As some of you know, I am now in a primary caregivers position that is not AN related, but have been reaching out to support groups to help better educate myself for what lays ahead... and this list was shared with me. Now, in reading this, this is so very applicable, as well, for those that are the caregivers to AN patients. So, I thought I'd share this with you all.... I know I have gained from it... hoping many of you do as well.....
Hugglez.
Phyl
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Ten Things Every Caregiver Needs to Know
YOU ARE NOT ALONE. ASK FOR HELP. This may be new to you-but countless others (over 50 million in this country alone) are caregivers. Many have been successfully coping for as long as families have existed. The trick is to find those who do it well and be open to what they have to teach.
BE AN INFORMED CONSUMER. Whatever the cause of your loved one’s frailty, research and learn all you can about it and available services. Take advantage of discharge planning and home care services. Talk to professionals in the field, and let them guide you, but also use the Internet, and libraries to help yourself understand as much as possible.
WRITE IT DOWN. Buy a small sturdy notepad or address book to log in names, dates and information. Always keep it with you because you never know when you will need to refer back for clarification or reach out to a contact person.
BRAIN OVERLOAD. Recognize that your abilities to concentrate, organize & delegate will be tested, and eventually strengthened as you decide to move forward.
BE ASSERTIVE, NOT AGGRESSIVE. Learn how to effectively communicate with the professionals providing care for your loved one. Learn their names, keep notes so that you can ask direct questions, and note the answers.
DO NOT ASSUME THAT DIRECTIONS ARE FOLLOWED. We are all human. Reviewing any change in your loved ones care plan and or medications is essential. Make yourself available for care plan meetings-you will help the professionals understand your family dynamics, and you will learn of changes and recommendations. Follow through with all involved. Have the changes been implemented? Are those changes are having a positive effect for your loved one?
DESIGNATE ONE FAMILY MEMBER TO BE THE PATIENT’S ADVOCATE. The professionals providing care will need one person to communicate with. All other family members need to support that person the best they can. Use this opportunity to come together; there is no time or energy for negative behavior, whatever your differences-put them aside.
PRACTICE LISTENING. It’s harder than you think, but by learning to listen you can shut off the chatter within you and open yourself to truly engage in what others have to offer.
PROMOTE INDEPENDENCE WITHIN PROPER CONTEXT. We all need to feel that we are in control of our lives. Imagine an event that would render you incapacitated to some degree. How would you feel if your advocate made your feelings and desires less significant than their own? Of course, proper context is the key. But always consider how you would feel in that person’s place.
MAINTAIN AN INDIVIDUAL’S INTEGRITY. Do not project your feelings, wishes or intentions to your loved one. Presumably they have expressed their wishes previously; hopefully all legal documents are in order. Deal in fact, do your best to not make very important decisions when overwhelmed with emotion. Above all pray for grace, and nourish your sense of humor.
