By JENNIFER L. ROWE, LCSW
Caregivers have multiple roles that evolve over time when caring for a loved one
(National Academies of Sciences, Engineering, and Medicine, 2016). There is an expectation for the caregiver to always provide excellent care, never ask for assistance, and be a martyr regardless of their emotions. The expectation creates high standards, which lead to guilt, shame, and a sense of failure if a caregiver does not appear to meet the expected criteria. The idea is for caregivers to be molded into a cookie-cutter role. A caregiver’s individuality, as well as the individuality of the person cared for, can be overlooked.
ROLE CHANGES
A caregiver’s role can change in the moment or by day, as each day may be different from the prior. If a need for the use of community resources arises, a change will occur in a caregiver role. Generational differences may contribute to the response of the caregiver during times of significant change. For an adult child taking care of a geriatric parent, the adult child’s personal life can intersect with their role as a caregiver (National Academies of Sciences, Engineering, and Medicine, 2016). Viewing role changes in the context of job titles can be helpful. Roles can include, but are not limited to, advocate, banker/financial planner, chef, shopper, and taxi. While this is not a comprehensive list, it helps to identify why job descriptions note, “Other duties as assigned.”
A caregiver adapts to role changes. For example, a gentleman caregiver who has never cooked, cleaned, or shopped for food adapts to an unfamiliar role. Female caregivers who have never managed funds may become financial managers. Role reversal is a common term used when a child becomes the parent. Reversals can be a challenge, as the caregiver tries to meet their parents’ needs, because the assistance may not be welcome. A son may hire a home-care aid for his mother, and his mother may fire the aid or refuse to let the aid in her home. A loved one may also independently make needed changes, such as a person with dementia who chooses to give up driving. The person may also minimize their need for care to avoid burdening others (National Academies of Sciences, Engineering, and Medicine, 2016).
CHANGES IN LEVELS OF CARE
The “what if” question is often at the forefront of the caregiver’s mind. “What if mom falls in the middle of the night?” “What if dad needs more care than I can give him?” The “what ifs” begin as a loved one’s physical or personal safety changes. During the “what ifs,” services can include home-delivered meals, companion services, home health care, adult day care, senior apartments, assisted
living, nursing home, and hospice. In-home services can be utilized individually or in combination. Caregivers are not selfish when seeking assistance to meet the needs of their loved one and of themselves. Often caregivers neglect themselves while providing care. A caregiver can immediately relay when their loved one last had medical care, but when asked the last time they had medical care, specialist care, or a dental appointment, there is often a long pause and a response of not remembering (National Academies of Sciences, Engineering, and Medicine, 2016). Professionals emphasize the need for self-care and mantras, such as, “Before I can take care of others, I must take care of myself.” A caregiver’s worst fear is something happening to them, leaving them unable to provide care. Taking care of oneself first is a benefit in assisting with taking care of a loved one.
When considering the need for in-home or out-of-home services, there is an emotional impact that must also be weighed as it is difficult to ask for help. At some defining moment, it becomes clear that in-home assistance is needed. That moment differs for each of us. In cases of persons diagnosed with Alzheimer’s disease, it may be when a loved one wanders or has certain behaviors. For a person with multiple sclerosis, physical changes in the body may require the need for home care services such as bathing and dressing. Also, a caregiver may develop their own health problem.
Caregivers have difficulty talking about assistance due to perceptions of being able to balance it all. Caregivers may experience a need to justify choices to family members, friends, and coworkers. The choices may bring forth feelings of denial, guilt, and even anger, in both the caregiver and those around them. Second-guessing decisions is natural as there will be emotional ups and downs regarding whether the caregiver made the right decision. Remember, these caregivers are making decisions based on caring for themselves, their loved one, and what is best for themselves and the person they are serving.
It is not uncommon to experience grief or loss as the need for assistance with care requires a transition to in-home care. The loss of autonomy is shared by both the caregiver and those cared for. Feelings of anger at self, the person needing care, and the illness/disease are part of the grief process. While varying emotions are a normal reaction, caregivers may feel ashamed about negative thoughts or feelings toward the person in need of care.
Often there is a sense of violation to self, a loved one, and privacy as services begin in the home. These are emotions caregivers feel at some point during care. The frequency, intensity, duration, and type of emotions, although individualized, are not uncommon.
Services not mentioned previously can include in-home or out-of-home respite. Caregivers can use respite services to have time at home, recuperate from an illness, or attend special events. Costs vary by region and by payer source. Please contact local agencies to obtain respite information.
FINANCIAL ASPECTS
The services outlined in this article can vary in cost from private pay to Medicaid. Rates can be based on the services needed. Private pay is straightforward as services are paid for out-of-pocket. Grants, although extremely rare, can usually be utilized for a one-time service. Medicaid can also be used for services if eligibility requirements are met. Medicaid criteria vary by state and by type of Medicaid offered, such as HMO plans and community resources coverage. Medicare covers hospital and short-term services, such as short-term rehabilitation in a skilled nursing facility. Family and friends can be a source of emotional, physical, and financial support. It is OK to ask for help.
Jennifer L. Rowe, LCSW, is a social worker with over 25 years of field experience. She has a strong interest in caregivers, multiple sclerosis, and persons diagnosed with Alzheimer’s disease. She is a nationally certified dementia practitioner (CDP). Rowe can be reached at jenniferrowelcsw@gmail.com.
REFERENCE
National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America. https://doi.org/10.17226/2 3606
RESOURCES
Department of Health and Human Services
● Search local service organizations
● Search the Aging Network
● Resources
SUPPORT GROUPS
● Disease-specific groups
● Caregiver groups
● Local area agencies can assist, such as offices for the aging and social services
● www.caregiver.com—a source for caregivers including a magazine, newsletter, and resources
● www.caregiver.org—Family Caregiver Alliance: National Center on Caregiving
● www.hhs.gov—U.S. Department of Health and Human Services; choose a topic
● www.aarp.org—AARP; can choose topics from legal, health, family, and so on