Caregiving Resources
The Joy of Coping: Overcoming The Stress of Dis-ease
This course is for those struggling with the disabling effects caused by cancer, a brain tumor, multiple sclerosis, stroke, anxiety. . . to name a few. Lessons support and guide learner to reclaim their dignity and life after a debilitating illness has occurred. Lessons can also help caretakers, spouse, and family of a disabled or seriously ill person better understand and support their loved one.
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"No man is an island" ~ John Donne, Meditation XVII
After Disability: The Role of Family Caregivers
By Arthur Soissons-Segal, Ph.D. ~ Therapist and Brain Tumor Survivor
Excerpt from Lesson 5 of
The Joy of Coping: Overcoming The Stress of Dis-ease
We are part of a social system that influences our every move. You may not even be aware of the influences. Your primary social system is your family, the people with whom you live. Larger systems include friends, the world, and the universe. And within each system are elements that influence other systems. Connected by a bond of mutual expectations are systems of religion, politics, and values (such as the role expectations you hold for non-disabled persons). To a great extent, your reality, (your beliefs, your values, your perceptions) reflect the teachings of these systems. Your disaster, your disability sets up a new reality, which conflicts with much of the system's teachings. The disability destroys and/or alters their expectations and tests the strength of the bonds that hold the systems together. You want to reconnect. You ask, "How."
Testing Your Connections
You and the family members are confused and rightly so. To test your connections with your family and by extension with others, you must first look at your connection with yourself and by extension with God. You must go inside yourself, to your soul and ask, "Who am I?" The response is, "You are you." Your soul doesn't recognize the characteristics of your physical self. Why do those physical manifestations of you infect your psyche to the point of psychological disease such as depression or anxiety? And if they do, how do they infect your family and friends? How do they infect the family's expectations of your role performance?
Systems Thrive on Love and on Shared Goals
Disability in itself is not responsible for the family system break down. Rather, it is a faulty connection between family members that is chargeable for the situation. Systems thrive on love and on shared goals. System members are dedicated to their system's survival. The strong system vigorously resists threats of demolition. Yet these same systems still have an urge to grow and to expand. The family in crisis remains strong if it is bonded with love and shared goals for the present as well as for the future.
In a strong family, disability is a major annoyance that members overcome and then move on. However, this is hard work for all involved. The disabled person puts a strain on the family. This must be recognized and accepted by all as an expected result of the situation. Frustration and perhaps anger are normal reactions. Don't fear them. Openly discuss them. Admit their existence and plan ways to cope with them. E.g., acknowledge...
- Caretakers need time off.
- The disabled person needs time to cry.
Although biologically disabled, you are spiritually intact. Allow yourself to have normal spiritual expressions.
Lastly, the family may not understand the nature of your disability. This is especially so if you have a "hidden" disability such as epilepsy or if you are hard of hearing. Brain injured persons easily fatigue and may not be available for late night social affairs. The family is advised to consult with a health educator about their loved one's disability.
No man is an island.
Every person depends on others for emotional support, for love, and for energy. It goes without saying that the love and energy flow are circular. In order to receive, you must give. You need to feel love in order to experience being an important part of the community. And you must return love in order for your family to know you as a giving person. Receipt of love must be returned.
Whether you are the patient or the caregiver, you may find this recent NPR radio show of interest.
Caregiver Resources:
National Family Caregivers Association
Lots of helping hands
The Family Caregiver
Caregiving.com
Mealsonwheels.org
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