Research also reveals that, when caregivers are asked what they want, the majority respond that they want information about coping with being a caregiver. This information takes several forms: knowledge about the disease, comfort with the caregiving role, and dealing with stress.
Caregiver burden is defined as:“ The strain or load borne by a person who cares for an elderly, chronically ill, or disabled family member or other person … The point where the experience is no longer a viable or healthy option for either the caregiver or the person receiving the care.”( Kasuya, RT, Polgar-Bailey P, Takeuchi R. Caregiver burden and burnout: A guide for primary care physicians. Postgraduate Medicine 1000; 108( 7) 119-123).
We also now know for a fact what Dr. Nicholas Christakis from Harvard wrote in the New England Journal of Medicine, Feb. 16, 2006:“ Certain diseases take an especially heavy toll on the health of the spouse-caregiver. It is the disablingness of a condition, not necessarily a terminal nature of the condition, that contributes to caregiver stress.” The Carepartner Plan is designed to help you, the carepartner, to understand and manage your own particular caregiving situation so that the role can continue to be— or return to being— a healthy and viable option for you.
The Carepartner Plan is based on the premise that caregivers’ needs comprise seven broad categories whose order of importance will vary as circumstances and disease symptoms change. Therefore, you should revisit and re-evaluate the seven areas to determine your own particular needs at any given time. The seven categories include:
Disease Education
• Understanding the symptoms and how the diagnosis was made
• Treatments and symptom management
• The impact of the disease on the patient’ s and family’ s everyday lives
• Resources and sources of information
• What does it mean to be a carepartner?
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Time Management
• Make a daily and weekly list of things to do. Make it manageable and realistic.
• Prioritize— do the most important or difficult things first. Check off what’ s done.
• Do several errands at one time, rather than going on multiple, time-consuming outings.
• Take a small task with you if you are going someplace where you may have to wait.
• Delegate what can be delegated.
• Forget unnecessary tasks.
• Take a break when pressure gets too great, or as a reward.
• Don’ t do so much in one area that you cannot be effective in another.
• Break large tasks into smaller, more doable parts.
• Establish and try to maintain routines.
• Recognize that you will have to expend some amount of time and energy on the unexpected and on things beyond your control.