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AS You Look for Resources, Do You Feel Like For Every Step Forward YOu slide three steps back?

Changing Roles Opened My Eyes to the Need for New Resources

   “I’m taking one step forward and slipping three steps back.” That’s the way I felt many days when I first became a caregiver, and I worked in a major academic medical center! Resources were all around me. However, I didn’t know what I needed or how to access them as a patient. How quickly I discovered that life looked different from the patient side of healthcare.

Unprepared For What I Needed To Know

     Overnight I realized that nursing school had not prepared me for caregiving at home.  While I knew where to go for answers to medical questions, trial and error was my teacher for all things related to home care.  When I asked for help at medical appointments, Doctors handed us brochures of information and gave us basic explanations about the medical condition. Then nursing staff printed off information about symptoms and what to do “if.” However, very little of that told me what to do when we got home about living with the condition.  The web became my “go-to” resource.


Hours Spent Looking for Resources

    I spent hours looking for resources, initially in the wrong places or asking the wrong people.  More than once, I collapsed in tears of frustration, wondering how I was going to figure it all out. Eventually, the wrong places would direct me to the right ones, and I found what I needed.

Had Access to Resources at Work

     Since I worked in a hospital, I, fortunately, knew people who knew people.   Therefore, I also had that resource available that most patients cannot access. Now that I’m retired, I truly miss that perk that came from working there. However, through that access and my years of helping others using those contacts, I’ve gained a lot of resource information to benefit others.

Don’t Want Others To Go Through What I Did

   The following pages provide contact information about resources caregivers may find helpful.  The Organizational page is focused more on broad scope organizations such as government or research types.  The other page focuses more on specific diseases, causes, conditions, or concerns (a narrow focus).  I try to stay away from groups trying to solicit revenue for their business. The posting must be to benefit others and be caregiving-related.

Click below to access information about organizations that can help you find out more about your specific situation or condition. 

Organizational Resources 

Organizations Supporting Specific Conditions, Diseases, or Causes


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