|Changes in Level of Care|
Caregivers are often labeled as victims or sufferers when caring for a loved one. Caregiver are expected to always provide excellent care, to never ask for assistance, and to be a martyr regardless of emotions they are experiencing. High standards seem designed to create guilt, shame, and possibly a sense of failure if a caregiver does not appear to meet the expected criteria. Unfortunately, we often believe that caregivers should conform to a cookie cutter role. This one size fits all view of caregivers ignores the individuality of caregivers, the individuality of those cared for, and how a caregiver’s role changes as a loved ones’ care needs change.
A caregiver’s role can change in the moment or by day, as each day may be different. If, for example, the person being cared for suddenly needs community resources arises, then his caregiver’s role will change. Generational differences may also contribute to the response of the caregiver during times of significant change.
It’is helpful to think of a caregiver’s role changes in the context of changing job titles. Roles can include, but are not limited to:
- banker/financial planner
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 food shopped adapts to an unfamiliar role. Female caregivers may become financial managers when they may never have managed funds before. 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 and because the elderly parent may resent needing help. A son may hire a home care aid to care for his mother and his mother may fire the aid or refuse to let the aid in her home. Or a loved one may independently make needed changes without being asked to do so. An example of this is a person with dementia choosing to give up driving.
The most pressing concerns for many of us who have a loved one who needs help are the “what if” questions. “What if mom falls in the middle of the night?” “What if dad needs more care then I can give him?” The “what ifs” begin as a loved one’s physical or personal safety changes. During the “what ifs” stage services can include:
- home delivered meals
- companion services
- home healthcare
- adult daycare
- senior apartments
- assisted living
- nursing home
One or several in-home services can be used at the same time. Caregivers are not selfish when seeking services to meet the needs of their loved one and of themselves. Often caregivers neglect themselves while providing care. A caregiver can immediately say when their loved one last had medical care, but when asked the last time they had medical care, specialist care, or a dental appointment – often a long pause and a response of not remembering.
Professionals emphasize the need for self-care and mantras like “Before I can take care of others, I must take care of myself.” Often a caregivers’ worst fear is having something happen to him or herself so that they can’t care for their loved one. Taking care of oneself first assists with taking care of a loved one.
When considering the need of in-home care or services outside the home the emotional impact must be considered. It is difficult to ask for help. At some defining moment, 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 behaviors. For a person with Multiple Sclerosis, physical changes in the body may require the need for homecare services such as bathing and dressing. A caregiver may develop his or her 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 are natural as there will be emotional ups and downs regarding if the right decision was made. Remember, caregivers are making decisions based on caring for themselves, the loved one, and what is best for both.
Grief or loss is often experienced as the need for assistance with care requires the need for in-home care. The loss of autonomy is experienced 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 the feelings are a normal reaction, caregivers may feel ashamed about negative thoughts or feelings towards the person in need of care.
A sense of violation to self, loved one, privacy and home is expected as services are provided in the home. These are emotions caregivers feel at some point during care. The frequency, intensity, duration, and type of emotion, although individualized, is not uncommon.
Services not mentioned previously can include in or out-of home respite. Respite can be used for caregivers to have time at home, recuperate from an illness, or attend special events. Costs vary by region and by payor source. Please contact local agencies to obtain respite information.
The services outlined in this article can vary in cost from private pay to Medicaid. Rates are based on the services needed. Private pay is straightforward as services are paid for out-of-pocket. Grants, although extremely rare, can be sought for a one-time service. Medicaid can also be used for services if eligibility requirements are met. Medicaid criteria vary by state, by type, and by for which community resources the coverage pays. 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.
This article discussed care giving through a variety of aspects including perception, role, levels of care, and financial resources. The role of a caregiver can be extremely rewarding to self and the person for whom care is being given. What is most important to remember is that caregivers recognize services available to them and the importance of self-care.
www.eldercare.gov – Department of Health and Human Services
- Search local service organizations
- Search the Aging Network
- 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 – American Association of Retired Persons – can choose topics from legal, health, family etc.