Emotional exhaustion, irritability, insomnia, guilt, resentment, depression, anger, loneliness - -
certainly a long list of negative feelings - - all symptoms attributed to caregiver burnout.
With family caregivers providing nearly 80% of non-paid home care services, it’s no wonder that many organizations offer special programs focused towards the prevention of caregiver burnout. Using respite care, attending caregiver appreciation days or simply scheduling “personal time” off are a few of the recommended prevention strategies. Programs that increase socialization, self-expression and self-value target what caregivers need in order to bring their lives back into balance. In other words, to feel normal again.
On the flip side, ALS patients experience the very same feelings that lead to burnout. According to several recent studies, these negative feelings stem not from having to face ongoing decline in physical function but rather, from lack of socialization, self-expression and self- value.
When it comes to our well-being, caregivers and their patients have the same needs!
Unfortunately for the person living with ALS, there is no opportunity to “take a break,” no “days off” and no convenient respite program; ALS is a 24/7 condition. Can we ever feel balanced again? Especially when the “new normal” doesn’t feel normal at all?
Let me share what's been working for me.
Use the Wellness Model
My past professional work involved teaching community wellness and mind-body health classes through our hospital’s outreach program. Now years later, I’ve found these same wellness principles when applied to my new situation, continue to help me live a balanced life, even while living with ALS.
I use the “Six Dimensions of Wellness,” first developed in 1976 by Bill Hettler, co-founder of the National Wellness Institute. His model represents life elements by which anyone can create their own pathway to optimal living. Today, his theory continues to be taught to health students, is used in professional settings and is widely regarded as a defining theory for the term "wellness."
Trends in our ‘body conscious’ society try to equate optimal health with diet, exercise and looking young. However, Hettler’s model shows us that high level wellness or optimal living can be achieved even by those considered “unwell” based primarily on their age or life condition.
Six Dimensions of Wellness Defined:
Intellectual - In what ways do you stimulate your mind and mental capacity? Do you participate in creative and interesting mental activities? Are you continually learning and gaining new knowledge?
Physical - Do you participate in appropriate physical activity and consume quality nutrition to maintain your health? Do you have regular medical care, take appropriate medications and participate in self-care?
Emotional - How well do you express your feelings, manage your stress and cope with Life's transitions? Do you have high self-esteem, self-control and a strong sense of self?
Spiritual - Are you living each day consistent with your beliefs and values? Do you have purpose and value in your life?
Social - Are you continuing to connect and interact with others? Do you maintain both close and informal social ties?
Occupational - Do you use your skills or abilities to contribute to your family's, or social group or another person's behalf?
As you can see, there are no simple “yes” or “no” answers. In addition, there is overlap between each area and over time as your life changes and evolves your answers will change as well.
How balanced is your life? I suggest that every 3-4 months you come back to this list and evaluate what changes need to be made.
Better yet, sit with your caregiver (who probably is a close family member) and go through the questions together. Not only will you gain a better understanding of each other, you'll both experience the many positive feelings from living an optimal life!
“Wellness is more than being free from illness; it is a dynamic process of change and growth, a conscious, self-directed and evolving process of achieving full potential."
The National Wellness Institute
1. Frontiers in Psychol., 27 November 2012 | doi: 10.3389/fpsyg.2012.00530
Resentment, hate, and hope in amyotrophic lateral sclerosis
C. Oster and F. Pagnini
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Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. Pagnini, F.
3. Neurology. 2000 Aug 8;55(3):388-92.Quality of life in ALS depends on factors other
than strength and physical function. Simmons Z1, Bremer BA, Robbins RA, Walsh SM, Fischer S.
4. Hettler, B. The Six Dimensions of Wellness.