risk of dying over those people in the same age group who are not caring for a spouse. Providing care is physically and emotionally demanding, especially when the care recipient requires 24-hour care. Very often, the caregiving spouse neglects his or her own health issues, which are usually compounded by stress, because he or she is too busy addressing the care needs of the spouse. When an adult child is the caregiver, the caregiver generally experiences additional stress, as they have other responsibilities outside of caregiving, such as providing care for young children, running their own household, managing their professional life, and maintaining a busy social life.

Many caregivers provide care without realizing the impact of caregiver stress. Obvious physical signs of stress include, but certainly are not limited to, fatigue; high blood pressure; irregular heartbeat or palpitations; chest pain; back, shoulder, or neck pain; frequent headaches; digestive problems; and hair loss. Caregivers experiencing sustained stress may also exhibit a weakened immune system, which means they will be more susceptible to colds, flu, and other infections. As the majority of these signs are not open and obvious, it is important for a caregiver to be self-aware. It is also important that the caregiver be asked whether they are experiencing any of these signs.

Emotional signs of stress are usually not easily observed. These signs include a gamut of feelings, including but not limited to anxiety, depression, irritability, frustration, lack of control, and isolation. A stressed caregiver may also report or exhibit mood swings, memory problems, and/or general unhappiness with their position as a caregiver, including resentment toward the care recipient and family members who do not contribute in any meaningful way.

Additional signs of caregiver stress may be observed. The caregiver may be missing meals or eating an unhealthy diet for a period of time, such that their weight either increases or decreases dramatically. An overwhelmed caregiver will often miss or delay their appointments, whether medical or social, as they often give up their ‘me’ time. They will stop engaging in their usual activities and often lose connections with friends and family. Further, they may stifle feelings of anger and frustration, which then surface as angry outbursts directed at family, friends, co-workers, or even strangers. Overall, they may seem sad, depressed, or hopeless, and show a loss of energy.

Most often, caregivers have difficulty asking for help. Either they do not recognize the stress they are under, or they are so stressed that they feel hopeless as to help being available. Caregivers will also often express feelings of extreme guilt associated with asking someone else to provide care in their stead, even if only for a short period of time. In this regard, it is very important for the family and friends of caregivers to encourage regular respite for the caregiver and to ensure that the caregiver takes these regular breaks from caregiving. Respite can be provided in home or at a facility and may take the form of day care or involve a short stay at the facility.

In addition to regular respite, there are many ways that caregivers can reduce their stress. First and foremost, it is important for caregivers to learn about programs that are available to assist with caregiving and how to qualify for such assistance. There are a variety of programs available, including meal delivery, home health care, day care, transportation, and the like. When assistance is available through these programs, clearly it is important to accept the help offered. When a family member or friend offers to help, the caregiver should offer a list of ways to help, while allowing the friend or family member to choose what they would be most comfortable doing.

A caregiver should objectively look at the care they are providing and determine whether it may be done more efficiently. For example, it would likely be preferable to purchase a new washing machine and dryer than to continue to use a public laundromat. It may be worthwhile to obtain an emergency-response system that would allow the person being cared for to summon help if needed. Likewise, an intercom system or even a Web camera can allow for remote monitoring of the person requiring care. Finally, for dementia patients who wander, a mobility monitor may be employed that will sound an alert if the person being cared for wanders outside of a previously set range. In addition, the caregiver should prioritize tasks, use lists, and establish a daily routine with realistic goals. A caregiver should also be careful not to take on additional projects, such as hosting a holiday meal or agreeing to help with a remodeling project.

Actively taking care of their own emotional health is a must for caregivers. Some caregivers find individual counseling to be helpful for dealing with the variety of emotions that caregiving evokes. Many different support groups also exist, some of which are specific to the illness being suffered by the person in need of care.

Support groups are great for developing friendships with other caregivers and also for caregivers to learn improved ways to provide care or to cope with the difficulties they experience when providing care. It is also vital for a caregiver to remain in touch with family and friends — or for family and friends of the caregiver to make sure that they stay in touch.

Moreover, a caregiver should be sure to include some fun in their weekly schedule. Taking in a movie, going for a walk, or meeting a friend for coffee and conversation can be delightful distractions from caregiving stresses. Although some may not consider this fun, a caregiver should be sure to get regular exercise. Exercise provides stress relief and has a positive effect on mood. In addition, the caregiver should plan healthy meals and adhere to a sleep schedule that ensures they will receive adequate, ongoing rest.

When a caregiver is cognizant of the signs of caregiver stress and actively works to combat this stress, he or she will be much better able to provide care and for a much longer period of time. Whenever possible, the caregiver should not be alone in this endeavor. Family and friends should also be sure to support the caregiver and to be on the lookout for any signs of stress.

With the continued graying of our nation and the anticipated increase in caregiving by family members, if we do not adhere to these practices, our nation’s next disabling epidemic will likely be caregiver stress. v

Gina M. Barry is a partner with the law firm of Bacon Wilson, P.C. She is a member of the National Assoc. of Elder Law Attorneys, the Estate Planning Council, and the Western Mass. Elder Care Professionals Assoc. She concentrates her practice in the areas of estate and asset-protection planning, probate administration and litigation, guardianships, conservatorships, and residential real estate; (413) 781-0560; gbarry@baconwilson.com