National Dysautonomia Research Foundation
Support, Education, Research

CAREGIVERS COPING WITH CHRONIC ILLNESS

Tips gathered from around the world

	You must take special care of yourself
	You must take special care of your relationships
	Chronic Illness can be forever. Society is oriented towards acute care; we are quite naturally unprepared for the lingering illness of others. Especially if it is our own.
	Each day you must develop a “wait and see” attitude for what can and cannot be done that day.
	Do not assume decision-making roles for your loved one. You must not say “you look tired, you need to go and rest”. Do say: “You look tired. What can I do to help?” There are new sets of rules for everyone.
	The diagnosis of a chronic illness means automatically you will always have an illness in your home.
	Remember that your loved one is still responsible for his or her own LIFE.
	Relationship skills will have to change, your central relationship will require new and better skills.
	Caregiving is not always selfness love transferred to another. In fact. Caregiving can be difficult and exhausting.
	Most Caregivers need and want MORE help and a good nights sleep.
	You must develop a personal support system, just for you.
	You must take care of yourself, or there will be nothing left for anyone else.
	DO NOT hesitate to ask for help from friends and family.
	Keep your sense of humor and develop new interests.
	Have flexible expectations.
	Don’t think of your loved one as “the patient”.
	Maintain friendships.
	Create a telephone support network.
	Spend your energy wisely.
	Set priorities together.
	TAKE CARE OF YOURSELF—stay or get physically active.
	Learn to adapt – maybe you cannot go out to eat, but you could have a picnic in bed, or bring in a meal.
	Join a support group. None around? Put an ad in the paper—they’ll come!
	Your relationship will require new and better skills, if you think just because you have had a great relationship, all will be well, and you will be kidding yourself.
	Do not allow the illness to become the focus of your relationship-- You, Your Spouse and “IT”.
	COMMUNICATION, COMMUNICATION, COMMUNICATION
	Protect your relationship, work together, chronic illness is not for sissies.

COUNT YOUR BLESSINGS

To view a copy of David Levy's presentation on Caregiving from the NDRF conference, please follow the hyperlink below:

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The National Dysautonomia Research Foundation (NDRF) has established this site to help inform afflicted patients, physicians and the general public on the various forms of Dysautonomia. It is our desire to give timely, as well as, accurate information, however NDRF will not be responsible for the misinterpretation of the information provided. Questions or problems regarding this web site should be directed to .

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