As America ages, more of us will find ourselves caring for a spouse, partner, parent, other family member or close friend. In fact, family members and friends provide about eighty percent of long-term care in our country today. The high cost and shortage of trained caregivers, the desire to provide personalized care within the family, and the varied and changing demands of caregiving, all mean that more people are learning new skills and making adjustments in personal, family, and work life as a result of caregiving responsibilities.
Caregiving experiences are just as unique as the people involved. Each caregiver has different needs, feelings, challenges and rewards. And each family member's relationship with the care receiver is unique, influencing expectations and the overall caregiver experience. Much has been learned about the differences in these experiences as the result of a growing body of research. For example:
Rhonda Montgomery, PhD, has been studying family caregiving experiences for more than 20 years with her colleague Karl Kosloski, PhD. Out of their work has emerged a theory called Caregiver Identity Change. In essence, it says the caregiving experience over time involves a systematic process of change--in activities, responsibilities, and in the partner-like relationship between the caregiver and person receiving care. It also involves a change in the way the person giving care views him- or herself in relation to the person being cared for. This new role grows out of the earlier relationship between the two care partners.
The caregiving role unfolds over time as the caregiver takes on greater responsibility--helping with everyday household affairs, personal care and decisions. Caregiving involves an identity change process. At some point, the person providing care begins to identify himself or herself as a caregiver in addition to being a wife, a son or other kind of relationship. The journey is different for each person in terms of when and how we begin to identify ourselves as caregivers. Caregivers who are providing assistance for a short period of time may never see themselves as a caregiver, while those providing care for years may see themselves and act more like a caregiver than spouse or adult child. This is reflected in a statement repeated by many adult children: "I feel as if I'm the parent now and not the child." They have assumed a caregiving identity and lost their identity as an adult child to their parent.
Personal rules and expectations play an important part in how we each feel about what we are doing in the caregiving role. Montgomery and Kosloski find caregivers experience increased levels of stress when a mismatch occurs between what they are doing and what they think they should be doing on behalf of the individual receiving care. Often, the source of distress is not the activity itself, but how the caregiver feels about it.
The first step to lowering caregiver distress is to identify its source. Once this happens, caregivers can work toward reaching a new comfort level. A number of strategies have been shown to help reduce caregiver distress:
Montgomery and Kosloski’s research on the differences in caregiving experiences continues to move forward with the help of a national caregiver registry called the League of Experienced Family Caregivers (see http://www.familycaregivers.uwm.edu). The purpose of the League is to help create better services and resources to support family caregivers. Caregivers share their knowledge and insights by completing brief questionnaires in one of three ways--telephone interviews, mail-in surveys or online.
More than 1,000 caregivers are currently enrolled. The research has identified 22 different categories or pathways of caregiving experiences. These have been further distilled into six broad groups of caregivers. Each is derived from a different set of circumstances. Caregiving experiences are likely to change over time as one moves through the caregiving journey. Thus, a person can move from one category to another.
What is your caregiving experience like so far? Take a look at the caregiver stories in the upper right hand corner of this page to find the caregiver experience that most closely matches your own at this point in time.
What is your caregiving experience like so far? Take a look at the following stories to find the caregiver experience that most closely matches your own at this point in time.
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